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  • Initial nursing care for neonatal hypoxic-ischaemic encephalopathy – a systematic review

    The photo shows a newborn baby being held by a couple of hands

    Introduction

    Approximately 55,000 children are born in Norway every year (1). Moderate to severe perinatal asphyxia occurs in about 1 in every 1000 births, which is around 55 children annually (2). Perinatal asphyxia is a condition characterised by oxygen deprivation before, during and/or after birth. The condition can cause hypoxic-ischaemic encephalopathy (HIE), which is one of the most serious birth complications in neonates (3). According to Sarnat and Sarnat, HIE is classified as mild, moderate or severe based on systematic neurological examinations (4).

    In a broader sense, asphyxia is defined as inadequate tissue perfusion, known as ischemia, where the body’s oxygen supply and the need to eliminate waste products are inadequate. Severe perinatal asphyxia has an adverse effect on the perinatal transition: from life inside the womb to life outside. Ischemia in vital organs such as the brain, kidneys and digestive organs can lead to further damage (5).

    There are many different reasons why perinatal asphyxia affects neonates (7). Aetiology and injury mechanisms of perinatal asphyxia are described in Figure 1. Perinatal asphyxia leads to primary energy failure, with progressive hypoxaemia (decreased oxygenation), hypercarbia (increasing carbon dioxide, CO2) and a combined respiratory and metabolic acidosis (decreased pH). Oxygen-deficient tissue shifts from aerobic metabolism to a significantly less efficient anaerobic metabolism, contributing to energy failure and lactate production (5–7).

    This acute phase leads to reduced production of adenosine triphosphate (ATP). ATP is required for many cellular functions, including maintaining the Na+/K+ pump and intracellular calcium. Failure of the Na+/K+ pump can lead to an imbalance at the cellular level, which can result in cerebral oedema due to swelling brain cells, as well as cellular necrosis and apoptosis (programmed cell death) (6).

    Stabilising the neonate ensures reoxygenation and reperfusion, and temporarily restores cellular functions. This period, lasting up to six hours, is called the therapeutic time window, during which neuroprotective agents can limit the damage that occurs in the subsequent injury phase, caused by secondary energy failure (Figure 1) (6).

    Figure 1. Aetiology of perinatal asphyxia and progression from primary to secondary energy failure

    Therapeutic hypothermia (TH), with a core temperature of 33–34°C for 72 hours, is currently the only treatment that reduces mortality and brain injury in neonates with moderate to severe HIE. For optimal results, TH should be initiated as early as possible, preferably within six hours after birth (8).

    The decision to perform TH is based on whether the neonate meets the so-called A, B and C criteria. ‘A’ criteria include Apgar scores, the need for positive pressure ventilation and acid-base values; ‘B’ criteria involve clinical encephalopathy assessment; and ‘C’ criteria include electroencephalography (EEG) (8). TH improves outcomes in neonates with gestational age ≥ 36 + 0 weeks and above with moderate to severe HIE. However, many infants still die or experience severe disabilities after undergoing TH (3, 6, 9).

    In Norway, TH was introduced in 2007 as a treatment option for neonates with moderate to severe HIE (2). The treatment is advanced and resource-intensive, and only a few regional therapeutic hypothermia units therefore provide TH in Norway (2). In comparison, there are 45 maternity units and 20 neonatal intensive care units. Consequently, many neonates with HIE need to be transferred from the birthing unit to a regional therapeutic hypothermia unit (10, 11).

    TH and other medical interventions for HIE are covered in Norway’s neonatal guidelines (8), but there is no mention of neuroprotective nursing care for this patient group. Recent studies (12, 13) have focused on specialised neuroprotective care for neonates with a recognised risk or who are at risk of brain injury. Specialised neuroprotective care involves assessment, monitoring and protection, including positive touch and pain and stress minimisation. Parents should also be present (12).

    Glass et al. (14) propose a systematic approach, where the focus is on neurology and optimised care and treatment for, inter alia, neonates with HIE. Nurses play a crucial role in identifying early clinical signs and symptoms in at-risk patients (14). Three of the studies considered (12–14) concluded that more competence and research are needed in how specialised care for neurological conditions can improve at-risk neonates’ neurocognitive development.

    Despite the abundance of medical research and literature on neuroprotective treatment, there is a lack of literature reviews viewed from a nursing perspective. The initial stabilisation of neonates with HIE before TH is also inadequately described. Collecting and summarising knowledge about the nurse’s role from medical literature can strengthen the treatment team function and help standardise and improve the patient care pathway. 

    Objective of the study

    The purpose of this systematic literature review was to compile knowledge that can be used in the specialised training of nurses in delivery rooms and hospitals that do not provide TH.

    The research questions are as follows:

    • What knowledge and clinical competence do nurses need to provide neuroprotective care for neonates with HIE during the stabilisation phase up to the point of transferral?
    • What is the nurse’s role in the treatment team during the stabilisation phase with continuous monitoring, clinical assessment and treatment up to the point of transferral?

    Method

    We conducted a literature review using a systematic search process with inclusion and exclusion criteria, and the studies included were subjected to critical assessment and systematic analysis (15). No specially designed computer programs were used in the selection or analysis process. The PRISMA 2020 Checklist was employed (16).

    Search strategy

    The search strategy was based on a PEO form (Appendix 1), which combines the elements Population, Exposure and Outcome (17). Several additional searches were initially performed using ‘nurse’ in the Exposure element, but this significantly limited the results. It was therefore assumed that the nurse’s role is inferred in the care and treatment being studied.

    Articles identified when devising the search strategy indicated that hospitals in the same country can have different criteria for TH, including the gestational age threshold. The Norwegian guidelines provide for neonates with a gestational age ≥ 35 + 0 weeks to be assessed for TH, even though, in principle, the threshold is ≥ 36 + 0 weeks (8).

    We therefore included studies of neonates from 35 + 0 weeks. Systematic searches were conducted in Medline, Embase and CINAHL up until 31 August 2021. The search strategy and history for the various databases are presented in a separate form (Appendix 2).

    The sample of articles is presented in a PRISMA flowchart (16) (Appendix 3). The first and last authors screened titles and abstracts and included articles that matched the inclusion and exclusion criteria specified in Table 1. Four articles (18–21) were identified in the systematic search. In addition, we included one article (22) that was identified when devising the search strategy (Appendix 3).

    Table 1. Overview of inclusion and exclusion criteria in the search strategy

    Quality assessment of studies included

    The studies included were critically assessed by the first and last author separately using the Checklist for Cohort Studies from the Joanna Briggs Institute (23). The first and last author discussed each article until a consensus was reached.

    Analysis strategy

    It was not possible to synthesise the numerical data in the studies included, and the thematic analysis performed by the first author was therefore based on the studies’ textual content (15, 24). Thematic analysis consists of six different phases and ‘is a method for identifying, analysing and reporting patterns (themes) within data’ (24, p. 79). We provide a narrative presentation of the results. As no qualitative studies were identified, we chose a thematic analytical approach to the quantitative data, with a view to highlighting the results that address the research questions.

    Results

    Five cohort studies were included in the literature review: one prospective (18) and four retrospective (19–22). The quality of the articles was considered to be good to high. The quality assessment is further described in the critical assessment of the studies provided in Appendix 4, and in the literature matrix (Appendix 5 – in Norwegian). The studies included (18–22) were from hospitals with TH facilities that have developed and implemented procedures for the neuroprotective care and initial treatment of neonates being assessed for or receiving TH. All hospitals accepted neonates with moderate to severe HIE referred from local hospitals.

    Two of the studies involve nurses specialising in neonatal nursing care (20, 21), one study uses the terms ‘nurse’, ‘neonatal nurse’ and ‘neonatal team’ (18), and two studies only refer to ‘neonatal intensive care unit’ or ‘referring hospital’ (19, 22). Two studies were conducted in the United States (18, 20), two in Canada (21, 22) and one in Australia (19). The studies include a total of 797 neonates with moderate to severe HIE.

    Our analysis identified the following themes: ‘Specialised neuroprotective care based on knowledge and clinical competence’, ‘Nurses play a key role in adhering to protocols, guidelines and documentation’, and ‘Nurses’ role in initiating passive cooling’. A summary of the results is presented in Table 2.

    Table 2. Overview of nurses’ need for knowledge, clinical competence and role in the treatment team

    Specialised neuroprotective care based on knowledge and clinical competence

    Harbert et al. (18) describe how when a neuro-intensive care service was introduced at both a regional therapeutic hypothermia unit and the affiliated local hospital, certain outcome parameters improved, including a reduction in the hospitalisation of neonates treated with TH. Nurses specialising in neurology were considered to be an important part of the treatment team, and there were always at least two of these nurses on duty (18).

    In two of the studies, it emerged that nurses should have knowledge and competence in setting up and interpreting amplitude-integrated electroencephalography (aEEG), with a particular focus on identifying seizures (18, 21). They had a specialised and systematic approach to neonates who qualified for and underwent TH. This significantly reduced the number of identified seizures (38 per cent vs. 14 per cent, p = 0.003). A fall in mortality was also observed (17 per cent vs. 5.4 per cent, p = 0.03) compared to the period before the introduction of the specialised treatment programme (18).

    Mohammad et al. (21) discuss key interventions at local hospitals with specialised training in neuroprotective care. The interventions were intended to stabilise and prepare the neonate for transfer. Simulation training was an important part of the specialised training, and nurses were part of the team that provided this training. Practical training included early identification of HIE symptoms, stabilisation and transfer to tertiary care. 

    The data showed that mortality and/or severe brain injury decreased from 35 per cent to 11 per cent (p ≤ 0.001) after the specialised training (21). A survey of 143 healthcare personnel, including 85 nurses, was also conducted after the specialised training. The respondents reported a supportive learning environment, practical applicability of the skills, and that they were comfortable using the acquired knowledge and skills in clinical practice (21).

    Roberts et al. (19) conducted, but did not evaluate, specialised training prior to their study. Healthcare personnel at local hospitals were given an introduction to assessing, stabilising and initiating passive cooling for neonates with HIE.

    Nurses play a key role in adhering to protocols, guidelines and documentation

    Protocols and guidelines were drawn up in all studies at the respective hospitals to ensure adequate care and treatment (18–22). The study by Carlton et al. (20) showed that 54 per cent of neonates met the TH criteria based on documentation from clinical, physiological and neurological assessments.

    Sixty-five per cent of these neonates were referred by local hospitals, and 65 per cent of those who did not meet the TH criteria had documented mild HIE (20). Standardised documentation was therefore introduced, with a focus on how long it took to assess cooling criteria: clinical HIE assessment according to the Sarnat system, HIE severity, seizures and when passive cooling was initiated (20). 

    Incomplete documentation was also identified by Roberts et al. (19) Carlton et al. (20) found that nurses specialising in neonatal care are ‘frontline providers’ in terms of documentation and clinical assessment.

    Carlton et al. (20) demonstrated that, on average, 4.6 of the 6 categories in the modified Sarnat score were documented. Categories relating to muscle tone, followed by neurological reflexes, were most likely to be missing in the written documentation. This study (20) further showed that when standardised documentation was introduced, documented parameters, including the Sarnat score, increased. 

    Roberts et al. (19) revealed that important parameters such as Apgar score at 10 minutes of age, HIE severity and blood gas levels at < 60 minutes of age were not documented in 36.6, 9.5 and 22.8 per cent of study participants, respectively.

    Nurses’ role in initiating passive cooling

    The temperature of neonates with asphyxia will naturally decrease to a core temperature of 34–35°C within a short space of time. Allowing this to happen, even below 34°C, is referred to as ‘passive cooling’ (8). Two studies (19, 22) reported on passive cooling during stabilisation before transfer to a therapeutic hypothermia unit. Lemyre et al. (22) found that 71 per cent of neonates had reached a core temperature of 33–34°C within six hours of birth, and that the desired core temperature was reached earlier in neonates with severe HIE than with moderate HIE.

    Harbert et al. (18) reported that the time to the desired core temperature increased after both the regional therapeutic hypothermia unit and the local hospital introduced specialised neonatal care (203 ± 110 mins. to 249 ± 115 mins., p = 0.05). Roberts et al. (19) found that cooling initiated by the referring hospital was started significantly earlier (p < 0.01) than prior to specialised training with an increased focus on passive cooling, and neonates reached the desired core temperature earlier (p < 0.01). Both studies (18, 19) reported overcooling (33°C) but did not mention any serious complications.

    Lemyre et al. (22) observed that many healthcare personnel only initiate passive cooling after consulting the regional therapeutic hypothermia unit. This occurred in a total of 50.9 per cent of cases. Mohammad et al. (21) reported an increase in the number of those starting TH within six hours of birth in connection with specialised training (80.5 per cent before and 95.5 per cent after [p = 0.003]). In addition, the number of neonates who had reached the desired core temperature upon arrival at the therapeutic hypothermia unit increased (28 per cent before and 65 per cent after [p = 0.03]).

    Discussion

    Nurses’ need for knowledge and clinical competence relates to specific elements of patient care, with a view to ensuring swifter identification of at-risk patients and providing them with adequate care and treatment. These areas take priority in the specialised training across several of the studies included (18, 19, 21) and can be linked to nurses’ clinical judgement (25).

    According to Benner (25), the nurse’s clinical judgement relates to their ability to act. This skill evolves through the progression from novice to advanced beginner, competent practitioner, proficient practitioner and expert. Nurses at the expert level assess the overall situation and act based on a complex picture, unlike the novice, who considers the separate components of the situation individually (25).

    According to the Norwegian Directorate of Health, the minimum requirement is one specialist nurse per shift in departments with the lowest treatment complexity, known as category 2 (26). These departments must be able to ‘initiate passive cooling for children with brain injury due to oxygen deprivation before transferral to another department’ (26, p. 7). This task is likely to need specialised training. The results from our literature review indicate that such specialised training in neuroprotective care in the early phase impacts on certain outcome parameters in this patient group (18, 21). 

    Other research shows a reduction in the number of neonates with brain injuries after specialised care was implemented. It also shows a reduced incidence of seizures that require treatment in moderate to severe HIE (27). Based on this, we therefore believe there is a correlation between a strengthened focus on specialised care and improved patient outcomes. Our literature review shows that specialised training, particularly at local hospitals but also at regional therapeutic hypothermia units, can improve the quality of patient care pathways (18–21).

    Simulation training helps consolidate theory and practice, and the nurses felt more confident in caring for patients after the training (21). In order to translate theory into practice, nurses need to see connections, and this is linked to their gradual evolution from novice to expert (25).

    Specialised training can improve patient outcomes

    The results confirm that specialised neurological care requires nurses to address all aspects of neonates in need of TH: make observations, conduct clinical assessments and implement appropriate and necessary interventions (18–22). Based on Benner’s theory (25), we argue that experts have the ability to make a much more complex overall assessment than novices. The literature review shows that nurses play a central and active role in clinical patient care in all stages, and that specialised training can improve patient outcomes (18, 21).

    Nurses and specialist nurses are pivotal to the implementation of measures that enhance knowledge and competence, as well as to carrying out targeted clinical patient care (18, 20, 21). The literature review sheds light on how nurses practise their profession in complex patient situations that require knowledge and competence as well as crucial tools, such as guidelines, flowcharts and protocols (18–22).

    Several of the studies included highlight training in the use and interpretation of aEEG or EEG (18, 21). The study by Harbert et al. (18) shows that such knowledge and competence combined with a more holistic approach reduce the incidence of identified seizures. Recent research indicates that a nurse’s knowledge and competence in assessing clinical observations and interpreting aEEG have a bearing on how quickly interventions are implemented (28). 

    A stronger focus on targeted training is needed to optimise and standardise clinical practice (29). It is crucial that seizures are identified quickly. This highlights the need for nurses to have in-depth knowledge of the clinical manifestation of seizures and why early identification and treatment are essential (29).

    Early initiation of passive cooling at the local hospital is crucial

    Two of the studies in the literature review (19, 22) demonstrate that early initiation of passive cooling at the local hospital is crucial for the outcome. The need for extensive resuscitation can be interpreted as an objective sign of severe asphyxia and can inform assessments of the severity of the asphyxia. This contributed to earlier initiation of passive cooling (22). Conversely, the need for advice and guidance delayed the initiation of passive cooling (22).

    In comparison, empirical data from Roberts et al. (19) show that the time until the desired core temperature was achieved was significantly shorter when the local hospital initiated passive cooling. This finding is consistent with other findings in our literature review, indicating a marked increase in the number of neonates undergoing cooling within the first six hours of birth. We also identified an increase in the proportion of neonates reaching the desired core temperature upon arrival at the therapeutic hypothermia unit (21).

    However, Harbert et al. (18) demonstrated that the time taken for the infant to reach the desired core temperature increased after the introduction of specialised care. Possible reasons may be related to careful temperature monitoring to prevent overcooling. Two studies (19, 22) described several cases of overcooling, but there were no associated complications. Other research indicates that, upon departure from the local hospital, the basal temperature of neonates with severe HIE was 0.9 °C lower than those with mild and moderate HIE (30). 

    This finding highlights the importance of continuous temperature monitoring. Nurses have numerous tasks to take care of during the initial phase and must have the knowledge and competence needed to master the complexity of the tasks. As an extension of this, nurses must possess knowledge about various clinical observations and assessments that have a bearing on the initiation of passive cooling for neonates with moderate to severe HIE. They must also be aware of the potential complications of overcooling. Furthermore, part of their role in the team entails ensuring that unnecessary delays are prevented.

    Patient safety can be impacted by the quality of documentation

    One of the articles included pointed out that the nurse is a ‘frontline provider’ of crucial aspects of clinical practice and thus plays a key role in the treatment team (20). This is consistent with other research stating that a nurse specialising in neonatal care is a key contributor to the application of evidence-based practice to improve services and elevate competence (31). Incomplete documentation was also found in several of the studies included (19, 20).

    Specialist nurses are portrayed as important contributors to the documentation and execution of clinical assessments in this patient group (20). Incomplete documentation in the initial phase may lead to questions about whether the infant really qualifies for TH. This can result in administering TH to neonates who do not meet the criteria for treatment, or failing to identify neonates who do meet the criteria (20).

    The quality of the documentation of clinical assessments can impact on patient safety and the professional standard of treatment, which can have both positive and negative implications for the infant. The European guidelines for newborn resuscitation emphasise the importance of thoroughly documenting interventions and clinical observations to ensure adherence to relevant protocols for further care and treatment (32). Incomplete documentation combined with insufficient knowledge and competence may result in infants with moderate to severe HIE not being identified and, consequently, not receiving the necessary care and treatment.

    Methodology

    The study meets the requirements for a systematic review article with literature searches in three relevant databases (15). One of the weaknesses of our study is the lack of systematic searches in Scopus. Another is that we did not use search terms such as ‘training’, ‘care’ and ‘treatment’. The first and last author contributed to the inclusion and exclusion processes for primary articles, as well as the individual quality assessments of studies.

    A further weakness of the literature review is the limited number of studies identified. The limited number of studies that met the inclusion criteria suggests a need for more research on the topic. A majority of the studies (18, 20, 21) scored high on methodological quality, which strengthens our literature review and its findings.

    Conclusion

    This systematic review demonstrates that standardising specialised care and treatment for patients with HIE can help improve certain outcome parameters. Nurses providing neuroprotective care in the initial stabilisation phase before transfer to regional therapeutic hypothermia units require advanced knowledge and clinical competence. They also play a key role in the treatment team.

    Nurses need knowledge and clinical competence in the early identification of at-risk patients, stabilisation and preparation for transfer. They also need knowledge about the potential complications of overcooling, as well as an in-depth understanding of the effects and adverse effects of TH. Clinical competence involves the ability to use advanced medical technical equipment, including the use and interpretation of aEEG or EEG.

    They must also be able to conduct relevant clinical assessments and actively use protocols, guidelines and checklists. Finally, they must help ensure that documentation is adequate.

    The authors declare no conflicts of interest.

    Open access CC BY 4.0

    Peer-reviewed article
    Publication type
    Publication Year
    2023
    Edition Year
    18
    Publication Number
    94179
    Page Number
    e-94179

    Early identification, stabilisation and transfer can lead to fewer seizures and shorter hospital stays for neonates who were deprived of oxygen during birth.

    Article is Peer Reviewed
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    Research
    English
    Sammendrag

    Background: Hypoxic-ischaemic encephalopathy (HIE) is a serious birth complication that occurs in approximately 1 in every 1000 births in Norway. Many of the infants who are affected are born in delivery rooms or hospitals with no therapeutic hypothermia facilities. These infants must be stabilised before being transferred to a regional therapeutic hypothermia unit for further treatment. Neuroprotective care in this stabilisation phase, including from a nursing perspective, is an under-researched area.

    Objective: To collect and summarise knowledge for use in specialised training for nurses working in delivery rooms or hospitals with no therapeutic hypothermia facilities.

    Method: Systematic literature review and reporting in PRISMA. Literature searches were conducted in the Medline, Embase and CINAHL databases. We performed a thematic analysis of quantitative studies, and the results are presented in a narrative form.

    Results: Out of 1863 titles identified, we excluded 1859. One study was identified outside the systematic search, resulting in the inclusion of five cohort studies involving a total of 797 neonates with moderate to severe HIE. In the analysis, we identified the following themes: ‘Specialised neuroprotective care based on knowledge and clinical competence’, ‘Nurses play a key role in adhering to protocols, guidelines and documentation’, and ‘Nurses’ role in initiating passive cooling’. Specialised training for nurses needs to focus on early identification, stabilisation and transferral, which can contribute to reduced mortality, fewer seizures and shorter hospital stays. The nurse has a specific role to play in relation to documentation and must ensure adherence to guidelines for the assessment and selection of neonates for therapeutic hypothermia.

    Conclusion: Nurses who work with neonates should receive specialised training and possess clinical competence in the early identification, stabilisation and transfer of at-risk patients to tertiary care. Adhering to guidelines and documenting assessments are crucial for identifying neonates who meet the criteria for therapeutic hypothermia. The literature review indicates that nurses play a key and active role in the treatment team. It also shows that specialised training can improve patient care standards and outcomes.

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    • Enhancing nurses’ knowledge and competence can help improve how the treatment team functions, through conducting and documenting systematic clinical assessments in an early phase of hypoxic-ischaemic encephalopathy.
    • A stronger focus on the nurse’s role can enhance the quality of patient care through closer adherence to protocols, including the initiation of passive cooling.
    • Early identification, stabilisation and transfer can improve patient outcomes.

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    27.       Roychoudhury S, Esser MJ, Buchhalter J, Bello-Espinosa L, Zein H, Howlett A, et al. Implementation of neonatal neurocritical care program improved short-term outcomes in neonates with moderate-to-severe hypoxic ischemic encephalopathy. Pediatr Neurol. 2019;101:64–70. DOI: 10.1016/j.pediatrneurol.2019.02.023

    28.       Apers WMJ, de Vries LS, Groenendaal F, Toet MC, Weeke LC. Delay in treatment of neonatal seizures: a retrospective cohort study. Neonatology. 2020(117):599–605. DOI: 10.1159/000509282

    29.       Gossling L, Alix JJP, Stavroulakis T, Hart AR. Investigating and managing neonatal seizures in the UK: an explanatory sequential mixed methods approach. BMC Pediatr. 2020;20(1):36–50. DOI: 10.1186/s12887-020-1918-4

    30.       Carreras N, Alsina M, Alarcon A, Arca-Díaz G, Agut T, García-Alix A. Efficacy of passive hypothermia and adverse events during transport of asphyxiated newborns according to the severity of hypoxic-ischemic encephalopathy. J Pediatr. 2018;94(3):251–7. DOI: 10.1016/j.jped.2017.05.009

    31.       Rød I, Dahl T-M, Honne E, Kynø N. Nyfødtsykepleier funksjons- og ansvarsområder. Oslo: Barnesykepleierforbundet NSF; 2021. Available at: https://www.digiblad.no/barnesykepleierforbundet_nsf/nyfodtsykepleier_funksjons-og-ansvarsomraader/# (downloaded 16.09.2021).

    32.       Madar J, Roehr CC, Ainsworth S, Ersdal H, Morley C, Rüdiger M, et al. European resuscitation council guidelines 2021: newborn resuscitation and support of transition of infants at birth. Resuscitation. 2021;161:291–326. DOI: 10.1016/j.resuscitation.2021.02.014

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  • Physical examination and health assessment by nursing students in clinical training

    The photo shows the back of a woman wearing a bra. A nurse knocks her fingers on the woman's back, listening to her lungs, performing percussion.

    Introduction

    The physical examination and health assessment (PEHA) method is based on four fundamental pillars of examination methodology: inspection, percussion, palpation and auscultation. It is argued that, through systematic observation of objective findings, this method facilitates early detection of conditions and prevents clinical deterioration (1).

    PEHA skills can also provide nurses with a foundation for more precise reporting, as they gain a broader understanding of and can better describe the patient’s symptoms and medical problems. Nurses become familiar with multiple aspects of the clinical picture and gain a better understanding of doctors’ documentation (2). Developing nursing students’ clinical skills will improve patient care in the future (3).

    PEHA in the bachelor’s programme in nursing

    The core tasks of a nurse involve assessing patients’ individual needs for nursing care, implementing relevant interventions, and evaluating the efficacy of these together with the patient and other healthcare personnel. Using validated assessment tools undoubtedly improves patient safety as a result of early identification of changes in symptoms and clinical course. Such tools can also facilitate more precise documentation and communication among healthcare personnel (2).

    Patient care and the nurse’s role are constantly evolving. A growing number of people will live significant portions of their lives with multi-morbidities. In order to address the demographic changes in society in general and within healthcare services specifically, new or expanded learning objectives are needed for nursing students. Nurses are increasingly encountering severe medical conditions that require nursing home or community nursing interventions. Improving nurses’ skills in the clinical assessment of frail patients in primary care settings is likely to reduce the number of unnecessary hospital admissions (4).

    According to Norway’s regulations on national guidelines for nursing education, students should be able to apply knowledge of health and illness to systematically observe, assess, decide on, implement and document appropriate nursing interventions. They should also be able to evaluate the effect of these and make adjustments as needed (5). 

    These regulations highlight the importance of PEHA skills, but the wording of the clause leaves the expected level of knowledge and skills in bachelor’s programmes open to interpretation. Educational institutions are free to adopt different methods and practices in relation to this area of competency. The Norwegian University of Science and Technology (NTNU) introduced PEHA learning objectives in the bachelor’s programme in nursing in 2017 (6).

    The goal of introducing PEHA was to enhance future nurses’ competence in comprehensive assessments and evaluations of the patient’s health status and needs, particularly within primary care settings.

    Various terms are used to describe the methods nurses use to collect data during physical assessments of patients. In international research, terms used include ‘head-to-toe assessment’, ‘physical examination techniques’, ‘physical examination and health assessment’ and ‘physical assessment skills/techniques’ (2, 7).

    In Norwegian nursing literature and research, as well as in the field of practice, there is no established consensus on what physical examination and health assessment entails. Different terms and acronyms are used for nurses’ clinical assessment of the patient. Monitoring vital parameters was an important component in nursing curricula long before the introduction of PEHA. The National Early Warning Score (NEWS) is one of the tools included in PEHA. This tool is validated for identifying exacerbations in a variety of conditions and facilitates concise communication between healthcare personnel (8). 

    NEWS is a recognised tool, particularly for assessing the course of infection and sepsis and sepsis-related organ failure (9). In Norway, NEWS was introduced as part of patient safety efforts through the initiative ‘Early detection of clinical deterioration’, and has now been included in national clinical guidelines from the Norwegian Directorate of Health (10). However, PEHA differs from NEWS in that PEHA encompasses more than the monitoring of vital parameters and has a focus on the physical examination of all organ systems (2, 4). 

    Purpose of the study

    The PEHA method primarily systematises examinations that are well-known within nursing but also includes methods that have not traditionally been part of the nursing role. More advanced examination techniques involving percussion and auscultation have traditionally been the preserve of doctors, and still are to a large extent.

    Clinical examinations such as auscultation and percussion of the lungs, heart and abdomen were incorporated into nursing curricula relatively recently. Nurses are not, however, expected to be able to make a diagnosis, but they should be able to distinguish between normal and abnormal findings.

    The curriculum requires nurses to actively apply their acquired skills in practice. The long-term goal is for nurses to use PEHA in clinical practice, but changing the nursing role takes time. Insufficient hands-on experience with the method during clinical training may prevent the transfer of skills to their roles as qualified nurses. Consequently, the knowledge they have acquired is more likely to fade after the end of their studies. In order to investigate whether the curriculum is tailored to clinical practice, we posed the following research question:

    ‘To what extent do nursing students use PEHA skills in clinical training?’

    Method

    Design of the study

    We conducted a cross-sectional study using the University of Oslo’s Nettskjema questionnaire. Third-year students in the bachelor’s nursing programme at NTNU were invited to complete an electronic questionnaire (Appendix 1 – only in Norwegian) (11). The survey focussed on students’ use of the various examination and assessment methods that had been covered in the PEHA component of the curriculum. The survey also included free-text questions about students’ experiences with applying this knowledge in clinical training, as well as the barriers to doing so.

    The selection of examination and assessment tools taught in the bachelor’s programme in nursing at NTNU is based on a study by Nord University (2) that summarises previous research on which examinations nurses perform internationally, including in the United States and Australia. PEHA is defined as a comprehensive physical examination by means of inspection, palpation, percussion and auscultation, in addition to psychological and mental health screening (2, 12).

    Our study encompassed 20 core PEHA skills in the bachelor’s programme in nursing curriculum at NTNU. The selection represents various techniques within inspection, palpation, percussion and auscultation, as well as head-to-toe assessment, pain assessment (NRS and MOBID-2), screening for anxiety and depression (GAD-7 and PHQ-9, respectively), systematic data collection of vital parameters (NEWS), mental status assessment (ABCT) and level of consciousness assessment (ACVPU and GCS). 

    We formulated the questions to capture the frequency of students’ reported use of the various skills in relevant patient situations during five clinical placements, each lasting eight to ten weeks. The following is a sample question from the questionnaire: ‘How frequently do you perform ‘auscultation of the lungs’ when assessing a patient’s lung condition?’

    The response alternatives are based on a Likert scale (0 = Never, 1 = Very seldom, 2 = Seldom, 3 = Often, 4 = Very often, 5 = Routinely) (17). In the results, average and median scores of ≥ 2.5 indicate regular use and < 2.5 indicates infrequent use of the techniques.

    The results were analysed in SPSS, version 28, and are presented with a descriptive design, including mean scores with corresponding standard deviations and median scores with corresponding interquartile range. Free-text responses were analysed categorically and presented thematically along with some representative quotes.

    Fakta
    Abbreviations
    • ABCT = Appearance Behavior Cognition Thought processes and perceptions
    • ACVPU = Alert Confusion Verbal Pain Unresponsive
    • GAD-7 = General Anxiety Disorder-7
    • GCS = Glasgow Coma Scale
    • MOBID-2 = Mobilisation – Observation – Behaviour – Intensity – Dementia
    • NEWS = National Early Warning Score
    • NRS = Numeric Rating Scale
    • PHQ-9 = Patient Health Questionnaire-9

    Sample

    On 25 February 2022, the questionnaire was emailed to third-year students (n = 193) taking a bachelor’s degree in nursing. The deadline for submitting the completed questionnaire was 15 March 2022. Most respondents completed the questionnaire electronically during a class lesson. The sample of respondents was mostly made up of the students who attended this lesson.

    The respondents were asked to base their answers on their experiences at all five of their clinical placements in nursing homes, community nursing, mental health care and surgical and medical wards. A total of 75 nursing students in their sixth semester (38.9%) completed the questionnaire and were included in the study. 

    Ethical reflections

    The data collected are anonymised and do not therefore contain information that can identify individuals, either directly, indirectly or through an email or IP address or an identifying key. Use of the Nettskjema form ensured anonymity (11).

    It was not possible to identify individuals at any point during data collection. There was therefore no requirement to notify the Norwegian Agency for Shared Services in Education and Research (Sikt) of the project or to seek any other type of approval. We informed the respondents about the purpose of the study, voluntary participation and anonymity in an information letter that was emailed to them along with the invitation to participate in the study. 

    Results

    The results regarding students’ application of PEHA skills in relevant patient situations during clinical training are shown in Table 1. Seven out of the 20 PEHA examination techniques are regularly used by the respondents (median = 3–5, mean score = 2.53–4.80). Thirteen of the 20 are seldom or never used (median = 0–2, mean score = 0.47–1.87).

    Examinations and assessments of vital parameters, pain assessments using the NRS, level of consciousness assessments using ACVPU, and inspections of the oral cavity were among those most frequently performed. 

    Table 1. Nursing students use of PEHA techniques for ABCDE

    NEWS appears to be the most frequently used tool, with 71% of respondents indicating that they always use this for the systematic collection of data on vital parameters. All respondents stated that they use the tool often or routinely in relevant patient situations. In comparison, 88% of respondents seldom auscultate the lungs, 93% seldom or never auscultate the heart, and 72% seldom or never perform a head-to-toe examination (Figure 1). 

    Figure 1. Percentage of nursing students for each response alternative

    Seventy-five of the respondents agreed or strongly agreed that they have a good understanding of what PEHA entails and in which patient situations the various examination techniques are useful.

    In response to the statement suggesting that the theoretical knowledge they had learned on PEHA provided them with sufficient competence to perform and practise the examination methods in clinical training, 52% of the respondents disagreed or strongly disagreed, while 48% agreed or strongly agreed. Furthermore, 57% reported being comfortable explaining what PEHA entails to colleagues in the field of practice.

    Several respondents argued that PEHA was useful for obtaining a comprehensive overview of the patient’s condition and facilitating interaction between nurses and doctors. They also expressed that there were several barriers to using PEHA techniques. Some believed that few nurses in clinical practice use PEHA and that they do not have the time to do so. Several of the examinations were considered part of the doctor’s remit, making it challenging for the students to introduce new routines in clinical practice (Table 2). 

    Table 2. Nursing students’ free-text responses, categorised thematically

    Discussion

    The respondents reported regularly performing examinations and assessments of the patient’s level of consciousness, vital parameters, and using the NRS self-reporting tool to assess pain in clinical training. However, they seldom or never used the study’s other PEHA techniques in clinical training. 

    Nursing students’ use of PEHA

    The respondents consider PEHA to be a useful tool for conducting comprehensive patient assessments, enhancing the interaction between doctors and nurses, and quickly identifying clinical deterioration.

    Respondents reported using 35% of the study’s examination techniques in relevant patient situations in clinical training. The PEHA examinations most frequently performed are included in NEWS, such as measurements of respiratory rate, oxygen saturation, blood pressure, pulse rate, level of consciousness (ACVPU), temperature and subjective pain (NRS).

    A significant proportion of the PEHA examinations in the study were not performed by the respondents in clinical training. This finding is not surprising when compared to research in countries with more experience in advanced clinical examinations in nursing care. An Australian study (13) shows that only 34% of the examination techniques that nurses learn are regularly used in practice. 

    A study from the United States (14) found that nurses used 30 of the 126 surveyed examination methods regularly. Core techniques in inspection and general observation were heavily overrepresented in the physical assessments, and one-third of the methods used were related to cardiovascular and respiratory assessments.

    An Italian study of nurses in intensive care units and medical and surgical wards showed that 20 out of 30 core physical assessment techniques were used regularly. Auscultation of heart, lung and bowel sounds was seldom or never performed (15).

    Other studies have similar findings (7) and question whether it is appropriate to teach nursing students a broad range of advanced clinical examination skills that are not used in practice. This argument is supported by a Norwegian study by Egilsdottir et al. (16), who studied a selection of 30 assessment techniques covered in the Norwegian nursing curriculum: Basic Physical Assessment Skills (B-PAS). They found that auscultation and percussion were among the skills that were seldom used in clinical training (16). 

    Factors of significance for the application of PEHA in the clinical setting

    One of the barriers highlighted by the respondents is that only a small number of nursing supervisors perform PEHA in practice. This limited access to role models with proficiency in such methods limits students’ opportunities for guidance. Nursing students are taught not to diagnose patients, but they should be able to distinguish between normal and abnormal findings in order to further document a patient’s health status and report this to a doctor or other health personnel.

    Nevertheless, the respondents found it challenging to initiate patient assessments that are not considered part of the nurse’s remit. Barriers to using PEHA as a working method are linked to time pressure, constant disruptions to their work, the absence of common practice, a lack of role models in the nursing profession with proficiency in the methods, lack of confidence in own clinical skills and unclear demarcation lines between nurses and doctors (17).

    The respondents suggest training practice supervisors and establishing closer cooperation with the field of practice in order to enhance PEHA competence in clinical practice. Results from a Norwegian study by Bing-Jonsson et al. indicate that healthcare personnel in nursing homes and community nursing services have insufficient competence in comprehensive assessments and advanced procedures to provide the necessary health care (18). 

    Training nursing students in PEHA can be considered a means of reducing the gap between the expected and actual competence of nurses in primary care settings. However, the differing approaches to comprehensive clinical assessment in practice and in the nursing curriculum present challenges for nursing students (19).

    The results from our study show that nursing students need extensive practice in the various skills. The respondents also call for clarification of the context in which some or all PEHA methods should be used. About half of the respondents felt that the PEHA component of the curriculum did not provide a sufficient foundation for practising these skills in clinical training. The nursing students expressed a desire for more training in auscultation as this is considered a potentially valuable skill in clinical practice. Studies have shown that skills in auscultation of the lungs, heart and abdomen are mainly developed through clinical practice and the associated reflection on the patient’s health status (20, 21).

    However, it is unclear whether nurses’ use of PEHA impacts on patient outcomes and patient safety (22). Auscultation of the heart has been found to have limited accuracy in detecting heart disease in asymptomatic patients and is considered a poor diagnostic tool for doctors in primary care settings. Easy access to echocardiography is proposed as a more patient-safe strategy for patients exhibiting symptoms of coronary disease (23).

    The respondents considered PEHA potentially useful for the field of practice. They argued that PEHA can contribute to a prompt and comprehensive assessment of the patient’s condition, early detection of clinical deterioration and improved workflow and interaction with the doctor. Previous research has shown that nurses with advanced clinical skills feel that they would not be able to identify serious developments in the patient’s health without this competence. Experience and practice also lead to a deeper understanding of the causes of and correlations between symptoms and illness progression (24).

    Nurses involved in training nursing students in clinical practice, however, consider there to be shortcomings in their professional capabilities to provide guidance. They express that it is difficult to keep abreast of the students’ curriculum and learning objectives and to effectively apply the theoretical knowledge in practice (25).

    Nurses with competence in using PEHA methods as a basis for assessment will be well-equipped for clinical practice in various parts of the health service. Academic learning that is relevant to practice prepares nurses for performing relevant examinations and interpreting the results. This enhances their clinical competence and confidence, thereby improving patient care (3). 

    Reflections on methodology

    The questionnaire in this study has not been validated for use but is inspired by previous studies in the field (3, 13, 14, 26). We used a Likert scale for the response alternatives with a view to measuring self-reported use of PEHA methods.

    The low response rate (38.9%) means that the reliability of the results must be interpreted with caution.

    One of the weaknesses of using a questionnaire to collect data is that respondents can interpret the questions and response alternatives differently (17). However, the questions were formulated in a way that minimises misinterpretation. The study is limited to a selection of clinical examinations and does not encompass all the tools and methods taught as part of the nursing curriculum. This is because we wanted to gain an insight into the practical skills acquired by nursing students through their use of different PEHA methods.

    The study concerns the examinations and assessments covered in PEHA in the relevant nursing curriculum. The findings of the study may be influenced by the institution’s approach to teaching PEHA and may not therefore be fully generalisable to institutions employing other approaches. 

    The findings primarily shed light on the gap between theory and practice and highlight the challenges of learning PEHA techniques in clinical training. This is particularly relevant where the practice supervisor does not have competence in this area. The study’s findings can raise awareness and stimulate reflection that can be valuable when developing nursing curricula. They can also help to inform the discourse on the potential task-shifting implications for nurses’ areas of responsibility as a result of their application of PEHA. 

    Conclusion

    Effective strategies should be incorporated into nursing curricula for introducing students to clinical examinations. Their progression through the bachelor’s programme should be realistic and relevant. Closer cooperation with the field of practice is needed to strengthen the supervision of nursing students in clinical training. Nurses who have not been taught PEHA as part of the nursing curriculum must be given the necessary training. NTNU is currently offering external courses in PEHA for nurses in the health service.

    The societal mission of nursing education is to develop knowledge and competence that is useful for the health service. However, introducing new elements in the curriculum, such as PEHA training, to clinical training without adequate preparation of practising nurses will widen the gap between academic learning and clinical practice.

    The study shows that students are not achieving the intended learning outcomes for PEHA. If the teaching of PEHA is more tailored to the needs of different patient groups, students would have a better understanding of when to use components of PEHA in specific patient situations. Increasing the focus on integrating theory and practice can facilitate students’ learning and proficiency. 

    If the teaching of PEHA is adapted to a more realistic level and scope, it may enhance students’ comprehension and confidence in applying this method. This will increase the likelihood of the learned knowledge being incorporated into nursing practice and prevent it from fading after the end of their studies.

    More knowledge is needed on how nurses’ use of PEHA impacts on patients’ health, and to what extent it facilitates good decisions about treatment. Nurses bear a particularly significant responsibility when low sensitivity methods are employed in cases where this has implications for the assessment and the decision on whether to consult a doctor.

    If nurses perform clinical examinations that were previously the preserve of doctors, and no abnormal findings are detected in a sick patient, this could increase the risk of treatment delays or omissions. It also entails the nurse assuming more clinical responsibility. We believe there is a need for studies that further examine the correlation between the application of PEHA and students’ comprehension of and response to various clinical findings.

    The authors declare no conflicts of interest.

    Open access CC BY 4.0

    Peer-reviewed article
    Publication type
    Publication Year
    2023
    Edition Year
    18
    Publication Number
    94262
    Page Number
    e-94262

    Only 7 out of 20 PEHA skills were regularly applied in relevant patient situations in clinical training.

    Article is Peer Reviewed
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    Innsendte kommentarer kvalitetssikres før publisering. Kvalitetssikringen skjer i vanlig arbeidstid.
    Research
    English
    Sammendrag

    Background: Physical examination and health assessment (PEHA) has been an integral component in nursing curricula and professional development in recent years. PEHA training is intended to enhance nurses’ skills in the systematic collection of objective findings. It can also help them when evaluating and planning interventions.

    Objective: In this study, we aimed to investigate the extent to which nursing students use PEHA skills in clinical training.

    Method: In a cross-sectional study, nursing students at a Norwegian university were asked to complete an electronic questionnaire in their sixth semester. We present statistical analyses with a descriptive design. Free-text responses are categorised and presented thematically.

    Results: A total of 75 nursing students answered the questionnaire. The respondents only practised 7 out of 20 PEHA skills regularly in relevant patient situations. Most PEHA skills (65%) are seldom or never used by nursing students in clinical training. The respondents highlighted the gap between theory and practice. They expressed that nursing supervisors lack knowledge of certain PEHA practices, which is a significant barrier to their clinical training. 

    Conclusion: Nursing curricula encompass a much broader range of clinical examinations than those regularly performed in clinical practice. The findings of this study can be used to inform the further development of nursing curricula. Consideration could be given to reducing the range of examination methods taught so that students can attain better proficiency in the methods used in clinical practice. If enhancing this competency in both present-day and future nurses seems beneficial, closer cooperation needs to be established between educational establishments and healthcare services. Studies are also needed into the correlation between the use of clinical examinations and students’ comprehension of and response to various clinical findings. 

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    The photo shows the back of a woman wearing a bra. A nurse knocks her fingers on the woman's back, listening to her lungs, performing percussion.
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    Referansene 17–26 ble lagt til i referanselisten (04.01.2024).

    • The NEWS tool is regularly used by nursing students in clinical training. The tool measures vital parameters such as pulse rate, blood pressure, temperature, respiratory rate, oxygen saturation, level of consciousness (ACVPU) and subjective pain (NRS).
    • In clinical training, nursing students seldom perform other clinical examinations and assessments that are part of PEHA.
    • Nursing students are calling for more hands-on practice in the use of PEHA. They would like clarification in the curriculum of relevant patient situations and recommended use of the various methods. They would also like practice supervisors to enhance their competence in PEHA.

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  • Experiences with a telemedicine service for patients with COPD: a case study

    The photo shows a woman sitting in a sofa talking to a doctor via her Ipad. In the other hand she is holding a mobile phone where she is sending her vital data via an app

    Introduction

    Patients with chronic obstructive pulmonary disease (COPD) face a severe symptom burden (1) and frequent hospitalisation (2). Preventive measures aim to enable the patient to manage their disease, thereby reducing morbidity and the uptake of health services (3). With digital monitoring, patients can be more closely monitored, and this can be done outside the hospital setting (4).

    Digital home monitoring, formerly known as remote medical monitoring, is a telemedicine service in which healthcare personnel assess the patient’s health status remotely and provide guidance, medical advice and care in the patient’s own home (5, 6). This method of monitoring helps the patient feel more in control, which in turn can contribute to better self-management of the disease (7). The shift towards greater follow-up by the primary healthcare service and through digital services is rooted in, inter alia, Report no. 26 to the Storting (2014–2015) (8) and Report no. 29 to the Storting (2012–2013) (9).

    Telemedicine interventions appear to have particularly positive effects for the most severely affected COPD patients (10). However, there is no difference in resource utilisation between digital home monitoring and traditional healthcare services for people with COPD, especially for the specialist health service in isolation (11). A systematic literature review by Cochrane nevertheless showed that a multicomponent intervention could reduce the number of hospital admissions, even though telemonitoring also made little difference in this study (12).

    Most patients have a positive attitude towards telemedicine (13). Telemedicine leads to strong personal relationships being established between patients with COPD and nurses through dialogue, good care and follow-up. Telemonitoring can promote active patient participation in treatment and help to empower the individual patient (3, 7). For patients’ caregivers, this can reduce their worry and make them feel reassured that the telemedicine service helps the patient manage the disease and treatment (7, 14).

    It has been demonstrated that telemedicine can sometimes be considered an inadequate form of care when the health service uses the technology in a way that does not address the patient’s individual needs (15). Informatics and technology are part of nurses’ core expertise and are standard in modern care. In digital monitoring, nurses need to be aware of how technology affects the relationship between the nurse and the patient. Nursing interventions involving technology require nurses to be reflective (16).

    The article is based on a municipal pilot project that was initiated by the local primary health service and the local hospital. The collaboration with the local hospital aimed to reach the target group that could benefit most from the service. More knowledge is needed about the experiences of patients with COPD and their caregivers with digital home monitoring, compared to the experiences of healthcare personnel with the service.

    Objective of the study

    The objective of the study was therefore to explore the experiences with the telemedicine pilot project in the municipality – digital home monitoring – from the perspective of patients, their caregivers and the healthcare personnel.

    Method

    The study is designed as a case study in one municipality. The case study method allows researchers to examine a ‘case’ in detail, i.e. delving deeply into a complex phenomenon within its natural context (17). The objective of our study was to describe and gain a comprehensive understanding of the telemedicine service from several perspectives. We therefore considered a case study with qualitative interviews to be appropriate.

    The COVID-19 pandemic arrived in Norway during the pilot project. As a result, participants’ experiences with the telemedicine service during the pandemic are included in the case study.

    Description of the case

    The telemedicine service in the municipality was initiated in May–June 2019 as a pilot project for 20 patients over a period of six months. The patients were recruited by the local hospital. The inclusion criteria were, among other things, COPD stage 3 or 4, the ability to use a mobile phone and some experience with digital services. The service utilised a 24-hour telemedicine monitoring centre (TMC) with specially trained nurses located elsewhere in Norway.

    Through the technical equipment, nurses could monitor the patient’s health status, conduct digital consultations with the patient, receive real-time measurements and intervene at an early stage to prevent exacerbation. At the relevant TMC, symptom assessment was performed using a custom-designed algorithm based on daily recordings of oxygen saturation and pulse via spirometry and pulse oximeter, as well as the patient’s self-reported health status. If the real-time measurements deviated from the normal range, the nurse at the TMC contacted the patient by phone.

    The initial ten patients included in the pilot project, along with staff from home care services in the municipality, participated in a training day with the TMC. The patients were given the necessary equipment. A ‘telemedicine group’ was established in home care services to provide technical training to the remaining patients throughout the autumn of 2019.

    Data collection and sample

    To study the case and shed light on the theme from several perspectives, we used four different data sources (Table 1). We devised an interview guide for patient and caregiver interviews and a theme guide for the focus group interviews (18, 19) (Table 2). The interview and theme guides were based on research literature on the topic of the study, as well as the researchers’ clinical and research experience.

    The first ten patients who were recruited to the pilot project, and thus had the most experience, received an information letter along with a consent form and were informed that they would be contacted by phone. Patients not residing with a caregiver were excluded since caregivers were to be included in the sample. For patients and caregivers, we conducted individual interviews in their own homes. Patients and their caregivers were interviewed on the same day but in separate rooms. We made audio recordings of the interviews, which were subsequently transcribed by the second author.

    Healthcare personnel affiliated with and with experience from the pilot project were invited to participate in a focus group interview. Nurses from the TMC were not included as they also monitored patients in other municipalities that already had an established telemedicine service. Nor were they directly associated with the pilot project.

    Due to the pandemic restrictions on the number of people who could gather, the focus groups were divided into two. The first author recorded the interviews and transcribed them. She also served as the moderator in the focus group interviews. The pulmonary nurses from the local hospital were unable to participate. Instead, they provided a written evaluation note based on a general question about their own experiences with the pilot project. The note described the overall experience of the pulmonary nurses, without naming specific patients or conveying other sensitive information.

    Table 1. Overview of participants and data collection
    Table 2. Interview and theme guides

    Analysis

    We employed thematic content analysis, initially of the data from the various sources and subsequently for the entire dataset (18, 19). The note from the pulmonary nurses was reviewed and used in the analysis process to compare the experiences from the interviews and identify contrasts and contradictions.

    The dataset was read through several times to form an overall impression. We then reflected on and discussed these impressions with a view to identifying themes that represented the interviewees’ experiences with the telemedicine service. Meaning units and codes were identified.

    The first and second authors conducted the initial analysis, comparing and systemising sub-themes. All authors then met to discuss codes, sub-themes and themes until a consensus was reached on the main findings. Finally, we selected quotes to illustrate the findings (Table 3).

    Table 3. Example of the analytical process

    Research ethics

    Research involving vulnerable patients requires the researcher to be cautious in their approach to the patients and their caregivers. The interviews with the patients and caregivers were conducted by a researcher who is a nurse and has experience with the patient group. The researcher was aware of this vulnerability and was able to use her experience to make allowances for the participants throughout the interview, giving them sufficient time and ensuring their well-being.

    The project was conducted in accordance with applicable regulations and with the approval of the Norwegian Centre for Research Data (NSD) (project number 53693, reference code 995988) and the Regional Committee for Medical and Health Research Ethics (REK) (reference number 2016/2310, amendment notification). We obtained written informed consent from the patients, caregivers and healthcare personnel at the start of the interviews and verbal consent in the telephone interviews.

    Results

    The main finding from the case study was that the participants’ experiences were predominantly positive. The service had provided reassurance for the patients and their caregivers. All participants believed that the service improved patients’ self-management, allowing them to live better and more independently with the disease.

    Some challenges were reported. For instance, participants expressed that the service could have been better coordinated between the different healthcare providers. The healthcare personnel mentioned that there was uncertainty about how the telemedicine service should be organised going forward. Three themes emerged, and these are presented below.

    Greater sense of reassurance for the patients and their caregivers

    All the patients reported feeling short of breath, tired and experiencing a high heart rate, but that the monitoring gave them reassurance and peace of mind. They believed it was better to be at home than in the hospital, and this had a positive effect on their well-being and activity. One patient described how active the disease had been in the past, with frequent hospitalisation. For one patient, the disease was stable enough that they could still work every day but felt reassured by the telemedicine service and the daily measurements.

    The patients mentioned that a telemedicine nurse promptly identified any changes and contacted them by telephone to offer guidance. The nurse would call daily when the patient had breathing difficulties. The pulmonary nurses explained that patients they met at check-ups at the outpatient clinic expressed a strong sense of reassurance knowing that they would be contacted if the measurements they submitted indicated any issues. They no longer had to rely solely on their own health assessments.

    Through the evaluations every three months from the TMC, the healthcare personnel in the municipality received positive feedback that the service was working well for the patients. One participant in the focus group interviews shared the same view: ‘My overall impression is that they feel much more reassured. One of them hasn’t been hospitalised since last summer when he was admitted with pneumonia.’

    All of the patients’ caregivers also felt more reassured. They said that being the patient’s caregiver was challenging, even though the patient had had COPD for a long time, as the disease was steadily getting worse. One caregiver said they felt anxious when the patient became short of breath but believed they were well supported: ‘They call almost every day. She [the telemedicine nurse] was the one who sent her to the doctor when she was admitted to the hospital.’ This provided relief for the caregivers, as they no longer felt sole responsibility for supporting the patient.

    In the telephone interviews, the patients were asked about their experiences during the COVID-19 pandemic. All had been worried about their own health and stayed home a lot and practised social distancing. However, they felt reassured by the telemedicine monitoring during this period. Two patients had trouble breathing. In consultation with the telemedicine service, they received cortisone medication without being hospitalised.

    Self-management, independence and quality of life

    Several participants felt that their self-management of the disease improved when using the telemedicine service. One patient expressed that her medication was better and that she could make adjustments herself. Another had started exercising twice a week with others. This patient mastered tasks more effectively by breaking them down, and now had the confidence to shower on their own. Another became more adept at recognising symptoms and felt able to rest occasionally.

    Another example, according to the nurses in the municipality, involved a patient whose condition worsened and who received treatment relatively quickly from the TMC nurses. The patient indicated that she normally had to wait a bit longer. The pulmonary nurses confirmed this: ‘Some patients had been slow to contact a doctor when their condition worsened. This problem has now been identified, enabling them to start treatment more promptly.’

    The healthcare personnel told how the patients, in general, now had more freedom to do things, such as visit their cabins, which could improve their quality of life despite having a serious chronic illness. Another of the healthcare personnel said the following: ‘This is fantastic for the users’ quality of life. Also for their caregivers, not having to be so afraid for the loved one they live with, who is basically very ill.’ There had been very few challenges for participants in relation to handling the technical equipment. The healthcare personnel from home care services had therefore had little contact with the patients.

    One nurse said that one of the 20 other patients reported to the project organisers that ‘having to report in every day made him feel very tied down’. He felt stable and chose to withdraw from the study. It was important that the patients and their caregivers perceived the benefit of sharing health data in the form of daily measurements with the health service as greater than the burden. The caregivers also believed that the telemedicine monitoring improved the patients’ quality of life. One was pleased that the patient wanted to join an exercise group run by the local authority when encouraged to do so by the pilot project staff.

    The healthcare personnel reported that several patients had started exercising and were more socially and physically active: ‘Because they receive telemedicine monitoring and are in constant contact with the nurses, they have the confidence to engage in earnest. There has been almost no drop-out in the exercise group.’ Nor had the pandemic situation led to drop-outs, even though infection control measures sometimes required them to keep exercising at home, with remote guidance from healthcare personnel.

    Challenges of the service

    Even though all participants were predominantly positive about the telemedicine service, some challenges emerged in relation to various individual needs. Several patients wanted additional information about their illness. For example, one of them frequently experienced anxiety with palpitations but had never learned breathing and relaxation techniques. This patient had searched for information about COPD on the internet, but this made them feel anxious.

    Another patient still smoked daily but wanted help to stop. Caregivers also expressed a need for more information. One was concerned that both they and the patient might lose access to the service if the patient did not stop smoking.

    It also emerged that there might be a need for role clarification among the various actors, both internally and externally, such as determining who should be the contact person in home care services for the TMC and defining the roles of the general practitioner (GP) and pulmonary nurses. One caregiver believed that neither the GP nor the nurses in the municipality followed up on the patient to any significant extent.

    The pulmonary nurses also said they missed being able to communicate with the others in the health service when patients were identified through the TMC as having worsening conditions, and, for example, were put on a course of antibiotics: ‘The patient had an appointment for a check-up during or right after the treatment, so the check-up was too soon after the course of antibiotics. The appointment would have been postponed if we had known about this.’

    Only a few of the patients initially used home care services. However, the healthcare personnel told of patients who no longer needed healthcare services, or that the need was delayed: ‘Even though we don’t have any statistics, we see fewer hospital admissions. There are certainly some long-term financial gains to be made here.’

    Documenting effects and gains, however, is challenging. The local authority currently bears the costs, but when calculating the effects of the service, it is not the municipality that benefits initially, with one local authority manager commenting as follows: ‘It is often the hospital that notices fewer admissions [...]’.

    As patients with COPD get worse, they tend to require considerable support from home care services. However, working out whether the telemedicine service actually reduces the need for services is challenging. The healthcare personnel in the focus groups hoped that home care services could be put in place before the need arises for more extensive interventions.

    Discussion

    The findings indicate that all participant groups mainly had positive experiences, and that there were few challenges related to the technical implementation of the pilot project. Patients and caregivers perceived the service as an extra reassurance and support, which helped with management of the disease. However, there were some challenges with the service in relation to meeting individual needs for information about living with COPD. This also applies to the division of roles and responsibilities in the event of the service being continued.

    Greater sense of reassurance for the patients and their caregivers

    The patients described a varying symptom burden and said that the follow-up with the telemedicine nurses gave both them and their caregivers more reassurance. This finding is in line with other studies showing that patients receive emotional support for the burden of living with COPD. The studies also show that the follow-up can be regarded as a lifeline, where patients quickly receive guidance and advice when needed (6, 14), even though telemedicine may not always be sufficient to detect early signs of periodic exacerbation of the condition (20).

    Caregivers reported that telemedical monitoring gave them peace of mind in the event of changes to measurements. They found that the monitoring gave them a sense of relief and considered it crucial, as caregivers of this patient group often face substantial stress (21).

    All patients experienced heightened concerns about their own health during the COVID-19 pandemic. They nevertheless felt reassured knowing they would be contacted if there were any issues with the measurements, as also found in another study (22). A report from the Norwegian Board of Health Supervision stated that 92 per cent of local authorities reported a reduction in the home care services provision for patients during the pandemic (23).

    However, several local authorities found that some changes implemented as a result of the pandemic, such as digital services, were positive, and they wanted to maintain them. The fact that there were few technical challenges in the pilot project may indicate that it was relatively easy to use, which could be crucial for whether older patients will use home monitoring or not.

    Self-management, independence and quality of life 

    Having someone in the background gave the patients confidence to undertake activities they had previously been hesitant about. This helped their self-management of the disease, as also found in other studies (24). The service resulted in patients in the pilot project exercising more and continuing to exercise from home during the pandemic. Better insight and understanding of the patient’s own health condition has previously been shown to be important for their sense of reassurance (25).

    The interaction between patients, caregivers and healthcare personnel can be perceived as motivating, guiding and supportive, and can be associated with hope (26) – something of great importance in chronic conditions such as COPD. Digital home monitoring can thus be a valuable supplement to the healthcare services for these patients, as it improves understanding and self-management of the disease (8).

    Studies show the importance of individual guidance from healthcare personnel for the prompt treatment of exacerbations. Systematic follow-up through self-management plans is also essential for promoting the patient’s self-management and reducing the symptom burden and hospitalisation (27).

    The healthcare personnel confirmed that they perceived the telemedicine service as positive for the patients and their caregivers. Technology can serve as a supplement, contributing to better interaction between the healthcare services and caregivers. The use of technology can free up resources in the care service which can then be diverted to direct patient-centred work (15).

    Challenges of the service

    The healthcare personnel expressed that the service could have been better coordinated between the different healthcare providers. Home care services personnel are open to adopting different technologies to improve standards and optimise resource use (28); however, introducing telemedicine as a permanent service in primary care poses various challenges (29).

    In its final report, the Norwegian Directorate of Health recommends that local authorities adopt digital home monitoring but seek collaboration within the healthcare community at the outset (5). Experiences from Sweden also suggest that there is a need for a clearer organisation and division of responsibilities between the different levels of the health service (30).

    Strengths and weaknesses of the study

    Drawing general conclusions based on a study of only one case can be challenging, even though case studies can improve the understanding of complex problems within a specific context (17). One of the strengths of our study is the various types of data that were collected to shed light on the case from different perspectives. 

    Our sample of patients for in-depth interview was random, with the first four who agreed to participate being selected. A larger sample would have strengthened the study (18), but the strength of information was partially compensated for by the inclusion of perspectives of caregivers and healthcare personnel. 

    Restrictions on the number of people who could gather during the pandemic resulted in two focus group interviews being held with two and three participants, respectively. To achieve an effective exchange of experiences, the ideal would have been to combine the focus groups into one interview with five participants (19). Nevertheless, the strategic sample of information-rich participants enabled interaction between the participants, allowing for experiences to be illuminated from different perspectives.

    Conclusion

    The experiences of the patients, caregivers and healthcare personnel with the telemedicine service in this municipal pilot project were predominantly positive. The service had provided them with reassurance and improved their self-management, which was crucial, as both the patients and their caregivers experienced less anxiety and worry, even during the COVID-19 pandemic. However, individual patient needs could have been better addressed.

    There is room for improvement in terms of clarifying roles and responsibilities among the specialist health service, primary health care and the telemedicine services. It is important to clarify how the service should be continued in consultation with patients, caregivers and healthcare personnel.

    The authors declare no conflicts of interest.

    Open access CC BY 4.0

    Peer-reviewed article
    Publication type
    Publication Year
    2023
    Edition Year
    18
    Publication Number
    94164
    Page Number
    e-94164

    Patients and their caregivers experience less anxiety and worry. Healthcare personnel also had positive experiences with the telemedicine service.

    Article is Peer Reviewed
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    Innsendte kommentarer kvalitetssikres før publisering. Kvalitetssikringen skjer i vanlig arbeidstid.
    Research
    English
    Sammendrag

    Background: Many patients live with chronic diseases such as chronic obstructive pulmonary disease (COPD). The goal is for patients to better manage the disease at home and reduce the use of healthcare services. Digital home monitoring, formerly known as remote medical monitoring, is a telemedicine service that can help improve the monitoring of the health status of patients with COPD outside hospital settings. Little is known about patients’ experiences with this service.

    Objective: The objective of the study was to describe the experiences with the service from the perspective of the patients, caregivers and healthcare personnel.

    Method: We conducted a case study in a Norwegian municipality. A total of 13 participants were interviewed. Four patients and their caregivers were interviewed separately; the four patients were interviewed twice, and five of the healthcare personnel were interviewed in a focus group. We also used an evaluation note from a group of pulmonary nurses in the analysis. We performed a thematic content analysis of the data.

    Results: The experiences of the participants in the study were predominantly positive. The service had provided reassurance for patients and their caregivers, and all the participants believed that the patients’ improved self-management of the disease gave them more independence, allowing them to live better with the disease. However, participants expressed that the service could have been better coordinated between the different healthcare providers.

    Conclusion: In order for digital home monitoring to contribute to reassurance, self-management and independence for patients with COPD, it is important that the service is tailored to the individual patient, such that they perceive it as safe and useful. There is a need for role clarification between the specialist health service, primary health care and telemedicine services. How the service is to be continued and funded should be clarified so that patients and caregivers can optimise their use of the service.

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    I det følgende ble avsnittene endret (08.01.2024):

    Gammel tekst: 

    Introduksjon

    Digital hjemmeoppfølging, tidligere kalt medisinsk avstandsoppfølging, er en telemedisinsk tjeneste der helsepersonell evaluerer pasientens helsestatus på avstand og gir veiledning, helsehjelp og omsorg i pasientens eget hjem (5, 6). Slik hjemmeoppfølging bidrar til at pasienten opplever å ha mer kontroll, som igjen kan bidra til bedre egenmestring av sykdommen (7).

    Det at oppfølgingen i større grad skjer i primærhelsetjenesten og i form av digitale tjenester, er forankret i blant annet Meld. St. 26 (2014–2015) (8) og Meld St. 29 (2012–2013) (9). Telemedisinske intervensjoner synes særlig å ha positive effekter for de sykeste kolspasientene (10).

    Imidlertid er det ikke noen forskjell i ressursbruken på digital hjemmeoppfølging og tradisjonelle helsetjenester for personer med kols, spesielt for spesialisthelsetjenesten isolert (11). En systematisk litteraturgjennomgang av Cochrane viste likevel at en multikomponentintervensjon kunne gi færre sykehusinnleggelser, selv om telemedisinsk oppfølging utgjorde lite forskjell også i denne studien (12).

    Studiens styrker og svakheter

    Det kan være vanskelig å trekke generelle slutninger på bakgrunn av en studie av bare én case, selv om casestudier gjør det mulig å forstå komplekse utfordringer innen en spesifikk kontekst (17). En styrke ved vår studie er at ulike typer datamateriale ble samlet inn for å belyse casen fra ulike vinkler. Utvalget vårt av pasienter til dybdeintervju var tilfeldig ved at de fire første som samtykket til å delta, ble valgt ut.

    Det hadde vært en styrke med et større utvalg (18), men informasjonsstyrken ble delvis kompensert ved at vi inkluderte perspektivene til pårørende og helsepersonell. Begrensninger for antallet personer som kunne samles under pandemien, førte til to fokusgruppeintervjuer med henholdsvis to og tre deltakere. For å oppnå god erfaringsutveksling ville det ideelle vært å ha samlet fokusgruppene til ett intervju med fem deltakere (19).

    Ny tekst:

    Introduksjon

    Digital hjemmeoppfølging, tidligere kalt medisinsk avstandsoppfølging, er en telemedisinsk tjeneste der helsepersonell evaluerer pasientens helsestatus på avstand og gir veiledning, helsehjelp og omsorg i pasientens eget hjem (5, 6). Slik hjemmeoppfølging bidrar til at pasienten opplever å ha mer kontroll, som igjen kan bidra til bedre egenmestring av sykdommen (7). Det at oppfølgingen i større grad skjer i primærhelsetjenesten og i form av digitale tjenester, er forankret i blant annet Meld. St. 26 (2014–2015) (8) og Meld St. 29 (2012–2013) (9). 

    Telemedisinske intervensjoner synes særlig å ha positive effekter for de sykeste kolspasientene (10). Imidlertid er det ikke noen forskjell i ressursbruken på digital hjemmeoppfølging og tradisjonelle helsetjenester for personer med kols, spesielt for spesialisthelsetjenesten isolert (11). En systematisk litteraturgjennomgang av Cochrane viste likevel at en multikomponentintervensjon kunne gi færre sykehusinnleggelser, selv om telemedisinsk oppfølging utgjorde lite forskjell også i denne studien (12).

    Studiens styrker og svakheter

    Det kan være vanskelig å trekke generelle slutninger på bakgrunn av en studie av bare én case, selv om casestudier gjør det mulig å forstå komplekse utfordringer innen en spesifikk kontekst (17). En styrke ved vår studie er at ulike typer datamateriale ble samlet inn for å belyse casen fra ulike vinkler. 

    Utvalget vårt av pasienter til dybdeintervju var tilfeldig ved at de fire første som samtykket til å delta, ble valgt ut. Det hadde vært en styrke med et større utvalg (18), men informasjonsstyrken ble delvis kompensert ved at vi inkluderte perspektivene til pårørende og helsepersonell. 

    Begrensninger for antallet personer som kunne samles under pandemien, førte til to fokusgruppeintervjuer med henholdsvis to og tre deltakere. For å oppnå god erfaringsutveksling ville det ideelle vært å ha samlet fokusgruppene til ett intervju med fem deltakere (19). Gjennom et strategisk utvalg av informasjonsrike deltakere ble det likevel interaksjon mellom deltakerne, slik at erfaringene ble belyst fra ulike perspektiver.

     

    • The patients, caregivers and healthcare personnel who were involved in the study had predominantly positive experiences with the service. It provided patients and caregivers with reassurance. All participants believed that improved self-management led to greater independence, allowing patients to live better with the disease.
    • In order for digital home monitoring to contribute to reassurance, self-management and independence, it is important that the service is tailored to each patient, such that it is perceived as safe and useful.
    • There is a need for clarification of roles between the specialist health service, primary health care and the telemedicine services, including how the service should be continued and funded.

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    14.       Nissen L, Lindhardt T. A qualitative study of COPD-patients’ experience of a telemedicine intervention. International Journal of Medical Informatics. 2017;107:11–7. DOI: 10.1016/j.ijmedinf.2017.08.004           

    15.       Nakrem S, Solbjør M, Pettersen IN, Kleiven HH. Care relationships at stake? Home healthcare professionals’ experiences with digital medicine dispensers – a qualitative study. BMC Health Services Research. 2018;18(1):26. DOI: 10.1186/s12913-018-2835-1

    16.       Ask K, Søraa RA. Digitalisering. Samfunnsendring, brukerperspektiv og kritisk tenkning. Oslo: Fagbokforlaget; 2021.

    17.       Paparini S, Green J, Papoutsi C, Murdoch J, Petticrew M, Greenhalgh T, et al. Case study research for better evaluations of complex interventions: rationale and challenges. BMC Med. 2020:18:301. DOI: 10.1186/s12916-020-01777-6

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    20.       Pedone C, Lelli D. Systematic review of telemonitoring in COPD: an update. Advances in Respiratory Medicine. 2015;83(6):476–84. DOI: 10.5603/PiAP.2015.0077

    21.       Johansson H, Bertero C, Jonasson L-L, Berg K. The experience of caregiver burden when being next of kin to a person with severe chronic obstructive pulmonary disease: a qualitative study. Chronic Respiratory Disease. 2023;20. DOI: 10.1177/1479973123116889

    22.       Arnaert A, Ahmad H, Mohamed SN, Hudson E, Craciunas S, Girard A, et al. Experiences of patients with chronic obstructive pulmonary disease receiving integrated telehealth nursing services during COVID-19 lockdown. 2021;21:205. DOI: 10.1186/s12912-022-00967-2

    23.       Helsetilsynet. Kartlegging av smittevern i hjemmetjenestene i kommunene under koronapandemien. Oslo: Helsetilsynet; 2020. Available at: https://www.helsetilsynet.no/publikasjoner/rapport-fra-helsetilsynet/2020/kartlegging-av-smittevern-i-hjemmetjenestene-i-kommunene-under-koronapandemien/ (downloaded 27.05.2023).

    24.       Rixon L, Hirani SP, Cartwright M, Beynon M, Doll H, Steventon A, et al. A RCT of telehealth for COPD patient's quality of life: the whole system demonstrator evaluation. The Clinical Respiratory Journal. 2017;11(4):459–69. DOI: 10.1111/crj.12359

    25.       Omachi TA, Sarkar U, Yelin EH, Blanc PD, Katz PP. Lower health literacy is associated with poorer health status and outcomes in chronic obstructive pulmonary disease. Journal of General Internal Medicine. 2013;28(1):74–81. DOI: 10.1007/s11606-012-2177-3

    26.       Andersen IC, Thomsen TG, Bruun P, Bødtger U, Hounsgaard L. Between hope and hopelessness: COPD patients' and their family members' experiences of interacting with healthcare providers–a qualitative longitudinal study. Scandinavian Journal of Caring Sciences. 2018;32(3):1197–206. DOI: 10.1111/scs.12565

    27.       Lenferink A, Brusse‐Keizer M, van der Valk PD, Frith PA, Zwerink M, Monninkhof EM, et al. Self‐management interventions including action plans for exacerbations versus usual care in patients with chronic obstructive pulmonary disease. Cochrane Database of Systematic Reviews. 2017;(8):CD011682. DOI: 10.1002/14651858.CD011682.pub2

    28.       Gjestsen MT, Wiig S, Testad I. Health care personnel’s perspective on potential electronic health interventions to prevent hospitalizations for older persons receiving community care: qualitative study. Journal of Medical Internet Research. 2020;22(1):e12797. DOI: 10.2196/12797

    29.       Kruse CS, Karem P, Shifflett K, Vegi L, Ravi K, Brooks M. Evaluating barriers to adopting telemedicine worldwide: a systematic review. Journal of Telemedicine and Telecare. 2018;24(1):4–12. DOI: 10.1177/1357633X16674087

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  • Overweight people’s perceptions of their own appearance and the risks of negative weight development

    The photo shows a woman looking in the mirror. We can see her belly, and she is squeezing it to show she has a couple of kilos extra

    Introduction

    ‘Overweight’ is often used as a generic term for varying degrees of excess weight and obesity, but these conditions differ in terms of prognosis and treatment (1). The World Health Organization’s (WHO) scale based on body mass index (BMI) is used to distinguish between overweight and obesity (1).

    A BMI in the overweight range (25 to 29.9) is not associated with the same health risks as obesity, despite sometimes being a precursor. Obesity (BMI > 30) is a chronic disease that increases the risk of various illnesses and can heavily impact health, well-being and quality of life (1). In Norway, more people are overweight than of normal weight, and the prevalence of obesity is higher than the average for other European countries (2, 3).

    Previous research often focuses on experiences with obesity. The review by Farrell et al. (4) examined the development of obesity, life limitations, shame and blame, experiences related to the development of obesity, the impact on daily life, the judgement people face, and experiences of accessing or trying to access treatment. Those living with obesity face existential challenges (5, 6) and attempt to overcome shame as a result of self-stigma (7). Stigmatisation by healthcare personnel is commonly experienced, posing a threat to health and well-being (8). Educating and training healthcare personnel in the causes and complexity of overweight are therefore called for (8).

    As overweight is linked to obesity (9), it is crucial to explore the experiences of people with overweight. Bruåsdal (10) examined the correlation between overweight and shame, and found that shame is experienced both as external judgement and self-condemnation. Shame led to the avoidance of physical and social activities, resulting in life limitations.

    Garip and Yardley’s (11) review found that health problems were related to weight and the desire to prevent future health challenges. Self-perception and body image were related to weight and weight control in different ways. Some studies identified overweight women with a positive self-perception, while others showed that those who were overweight had negative feelings associated with their weight. Negative self-perception could motivate weight control, which in turn could improve self-perception (11).

    As far as we can see, little is currently known about the experiences and perceptions of people with overweight in terms of their appearance, weight development and health risks. Studies are called for on young adults’ weight-related concerns, behaviour and experiences (9).

    Given the significant increase in overweight and obesity in the population, a concerted and strengthened effort is needed to prevent further development (1, 3). Preventing weight gain and health risks in people with overweight can have a major impact on individuals and also lead to considerable societal benefits (3). In order to develop preventive health initiatives in the area, it is crucial to generate knowledge on people’s experiences with being overweight.

    Objective of the study

    The objective of the study was to gain more insight into and a deeper understanding of overweight people’s perceptions of their own appearance and the risk of negative weight development.

    Method

    The study has a qualitative design involving individual interviews with eight people. Informants were recruited through notices posted at educational institutions, training centres, GPs’ offices and private agencies working with lifestyle changes, and further through snowball sampling (12).

    All informants had a BMI that is classified by the WHO as overweight, with six in the upper range and two in the lower range. The informants had become overweight at a young age. Three had developed obesity as young adults and had lost weight in the last five to seven years, subsequently maintaining a stable weight (Table 1). Recruitment was conducted in three regions in Norway, representing both urban and rural areas.

    Table 1. Study sample

    Interviews

    The interview guide has an overall theme and suggestions for follow-up questions. The first author conducted the interviews, all of which started with the introductory question: ‘Can you describe your experiences of being overweight?’ This allowed informants to share their stories and discuss topics that helped shed light on the research question. Follow-up questions were then asked about their health and lifestyle situation – currently and in the future – and their thoughts about overweight.

    The interviews lasted 45–90 minutes. The interviewer actively encouraged informants to express and elaborate on their own narratives. To ensure variation, the interviewer asked follow-up questions to explore situations where informants may have had a different experience (12). Questions and phrases such as ‘Can you tell me more?’, ‘What did you think?’, ‘How?’ and ‘In what way?’ were used to gain a deeper understanding. This produced concrete examples of situations and resulted in rich data on the topic and satisfactory information power for the sample (12).

    The interview was recorded digitally and transcribed immediately afterwards so that the social and emotional tone remained fresh in the interviewer’s mind. The transcribed material amounted to 162 single-spaced A4 pages of data.

    Analysis

    We employed Malterud’s approach to systematic text condensation inspired by phenomenological analysis (12). We read all the material to form an overall impression, and identified preliminary themes, such as ‘Own situation’, as shown in Table 2. We then read the material line by line to identify meaning units, which were thoroughly discussed and coded.

    Code groups and subgroups were further discussed and condensed into categories of abstract meanings. We synthesised the material into an analytical text, with ‘golden quotes’ illustrating each category. We used this method to describe the most relevant pages, common features and variations in the material. The categories were given headings that summarised their content.

    Table 2. Example of the analytical process

    Ethical considerations

    The study was approved by the Regional Committees for Medical and Health Research Ethics (reference number 203664) and the Norwegian Centre for Research Data. All the informants gave written consent. The material was deidentified before publication.

    Results

    Through the analysis, we developed three categories: ‘Negative feelings related to dissatisfaction with own appearance’, ‘Few concerns about negative weight development and health risks’ and ‘Knowledge and experience provided insight and increased concern’. 

    Negative feelings related to dissatisfaction with own appearance

    All informants had developed overweight at a relatively young age, from their mid-teens and young adulthood. Some described themselves as ‘slightly large children’. Informants reported that their appearance was the biggest challenge of being overweight. Most felt less attractive because they were overweight and that losing weight would improve their appearance:

    ‘I don’t exactly feel like a looker when my belly sticks out and buttons pop open. I’d like to look better of course. Who wouldn’t want that?’ (Informant 2)

    The perception of not being attractive led to lower self-esteem and poorer self-confidence in several areas for the informants. For some, alcohol in social situations could help suppress their negative thoughts:

    ‘Not exactly tempted to take off my shirt in the park, if you know what I mean. […] Gets a bit easier after a few cans [of beer/alcoholic drink]. I guess I have little faith in myself, you could say, no matter where I am – at school or with friends. […] I think part of the reason is that I don’t like what I see in the mirror. I want to look better ... to be thinner than I am.’ (Informant 1)

    The informants talked about negative feelings, discomfort and reduced well-being related to being overweight. The degree of the negative feelings was described by many as proportional to their BMI. As BMI increased, so did the negative feelings, discomfort and unhappiness.

    This was particularly evident among informants who had experienced weight fluctuations. Discomfort and unhappiness were not linked to specific situations, but several informants experienced negative feelings in social situations:

    ‘I actually love going to parties, weddings and such like. At least when I’m not so heavy. Even though I look fine when I’m all dressed up, and have dresses that fit – that aren’t too tight – there’s just a discomfort that’s there when I’m too heavy. I know how I’m going to feel before I get there. It all depends on how big I am.’ (Informant 5)

    Being overweight gave rise to many negative feelings. The picture was diverse and complex, and various aspects of the informants’ lives were affected. Poor self-image and low self-esteem were pervasive, and these feelings influenced the extent to which they participated in activities such as work, school and leisure. Several informants reported that they sometimes avoided social activities and gatherings of various kinds. Activities that were physically demanding or involved close contact, and situations where it was natural to be lightly dressed or show some skin were the ones they avoided the most.

    Few concerns about negative weight development and health risks 

    Informants in their 20s had no thoughts or concerns related to the risk of negative weight development in the future, or the risk of other health challenges that may arise from being overweight as they age. We found the same among the other participants based on their recollections from when they were young adults:

    ‘I feel totally healthy. I don’t know, but I don’t think about having any problems ... at least not more than anyone else. I know that a lot of sugar and sweets can lead to diabetes, but I don’t think about getting it. I don’t think I will get it. [...] I also don’t think I’ll ever get really fat.’ (Informant 4)

    Another informant expressed it as follows:

    ‘There’s nothing wrong with me. I’ve had some testing done when I’ve been at the doctor’s with other things. He [the doctor] hasn’t said anything. Everything looks fine. I don’t think about my health at all. [...] Or that things will be any different when I get older.’ (Informant 2)

    The informants had varying degrees of insight into health risks and causal relationships related to being overweight. Several felt that physical activity was the most important factor in weight stabilisation and reduction. Diet was highlighted as a factor by several, with different perceptions of what constituted good dietary habits and what foods and drinks were calorie-dense:

    ‘I have to say, I didn’t know much about things either. Maybe I had some control over ‘yes food’ and ‘no food.’ (Informant 6)

    Overall, it seemed that informants had less insight into overweight and health risks when they were young, as seen in those in their twenties and based on past recollections of the others.

    Knowledge and experience provided insight and increased concern

    Informants who had experienced weight loss described their thoughts and concerns about their own physical and mental health in relation to increased weight and the implications for the future. For example, they highlighted reduced quality of life, risk of high blood pressure and diabetes, strain on joints, increased need for sleep, despondency and difficulties related to being physically active or working:

    ‘I won’t mentally tolerate being large again. It’s not just the health risks I’m thinking about, blood pressure, diabetes. Everything in life becomes heavy-going. Tying shoelaces, playing with the children, it’s all heavy-going... mentally. Everything!’ (Informant 7)

    The experience of weight loss was associated with increased knowledge and insight into overweight and causal relationships. Knowledge was acquired through personal experiences and perceptions, participation in lifestyle change courses or personal quests for knowledge due to excess weight issues. Increased knowledge led to thoughts about health and risks related to overweight, something they had not reflected on when they were younger. One informant expressed it as follows:

    ‘I thought differently when I was young. Didn’t look ahead. Only the here and now. I didn’t foresee any risks whatsoever, either the risk of obesity or diabetes. I also didn’t imagine the struggle of losing weight and keeping the weight off.’ (Informant 6)

    Experience and knowledge made informants realise the seriousness of being overweight in relation to health risks and increasing age. They described that through experience and trial and error they had ‘cracked the code’ of how to succeed. Keeping the weight off was vital:

    ‘I’ve tried almost everything and fallen into the ‘trap’ so many times. I know that the statistics show that I won’t succeed, but I’m not going back ... enough is enough. [...] I have much more insight now. I understand how things are connected [...] Imagine if someone could have helped me understand that when I was young.’ (Informant 8)

    Gaining insight into the correlations and complexity of being overweight helped informants believe they could successfully regulate their weight in the future. They wished they had had more insight when they were young and that they had received help to acquire this, which may have prevented them from gaining weight and having to face all the subsequent challenges.

    Discussion

    A key finding in the study was that overweight was linked to appearance, which was the greatest concern and challenge in relation to being overweight. Being overweight led to lower self-esteem and self-confidence. Negative feelings related to being overweight sometimes led to informants not participating in activities and social interaction.

    As young adults, the informants had no concerns about future weight gain and the associated health risks. Insight into health risks and causal relationships varied and was generally lower among young adults. Experiences of obesity and weight reduction provided insight, but also increased concerns about weight gain and health.

    Main focus on appearance

    The study shows a major focus on appearance in relation to being overweight. Self-perceptions of being less attractive impacted on quality of life and self-realisation. This life limitation is described in research on experiences with overweight and obesity (4, 13).

    In an era dominated by social media and heightened social expectations related to body ideals, the findings reflect the impact of prevailing socio-cultural norms. Even though one of the informants knew she looked nice when she was dressed up for social occasions, she still felt physical discomfort at not being closer to the body ideal, despite being otherwise fit and healthy. Some of the male participants also longed to conform to body ideals. The term ‘shirt buttons popping open’ appears to reflect a desire to be the ‘correct’ body size.

    The study illustrates the degree to which appearance matters to some people. It is interesting to see how an overweight person’s self-realisation is impacted by their appearance, especially considering that the majority of the Norwegian population is overweight. This phenomenon is also relevant when considered in tandem with media narratives about body weight and ideals (14).

    Meanwhile, there is a general tendency to underestimate self-perceived weight status, which is frequently attributed to the social normalisation of being overweight. Driven by the higher prevalence of overweight, this normalisation results in more people regarding themselves as having a normal weight (15).

    Lack of focus on the risk of developing obesity and health risks

    There has been a growing focus on overweight and lifestyle issues in society by the media, the medical field and in public health campaigns and research (13). The varying insights found in the study, the limited understanding of health risks and causal relationships, and the different perceptions of what constitutes good lifestyle choices contrast with the authorities’ broad emphasis on public health and prevention (16, 17).

    In the study by Sand et al., normal weight and overweight informants were interviewed about what motivates them to make lifestyle changes (18). They found that young people had a strong motivation and desire to be of normal weight and establish a good lifestyle and healthier diet; however, they lacked the necessary skills and knowledge on how to form good food and exercise habits.

    It is expected that introducing public health and lifestyle management as an interdisciplinary subject in the general part of the curriculum in 2020 will have a positive impact on general knowledge levels (19). The aim is for pupils to attain competence in promoting physical and mental health, enabling them to make responsible life choices, including understanding issues related to overweight and health risks. This competence will help to improve health literacy, which is crucial for individuals making informed decisions about their own health (20). The media is awash with health information and advice that can easily lead to confusion without the relevant knowledge.

    The relationship between biological, psychosocial and behavioural factors related to overweight is complex (21). Complex causal relationships cannot be solved simply by increasing knowledge and improving health literacy. A society that facilitates good life choices is crucial for public health as a whole (16). Nevertheless, increasing the population’s knowledge will be essential to successfully preventing weight gain.

    Studies show that people want to discuss overweight with healthcare professionals (22–24), but it is rarely addressed (25). Healthcare workers are reluctant to discuss the topic for fear of causing offence (26). This is also why they use imprecise terms for BMI when discussing the topic and use the term ‘overweight’ for a BMI over 30 kg/m2 (23). Thought processes are likely affected when using precise terms related to BMI, such as saying the risk of ‘obesity’ rather than the risk of ‘overweight’, or when vague expressions like ‘gaining weight’ or ‘negative weight development’ are used when the actual risk is when weight exceeds 30 kg/m2.

    Healthcare workers play an important role in preventive health efforts in their interactions with patients (16). They could function as a ‘wake-up call’ by making patients aware of their behaviour and the consequences of lifestyle choices (22). Health literacy is a prerequisite for making informed life choices, and healthcare workers must take responsibility for strengthening this (20). Through health education, healthcare workers can contribute to the development of health literacy and life management skills (20, 27).

    Preventing overweight is challenging given the complex causes and the environment we live in (21). However, the aim should be to promote health behaviour that helps people to permanently stabilise their weight in line with the advice from the Norwegian Directorate of Health. Dietary guidelines and recommendations for physical activity should be followed regardless of the underlying motivation of the individual (1, 28).

    According to protection motivation theory, concern for our own health can be considered a resource for changing health-harming behaviours (29). At the core of the theory lies the individual’s self-evaluation of the threat, encompassing the perception of health risks and the severity of the consequences. If the risk of obesity and lifestyle diseases is perceived as a threat to someone’s health, it can influence their lifestyle changes, provided they are aware of their health behaviour and have the necessary knowledge. Nurses and GPs have a special responsibility to provide information as an integral part of health promotion and preventive initiatives (30, 31).

    Implications for practice

    The study provides insight into the experiences of numerous individuals, which can be helpful for healthcare workers involved in obesity prevention, as well as for others with an interest in the field, including people with overweight.

    Healthcare workers are reluctant to discuss excess weight issues but must be mindful of providing evidence-based information on health, lifestyle and diet to overweight people who need it. In doing so, they can empower them to make informed choices and prevent negative weight development and health risks.

    Strengths and limitations of the study

    Individuals self-identified as overweight and signed up for the study. We found the dataset to be rich and varied, and it shed light on multiple aspects of the research question (12). We employed an analytical method that we have experience in and which is well tested. To strengthen credibility, we have been explicit about how we drew our conclusions, allowing the reader to follow the analytical path that formed the basis for interpretation and conclusion.

    Our findings provide insight into the experiences of a number of informants. Other informants, researchers and qualitative methods may yield different results (12). Nevertheless, the study has generated knowledge that may be of interest to others.

    Conclusion

    The study shows that the focus on appearance in relation to being overweight was dominant. There was far less focus on and concern about the risk of developing obesity and the resulting health risks. Awareness of health risks and causal relationships varied, and was generally lower among young adults.

    The study highlights a need to increase informants’ knowledge of health and lifestyle choices in relation to overweight. Through preventive health efforts, healthcare personnel play a key role in helping individuals to improve their health literacy, enabling them to make informed choices and prevent obesity and health risks.

    The limited focus on the negative development of obesity and the correlation to essential knowledge about a healthy lifestyle should be further explored.

    The authors declare no conflicts of interest.

    Open access CC BY 4.0

     

    Peer-reviewed article
    Publication type
    Publication Year
    2023
    Edition Year
    18
    Publication Number
    93796
    Page Number
    e-93796

    Participants’ sense of being less attractive impacted on their quality of life and self-realisation. Much less focus was placed on the risk of developing obesity.

    Article is Peer Reviewed
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    Innsendte kommentarer kvalitetssikres før publisering. Kvalitetssikringen skjer i vanlig arbeidstid.
    Research
    English
    Sammendrag

    Background: Overweight is not associated with the same health risks as obesity, but can, for some, be a precursor to obesity. Healthcare workers can play a crucial role in preventing weight gain and mitigating health risks for people with overweight. Learning about the topic from a first-hand perspective is an important step in providing better preventive health care.

    Objective: We aimed to gain more insight into and a deeper understanding of overweight people’s perceptions of their own appearance and the risk of negative weight development.

    Method: Individual semi-structured interviews were conducted with eight informants: five women and three men aged 20–48 years. A stepwise analysis was performed using systematic text condensation inspired by phenomenology.

    Results: A key finding of the study was that overweight was linked to appearance. This posed the greatest challenge and concern in relation to being overweight and could impact various aspects of life. Young adults were not concerned about the risk of future weight gain and the associated health risks. Insight into health risks and causal relationships varied and was generally lower among young adults. Losing weight provided the informants with insight but also increased their concern about their health and gaining weight.

    Conclusion: The study shows that the focus on appearance in relation to being overweight was dominant, while there was far less focus on and concern about the negative development of obesity and health risks. The study also identifies a need to improve the informants’ health literacy. Healthcare personnel have an important role to play in helping to improve health literacy, thereby forming a more solid basis for making good life choices and preventing obesity and health risks.

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    • Obesity was linked to appearance rather than health.
    • Appearance posed the greatest challenge and concern in relation to being overweight, and there was little focus on negative weight development and health risks.
    • Healthcare workers must improve the health literacy of people with overweight as part of preventive health efforts.

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    23.       Strømmen M, Bakken IJ, Andenæs E, Klöckner CA, Mårvik R, Kulseng B, et al. Fet, feit eller bare overvektig? Tidsskr Nor Laegeforen. 2015;135(20):1816. DOI: 10.4045/tidsskr.15.1095

    24.       Hart J, Yelland S, Mallinson A, Hussain Z, Peters S. When is it ok to tell patients they are overweight? General public’s views of the role of doctors in supporting patients’ dieting and weight management. J Health Psychol. 2016;21(9):2098–107. DOI: 10.1177/1359105315571974

    25.       Scott JG, Cohen D, DiCicco-Bloom B, Orzano AJ, Gregory P, Flocke SA, et al. Speaking of weight: how patients and primary care clinicians initiate weight loss counseling. Prev Med. 2004;38(6):819–27. DOI: 10.1016/j.ypmed.2004.01.001

    26.       Michie S. Talking to primary care patients about weight: a study of GPs and practice nurses in the UK. Psychol Health Med. 2007;12(5):521–5. DOI: 10.1080/13548500701203441

    27.       Skille EÅ, Vedøy IB, Skulberg KR. Folkehelse: en tverrfaglig grunnbok. Oslo: Cappelen Damm Akademisk; 2020.

    28.       Helsedirektoratet. Nasjonale råd for ernæring. Hvordan gå ned i vekt, og holde vekta stabil. Ekspertuttalelse frå Nasjonal råd for ernæring. Oslo: Helsedirektoratet; 2019. Available at: https://www.helsedirektoratet.no/om-oss/organisasjon/rad-og-utvalg/nasjonalt-rad-for-ernaering/Hvordan%20g%C3%A5%20ned%20i%20vekt%20-%20holde%20stabilt%20-%20Ekspertuttalelse%20Nasjonalt%20r%C3%A5d%20for%20ern%C3%A6ring.pdf (downloaded 01.10.2023).

    29.       Norman P, Boer P, Seydel ER, Mullan B. Protection motivation theory. In: Conner M, Nordmo M, eds. Predicting and changing health behaviour: research and practice with social cognition models. 3rd ed. Maidenhead: McGraw-Hill Education; 2015. pp. 70–106.

    30.       Helsedirektoratet. Nasjonal faglig retningslinje for det helsefremmende og forebyggende arbeidet i helsestasjon, skolehelsetjeneste og helsestasjon for ungdom [Internet]. Oslo: Helsedirektoratet; 08.02.2017 [updated 30.06.2023; cited 01.10.2023]. Available at: https://www.helsedirektoratet.no/retningslinjer/helsestasjons-og-skolehelsetjenesten 

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  • Antibiotic-savvy nursing students? Nursing students’ knowledge and self-assessed competence in antibiotic use and resistance

    The photo shows hands holding various pills and tablets

    Introduction

    The discovery and application of antibiotics is considered one of history’s most significant medical breakthroughs. Antibiotics are a prerequisite for modern medical treatment and, along with growing prosperity and vaccines, have helped to increase life expectancy and improve public health (1). Without effective antibiotics, major surgical interventions and cancer treatments would be more challenging to carry out, significantly increasing the risk of mortality (2).

    Antibiotic resistance

    Antibiotic resistance is a rapidly growing problem. In 2012, the World Health Organization (WHO) declared it to be one of the world’s greatest health threats (3). In 2019, it was estimated globally that almost five million deaths could be linked to antibiotic resistance (4).

    Estimates show that by 2050, up to ten million deaths per year could be linked to antibiotic resistance (5). There is therefore a pressing need for new types of antibiotics, but since the 1980s, very few new classes of antibiotics have been developed (6). Treatment options are limited when known antibiotics no longer work. Common infections that are currently considered harmless could once again become severe and deadly.

    Global use of antibiotics by humans increased by 65% in the period 2000–2015 (7). A direct correlation is believed to exist between increased antibiotic use and the emergence of resistant bacteria (8, 9). Restrictive and appropriate use of antibiotics is therefore crucial for preventing the development of antibiotic resistance (2, 9).

    The nurse’s role in preventing antibiotic resistance

    In 2015, the WHO presented a global action plan (10) for a unified strategy to combat antibiotic resistance. The same year saw the launch of Norway’s national strategy to combat antibiotic resistance (2). The Ministry of Health and Care Services developed an action plan the following year to combat antibiotic resistance in the health service, which specifically emphasised the enhancement of competence through education for nurses and other groups (9).

    The new regulations on national guidelines for nursing education include learning outcomes for antibiotic use and the development of resistance (11). Nurses perform daily tasks related to antibiotics, which impacts on usage. They therefore play a crucial role in what is termed ‘antibiotic stewardship’ (12, 13).

    Antibiotic stewardship is defined as a coherent set of actions that promote responsible use of antibiotics (14). Such actions can, for example, include monitoring antibiotic use, reviewing antibiotic prescription practices, skills enhancement, information flow, improved sample collection and communication of results from microbiological testing, reassessment of indications and drug choices, infection diagnostics, good infection control and infection prevention (9, 15–18).

    Several review articles have been published recently on antibiotic stewardship and the complex and important role of nurses in reducing the development and spread of antibiotic resistance (17–20). A consistent theme is that effective and successful antibiotic stewardship is dependent on nurses’ efforts (18–20) and that more education is needed on the topic, both in clinical practice and in nursing education (17, 19).

    Education and knowledge on the topic are essential for enhancing nurses’ competence, recognition, self-confidence, motivation and awareness of how they can contribute (17–19). A Norwegian study shows that when nurses acquire more knowledge about antibiotics, they become more engaged (21).

    A Spanish cross-sectional study demonstrates how nursing students have a low level of knowledge about antibiotics, especially antibiotic resistance (12). The study concludes that more education and knowledge are needed and that these should be better incorporated into the nursing curriculum.

    Nursing education has a unique opportunity to incorporate antibiotic stewardship into its curricula. However, an English study shows that 37% of educational institutions do not include antibiotic stewardship in their curriculum, and only 12.9% teach antibiotic stewardship principles (22). This is despite international research demonstrating that teaching antibiotic stewardship to nursing students increases their awareness of antibiotic resistance and infection prevention (23).

    Healthcare personnel in Norway participated in a study of knowledge and behaviour in relation to antibiotic use and resistance across 30 EU/EEA countries (24). The study showed that Norwegian healthcare personnel’s knowledge of antibiotic use was on a par with other European countries. However, knowledge gaps were identified, which emphasises the need for education in this area (24). 

    The level of knowledge among nursing students in Norway in relation to antibiotics use and resistance is a relatively unexplored area of research. This is also the case for factors within the education and individual characteristics of students that may impact on their knowledge level. Research in this area could help initiate targeted measures to enhance the knowledge of nursing students, enabling them to contribute to the prevention of antibiotic resistance.

    Objective and research questions

    The objective of the study was to identify nursing students’ knowledge of antibiotic resistance and use, and to examine their self-assessed competence in this area.

    Research questions:

    1. How do nursing students assess their own knowledge and role in relation to antibiotic resistance and use?
    2. What is the level of knowledge among nursing students in relation to antibiotic resistance and use?
    3. What correlation is there between nursing students’ actual knowledge and self-assessed knowledge? We also examined whether the following factors impacted on actual and self-assessed knowledge: previous work experience in the health service, educational institution and age, as well as whether the teaching was voluntary or compulsory.

    Method

    Design

    The study employed a descriptive cross-sectional design (25). The data were collected in a questionnaire sent in printed format to nursing students at four educational institutions in Norway between September 2019 and February 2020. We used the STROBE checklist for reporting cross-sectional designs.

    Sample and data collection

    Nursing students from the four educational institutions in south-east and south-west Norway participated in the study. We formally approached institutions that had been offered teaching material on the topic from the Antibiotic Centre for Primary Care (ASP), the Norwegian Institute of Public Health (FHI) and the National Centre for Antibiotic Use in Hospitals (NSAS).

    The institutions invited the students to a teaching session where the teaching materials were used. The students who attended were asked to complete a questionnaire before the session started. They were given approximately 15 minutes to answer the printed questionnaire in the auditorium. The participants were second-year students (institution 3) and third-year students (institutions 1, 2 and 4).

    All students had completed all or part of their clinical practice in a hospital setting and primary care. The teaching was compulsory at two of the four institutions. 

    Questionnaire

    The questionnaire was developed by an expert panel consisting of professionals with a background in general medicine, internal medicine, infectious diseases, epidemiology and nursing science (Appendix 1 – in Norwegian).

    The questionnaire included demographic questions (age category and previous work experience before starting their bachelor’s degree) and questions about self-assessed knowledge and the participant’s role in relation to antibiotic use. It also consisted of questions about knowledge of antibiotic resistance, antibiotic use and infection control. The questions were based on the teaching material from ASP, FHI and NSAS, as well as discussions by the expert panel. The questionnaire has not been validated.

    Part 1 – self-assessed knowledge and role in relation to antibiotic use

    Part 1 consisted of eight questions, where students assessed their own knowledge and role in relation to infection control, infection prevention, sample collection, monitoring antibiotic use and opportunities to influence antibiotic use, the difference between broad-spectrum and narrow-spectrum antibiotics, and actions to prevent antibiotic resistance.

    Response alternatives were given on a Likert scale from 1–7, where 1 corresponded to ‘I have no knowledge’, and 7 corresponded to ‘I have all the necessary knowledge’. Since response alternative 4 is considered a neutral score, self-reported knowledge between 5 and 7 was considered ‘a high level of knowledge’. The possible total score for Part 1 of the questionnaire ranged from 8 to 56.

    The students at institutions 3 and 4 (n = 98) were given an additional self-assessment question in the questionnaire, where they were asked about the extent to which they believed that nurses can influence the use of antibiotics. This was not included in the total score.

    Part 2 – knowledge questions

    This part consisted of 34 knowledge questions. The questions were grouped into six competency areas: appropriate antibiotic use (ten questions), infection control (five questions), resistance (four questions), antibiotic consumption (nine questions), urinary tract infection and asymptomatic bacteriuria (five questions), and allergies and adverse effects (one question). The maximum score for the knowledge questions was 42.

    Six of the questions had multiple correct answers, resulting in a higher possible maximum score than the total number of questions. This allowed for an additional eight points. Two questions had the response alternatives ‘Yes’, ‘No’ and ‘Don’t know’, 18 were multiple-choice questions, also with the option of ‘Don't know’, and 14 had the response alternatives ‘True’ and ‘False’.

    Validity and reliability

    To strengthen the questionnaire’s validity and reliability, those guiding the development of the questionnaire had expertise in antibiotic use and questionnaire methodology. They provided input on the content, design and formulation of questions.

    The questions were based on the expected knowledge level of third-year nursing students, the teaching materials, the regulations on national guidelines for nursing education (11) and the national clinical guidelines for antibiotic use in primary and specialist health care (26, 27). The validity of the questionnaire content was thus confirmed and based on an expert consensus (25). The questionnaire was tested on representative users by two nursing students, who provided feedback on the content, wording and time usage.

    Analysis

    The data from the questionnaire were entered in the statistical program SPSS, version 27 by the first author. The first and last author carried out regular checks during this process and performed a comprehensive check of the complete dataset to identify errors or omissions prior to analysis. A small proportion of participants did not answer some of the questions. These were coded as missing values and were excluded from further analysis. For each of the six different competency areas, a total score was calculated for each participant. Results exceeding 60% of the possible maximum score were defined as an acceptable level of competence.

    For the knowledge questions, correct answers were recoded as 1 and incorrect answers were recoded as 0. We analysed the background data and nursing students’ self-assessed knowledge and knowledge levels using descriptive analyses. The variables ‘Self-assessed knowledge level’ and ‘Actual knowledge level’ were normally distributed.

    We therefore used t-tests and bivariate correlation analyses to assess the correlation between actual knowledge and self-assessed knowledge and the background variables previous work experience in the health service before commencing the nursing education (Yes/No) and voluntary or compulsory education. We used ANOVA to test differences between the educational institutions and age categories. All analyses were performed in collaboration with a statistician and in accordance with Norman 2010 (28). P-values < 0.05 were considered statistically significant. 

    Ethics

    The study was submitted to the Norwegian Centre for Research Data, which confirmed that it was not subject to notification as it solely entailed processing anonymous information that could not be traced back to individuals. The data were collected in a printed questionnaire. The students were given written information about the purpose of the questionnaire survey. Responding to the questionnaire was considered to indicate their consent to the data being published. The students were informed that participation was voluntary.

    Results

    Of the 480 nursing students invited to participate, 410 responded to the survey. This corresponds to a response rate of 85.4%. The majority of respondents were in the youngest age category (20–23 years), and 54% had work experience from the health service before starting their bachelor’s degree (Table 1).

    Table 1. Background data on nursing students (N = 410)

    Self-assessed knowledge

    On five out of eight self-assessment questions, less than 32% of students rated their own knowledge level as high. On three self-assessment questions related to infection control, the difference between broad-spectrum and narrow-spectrum antibiotics, and infection prevention, over 60% rated their own knowledge level as high (> 5) (Table 2).

    A total of 98 students answered the self-assessment question about the extent to which they believed nurses could influence the use of antibiotics in primary and specialist health care, and 76.5% rated their own ability to exert influence as high (> 5).

    Table 2. Nursing students’ self-assessed knowledge (N = 410)

    Nursing students’ knowledge levels

    The students’ averaged 48.8% correct answers. They were least knowledgeable about antibiotic consumption, urinary tract infection and asymptomatic bacteriuria, as well as allergies and adverse effects. For the remaining topics of antibiotic resistance, appropriate antibiotic use and infection control, the students’ highest correct answer rate was between 52.9% and 55.8% (Table 3).

    Table 3. Nursing students’ level of knowledge on antibiotic resistance, antibiotic use and infection control (N = 410)

    Correlation between self-assessed knowledge level, measured knowledge level and background variables

    Bivariate correlation analysis showed a correlation between actual knowledge level and self-assessed knowledge level (correlation coefficient (R2) 0.238; p < 0.001). The higher the students scored on actual knowledge, the higher their self-assessed knowledge. Previous work experience in the health service before starting their bachelor’s degree and whether the teaching was voluntary or compulsory had no impact on either self-assessed knowledge or actual knowledge level (Table 4).

    Table 4. Self-assessed knowledge and actual knowledge scores, depending on job experience and teaching participation

    Furthermore, there was a difference in students’ self-assessed knowledge at the various institutions (p < 0.034), and in the total score for knowledge questions (p < 0.001) (Table 5).

    Table 5. Comparison between the educational institutions and self-assessed knowledge and actual knowledge scores (ANOVA)

    For the measured knowledge level, there was no difference between the different age groups. ANOVA comparisons of self-assessed knowledge (p = 0.017) across the different age groups indicated that this increased with age. The oldest group’s self-assessed knowledge was the highest (mean: 35.47; standard deviation [SD] 6.79), while the youngest group’s was the lowest (mean: 33.04; SD 5.85).

    Only 53 (institution 3) of the 410 students were second-year students. There was no difference between second-year and third-year students in the total score for actual knowledge and self-assessed knowledge.

    Discussion

    In this study, nursing students scored low on the knowledge questions and rated their own knowledge of antibiotic resistance, appropriate antibiotic use and infection control as low. There was therefore concordance between self-assessed knowledge and actual knowledge.

    Self-assessed knowledge and nursing role

    A high proportion of students in the study rated their own knowledge as low. Furthermore, the students believed they are in a position to influence antibiotic use. This finding is consistent with a British study, which demonstrates that nursing students believe they have a role to play in antibiotic stewardship but are unsure how they can contribute (23). Similar results were found in a Norwegian study, which showed that nurses have some understanding of antibiotic stewardship but feel uncertain about their role and responsibilities in this area (29).

    Basic nursing care entails vital antibiotic stewardship tasks. Nurses are therefore a pivotal and critical occupational group in antibiotic stewardship (13). Raising students’ awareness of their role through practical training and education is crucial as it empowers them to positively impact antibiotic use, contributing to the prevention of resistance development. There is also evidence that nurses have considerable power and authority in medical decisions and can positively impact prescribing doctors’ choices in relation to the prevention of antibiotic resistance (30). However, this requires nurses to have the necessary knowledge and experience and to know how to use this to positively impact antibiotic treatment (30).

    The nursing students in this study indicated that they lacked knowledge on these areas. Since all the students had practical experience in both primary and specialist health care, it may be that they had not acquired enough knowledge on the topic during their clinical placements. This suggests a need for more emphasis in nursing education to prepare and raise awareness of the nurse’s role in antibiotic stewardship. This could help expedite nursing students’ competence enhancement and make them feel more confident in their role in relation to rational and appropriate antibiotic use in future professional practice. 

    Nursing students’ knowledge levels

    On average, the students had less than 50% correct answers across all six competency areas, indicating a general knowledge deficit in relation to antibiotic resistance and use. The topics with the lowest scores were knowledge about antibiotic consumption, urinary tract infection and asymptomatic bacteriuria. Understanding consumption can help raise awareness among students that elevated usage can lead to increased resistance (7, 8), thereby motivating them to contribute to change.

    A recent study shows that urinary tract infections account for a large proportion of antibiotic use in the older population. Furthermore, the basis for treatment is often precarious, as non-specific symptoms are frequently attributed to a urinary tract infection, even in the absence of specific symptoms from the urinary tract (31). The study also showed that antibiotic consumption in nursing homes could be halved without compromising patient safety, and that teaching materials help to enhance students’ knowledge and reduce unnecessary antibiotic use. Incorporating additional content about urinary tract infections into the curriculum has considerable clinical relevance as nurses possess the ability to exert influence through infection prevention, symptom assessment and diagnostic testing, which in turn can impact on the prescription of antibiotics.

    Occupational competence is vital for providing professionally responsible nursing care (32). The knowledge deficit in relation to antibiotic use could impede the delivery of responsible nursing care in the field. These findings are consistent with results from other international studies (12, 23, 33) that have identified similar knowledge gaps, underscoring the importance of raising healthcare personnel’s awareness and enhancing their engagement in addressing these issues (24). There is also other evidence that they need more education and knowledge (12, 23).

    All the students in the study had completed all or part of their clinical placement in a hospital setting or in primary care and probably had some knowledge of antibiotics and antibiotic resistance at the time of completing the questionnaire. This could explain why there was no difference between second-year (n = 53) and third-year (n = 357) students in terms of either self-assessed knowledge or actual knowledge.

    Earlier research emphasises the need to better incorporate knowledge about antibiotics and antibiotic resistance into the existing nursing curriculum (12, 23, 33). Such knowledge could provide recently qualified nurses with a solid foundation for utilising their position and nursing influence to prevent and reduce antibiotic resistance (23).

    The results of the study therefore suggest that a stronger focus is needed on this topic in the Norwegian bachelor’s degree in nursing to better prepare students for the crucial role they will assume in promoting appropriate antibiotic use and antibiotic stewardship.

    Self-assessed knowledge and correlation with actual knowledge

    The results showed that the higher the students scored on knowledge, the higher they rated their own knowledge. This finding suggests that the level of actual knowledge impacts on the students’ self-confidence and self-assessed knowledge level. The finding is therefore not consistent with other research, which has demonstrated that students may have a tendency to overestimate themselves and their own skills (34).

    Realistic self-assessments of future nurses’ level of competence will boost the quality of nursing care and patient safety. In this sense, these findings from the Norwegian context are reassuring.

    Institution a contributing factor in knowledge level

    There were differences between the educational institutions in terms of self-assessed knowledge level and actual knowledge level. However, the differences were too small to be considered of any practical significance. The institutions adhere to the same regulations in order to ensure a uniform academic standard throughout Norway (11). The results can thus be interpreted to mean that the focus on antibiotic use and antibiotic resistance needs to be strengthened across all educational institutions.

    To the best of our knowledge, none of the educational institutions’ learning outcomes in the academic year 2019/2020 were directly related to antibiotic resistance, use or stewardship, which may partly explain the results of our study. This finding is supported by international literature, which shows that few educational institutions have incorporated this topic into their curriculum (22). This highlights the need for more content on this in the curriculum in order to boost nurses’ competence levels (12).

    The regulations on national guidelines for nursing education, which came into effect in the academic year 2020 (11), emphasise that candidates shall have knowledge of antibiotic use and the development of resistance. The focus on this in nursing education has therefore been strengthened in Norway. Consequently, the results from our study can be used to investigate whether there is a difference in the knowledge levels of nursing students before and after the introduction of the regulations at the educational institutions in this study.

    Strengths and limitations

    The large sample (n = 410) and high response rate (85.4%) strengthen the internal validity of the study and may represent high quality in the statistical analyses and potential to generalise the results (25). The absence of power calculations beforehand, however, represents a weakness of the study. Another weakness is that the sample only consisted of educational institutions from south-east and south-west Norway, which may affect the generalisability to other regions. However, the fact that all institutions in Norway adhere to the same regulatory framework may increase generalisability (11). A third weakness is the use of a non-validated questionnaire due to our inability to find validated questionnaires on the topic that could address our research questions. This weakness poses a threat to validity, as it may have resulted in the questions not measuring what was intended (25).

    Furthermore, the educational institutions have considerable autonomy to determine the exact content of the education, and it is therefore uncertain how much the participants were taught about the topic in their studies. We are also uncertain about whether the questionnaire captures the knowledge level of nursing students in Norway in relation to antibiotic use and resistance.

    A fourth weakness is that some questions in the questionnaire had multiple correct answers, making the statistical analyses challenging. If the questionnaire is to be used in other studies, it should be refined based on the findings from this study.

    The questionnaire was developed with input from experts and pilot-tested by nursing students, which is a strength of the study.

    Conclusion

    The results show that nursing students have insufficient knowledge about antibiotic resistance and appropriate antibiotic use, and that they also rate their own knowledge and competence as low. There was no correlation between age, previous work experience, voluntary or compulsory teaching and knowledge level. The findings therefore support the need to strengthen the focus on knowledge about antibiotics and antibiotic stewardship, as described in the new regulations for nursing education (11).

    Improving teaching on the topic can help ensure that future nurses have the understanding, knowledge and awareness necessary to contribute to appropriate antibiotic use and thus have a real impact. It could give newly qualified nurses a better foundation for utilising their position and nursing influence to actively contribute to interdisciplinary efforts to prevent and limit antibiotic resistance. In doing so, they can maintain patient safety (20) and help ensure the efficacy of antibiotics in the future.

    In order to investigate whether strengthening the focus on the topic actually leads to change, a similar study can be conducted to see if the knowledge level has improved since increasing the content on antibiotic resistance and use in the curriculum at many institutions. Prior to any new study, the questionnaire should be further developed based on our experience from this study, and consideration should be given to using validated instruments from other studies in a Norwegian context (12).

    The authors declare no conflicts of interest.

    Open access CC BY 4.0

    Peer-reviewed article
    Publication type
    Publication Year
    2023
    Edition Year
    18
    Publication Number
    93743
    Page Number
    e-93743

    They consider themselves to have little knowledge and a low competence level in these topics.

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    Sammendrag

    Background: Modern medicine is dependent on effective antibiotics. However, antibiotic resistance has become a rapidly growing problem in society, posing a serious threat to global health. Appropriate antibiotic use is crucial to reducing antibiotic resistance in the future. Knowledge levels among nursing students in Norway in terms of antibiotic use and resistance are largely unexplored.

    Objective: To identify nursing students’ knowledge of antibiotic resistance and use. We also aimed to examine their self-assessed competence in this area.

    Method: The study has a descriptive cross-sectional design. The data were collected in a questionnaire sent to nursing students at four educational institutions in Norway between September 2019 and February 2020. The questionnaire consisted of 43 questions, divided into nine questions about self-assessed knowledge level and 34 questions about knowledge of antibiotic use, divided into six themes. We used ANOVA, t-tests and bivariate correlation analyses to assess the correlation between actual knowledge of antibiotic use and self-assessed knowledge, previous work experience in the health service, voluntary or compulsory teaching, educational institution and age.

    Results: Out of 480 students invited to participate in the study, 410 (84.5%) responded. The students had an average of 48.6% correct answers for all the knowledge questions combined. They were least knowledgeable about antibiotic consumption, urinary tract infection and asymptomatic bacteriuria, as well as allergies and adverse effects. A high proportion of the students rated their own knowledge of antibiotic resistance and appropriate antibiotic use as low. The higher the students scored on the knowledge level, the higher they assessed their own knowledge. Neither age, previous work experience, nor whether the teaching was voluntary or compulsory had a correlation with knowledge level.

    Conclusion: Nursing students have insufficient knowledge about antibiotic resistance and appropriate antibiotic use, and they also consider themselves to have little knowledge and a low competence level. This indicates a need to strengthen students’ competence to enable them to effectively utilise their professional roles to influence and prevent antibiotic resistance. Further research should examine whether knowledge levels have improved since relevant content was introduced at several educational institutions following completion of the study.

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    • Little is known about the level of knowledge that nursing students in Norway possess about antibiotic use and resistance.
    • The study shows that nursing students need to enhance their knowledge about antibiotic use and resistance. The students in the survey had an average of less than 50% correct answers for the actual knowledge questions. A high proportion of nursing students rated their own knowledge of antibiotic use and resistance as low.
    • More teaching on the topic could better equip newly qualified nurses to actively contribute to efforts to prevent and limit antibiotic resistance.

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    13.       Olans RD, Olans RN, Witt DJ. Good nursing is good antibiotic stewardship. Am J Nurs. 2017;117(8):58–63. DOI: 10.1097/01.NAJ.0000521974.76835.e0

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    15.       Nasjonal kompetansetjeneste for antibiotikabruk i spesialisthelsetjenesten (KAS). Mandat for antibiotikastyring. Bergen: Antibiotika.no, KAS; 2023. Available at: https://www.antibiotika.no/antibiotikastyring-i-sykehus/mandat-for-antibiotikastyring/ (downloaded 14.08.2023).

    16.       Harbin NJ, Lindbæk M, Romøren M. Barriers and facilitators of appropriate antibiotic use in primary care institutions after an antibiotic quality improvement program – a nested qualitative study. BMC Geriatr. 2022;22(1):458. DOI: 10.1186/s12877-022--3161-w

    17.       Rout J, Essack S, Brysiewicz P. Guideline recommendations for antimicrobial stewardship education for clinical nursing practice in hospitals: a scoping review. South Afr J Crit Care. 2021;37(3). DOI: 10.7196/SAJCC.v37i3.482

    18.       Gotterson F, Buising K, Manias E. Nurse role and contribution to antimicrobial stewardship: an integrative review. International Journal of Nursing Studies. 2021;117:103787. DOI: 10.1016/j.ijnurstu.2020.103787

    19.       Van Huizen P, Kuhn L, Russo PL, Connell CJ. The nurses' role in antimicrobial stewardship: a scoping review. International Journal of Nursing Studies. 2021;113:103772. DOI: 10.1016/j.ijnurstu.2020.103772

    20.       Davey K, Aveyard H. Nurses' perceptions of their role in antimicrobial stewardship within the hospital environment. An integrative literature review. J Clin Nurs. 2022;31(21–2):3011–20. DOI: 10.1111/jocn.16204

    21.       Hansen MJT, Mathisen M, Lunde EB. Når sykepleiere får mer kunnskap om antibiotika, involverer de seg mer. Sykepleien. 2022;110(90194):e-90194. DOI: 10.4220/Sykepleiens.2022.90194

    22.       Castro-Sánchez E, Drumright LN, Gharbi M, Farrell S, Holmes AH. Mapping antimicrobial stewardship in undergraduate medical, dental, pharmacy, nursing and veterinary education in the United Kingdom. PLoS One. 2016;11(2):e0150056-e. DOI: 10.1371/journal.pone.0150056

    23.       McEwen J, Burnett E. Antimicrobial stewardship and pre-registration student nurses: evaluation of teaching. Journal of Infection Prevention. 2018;19(2):80–6. DOI: 10.1177/1757177417726156

    24.       Ashiru-Oredope D, Hopkins S, Vasandani S, Umoh E, Oloyede O, Nilsson A, et al. Healthcare workers' knowledge, attitudes and behaviours with respect to antibiotics, antibiotic use and antibiotic resistance across 30 EU/EEA countries in 2019. Euro Surveill. 2021;26(12):13–22. DOI: 10.2807/1560-7917.ES.2021.26.12.1900633

    25.       Polit D, Beck CT. Nursing research: generating and assessing evidence for nursing practice. 10th ed. Wolters Kluwer Health; 2017.

    26.       Helsedirektoratet. Nasjonal faglig retningslinje for antibiotikabruk i primærhelsetjenesten. Oslo: Helsedirektoratet; 2012. Available at: https://www.helsedirektoratet.no/retningslinjer/antibiotika-i-primaerhelsetjenesten (downloaded 14.08.2023).

    27.       Helsedirektoratet. Antibiotika i sykehus. Nasjonal faglig retningslinje [internett]. Oslo: Helsedirektoratet; 2013. Available at: https://www.helsedirektoratet.no/retningslinjer/antibiotika-i-sykehus (downloaded 01.04.2022).

    28.       Norman G. Likert scales, levels of measurement and the «laws» of statistics. Adv Health Sci Educ Theory Pract. 2010;15(5):625–32. DOI: 10.1007/s10459-010-9222-y

    29.       Hansen MJT, Storm M, Syre H, Dalen I, Husebø AML. Attitudes and self-efficacy towards infection prevention and control and antibiotic stewardship among nurses: a mixed-methods study. J Clin Nurs. 2023;32(17–18):6268–86. DOI: 10.1111/jocn.16657

    30.       Broom A, Broom J, Kirby E, Scambler G. Nurses as antibiotic brokers: institutionalized praxis in the hospital. Qual Health Res. 2017;27(13):1924–35. DOI: 10.1177/1049732316679953

    31.       Hartman EAR, van de Pol AC, Heltveit-Olsen SR, Lindbæk M, Høye S, Lithén SS, et al. Effect of a multifaceted antibiotic stewardship intervention to improve antibiotic prescribing for suspected urinary tract infections in frail older adults (ImpresU): pragmatic cluster randomised controlled trial in four European countries. BMJ. 2023;380:e072319. DOI: 10.1136/bmj-2022-072319

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    33.       Dyar OJ, Hills H, Seitz LT, Perry A, Ashiru-Oredope D. Assessing the knowledge, attitudes and behaviors of human and animal health students towards antibiotic use and resistance: a pilot cross-sectional study in the UK. Antibiotics. 2018;7(1):10. DOI: 10.3390/antibiotics7010010

    34.       Schlösser T, Dunning D, Johnson KL, Kruger J. How unaware are the unskilled? Empirical tests of the «signal extraction» counterexplanation for the Dunning–Kruger effect in self-evaluation of performance. Journal of Economic Psychology. 2013;39:85–100. DOI: 10.1016/j.joep.2013.07.004

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  • Courage to address patients’ spiritual thoughts and emotions – a qualitative study

    The photo shows a male older patient lying in a hospital bed. A female nurse is sitting beside him. Both are smiling

    Introduction

    The article sheds light on nursing students’ self-assessments of competence in spiritual care. The study explores how nursing students in Norway express their strengths as well as areas they wish to develop within four spiritual care competencies. The study is part of a larger study in which the EPICC Spiritual Care Competency Self-Assessment Tool (hereafter referred to as the EPICC Tool) was tested in five countries (1).

    In the period 2016–2019, a group of European researchers developed the EPICC Spiritual Care Education Standard (hereafter referred to as the EPICC Standard) as a common framework for all nursing education in Europe (2–4). The EPICC Standard has been translated into Norwegian according to an established procedure (5) and describes four core competencies within spiritual care for nursing students to have acquired as part of their education and training (4, 1).

    Based on the EPICC Standard, the EPICC Tool was developed for the self-assessment of spiritual care (1). Nursing students can use this tool to assess their own knowledge, skills and attitudes related to spiritual care. The purpose of the tool is to raise awareness of spiritual care both in relation to the student’s strengths and the areas they wish to develop.

    Spiritual care

    The responsibility to practise professional, holistic and compassionate nursing care is anchored in national regulations (6), an international code of ethics (7), and measures presented in national action plans and documents (8–10). Various studies acknowledge that spiritual care is part of holistic and compassionate nursing care (3, 11, 12).

    The study on which this article is based (2) uses the definition of spiritual care from the EPICC Standard (13): ‘Care which recognises and responds to the human spirit when faced with life-changing events […] and can include the need for meaning […] to express oneself, […] or prayer […]. Spiritual care begins with encouraging human contact in compassionate relationship […].’ (13).

    Spiritual care involves tending to the complete well-being of an individual through compassionate care – ‘by actively listening to what has significance in the patient’s life and often assisting with practical needs’ (14, p . 15).

    Nursing and spiritual care

    Studies show that nurses often find it challenging to grasp the concept of spiritual care. Rykkje (15) refers to earlier research (16–17) when she writes that the concept can seem vague and can be subject to conflicting understandings. Furthermore, nurses report feeling ill-equipped to provide spiritual care in clinical practice (1, 18, 19).

    Nurses express that holistic care, which also includes the spiritual dimension, is important, but they find it difficult to meet patients’ spiritual care needs (15, 20). Nevertheless, nurses in Norway report that conversations about spiritual care can help patients overcome adversity and give them a sense of inner peace (21).

    Weathers et al. (17) point out that spiritual care can alleviate suffering, enhance the feeling of well-being, enable patients to overcome adversity and provide a sense of inner strength and peace. Other studies also suggest that spiritual care can give patients hope and motivation, and strengthen feelings of belonging, empathy and love (20, 22, 23).

    Nursing students and spiritual care

    Nursing students’ competence in spiritual care develops over the course of their studies through caring for patients in clinical practice, events in their own lives, academic learning and reflection (24). In a study of first-year nursing students in Norway, the students considered their own competence to be limited in terms of talking to patients about sources of hope and strength (25). Previous studies have also shown that students consider the subject to be taboo (26, 27).

    In a document analysis of programme descriptions from 13 nursing study programmes in Norway, the subject of existential or spiritual care was covered in the reading list of eight programmes (28), and few of these had included the subject in their learning outcome descriptions. The study recommends that educational institutions should do more to incorporate spiritual and existential care into both theoretical knowledge and clinical practice (28).

    Objective of the study

    In the process of developing and testing the EPICC Tool, students from five countries and eight educational institutions were invited to participate. This article presents the results from the qualitative data that were collected via the open-ended questions posed to students in Norway. The objective of the article is therefore to describe and reflect on the self-assessed competence of nursing students in Norway, in addition to what areas they need to further develop in order to provide spiritual care.

    Method

    Recruitment and data collection

    The study uses a qualitative method and is based on written responses to open-ended questions in the EPICC Tool (1). Nursing students in Norway taking a bachelor’s degree in nursing at three educational institutions were invited to participate in the survey between August and October 2020 via the institutions’ digital information and learning platforms.

    We also sent individual emails to the students giving details of the study and a link to the survey. After one to two weeks, a follow-up email was sent with a renewed request to participate. The students had two weeks to respond before the survey ended. Due to the COVID-19 pandemic, the students were not physically present on campus during this period and could therefore only be contacted electronically.

    The students were invited to write about what they considered to be their own strengths and areas needing further development in terms of knowledge, attitudes and skills within four competencies: 1) Intrapersonal spirituality, 2) Interpersonal spirituality, 3) Spiritual care: data collection, assessment and planning, and 4) Intervention and evaluation of spiritual care. The goal was to collect 60 responses from students in Norway. A total of 65 students completed the survey (see Table 1).

    Table 1. Students who responded

    Analysis

    We used Braun and Clarke’s (29, p. 23) methodological approach to thematic analysis of qualitative research data, which divides the analysis process into six phases: 1) familiarising yourself with your data, 2) generating initial codes, 3) searching for themes, 4) reviewing themes, 5) defining and naming themes, and 6) producing the report.

    The first phase entailed everyone thoroughly reading the written, qualitative data for each of the four questions repeatedly. We each created initial codes, which were then shared with the other authors, before meeting to discuss these initial codes and potential themes. We continued to work both individually and collaboratively in phases three, four and five, where we discussed and finally defined and named the themes.

    Responses related to ‘what are your strengths’ were generally more comprehensive than responses to the question ‘what areas do you need to develop further’. The analysis resulted in three overarching themes across the four competencies, illustrating how the students viewed their own competence in providing spiritual care: 1) Open and respectful attitude, 2) Need for knowledge and experience, and 3) Being open to spiritual care in clinical practice.

    Ethical considerations

    The Norwegian Centre for Research Data assessed the processing of personal data in the project and confirmed that this was in accordance with data protection legislation (reference number 847359). The study was also approved and endorsed by all three educational institutions.

    When students were invited to participate in the survey, they were informed that participation was voluntary and confidentiality would be maintained. They were also informed that once they had submitted the online questionnaire it would not be possible to withdraw from the study.

    Results

    Data from the study reveal a wide range of experiences. The students express a strong interest in describing their strengths. They also write about what they find challenging to discuss with patients, and they feel that there is not enough focus on spiritual matters and spiritual care in daily clinical practice.

    Open and respectful attitude

    Many students consider their open and empathetic attitude towards patients to be a strength. One student writes: ‘I am good at putting myself in other people’s situations and showing a lot of empathy and understanding. Even though I don’t understand all their opinions and thoughts, I try to respect them.’ (Informant 18, EI A)

    This is related to the importance of showing respect for all individuals, regardless of their attitudes, beliefs or faith. Several students also link their own openness and respect for fellow human beings to their own experiences and lives:

    ‘My strengths are showing empathy, being an active listener and trying to understand others. I also believe that the challenges I have experienced in my life strengthen me as a person in terms of being more open to others.’ (Informant 21, EI B)

    The concept of empathy recurs in responses within all four competencies, and several students, across the various institutions, relate it to their competence in spirituality. The students largely associate the concept of empathy with having an open attitude and showing understanding for other people’s lives, experiences and perceptions. Showing understanding for others can also be related to the fact that some nursing students feel that their own faith makes it easier for them to be open to conversations about spirituality. One student writes:

    ‘One of my strengths is that I am a very open person who dares to speak openly about most things, and I can relate to and understand people on this level. Personal faith is something that is very important to me in my daily life, so I think it is perhaps easier for me to think about the patient’s need for spiritual care and to provide this, as this is something I would appreciate healthcare personnel openly discussing with me if I were in the patient’s situation.’ (Informant 45, EI C)

    The students believed that having an empathetic, open and respectful attitude is a strength when dealing with patients. They also feel that having a well-defined understanding of their faith benefits their relationships with patients in relation to spiritual care.

    Need for knowledge and experience

    The analysis clearly shows that the students have a need for more theoretical knowledge and practical experience in spiritual care, as expressed, for example, through the following two student statements:

    ‘I need more knowledge, both practical and academic/theoretical, about how I can support people in this area.’ (Informant 25, EI B)

    ‘I may need to develop broader knowledge of relevant beliefs and religions so that I can show understanding and provide care for any patient.’ (Informant 5, EI A)

    Lack of knowledge makes it more difficult to initiate conversations about spirituality with patients. Several students mentioned the importance of knowing how to communicate about spiritual care, and they fear saying something wrong and demonstrating a lack of knowledge. Consequently, they end up avoiding the subject:

    ‘I personally have my own kind of faith and am very open to the idea that others may have their own perspectives on faith and spirituality. […] However, I believe that my weakness lies in not having enough knowledge about all possible perspectives on spirituality, and I find it difficult to apply it in practice. Having to initiate it myself can be more challenging.’ (Informant 41, EI C)

    The data also revealed the students’ desire to enhance their practical skills by gaining more experience, which would give them confidence to raise the subject of spirituality with patients.

    Data on this shows that many of them want to enhance their competence in both theoretical knowledge and practical experience of spiritual care.

    Being open to spiritual care in clinical practice

    Several students indicate that there is little focus on spiritual care in clinical practice. Although recognising the importance of self-reflection to reduce prejudice when interacting with patients of diverse beliefs, the culture in clinical practice generally means that there is little discussion on spiritual care. This, in turn, can make it challenging to allocate time to spiritual care in daily clinical practice.

    Several students express a desire to be more courageous but have various reasons for lacking courage. The courage to discuss spirituality is therefore something the students want to develop. One student writes: ‘I need to dare to raise the subject more often with the patients and also challenge colleagues and our professional environment to do the same. I have noticed that this is an area that is often given a lower priority.’ (Informant 20, EI B).

    The term ‘be better at’ also came up in connection with the areas where students believe they can improve, including in the analysis related to being open to spiritual care in clinical practice. The following are sample quotes:

    ‘I should be better at asking patients about their interests, values and beliefs.’ (Informant 19, EI A)

    ‘I can be better at involving colleagues and fellow students in my spirituality and dare to draw on my experience in interactions with patients and their families.’ (Informant 20, EI B)

    ‘I could be better at talking about and discussing spirituality.’ (Informant 28, EI B)

    Here, the students write about being better and daring to raise the subject of spiritual care and providing spiritual care in daily clinical practice. They refer to various situations, both in relation to working with their colleagues and interactions with patients and their families.

    Data from this topic show that the students perceive the subject of spiritual care to be rarely addressed in clinical practice. They also believe that they can be more courageous and better at addressing the topic for the benefit of their patients.

    Discussion

    We wish to discuss two central themes related to the findings from this study. We will examine the relationship between increased knowledge about spiritual care in connection with nursing students’ competence in meeting patients’ spiritual care needs. The discussion will then examine how enhanced competence and a focus on spiritual matters could encourage students to actively incorporate spiritual care into daily clinical practice.

    From knowledge to competence

    Nursing students consider themselves to be open to the spiritual care needs of patients while acknowledging the need to increase their own knowledge about spiritual care. Knowledge is described as both theoretical knowledge and experience from clinical practice. Progressing from knowledge to competence appears to be crucial for students being able to meet the spiritual care needs of patients.

    The students express a need for theoretical knowledge, and this is also observed in previous research (24). Students are expected to acquire the theoretical foundation for knowledge in spiritual care during their nursing education. Lewinson et al. (30) highlight the importance of nurse educators’ knowledge and write that nurse educators who are comfortable with the language used to express religion and spirituality are better equipped to communicate the significance of the topic to nursing students.

    The learning outcomes of study programmes are also closely linked to the knowledge imparted to the students. This reinforces earlier findings that more emphasis should be placed on spiritual care in clinical placements (14) in order to give students the confidence to meet patients’ spiritual and existential needs.

    Tornøe (28) suggests that clearer learning outcomes relating to spiritual care in Norwegian universities’ programme descriptions would improve the testing of students in this area. In the regulations on national guidelines for nursing education (6), the terms ‘spiritual care’ and ‘existential care’ are not used directly. After completing their education, students are expected to have broad knowledge of person-centred nursing and of core values and concepts in nursing.

    Previous research recognises that spiritual and existential care are part of holistic and person-centred nursing (25, 30, 31) and part of the foundation of nursing (7). The importance of nursing students learning about spiritual care through both theoretical knowledge and clinical practice is also supported by the literature review by Rykkje et al. (11).

    Knowledge can be viewed as one of the elements needed to acquire competence in a particular area. Fjørtoft (32) describes competence as three-dimensional: ‘the sum of knowledge (to know), skills (to do) and understanding (to comprehend)’ (32, p. 14). Students therefore need to be able to combine knowledge, skills and understanding in spiritual care. How spiritual matters are expressed can be best experienced and learned in clinical placement and through students reflecting on their own practices within this area.

    The desire for increased theoretical knowledge and practical clinical experience highlights the need for universities and the field of practice to have a clear focus on competence in spiritual care in the learning outcomes for clinical placement. Students may face challenges in this area when practising holistic patient care.

    From competence to courage to provide spiritual care

    The results of the study indicate that the students themselves believe that they exhibit a respectful attitude in their interactions with patients, and that they are focussed on listening and understanding. This can be interpreted as being motivated to meet the spiritual care needs of patients. However, they also express a lack of courage to address spiritual matters in daily clinical practice.

    Tornøe et al. (33) demonstrate that nursing staff undergoing training in palliative care who receive close supervision and training from experienced nurses in a practical setting exhibit greater courage to provide spiritual care. One of the teaching team said: ‘I’ve noticed that they have gradually become braver, because they actually dare to ask their patients some of the difficult questions.’ (33, p. 6). This highlights the importance of supervision by clinical supervisors and their positions as role models in giving students courage to provide spiritual care.

    Spiritual awareness (30) and religious literacy (34) are terms presented in the literature on spiritual care. Spiritual awareness refers to sensitivity to a patient’s religious background and attention to spiritual and religious conversations (30). Findings from this study show that little attention is paid to patients’ spiritual care needs and resources in nursing students’ clinical practice.

    Cockell and McSherry (35) note that it is unfortunate that nurses avoid focussing on spiritual matters due to their fear of making a mistake. This aligns with what the informants in our study expressed, and can be linked to a lack of courage to provide spiritual care in clinical practice. However, some students in this study describe their courage to discuss spirituality as their strength.

    Lindheim (34, p. 17) writes about religious literacy and the importance of the workplace being a ‘hospitable space’ where there is openness to talk about religious differences. In doing so, it is possible to develop what Lindheim refers to as religious literacy, which we define as a language to express spiritual and religious competence.

    Lindheim (34, p. 17) also discusses conversational spaces, which are defined as including ‘formal and informal encounters between employees during work hours, such as lunch breaks, handover meetings or situations where colleagues work together providing care for residents.’. Lindheim (34, p. 19) summarises the observation on religious literacy as ‘the pursued outcome of using conversational spaces for religion as venues for learning.’.

    This study shows that students need an environment in which there is a language to express spiritual and religious matters within the collegiate community, thus enabling them to enhance their competence and be more confident in meeting patients’ spiritual care needs. Enhancing competence can increase motivation and give students the courage to engage in spiritual care, which is important for patients.

    Strengths and weaknesses of the study

    The results in the study are based on the students’ self-perceived competence in spiritual care, and it may be a weakness of the study that subjective perceptions do not necessarily reflect actual competence. An important consideration is the extent to which the students who responded are those with a particular interest in spiritual care and how that may have impacted on the data collected.

    To the extent that this is the case, it is interesting to explore what specific areas the students feel they need to learn more about. We also observed that some responses to questions were quite similar, particularly in relation to competencies 1 and 2. Some students reported that they believed they had already answered the relevant question when they reached competency 2. This raises the question about the extent to which students understood the difference between intrapersonal and interpersonal spirituality.

    In the subsequent revision of the EPICC Tool, these terms were changed to ‘own spirituality’ and ‘relational spirituality’. Second and third-year students were invited to participate in the survey. All third-year students had been taught spiritual care, but this varied for the second-year students and could also have impacted on their responses.

    Conclusion

    Through the discussion of the findings from the study, we have shown that many nursing students have an open and empathetic attitude and are motivated to provide spiritual care. They also report that they need more knowledge, particularly about faith and beliefs in order to feel confident in meeting the spiritual care needs of the patient. They need the courage to provide spiritual care in daily clinical practice, which currently has little focus on this area.

    Important measures for enhancing nursing students’ competence in spiritual care include focussing on spiritual care in the supervision and assessment of nursing students in clinical placement. Creating spaces within the collegial community where discussions about spiritual matters can take place is also crucial.

    The authors declare no conflicts of interest.

    Open access CC BY 4.0

    Peer-reviewed article
    Publication type
    Publication Year
    2023
    Edition Year
    18
    Publication Number
    93502
    Page Number
    e-93502

    Nursing students in clinical placements find that there is little focus on patients’ resources and spiritual care needs.

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    Innsendte kommentarer kvalitetssikres før publisering. Kvalitetssikringen skjer i vanlig arbeidstid.
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    Sammendrag

    Background: Nurses express a lack of competence in spiritual care.

    Objective: The objective of the study is to examine how nursing students express their own strengths as well as areas they wish to develop within four spiritual care competencies.

    Method: The study uses a qualitative method and is based on written responses to open-ended questions developed as part of the EPICC Spiritual Care Competency Self-Assessment Tool. Responses from 65 nursing students at three bachelor’s programmes in nursing in Norway were collected from August to October 2020. We used Braun and Clarke’s thematic analysis of qualitative data.

    Results: The students express both strengths and weaknesses and consider there to be a lack of focus on spiritual care in daily clinical practice. The analysis revealed three themes: 1) Open and respectful attitude, 2) Need for knowledge and experience and 3) Being open to spiritual care in clinical practice. The discussion explores the relationship between increased knowledge about spiritual care and nursing students’ competence in meeting patients’ spiritual care needs. The discussion revolved around whether enhanced competence and an emphasis on spiritual matters would give students the courage to actively focus on spiritual care in daily clinical practice.

    Conclusion: The findings show that many nursing students have an open and empathetic attitude and are motivated to provide spiritual care. The students further report that they need more knowledge to feel confident in meeting patients’ spiritual care needs. It is important to maintain a focus on spiritual care in clinical practice, both when interacting with patients and engaging in open dialogue with colleagues.

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    I diskusjonen der det henvises til Lindheim, er «hospitable place» rettet til «hospitable space». (27.11.2023)

    • Nursing students’ empathetic, open and respectful attitude is perceived as a strength in meeting the spiritual care needs of patients.
    • Nursing students want to increase their knowledge in order to become more confident in raising the subject of spiritual care with patients.
    • Nursing students want to have greater courage to raise the subject of spiritual care and provide spiritual care in daily clinical practice.

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    17. Weathers E, McCarthy G, Coffey A. Concept analysis of spirituality: an evolutionary approach. Nurs Forum. 2016;51(2):79–96. DOI: 10.1111/nuf.12128

    18. Egan R, MacLeod R, Jaye C, McGee R, Baxter J, Herbison P, et al. Spiritual beliefs, practices, and needs at the end of life: Results from a New Zealand national hospice study. Palliat Support Care. 2017;15(2):223–30. DOI: 10.1017/S147895151600064X

    19. McSherry W, Jamieson S. The qualitative findings from an online survey investigating nurses’ perceptions of spirituality and spiritual care. Journal of Clinical Nursing. 2013;22:3170–82. DOI: 10.1111/jocn.12411

    20. Oslo universitetssykehus (OUS). Åndelige og eksistensielle behov hos pasienter og pårørende. Retningslinje [Internet]. Oslo: OUS; 2019 [cited 20.02.2023]. Available at: https://ehandboken.ous-hf.no/document/134012

    21. Giske T, Cone P. Discerning the healing path – how nurses assist patient spirituality in diverse health care settings. Journal of Clinical Nursing. 2015;24:2926–35. DOI: 10.1111/jocn.12907

    22. Broadhurst K, Harrington A. A mixed method thematic review: the importance of hope to the dying patient. J Adv Nurs, 2016;72(1):18–32. DOI: 10.1111/jan.12765

    23. Schiavon CC, Marchetti E, Gurgel LG, Busnello FM, Reppold CT. Optimism and hope in chronic disease: a systematic review. Front Psychol. 2016;7:2022. DOI: 10.3389/fpsyg.2016.02022

    24. Ross L, McSherry W, Giske T, van Leeuwen R, Schep-Akkerman A, Koslander T, et al. Nursing and midwifery students' perceptions of spirituality, spiritual care, and spiritual care competency: a prospective, longitudinal, correlational European study. Nurse Educ Today. 2018;67:64–71. DOI: 10.1016/j.nedt.2018.05.002

    25. Kuven BM, Giske T. Talking about spiritual matters: first year nursing students' experiences of an assignment on spiritual conversations. Nurse Education Today. 2019;75:53–7. DOI: 10.1016/j.nedt.2019.01.012                           

    26. Ødbehr LS, Kvigne K, Hauge S, Danbolt LJ. A qualitative study of nurses' attitudes towards' and accommodations of patients' expressions of religiosity and faith in dementia care. Journal of Advanced Nursing. 2015;71(2):359–69. DOI: 10.1111/jan.12500

    27. Cone PH, Giske T. Nurses' comfort level with spiritual assessment: a study among nurses working in diverse healthcare settings. J Clin Nurs. 2017;26(19–20):3125–36. DOI: 10.1111/jocn.13660

    28. Tornøe K, Hillestad A, Breistig S, Rosenvinge J, Pettersen G, Sørlie V, et al. «Eksistensiell omsorg» i bachelorutdanningen i sykepleie – en dokumentanalyse. Sykepleien Forskning. 2021;16(86895):e-86895. DOI: 10.4220/Sykepleienf.2021.86895

    29. Braun V, Clarke V. Using thematic analysis in psychology. Qualitative research in psychology. 2006;3(2):77–101. DOI: 10.1191/1478088706qp063oa

    30. Lewinson LP, McSherry W, Kevern P. Spirituality in pre-registration nurse education and practice: a review og literature. Nurse Education Today. 2015;35(6):806–14. DOI: 10.1016/j.nedt.2015.01.011

    31. Cooper KI, Chang E, Sheenan A, Johnson A. The impact of spiritual care education upon preparing undergraduate nursing students to provide spiritual care. Nurse Education Today. 2013;33(9):1057–61. DOI: 10.1016/j.nedt.2012.04.005

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    33. Tornøe K, Danbolt LJ, Kvigne K, Sørlie V. A mobile hospice nurse teaching team’s experience: training care workers in spiritual and existential care for the dying – a qualitative study. BMC Palliative Care. 2015;14(43):1–9. DOI: 10.1186/s12904-015-0042-y

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  • Where have all the nurses gone? A register-based analysis

    Bildemontasjen viser en sykepleier i uniform som står ved et bord og ordner noe, en ung dame som leser i en bok og en voksen kvinne som står og underviser

    Introduction                                                                                                                                   

    There is currently a high demand for nurses in Norway (1). According to the Norwegian Labour and Welfare Administration (NAV), the number of vacant positions doubled from 2015 to 2023, from around 2350 to 4650 (2). The demand for nurses is expected to grow in the future, with Statistics Norway projecting an increase of 46,000 full-time equivalents (FTEs) by 2040 (3). This is primarily due to demographic changes in which Norway will experience significant population ageing in the coming decades (4).

    Furthermore, both younger and older people are living longer with illnesses and conditions that require medical care. Norway’s Health Personnel Commission (1) emphasises the need for more nurses and highlights the major challenges of recruiting nurses in health and care services, particularly in primary care, but also in some specialist health services. Many nurses leave the profession because they are subject to the special age limit of 65 years, but many also leave because of health problems and receipt of health-related welfare benefits (1).

    In an international perspective, Norway has a relatively high number of nurses and a low ratio of medical support personnel per capita (5, 6). This can partly be explained by the different methods that countries use to calculate the figures. Additionally, Norway’s expansive geographical area means that the demand for nurses is higher than in more densely populated countries. Approximately 4000 new nurses graduate in Norway every year, supplemented by around 1200–1400 nurses who are educated abroad (7).

    The latter group mainly consists of immigrants, especially from other Nordic countries, but also a small percentage of Norwegians who have studied abroad. The number of nurses from outside Norway has remained relatively stable at around 5000 since 2018, as roughly the same number move to Norway as leave. Overall, nurses from other countries make up approximately 5% of nurses in Norway today.

    This proportion has remained relatively stable over the past five years. The majority are from other Nordic countries (40%). Other large groups stem from the newest Eastern European members of the EU (20 per cent), followed by the Philippines, Germany and Australia.

    In 2022, there were approximately 161,000 qualified nurses in Norway. Almost 122,000 of these were working, while 32,000 were pensioners. The rest were not part of the labour force for various reasons, such as studying, unemployment, starting a family or disability. However, not all qualified nurses work in the health service.

    Objective of the study

    In official statistics, a large number of nurses are categorised as working outside the health service. The objective of this article is to describe the factors contributing to the departure of employees from patient-centred nursing positions by showing the type of work these nurses are engaged in. We also describe their return to the health service.

    Overall, the information presented in this article can give an indication of the reserve capacity in the Norwegian health service. A narrow and ‘patient-centric’ definition of the health service has been used in line with official documents and reports that examine the future need for nursing expertise (1, 3, 8, 9).

    Method

    Data sources

    The data on education were retrieved from Norway’s National Education Database (NUDB) (10). The data on employment are from Statistics Norway’s annual register statistics on healthcare personnel (11), which is based on a-ordningen, a coordinated digital collection of information about employment circumstances, income and tax deductions for the working population living in Norway or abroad with a work affiliation to Norway in the form of financial benefits.

    The register also includes all those with a health education who have a financial connection to Norway, whether working or not. We have extracted job and industry codes, occupation, FTE percentages, working time arrangements, number of jobs held and sector, as well as personal characteristics such as age, sex and immigrant background. The statistics are based on a reference week in November each year. For people with more than one job, it is the main job that is registered, whereby everyone is only counted once.

    Variable definitions

    Everyone who is a licensed or qualified nurse, either in Norway or abroad, is encompassed by our definition of nurse. The education codes (NUS2000) that are used are 661120 – Bachelor degree, nursing, three-year, and 661104 – College of Nursing, three-year foundation programme (12). We also include nurses who have gone on to qualify as midwives and public health nurses. Each of these groups constitutes 3–4% of all qualified nurses.

    Our definition of the health service includes industries within the health and care service (industry codes 86, 87 and 88.1) (13). In the analysis, we have divided nurses into four primary categories based on a methodology that combines occupational (14) and industry codes (13):

    • Practising nurses are identified by a combination of occupational codes (patient- and service user-centred) and industry codes (the health service), and correspond to the OECD’s definition of practising nurses in the health service (9, 15).
    • Administrative nurses in the health service are nurses employed in the health and care service, but who primarily have occupational codes that correspond to administrative work.
    • Nurses outside the health service are nurses who work in industries outside the health service. Most work in education and public administration. Some may also have jobs that seem patient- or service user-centred, for example in temporary employment agency activities.
    • Nurses outside the labour force are either not registered as employed in the a-ordningen or are registered as self-employed. Older nurses often retire due to their age, while younger ones are outside the labour force for other reasons, such as care duties at home, studying, unemployment or disability.

    Ethics

    All data processing, including links and analyses, has been carried out in accordance with the Statistics Act (6). No further ethical approvals are required as we have not processed any health data.

    Statistical analyses

    Descriptive statistics have been created for the number and proportion of nurses, FTE percentages and proportion of shift work overall and by age category (< 35, 35–44, 45–59, 60+ years) in and outside the health service in 2022. When exploring job transitions, we started with all nurses working in patient-centred roles in the health service in 2016 and examine the situation in 2022, six years later. In Appendix 1, we also present changes over a short time perspective, from 2021 to 2022, i.e. one year later.

    We also show where nurses who leave patient-centred jobs in the health service end up in both a short and longer time perspective, one and six years, respectively. Thus, we examine both the influx to (from outside the health service and new graduates) and the outflux from the nursing profession to assess the total capacity. In the transition analyses, we have set the upper age limit to 55 in the year of departure to avoid including those who retired due to their age.

    We examined whether personal characteristics such as age, sex, immigration background, country of education, level of education and centrality of place of residence influenced job transitions. There was only significant variation by age and, to some extent, sex, so these are the only characteristics presented here.

    Results

    Current situation

    In 2022, there were 161,000 qualified nurses in Norway (Table 1). Of these, 38,921 are outside the labour force, and most are over the age of 70. The table shows that the majority of nurses in employment work in the health service – 80% of those below the age of 60.

    Table 1. Nurses by employment circumstances and age (n = 160 802)

    The highest prevalence (88%) of nurses working in the health service is found in the youngest group (< 35 years), and the proportion decreases with increasing age. The proportion of those working outside the health service increases with age up to 59 years. The table also shows that younger nurses (< 45 years) tend to be in employment. The distribution by sex is not shown, but the men in employment (n = 13,287) are evenly distributed in the different age groups. However, a slightly higher percentage of male nurses (13%) work outside the health service than in it (9%).

    Most of the nurses work almost full-time, with an average FTE of around 91%. However, the older nurses work slightly less. Among those in employment, the majority (87%) only have one job, and 88% of those with more than one job only have two jobs.

    Overall, more than half (56%) of all nurses employed in and outside the health service worked shifts in 2022. This proportion decreases with increasing age – from 79% among the youngest nurses to 45% among the oldest.

    In the health service, 9 out of 10 employees work directly with patients. The proportion is higher among the youngest nurses (96%) and decreases with increasing age (87% among the oldest nurses). The largest groups outside the health service work in education, public administration and social work activities without accommodation, such as kindergartens, out of hours school care etc. Most of the nurses who work in their profession outside the health service work in temporary employment agency activities.

    FTE percentages are higher outside the health service than in it, with 76% and 66%, respectively, and are lower among the oldest nurses. The greatest difference is found in shift work: 66% in the health service work in such positions compared to just 5% outside the health service. The proportion of shift workers decreases significantly with increasing age across all health services.

    According to background analyses, which are not presented here, the proportion working in the public sector is very high (85%). The analyses also show that the proportion is much higher among those working in the health service than outside it, with 92% and 49%, respectively. The proportion of nurses with a specialisation is somewhat higher in the health service (42%) than outside it (35%).

    The vast majority of nurses working outside the health service are employed in finance, administration and sales (22%), or in education or other pedagogical work (21%) (Table 2). Among the youngest, almost one-third are employed in health-related occupations, and many of these work in temporary employment agency activities. It is likely that many of these, in practice, work as nurses in the health service.

    In the age group 45–59 years, 13% are employed in management. In the oldest group (≥ 60 years), the largest proportion is self-employed (24%). There is considerable overlap between occupation and industry. By industry, the most common fields of employment are education (23%), followed by public administration (21%). The exception is observed among the youngest age group, where temporary employment agency activities is the most common industry.

    Table 2. Proportion of nurses outside the health service by occupation, industry and age (n = 19 064)

    To what extent do nurses leave patient-centred nursing?

    In the short period from 2021 to 2022, only 5% ceased to be practising nurses in the health service, see Appendix 1. Table 3 shows that the proportion is somewhat higher (13%) in the longer period from 2016 to 2022. Among those who remain in the health service, full-time and shift work are most common among the youngest age group and becomes less common with increasing age.

    However, the difference between shift work in the health service and outside it is much more pronounced, at 63% and 7% per cent, respectively. For the proportion of these in full-time positions, the corresponding figures are 69% and 80%.

    Table 3. Breakdown of job transitions for nurses working in service user and patient-centred positions in the health service in 2016

    Where have all the nurses gone?

    Table 4 shows which occupations and industries former practising nurses most often move to in a short and longer time perspective. The starting point is therefore practising nurses in 2021 and 2016 who, by 2022, have moved to a different field. The table shows that, in the short time perspective, most of the nurses move to public administration and education (both 18%), social work activities (16%) and temporary employment agency activities (12%). It is primarily the youngest nurses (under 35 years ) who switched to the latter group, while the older age groups moved to the first two groups.

    Over a more extended period, the predominant industries remain largely consistent with those in the short time perspective. However, there is a slight increase in transitions to education (25%) and public administration (23%), accompanied by a decrease in transitions to temporary employment agency activities (6%).

    Table 4. Transitions from patient-centred nursing in the health service in a short and longer time perspective

    In terms of occupation, the majority moved to health-related occupations, both in the short and longer time perspectives, with 31% and 25%, respectively. The age distribution is even in the short time perspective, while in the longer time perspective, moving to these occupations is more common among the oldest age group. Many also switched to finance, administration and sales, with 17% in the short time perspective and 21% in the longer time perspective, or to education or other pedagogical work, with 16% and 22%, respectively. There is not much variation by age, but in the short time perspective, relatively few of the youngest nurses transitioned to the education sector.

    How many return to patient-centred nursing in the health service?

    The majority of newly qualified nurses start their careers as practising nurses – 55% in the specialist health service and 37% in primary care (data not shown). This is also the case for those returning to the health service (Appendix 2).

    A total of 45% entered the labour force, with a higher percentage observed among the youngest age group. It is possible that many of them continued onto further studies or took a break for other reasons. Many also returned from public administration (16%), social work activities without accommodation (9%), education and temporary employment agency activities (both 7%) (Appendix 2).

    Most returned to a position with a higher FTE percentage than they had the preceding year, and many moved to a position with less shift work (data not shown). Appendix 3 shows that the majority returning from outside the labour force and outside the health service take up positions in primary care, with 59% and 65%, respectively. The proportion who moved to patient-centred work is higher among those from outside the labour force than from outside the health service, for both primary care and the specialist health service.

    Discussion

    Nine out of ten nurses in the health service work in patient-centred positions. Despite one in three having part-time positions, some have more than one job. This means that the potential to increase FTE percentages is already virtually exhausted within this group.

    The largest groups who are categorised as working outside the health service work in education, public administration or temporary employment agency activities. We have shown that most nurses who change jobs or leave the profession move to positions with a higher FTE percentage or with no shift work. The latter is most common in roles with no direct patient contact. These motives can therefore partly explain their move away from patient-centred work.

    In summary, the vast majority of nurses who are not categorised as working in patient-centred roles hold positions where their nursing education is either a prerequisite or is relevant to their duties. Although graduate level nursing education primarily focuses on clinical work, students learn a wide range of skills that are transferable to other fields: nurses’ experience from the health service may be relevant for jobs in public administration, particularly ones that are related to the health sector.

    The same applies to nurses who are involved in the education of future healthcare workers. Our findings indicate that the proportion of nurses who work ‘unnecessarily’ outside the health and care service is relatively small, which is consistent with other countries (16). This is in line with the Health Personnel Commission, which concluded that nurses often find work in sectors where their specific skills continue to be beneficial to the health service (1).

    What factors can impact on recruitment and staff turnover in the profession?

    Various factors can influence a nurse’s decision to leave the profession (17, 18), defined as leaving patient-centred nursing in the health service. Our study cannot explain the reasons behind these career choices; however, two systematic reviews highlight personal characteristics, job demands, type of appointment, quality of the working environment and organisational culture as crucial elements in such decisions (17, 18).

    The turnover rate of nurses is particularly high for those at an early stage of their career due to a combination of culture shock and heavy workloads (18). A Swedish survey examining why nurses leave the profession found that poor working conditions, unfavourable working hours, stress and heavy workloads were the most common reasons (16). In Norwegian studies of primary care, almost half of the nurses reported inadequate staffing levels and an excess of unqualified care workers in their workplace (19, 20).

    The staffing situation directly impacts on nurses’ health at work and job satisfaction (20). This is supported by another Norwegian study, which identified these as two key factors in the decision-making process for nurses considering leaving their job, especially among the youngest age group (21).

    In both Sweden and Norway, it has been concluded that services at risk of high turnover rates and/or that are seeking to encourage nurses to return to patient-centred roles can reverse the trend by ensuring a more manageable workload relative to working hours. They can also make it easier for nurses to avoid unwanted shifts and offer permanent jobs and full-time positions (16, 20).

    To attract and retain as many nurses as possible in patient-centred services, the Health Personnel Commission recommends implementing measures that promote increased uptake and completion of a nursing education, enhance the quality of the education and clinical placements, and improve recognition of prior learning and work experience. These efforts will help to maximise the pool of people with the necessary qualifications to work as a nurse. Fewer details are given of the specific competencies that should ideally be included and at what levels they should be applied.

    We have shown that the vast majority of qualified nurses are practising nurses, especially the youngest graduates. There does not therefore appear to be a problem in terms of the supply of nurses to the profession, but capacity challenges may arise in patient-centred services if a significant proportion does not remain in these roles over time. The precise point at which this becomes problematic is not clear, and the potential implications for other areas where nursing skills are needed are also not discussed (1).

    According to the Health Personnel Commission, the capacity can also be increased if those currently working part-time in the health service are given more hours and a more favourable division of tasks (1). As mentioned above, our data suggest that the overall potential to increase the hours of part-time employees may already have been exhausted. However, a more favourable division of tasks could make it more appealing to remain and/or return to patient-centred work. Better opportunities for professional development, more interesting duties and favourable working hours can all help to enhance job satisfaction and competence. This could increase capacity by reducing sick leave and early departures from the profession (1).

    Higher salaries are reported to be an important factor in studies that either examine risk factors for nurses leaving the profession (20) or their reasons for leaving patient-centred work (16). Norwegian trade unions and authorities also point out that higher salaries are important for both attracting and retaining staff (22). However, systematic reviews show that salary is not necessarily the decisive factor in retaining employees (17).

    This could be because nurses are not guaranteed a higher salary outside the health sector in Norway (23). When they do receive a higher salary, it is partly due to the fact that the average age – and thus competence and length of service – of these nurses is higher (24). The exception here is within temporary employment agency activities, where the average age of nurses is lower, but the salary is higher than in the health and care services (24). Therefore, it is not only age that impacts on differences in pay, and this needs to be investigated further.

    The Health Personnel Commission cautions against the belief that Norway can solve the future challenges in the health and care sector by importing labour. On the one hand, it points out that a conscious focus on importing labour will make the health service more vulnerable because foreign healthcare personnel are more mobile. Meanwhile, imported labour may be unsupportive towards other countries that also have a demand for their labour. However, the commission notes that a continued influx of doctors and nurses from abroad will be necessary (25).

    In our view, it is uncertain whether Norway will be able to attract a sufficient number of migrant workers in the coming decades to increase the supply of well-qualified health care staff. Ageing and the demand for labour are not uniquely Norwegian phenomena (25). It is conceivable that traditional labour-export countries may make it more attractive for nurses to work in their own country, while Norway faces strong competition for this type of labour from other countries with a less protectionist approach to ‘brain drain’ (26, 27).

    Does staff turnover in the nursing profession differ from that of other professions?

    Nursing is predominantly a female profession in the public sector, as is teaching in primary and lower secondary schools. A report comparing graduates from these professions in 2005 and 2015 found no significant difference in the turnover rates (23). Many also start their careers working for employment agencies but move to the public sector after a period of time. A key finding is that the number who remain in the health service three years after completing their education has actually increased over time (23).

    Another reason why nurses leave the health service, which is not addressed here, is health-related absenteeism. According to NAV, sick leave rates are particularly high in the health service, especially for nurses (28). According to Statistics Norway, this type of absenteeism increases with age (29). Adequate capacity is vital in the health service going forward, and the Health Personnel Commission therefore recommends measures to improve older nurses’ health at work as well as strategies to postpone their retirement (1).

    Strengths and weaknesses of the study

    This study has many strengths. It is based on register data and thus includes the entire population of nurses in Norway. We examine both cross-sectional and longitudinal perspectives with changes in a short and longer time perspective. The register data enabled us to prospectively record information on many different characteristics of individuals and their employment circumstances. However, this data does not provide insight into why people make the choices they do.

    Another weakness was the lack of opportunity to examine earned income in this study. The extent to which salary plays a role in the choice of workplace and position should be further examined. There are also some challenges related to errors and/or omissions in our register data, particularly in relation to undisclosed occupations and/or industries. Some of these people are likely to be sole proprietors engaged in patient-centred roles, but it was not possible to clarify this.

    It is likely that temporary employment agency activities encompass many who are employed as nurses in the health sector, but whom we are unable to identify as practising nurses because we do not know if they work in patient-centred care or more administrative roles. Furthermore, there are most likely some misclassifications of occupations in certain organisations. It is unlikely that such a large proportion work as a ‘nurse’ in industries outside the health service as indicated in the register data from Statistics Norway and similar institutions.

    Finally, our age limit parameters mean that we have not examined job changes among the oldest group of nurses in employment. This is because we wanted to look at staff departures to/from other organisations as opposed to exits from the labour force. A relatively large proportion of the oldest nurses will likely have retired due to age or disability. Nevertheless, the overall figures are relatively clear, and the findings are consistent. The weaknesses in the main conclusions are therefore not considered significant.

    However, to further understand why nurses make the career choices they do, further studies using different data and methodologies are required. This would give both the authorities and the Norwegian Nurses Organisation a more realistic picture of the future potential for sustainability and preparedness in nursing in Norway.

    Conclusion

    Our findings suggest that Norway’s nursing capacity is currently being well utilised, and that there is no large reserve of nurses. Most of those who appear to have left the profession work in relevant positions that contribute to professional development, quality in the health service and patient safety, but without direct patient contact. It may therefore be difficult to achieve the capacity increase set out in the Health Personnel Commission’s report.

    Could the current categorisation of where nurses work give the false impression that many nurses are not utilising their education and expertise and that they represent a reserve that can be recalled to patient-centred positions in the health and care service? In order to ensure the necessary supply of nurses, a continued focus on education and the import of nurses will be crucial, partly because a large proportion will soon reach an age where it is common to stop working.

    The authors declare no conflicts of interest.

    Open access CC BY 4.0.

    Peer-reviewed article
    Publication type
    Publication Year
    2023
    Edition Year
    18
    Publication Number
    93304
    Page Number
    e-93304

    This study shows that there is no large reserve of nurses. The vast majority hold relevant positions, but without direct patient contact.

    Article is Peer Reviewed
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    Research
    English
    Sammendrag

    Background: Almost 122,000 registered nurses are currently employed in Norway, but the demand for them is high and will increase in the future.

    Objective: We aimed to investigate whether there is a group of nurses who can be recalled to patient-centred work. The findings can provide insight into the future potential for sustainability and preparedness in the health and care service.

    Method: Using descriptive analyses of register data from Statistics Norway, we shed light on the current situation. We examine transitions to and from patient-centred nursing in the health and care industry in a short and longer time perspective.

    Results: According to official statistics, 16% of registered nurses work outside the health service. The majority in the ‘Nurses’ category work in temporary employment agency activities. Many others hold positions relevant to nursing and work in education, research and public administration in central government and local authorities. Even though one in three nurses in patient-centred work hold part-time positions, many of them have more than one job, and on average, nurses work almost full-time overall (91%). The majority who leave patient-centred work move to positions with longer hours and/or no shift work, either in or outside the health service.

    Conclusion: Our findings indicate that there is no large reserve of nurses. The vast majority hold relevant positions within nursing development, quality in the health service and patient safety, but without direct patient contact. Achieving the capacity increase proposed by Norway’s Health Personnel Commission could therefore be a challenge. The health statistics’ categorisation of where nurses work can thus give the false impression that many nurses are not utilising their education and expertise and that they represent a reserve that can be recalled to the health service. In order to safeguard the necessary supply, the focus on education and the import of nurses must continue, partly because a large proportion will soon reach an age where it is common to stop working.

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    1

    Correction in table 2:

    Total number, All, has been corrected from 19 to 19 064.

    • Few people with a nursing education perform work where their education is not suitable.
    • The nursing capacity is currently being well utilised.
    • A substantial increase in capacity may be difficult to achieve without increasing the focus on education and the import of nurses.

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    13.          Statistisk sentralbyrå (SSB). Standard for næringsgruppering [Internet]. SSB; 27.02.2009 [cited 08.08.2023]. Available at: https://www.ssb.no/virksomheter-foretak-og-regnskap/nace

    14.          Statistisk sentralbyrå (SSB). Standard for yrkesklassifisering [Internet]. SSB; 2011  [cited 08.08.2023]. Available at: https://www.ssb.no/klass/klassifikasjoner/7

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    17.          De Vries N, Boone A, Godderis L, Bouman J, Szemik S, Matranga D, et al. The race to retain healthcare workers: a systematic review on factors that impact retention of nurses and physicians in hospitals. Inquiry. 2023 Jan.–Dec.;60:00469580231159318. DOI: 10.1177/00469580231159318

    18.          De Vries N, Lavreysen O, Boone A, Bouman J, Szemik S, Baranski K, et al. Retaining healthcare workers: a systematic review of strategies for sustaining power in the workplace. Healthcare. 2023;11(13):1887. DOI:10.3390/healthcare11131887

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  • Living with chemotherapy-induced peripheral neuropathy

    Bildet viser to hender, der den ene holder i den andre for å signalisere smerte

    Introduction

    Cancer treatment is continuously evolving and this has led to an increased rate of survival in relation to many forms of cancer. Unfortunately, many people experience side effects or complications posttreatment. These are defined as long-term effects if they persist or appear more than a year after treatment has been concluded (1).

    Some types of chemotherapy can cause damage to the peripheral nerves. This damage is referred to as ‘chemotherapy-induced peripheral neuropathy’ (CIPN). Neurotoxic chemotherapeutics include platinum agents, vinca alkaloids and taxanes, which are used to treat common forms of cancer. As a result, many cancer patients are affected by CIPN (2).

    CIPN primarily affects the hands and feet, and patients mostly describe having sensory symptoms such as numbness, paresthesia, pain and hypersensitivity to mechanical or cold stimuli (2). Although CIPN is temporary for many patients, it is estimated that about 30% will still have symptoms more than a year after concluding treatment (3). It is uncertain whether the long-term effects are reversible (4).

    CIPN can lead to a decline in physical function and a higher risk of falls (5), a reduction in quality of life (6), as well as increased psychological distress and sleep disturbance (7). No effective preventive measures or treatment have been found for CIPN (8). The best preventive strategy is to reduce the dose or cease treatment with the neurotoxic medication, which can affect tumour management and survival (2).

    Qualitative studies have shown that it is difficult to describe what it is like to experience CIPN because the symptoms are diffuse (9–11). A meta-synthesis from 2017 (12) showed that CIPN had an extensive and harmful impact on patients’ lives: at home, at work, in social contexts and in relation to leisure activities. A recent Danish study (13) of cancer survivors indicated that the symptoms could be difficult to ignore. The symptoms gave cancer survivors the feeling of being ill, even though they had recovered from cancer. The limitations in daily life affected their enjoyment of life.

    One study also showed that patients did not consider CIPN important until the symptoms became severe and there was uncertainty as to whether they would pass (10). Others have pointed to a lack of information (12) and that patients have felt they were left to fend for themselves in managing the symptoms (14).

    It has also been shown that some patients adapted or became used to the long-term symptoms (10, 15) and developed various strategies to reduce the impact that CIPN had on their daily lives (16).

    Antonovsky (17) emphasised what promotes health, rather than the causes of disease. He developed the concept of ‘sense of coherence’ (SOC), which is linked to a person’s ability to cope with and adapt to different challenges in life. The concept of SOC consists of the core elements ‘comprehensibility’, ‘manageability’ and ‘meaningfulness’. Research has demonstrated a clear relation between SOC and perceived health and quality of life (18, 19). A strong SOC can, therefore, have significance in relation to how a person is able to live with different health problems, such as long-term effects after cancer treatment.

    According to Tanay et al. (12), differences in the structure and distribution of health services can lead to variations in understanding and management of CIPN. Few qualitative studies exploring patients’ experiences of CIPN have been carried out, and many of them are older studies. Therefore, there is a need for more contemporary studies that shed light on this issue. This knowledge is vital for improving health services for these patients.

    Objective of the study

    This study aimed to explore the experiences of a sample of cancer survivors in Norway living with the long-term effect CIPN.

    Method

    Design

    We used a qualitative research design, in which we were most interested in the participants’ experiences of living with peripheral neuropathy.

    Sample and recruitment

    The sample was strategic and we wanted to achieve a variation in age, gender and type of treatment (Table 1). The inclusion criteria were: symptoms of CIPN for more than a year after concluding treatment with neurotoxic chemotherapeutics; over 18 years of age; Norwegian speaking and willing and able to verbally express their experiences. People with neuropathy caused by other factors and those who had started a new round of treatment were excluded.

    Participants were recruited from an outpatient cancer clinic at a major hospital in Norway. Suitable patients were invited to participate via telephone or during an appointment at the outpatient clinic. If they were interested, they granted the first author permission to ring them to provide more information.

    Table 1. Participant profile

    Implementation and data collection

    The first author conducted the interviews at the hospital from October to November 2019. One interview was conducted in a private home at the participant’s request. The interviews were semi-structured, and were accompanied by an interview guide (Table 2) with open-ended questions regarding the participants’ experiences of living with CIPN and the impact that the long-term side effects had on their daily lives.

    The interviews, which lasted from 33 to 68 minutes, were digitally recorded and transcribed by the first author. We obtained demographic variables before or after recording. Information regarding treatment and the time of treatment was obtained from the hospital’s medical records.

    Table 2. Interview guide

    Analysis

    We analysed the data using systematic text condensation as described by Malterud (20, 21). First, we gained an overall impression of all the interviews, while noting down provisional themes that aroused interest. After a discussion among the authors, two provisional themes, the consequences of the problems and how the patients responded to them, were selected as a basis for further code groupings.

    In working with the codes, we used the qualitative data analysis software NVivo. The first author coded and identified meaning units that elucidated the themes, which were then discussed by the authors and sorted into subgroups. The subgroups were adjusted and revised under way as we identified new patterns. After that, their content was condensed into a summary that captured the essence of the meaning.

    Finally, we summarised the findings and presented them in result categories. Two main categories emerged: ‘Bodily changes’ and ‘Learning to live with it’. Several subcategories showed different aspects of these. Examples from the analysis process are shown in Table 3.

    Table 3. Systematic text condensation – examples from the analysis

    Ethical considerations

    The study was approved by the Regional Committee for Medical and Health Research Ethics (REK), reference number 2019/7112, and carried out in line with the rules for protection of personal data.

    The participants received an information letter and consent form via email prior to the interview, with the exception of one who wanted to collect this in person. The consent form was signed in conjunction with the interviews. All data were stored on a research server that only the first and last authors had access to. We deleted the data after the project was concluded.

    Sharing personal experiences can leave a person feeling vulnerable. We had a strong focus on being aware of this when meeting participants. The interviewer’s experience as an oncology nurse was considered to be a strength.

    Results

    The analysis led to the overall theme of ‘A changed life’. Life after cancer treatment was different to what patients had expected, and they adapted to this change in various ways. The result categories are presented in Figure 1.

    Figure 1. Result categories

    Bodily changes

    Numbness, paresthesia, stiffness, pain or a cold sensation in the hands and feet led to sensory loss and impairment of fine motor skills, which impinged on activities of daily living and self-realisation. Several participants described having tired or restless legs and difficulties feeling the ground under their feet and judging where to plant their feet, which affected their balance. Most of them reported that the sensation of cold bothered them:

    ‘There isn’t a day when I don’t feel it because of the paresthesia, and the sensation in my fingertips is very odd and highly sensitive to the cold. Like this past week, it was down to zero and a couple of degrees below, so it bit into my fingers straight away, very sensitive. I wasn’t like that before.’

    Activities of daily living

    The sensitivity to cold caused discomfort when handling steel cutlery and fetching things from the refrigerator or freezer. One woman related how she could not manage to hang up wet clothes or wash the floor. Some had difficulty sleeping due to pain or ice-cold legs. Others said that they had fallen due to problems with their balance. The restlessness in legs and fingers could be more noticeable and troublesome when they sat down to relax. Tasks that required fine motor skills, such as picking up things that had fallen on the floor, opening a packet of cheese or cutting up a carrot, had now become difficult:

    ‘Just getting hold of these bank cards, and these cards, getting them out – you push them right down in your wallet, don’t you. Sometimes I try and try […] The sort of thing that you don’t think about at all, you know, it’s no problem, but it is.’

    Whether they found that the problems created difficulties in working life depended on whether they had the option to vary work tasks. Leafing through papers and typing on the computer were considered difficult. One woman said that she was not able to work full days because her fingers became stiff, ice-cold and painful.

    Life-giving activities

    Neuropathy-related problems affected activities that could mean a great deal to the individual. After a long day at work, one woman experienced such discomfort in her legs that she was not able to participate in social events in the evening. It affected the choice of clothing and shoes, because it was difficult to fasten buttons, zips and jewellery, and shoes could not be too tight:

    ‘If I’m going to get dressed up, then I have to stick to flat shoes. And that has to do with balance, you know. And they can’t be those narrow, pointed shoes I used to like wearing before, either.’

    Walking in nature was important for several of the participants, which now felt less safe. They described feeling discomfort in their legs, being unsteady and a fear of falling. Some said that they felt greater pain if they bumped into something, while others did not feel it when they got a scratch. Activities such as cycling and running could also be difficult. One recalled that he had played football all his life, but that he had to learn it all over again because he had lost his feel for the ball.

    Learning to live with it

    The participants described how they had learned different ways to live with the challenges caused by neuropathy.

    Adapting to a new normal

    When their neuropathy bothered them, some participants tried to relieve this by pressing on the painful areas. One described how, when it was at its worst, she held a can of cold beer or fizzy drink because she thought that the iciness could drown out the pain, while another said that she sat in the bathroom at night because it helped to have her feet on the heated floor.

    Some had found different tips on the internet, such as lotions, electrically heated insoles, vitamin B, acupuncture or physiotherapy, and they described it as ‘trial and error’. They also used techniques to distract themselves, such as listening to an audiobook or watching a film.

    Their accounts showed that participants had found practical solutions that helped them to function better in daily life. These solutions varied from dressing techniques, choices of clothing and shoes, and adaptation through concentration and by doing things more slowly.

    Some said that they had become more dependent on other senses, such as looking at what they were holding in their hands or where they planted their feet. One used his hearing to listen to how the motor reacted when he drove a car, as he could not sense the pedals in the same way as before. For some, this had become the new normal:

    ‘But if I was suddenly changed back to how I used to be, then I would probably have noticed, “Oh, is that how it was”. So, for me it’s a bit like this is the new normal […] Because when you’ve lived with this for two and a half years, then it’s a bit like maybe you’ve forgotten how your old life was.’

    How you deal with it

    To start with, they thought that the symptoms would go away, while later, they hoped that they would improve. Now, most of them realised that they would probably have to live with the symptoms to some extent. Their attitude to their situation was that it was not going to stop them, or that they did not want to think negatively. Some accepted the fact that they could not do anything about it. They also highlighted personal characteristics, such as being positive or having the ability to adapt:

    ‘So, I just try to live as normally as possible, do things like I used to. And just accept that, some days, I won’t be able to do what I want to do as well as I could before.’

    Several participants viewed their neuropathy-related problems in relation to other problems they had. Some of them had more serious long-term effects and neuropathy was therefore less important. In addition, some pointed out that they had good support, while others felt that they were lucky to have recovered and were grateful for that.

    The price you have to pay

    The participants stressed how important it was to have recovered from cancer. This helped many of them to accept the negative consequences of treatment, as they felt they had had no other choice:

    ‘But I wouldn’t have chosen to do things differently, you know, because I was really focused on having as good a prognosis as possible, that was the most important thing for me. So I think a lot about it in hindsight, in relation to long-term side effects, that despite everything, I wanted to survive. And so many of the people that sat with me and had the same treatment are no longer alive, you know, so that makes me feel really lucky to have survived.’

    Although many of the participants accepted that neuropathy was the price they had to pay, subtle distinctions emerged. It was easier to accept side effects during treatment than afterwards, when returning to their daily lives. In addition, some participants experienced a lack of understanding and an expectation from others that they should be happy because they were well. These expectations, both their own and those of others, made it more difficult to accept that life had changed:

    ‘When you think that the days are going to return to normal – you think you are going to be the way you were before cancer, and then you have to realise and accept that they aren’t and that you will probably never be the same again either – that’s worse.’

    Discussion

    A changed life

    The participants’ descriptions of bodily changes and how these impact on daily life correspond with findings in previous studies (10, 11, 13, 14, 16, 22). How prominent and troublesome the sensation of cold was several years after concluding treatment has not been as clearly described in other qualitative studies.

    How neuropathy affects movement and sensation in relation to the ground underfoot is known from previous studies (9–11, 14, 16). Several of the participants described having balance problems and some had experienced falls. A connection between CIPN and increased fall risk has been shown in previous studies (5, 23, 24).

    Several studies have pointed to negative consequences as a result of having to refrain from pleasurable activities (11, 13, 15, 25). In our study, several participants highlighted how neuropathy-related problems had affected their ability to go for walks in nature. Some also described that it was a loss to no longer be able to play the piano or go for a run. These findings show that the significance of living with the long-term side effect CIPN should not be underestimated.

    Despite the fact that participants described problems that had considerably changed their lives, it was their attitude and how they dealt with these changes that perhaps surprised us the most. Therefore, we chose to view the results in the light of the core elements of SOC (17).

    Manageability

    ‘You learn to live with it and accept the situation,’ said one participant. Several others made similar comments. According to Antonovsky (17), people who have a strong SOC manage to live with problems that cannot be solved. Drott et al. (15) found that the perception of CIPN changed over time. During the first year after treatment, patients went from believing it would pass to doubting this, before they adapted and finally learned to live with the effects of CIPN.

    As the participants in our study concluded treatment more than a year ago, their attitude and how they dealt with the situation may be related to what stage they had reached in the process at the time of the interview.

    Participants described circulation-stimulating measures and cognitive techniques as symptom-relief measures. This finding is in line with previous studies (10, 13, 16, 22). By planning more effectively, using practical solutions and allowing more time, they adapted to the situation. Speck et al. (16) called this ‘logistics to simplify demands’.

    Several participants reported that they had gradually got used to living with the effects of CIPN. This habituation is also described by Bakitas (10) as conscious or unconscious cognitive processes, such as reducing, denying or ignoring.

    In the study, it emerged how participants adapted and actively managed their problems. Manageability, according to SOC, involves the ability and potential to deal with adversity in life using available resources (17). Ego identity, which is the perception of oneself as a person, is highlighted as a key resource for dealing with adversity (26). Some participants referred to themselves as positive or as having the ability to adapt. One man described himself as stubborn and said that neuropathy would not stop him.

    Meaningfulness

    The participants talked about a range of areas that were important and meaningful to them. For some, this included walking in nature; for others, it entailed returning to work. One woman said that she loved reading and that she was happy she could still do it. Familial support was also highlighted as important. Meaningfulness, according to SOC, involves having areas in your life that are important, including emotionally. This is the most important element in SOC because this is where motivation derives from (17).

    According to Antonovsky, flexibility in meaningful areas of life can be an effective method for preserving a strong SOC. One participant related that he viewed life differently after cancer, and that he could despair if people complained over trivial things. Several of the participants saw their problems in relation to more important areas in life, and this made these problems feel less significant. The significance of CIPN for the individual can, therefore, depend on which areas in life are affected.

    A key finding in the study was the importance of surviving cancer. Some people expressed gratitude for being alive, which also emerged in the study by Drott et al. (15). Regardless of what the individual describes as important in life, there are some areas that cannot be excluded if you are to have a strong SOC. One of these areas involves existential topics such as death (17).

    The importance of survival may be so strong that CIPN is largely accepted as the price you have to pay. That long-term side effects are something you must accept has also been reported in two previous studies (10, 25), in which participants viewed their problems as a consequence of treatment that they just had to tolerate in order to recover from cancer.

    In a recent study (13), participants had encountered doctors and others who believed that CIPN was the price you had to pay to become well again. Nevertheless, health personnel must recognise the consequences of this price. If they do not, it may result in cancer survivors not being met with understanding and offered help to relieve their problems.

    Comprehensibility

    The cognitive element in SOC is ‘comprehensibility’, which means that the situation a person is in is perceived as understandable, predictable or can be explained in relation to a context (17). Several participants said that in the beginning, they thought the neuropathy-related problems would go away. Uncertainty related to the duration of their symptoms can have resulted in the feeling that the period after treatment was less predictable. The core elements in SOC are interrelated; that is, the feeling of manageability is connected with a high level of comprehensibility. In order to mobilise resources, a person must first understand what they are facing (17).

    Some people described an expectation that things would be as they were before, which made it more difficult to accept the changes brought by cancer. One meta-synthesis (27) showed that many patients felt poorly prepared for the symptoms that prevailed long after treatment had ended. In another study, researchers found that unexpected symptoms such as CIPN led to higher distress levels (28).

    Another meta-analysis showed that SOC had a significant negative correlation with distress in cancer patients (29). Being prepared for the fact that life might change as a result of cancer treatment can help make it easier to manage the changes.

    Strengths and weaknesses of the study

    The study’s qualitative design, with the use of individual interviews, is a suitable method for capturing people’s experiences of change in their lifeworld (30). The participants spoke openly and provided detailed descriptions, which contributed to a rich body of data.

    A weakness of the study is that participants were only recruited from one hospital. Nevertheless, there are national standards for treatment and follow up based on the National Cancer Strategy (31), so it is likely that patients from other hospitals will have received the same treatment. We did not collect information about the degree of neuropathy, which is a limitation in the study.

    Recruitment via health personnel may have influenced which experiences participants shared. Many patients are grateful to their doctors. This can lead to a more positive attitude. Therefore, it was important to make participants aware that the researchers were independent of the treatment institution, and that all information given was treated confidentially.

    The first author’s profession and proximity to the field of research has made it important to take a reflexive approach throughout the entire process, to avoid the influence of preconceptions in both the interview situation and analysis. However, we consider our thorough knowledge of the field to be a strength, enabling us to ask relevant questions (30).

    Conclusion

    The findings in the study indicate that CIPN can affect major parts of the daily lives of cancer survivors. Through adaptations in daily life, most of them, nevertheless, functioned well, and many said that they had learned to live with these problems. It appears that gratitude over surviving cancer contributed to their acceptance of the problems and limitations caused by neuropathy. However, the study shows that expectations of recovery after treatment make it more difficult to accept that daily life has changed.

    Implications for clinical practice

    These expectations have implications for the field of clinical practice. Health personnel should better prepare patients for the fact that daily life may change as a consequence of cancer treatment. Knowledge regarding what significance CIPN may have for a person’s life is important in addressing these patients.

    As understanding is vital to managing a changed life situation, it is essential to inform patients about long-term effects. Such effects can emerge several years later, which makes it more difficult to inform them about this. When and how information is provided should be discussed in the medical communityand emphasised in future research.

    There is also a need for research on preventive and therapeutic measures for CIPN. Furthermore, research is needed on how to help patients cope with a changed life as a result of cancer treatment.

    The authors declare no conflicts of interest.

    Open access CC BY 4.0.

    Peer-reviewed article
    Publication type
    Publication Year
    2023
    Edition Year
    18
    Publication Number
    93305
    Page Number
    e-93305

    Bodily changes after cancer treatment affect the daily lives of cancer survivors. They have learned different ways to live with these challenges.

    Article is Peer Reviewed
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    Research
    English
    Sammendrag

    Background: The increasing number of cancer survivors means that many people are living with long-term effects after cancer treatment. Chemotherapy-induced peripheral neuropathy is a long-term effect that can impact on the life quality of those affected.

    Objective: The aim of the study was to gain greater insight into what it is like to live with chemotherapy-induced peripheral neuropathy.

    Method: The study has a qualitative design. We conducted semi-structured in-depth interviews with eight participants who all had symptoms of peripheral neuropathy more than a year after concluding chemotherapy treatment. The transcribed interviews were analysed using systematic text condensation. The findings of the study are discussed in the light of Antonovsky’s concept of ‘sense of coherence’.

    Results: The analysis led to the overall theme of ‘A changed life’. Two main categories emerged: ‘Bodily changes’ and ‘Learning to live with it’. The subcategories showed different aspects of these. Bodily changes affected activities of daily living and life-giving activities. The factors that had a bearing on how they learned to live with the changes included adaptations of various kinds to a new normal, their attitude towards the challenges they faced and an acceptance of side effects as the price they had to pay for surviving cancer. However, they also had expectations that life would be the same as before their cancer treatment. This made it more difficult to accept that their lives had changed.

    Conclusion: It is important that health personnel know about how long-term chemotherapy-induced peripheral neuropathy can impact on the daily lives of those who are affected. In order to help patients cope better with a changed way of life as a result of cancer treatment, health personnel should prepare them for the fact that life might not be the same as before.

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    • Many cancer survivors live with various long-term effects after cancer treatment. Through the accounts of eight participants, this study provides insight into how the long-term effect of chemotherapy-induced peripheral neuropathy can have an impact on the daily lives of cancer survivors.
    • The study also provides knowledge about how participants learned different ways of living with the challenges they faced.
    • The study reveals a need to prepare patients for the fact that life after cancer treatment may not necessarily be the same as before.

    1.         Helsedirektoratet. Seneffekter etter kreftbehandling. Rapport. Oslo: Helsedirektoratet; 2020. IS-2872. Available at: https://www.helsedirektoratet.no/rapporter/seneffekter-etter-kreftbehandling/Seneffekter%20etter%20kreftbehandling.pdf/_/attachment/inline/3d984c2a-7926-4d1a-a5f0-06d48fe7c95f:f3e498d059734ff34b013c1c206877e488e95600/Seneffekter%20etter%20kreftbehandling.pdf (downloaded 16.03.2023).

    2.         Flatters SJL, Dougherty PM, Colvin LA. Clinical and preclinical perspectives on Chemotherapy-Induced Peripheral Neuropathy (CIPN): a narrative review. Br J Anaesth. 2017;119(4):737–49. DOI: 10.1093/bja/aex229

    3.         Colvin LA. Chemotherapy-induced peripheral neuropathy: where are we now? Pain. 2019;160 Suppl 1(Suppl 1):S1–10. DOI: 10.1097/j.pain.0000000000001540

    4.         Kerckhove N, Collin A, Condé S, Chaleteix C, Pezet D, Balayssac D. Long-term effects, pathophysiological mechanisms, and risk factors of chemotherapy-induced peripheral neuropathies: a comprehensive literature review. Frontiers in Pharmacology. 2017;8(86). DOI: 10.3389/fphar.2017.00086

    5.         Winters-Stone KM, Horak F, Jacobs PG, Trubowitz P, Dieckmann NF, Stoyles S, et al. Falls, functioning, and disability among women with persistent symptoms of chemotherapy-induced peripheral neuropathy. Journal of Clinical Oncology. 2017;35(23):2604. DOI: 10.1200/JCO.2016.71.3552

    6.         Mols F, Beijers T, Vreugdenhil G, Poll-Franse L. Chemotherapy-induced peripheral neuropathy and its association with quality of life: a systematic review. Supportive Care in Cancer. 2014;22(8):2261–9. DOI: 10.1007/s00520-014-2255-7

    7.         Hong JS, Tian J, Wu LH. The influence of chemotherapy-induced neurotoxicity on psychological distress and sleep disturbance in cancer patients. Current oncology. 2014;21(4):174. DOI: 10.3747/co.21.1984

    8.         Loprinzi CL, Lacchetti C, Bleeker J, Cavaletti G, Chauhan C, Hertz DL, et al. Prevention and management of chemotherapy-induced peripheral neuropathy in survivors of adult cancers: ASCO Guideline update. Journal of Clinical Oncology. 2020;38(28):3325–48. DOI: 10.1200/JCO.20.01399

    9.         Pedersen B, Jensen MÆ, Yilmaz MN, Mørch CD, Feilberg C. A peculiar experience – everyday life with chronic sensory disturbances after oxaliplatin treatment for colorectal cancer – a phenomenological study. International Journal of Qualitative Studies on Health & Well-Being. 2021;16(1):1–13. DOI: 10.1080/17482631.2021.1950889

    10.       Bakitas MA. Background noise: the experience of chemotherapy-induced peripheral neuropathy. Nurs Res. 2007;56(5):323–31. DOI: 10.1097/01.NNR.0000289503.22414.79

    11.       Tofthagen C. Patient perceptions associated with chemotherapy-induced peripheral neuropathy. Clin J Oncol Nurs. 2010;14(3):E22–8. DOI: 10.1188/10.CJON.E22-E28

    12.       Tanay MA, Armes J, Ream E. The experience of chemotherapy-induced peripheral neuropathy in adult cancer patients: a qualitative thematic synthesis. Eur J Cancer Care. 2017;26(5):e-12443. DOI: 10.1111/ecc.12443

    13.       Jensen MAE, Mørch CD, Yilmaz MN, Feilberg C, Pedersen B. A new self-understanding as chemo sufferer – a phenomenological study of everyday life with chemotherapy induced neuropathy among survivors after colorectal cancer. International Journal of Qualitative Studies on Health & Well-Being. 2022;17(1):1–13. DOI: 10.1080/17482631.2022.2049437

    14.       Tanay MA, Armes J. Lived experiences and support needs of women who developed chemotherapy-induced peripheral neuropathy following treatment for breast and ovarian cancer. Eur J Cancer Care. 2019;28(3):e13011. DOI: 10.1111/ecc.13011

    15.       Drott J, Starkhammar H, Kjellgren K, Berterö C. The trajectory of neurotoxic side effects’ impact on daily life: a qualitative study. Supportive Care in Cancer. 2016;24(8):3455–61. DOI: 10.1007/s00520-016-3179-1

    16.       Speck RM, DeMichele A, Farrar JT, Hennessy S, Mao JJ, Stineman MG, et al. Scope of symptoms and self-management strategies for chemotherapy-induced peripheral neuropathy in breast cancer patients. Supportive Care in Cancer. 2012;20(10):2433–9. DOI:  10.1007/s00520-011-1365-8

    17.       Antonovsky A. Helsens mysterium: den salutogene modellen. Oslo: Gyldendal Akademisk; 2012.

    18.       Eriksson M, Lindstrom B. Antonovsky's sense of coherence scale and the relation with health: a systematic review. J Epidemiol Community Health. 2006;60(5):376–81. DOI: 10.1136/jech.2005.041616

    19.       Eriksson M, Lindstrom B. Antonovsky's sense of coherence scale and its relation with quality of life: a systematic review. J Epidemiol Community Health. 2007;61(11):938–44. DOI: 10.1136/jech.2006.056028

    20.       Malterud K. Systematic text condensation: a strategy for qualitative analysis. Scandinavian Journal of Public Health. 2012;40(8):795–805. DOI: 10.1177/1403494812465030

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    22.       Chan CW, Cheng H, Au SK, Leung KT, Li YC, Wong KH, et al. Living with chemotherapy-induced peripheral neuropathy: Uncovering the symptom experience and self-management of neuropathic symptoms among cancer survivors. Eur J Oncol Nurs. 2018;36:135–41. DOI: 10.1016/j.ejon.2018.09.003

    23.       Gewandter J, Fan L, Magnuson A, Mustian K, Peppone L, Heckler C, et al. Falls and functional impairments in cancer survivors with chemotherapy-induced peripheral neuropathy (CIPN): a University of Rochester CCOP study. Supportive Care in Cancer. 2013;21(7):2059–66. DOI: 10.1007/s00520-013-1766-y

    24.       Tofthagen C, Overcash J, Kip K. Falls in persons with chemotherapy-induced peripheral neuropathy. Supportive Care in Cancer. 2012;20(3):583–9. DOI: 10.1007/s00520-011-1127-7

    25.       Kanda K, Fujimoto K, Kyota A. Emotional responses to persistent chemotherapy-induced peripheral neuropathy experienced by patients with colorectal cancer in Japan. Asia Pac J Oncol Nurs. 2017;4(3):233–40. DOI: 10.4103/apjon.apjon_12_17

    26.       Antonovsky A. Health, stress, and coping. San Francisco: Jossey-Bass; 1979.

    27.       Bennion A, Molassiotis A. Qualitative research into the symptom experiences of adult cancer patients after treatments: a systematic review and meta-synthesis. Supportive Care in Cancer. 2013;21(1):9–25. DOI: 10.1007/s00520-012-1573-x

    28.       Boehmke MM, Dickerson SS. Symptom, symptom experiences, and symptom distress encountered by women with breast cancer undergoing current treatment modalities. Cancer Nurs. 2005;28(5):382–9. DOI: 10.1097/00002820-200509000-00008

    29.       Winger JG, Adams RN, Mosher CE. Relations of meaning in life and sense of coherence to distress in cancer patients: a meta-analysis. Psychooncology. 2016;25(1):2–10. DOI: 10.1002/pon.3798

    30.       Kvale S, Brinkmann S. Det kvalitative forskningsintervju. 2nd ed. Oslo: Gyldendal Akademisk; 2009.

    31.       Helse- og omsorgsdepartementet. Leve med kreft. Nasjonal kreftstrategi (2018–2022). Oslo: Helse- og omsorgsdepartementet; 2018. Available at: https://www.regjeringen.no/contentassets/266bf1eec38940888a589ec86d79da20/regjeringens_kreftstrategi_180418.pdf (downloaded 01.02.2023).

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  • Health care personnel’s experiences with suicide risk in older adults living at home

    Bildet viser et nærbilde av en eldre mann som kikker inn i kameraet. Han ser trist ut

    Introduction

    Suicide is one of the major public health problems of our time (1). In 2022, there were 610 recorded cases of suicide in Norway, and 28% of these were in people aged 60 or over. The increase in the number of suicides from 2020 to 2022 was most pronounced in the age group 80–89 years (2). The Norwegian government’s ‘Action Plan for Suicide Prevention’ in 2020 set out a zero vision for suicide (3). The plan aims to ensure that suicide prevention is given a higher priority than before.

    The growing proportion of older adults in the population may lead to an increase in the number of suicides among this group. One in eight people are currently over the age of 70, but it is expected that this will be one in five by 2060. The number aged 80+ is also expected to triple, and the number over 90 will increase approximately five-fold (4).

    Despite the high suicide rate among older adults, the subject has received little attention in public discourse in Norway (5) and in previous research. There is therefore a need to focus on older adults and their suicide risk, as this study does. The Coordination Reform has resulted in an expanded range of local authority services and a significant emphasis on home-based care (6).

    The reform has also led to older patients being discharged from hospital sooner (7). As a result, a large proportion of older adults are users of primary care services, and the uptake of home-based health and care services has increased considerably (8).

    Earlier research

    In Norway, people over the age of 65 receive less mental health care than the rest of the population. This may be due to a reluctance to seek help due to the perceived stigma attached to poor mental health, as well as not being informed about treatment options (9). When it comes to depression, this is assumed to be underdiagnosed in older adults. Without treatment, the mortality rate is three times higher compared to the average in the older population. Among older adults, the suicide rate is highest for men without a spouse (2, 10). Older men are more driven to take their own lives than younger men, and the methods used are more radical (11).

    In the age group 65 years and over, there are probably unreported cases due to other causes of death being listed, fewer autopsies being carried out and deaths of older adults not always being reported as suicide despite suspicions (12). In order for healthcare personnel to be able to identify and help older people who are at risk, it is important to have knowledge about suicidal behaviour among this group and to understand that these patients seldom express their suicidal thoughts (13).

    Home care services staff have a responsibility to help older adults living at home develop strategies and establish support to meet their healthcare needs. This needs to be done before they begin contemplating suicide. It is therefore crucial that this work is carried out at an early stage (14). Home care services can effectively identify older patients with depressive symptoms if they have good relationships and communication with this patient group, coupled with knowledge of and understanding for their vulnerabilities (15).

    Objective of the study

    The objective of the study was to examine healthcare personnel’s experiences with suicide risk among older adults living at home.

    Method

    The study employs an exploratory and descriptive design with a hermeneutic approach in line with Gadamer’s philosophy of science (16). We conducted qualitative in-depth interviews in January and February 2020. Kvale (17) describes such interviews as conversations in which the researcher actively seeks information from informants in order to gain a deep understanding of their perspectives, opinions and experiences. We utilised Braun and Clarke’s thematic content analysis method (18).

    Sample

    The informants were recruited from one large and one small municipality in Norway. We sent requests to the unit managers of home care services, who then facilitated contact with relevant department heads. The department heads were sent an information letter describing the objective of the study and what participation entailed, along with a consent form. In collaboration with the department heads, we utilised purposive sampling (17), which meant that informants were required to have knowledge and/or experience with older adults and suicide risk.

    In the large municipality, with approximately 700,000 inhabitants (Municipality 1), the home care services were divided into three groups: general community nursing, rehabilitation, and substance use and mental health. In the small municipality, with around 30,000 inhabitants (Municipality 2), services were divided by district, regardless of care needs and diagnosis.

    Inclusion criteria consisted of a qualification in health care (a vocational qualification and/or a three-year university college education), a minimum of a 50% FTE position, and more than one year of experience in home care services. The criteria helped us recruit informants with relevant experience and knowledge. Four of the informants were registered nurses and one was a nursing associate. There were five women and one man, aged 27–59 years (average age 40.5 years). They had 3–20 years of experience working in home care services (Table 1).

    Table 1. Overview of informants

    Data collection

    Data were collected through qualitative in-depth interviews (17) with the informants. We used an interview guide consisting of six main questions during the interviews, in addition to an introductory question about the informant’s background. Examples of questions included: ‘Do you have experience with older adults who have expressed that they do not want to live anymore?’ and ‘How do you assess whether older adults are at risk of taking their own life?’

    The first author conducted the interviews in a meeting room at the informants’ workplace. The interviews lasted from 20 to 45 minutes, and were recorded electronically and transcribed verbatim.

    Analysis

    Based on Gadamer’s (16) hermeneutic philosophy, we carried out a thematic content analysis in line with Braun and Clarke’s (18, 19) six-step method.

    In the first step, we familiarised ourselves with the data by reading the transcribed interviews several times. In step two, we formulated the initial codes, and themes were generated in the third step. In step four, the authors jointly reviewed the themes again alongside the coded data extracts and the entire dataset. In the fifth step, we defined two main themes with sub-themes. In step six, we selected which quotes were to be used under each theme before describing the results (18, 19). An illustration of the analysis process is presented in Figure 1.

    Figure 1. Illustration of the analysis process

    Research ethics

    The project was approved by the Norwegian Centre for Research Data, reference number 556166. All informants gave written informed consent and were made aware that they could withdraw from the study at any time without giving a reason. The data collected have been handled confidentially. The transcribed interviews were stored on a research server, and the electronic recordings were deleted. We ensured informants’ anonymity by not disclosing any information that could lead to them being identified (17).

    Results

    The analysis of the interviews showed two main themes related to home care services personnel’s experiences with suicide risk among older adults living at home and the measures taken. The main themes are ‘Feeling of meaninglessness’ and ‘Varying scope of suicide prevention measures’. Both main themes have two sub-themes (Table 2).

    Table 2. Main themes and sub-themes

    Feeling of meaninglessness

    A consistent finding was the informants’ experiences of older people expressing that life no longer has any meaning. This sense of meaninglessness was linked to feelings of loneliness and of being a burden to others.

    Feeling of loneliness

    All the informants described how many of the older adults living at home felt lonely and socially isolated. They talked about older people who had lost a significant part of their social circle, where the visit from home care services was the ‘highlight’ of their day. Loneliness was linked to physical and mental illness, increased care needs, or other major life-changing events that could increase the risk of suicidal behaviour. An example of a life-changing event was the loss of a partner, which in turn led to loneliness and a lack of meaning in life. One informant described it as follows:

    ‘We had a case where someone tried [to take his own life] with a knife. He had been drinking a lot beforehand and was an alcoholic. They find themselves in situations where they lose the partner they have lived with for 50 or 60 years. Their health deteriorates and they become increasingly lonely. So it’s a bit like “why should I go on?”.’ (Informant 4)

    This informant articulated how loneliness and deteriorating health, in combination with heavy alcohol consumption, can be linked to suicide risk.

    Feeling of being a burden

    Some of the informants talked about older adults who felt like a burden to the home care services, their family and other people they are close to. These could be people who had previously served as a major family resource but had now become dependent on the help of others due to their need for care. In addition to physical illness, several were struggling mentally. One of the informants explained:

    ‘We had a case with a man who had various somatic comorbidities and expressed that he was depressed. We didn’t really pick up on it. He took his own life in the shower while his wife was in the living room. No one saw it coming. I think he just got tired of everything and felt like he was a burden to his wife and the home care services.’ (Informant 2)

    In this case, the home care services staff had not noticed any signs of suicidal behaviour in the man, and his suicide came as a shock. Another informant shared a similar experience:

    ‘They feel like a burden to their family and us in home care services: “I shouldn’t be here.” They consider themselves a burden: “It would be better if I was no longer here.”.’ (Informant 5)

    Several of the informants believed that it is important to be watchful for older people who feel like a burden. Several older adults had expressed to them that they had ‘had enough’ to some extent or other. This often manifested as vague comments such as ‘I give up now’ or ‘I can’t take it anymore’.

    Many of them connected such statements to the older person’s feeling of being a burden. Some of the informants had also experienced situations where an older person explicitly stated that they could not bear to live any longer, for example, expressing a desire to ‘jump off the balcony’. One informant mentioned that these same individuals often repeated such comments.

    Varying scope of suicide prevention measures

    All the informants pointed out the lack of suicide prevention measures in home care services and low-threshold services for older adults.

    Organisation of home care services affects the service provision

    The informants from Municipality 1 said that they used a primary contact system. They believed that this contributed to continuity and predictability for the patients:

    ‘We have a strong focus on the primary contact system, on continuity, and that all service users have a contact person that they know, and they’re very aware that this is their point of contact. We work a lot on relationship building. So we’re very familiar with the service users’ situations and might also have some insight into what’s troubling them.’ (Informant 3)

    The nursing associate in the rehabilitation department said that they worked extensively to combat social isolation and encourage physical activity. They also involved family members and visitors from voluntary organisations. Additionally, they facilitated collaboration with the District Psychiatric Centre (DPS) and Flexible Assertive Community Treatment (the FACT team).

    One of the informants from this municipality believed that many older adults’ needs cannot be met by the existing services. For example, there is no service provision for those who solely suffer from depression or anxiety. A nurse said that many people also fall outside the FACT team’s service provision for older adults. Despite the target group being the over 65s, an upper age limit is applied in practice:

    ‘We’ve been discussing this because we have someone who has become quite depressed and wants to keep it hidden from her daughter. So, we were like “What should we do about it?” She was too old to be covered by the FACT team’s services for older people, she doesn’t qualify for it. So, it’s a bit like a lottery whether the GP addresses it or just puts her on tablets.’ (Informant 1)

    The nurse believed that medication could be beneficial but that other interventions were needed in addition.

    Informant 5 said that she considered it important to intervene at an early stage to help the patient manage daily life. She believed that this could prevent mental health issues and a potential risk of suicide among older adults living at home. In this municipality, there were visitor companion services and the possibility to work with voluntary organisations.

    Informant 6 said that they could refer patients to everyday rehabilitation in the municipality, which involves a multidisciplinary team focused on rehabilitation to help patients manage daily activities. Team members visit patients in their homes to carry out the rehabilitation.

    Some of the informants believed that older adults living at home do not receive sufficient help, including from the specialist health service: ‘We sometimes feel a bit alone with this as a service, not as employees necessarily.’ (Informant 3)

    Several informants mentioned that older adults could be rejected by the mental health services due to their age and the prioritisation of younger people. One of them said: ‘There’s very little for older adults. It’s usually the young ones who get prioritised. You’d think it would be important for older adults as well, but they get very little. Some get help, but they’re in their 60s.’ (Informant 6)

    Several informants said that they had little time and minimal scope for extra conversations or supervision when needed, which they also felt was the public’s perception of home care services: ‘the busy home care services’. Nevertheless, many believed that how they spent their time, their scope to act and their ability to build good relationships and assess suicide risk were related to experience. Informant 2 explained this as follows: ‘Chatting with older adults and having extensive experience makes it easier to have good communication when it comes to addressing depression and their mindset. It’s about the way you talk to them.’

    Few low-threshold services

    Several of the informants emphasised the importance of services to combat social isolation and loneliness among older adults. They said that the day centre service was the most frequently used option. Municipality 2 had day centres with various departments, and one of them had a department for people with dementia.

    The informants believed that the dementia department facilitated more tailored activities: ‘People isolate themselves and don’t get out. There was someone who hadn’t been out for four years. In such cases, low-threshold options are relevant.’ (Informant 2) The informants felt that day centres were a good option for many but that there are few other alternatives for people who do not want to use the day centres.

    One effective measure in Municipality 1 was to help older adults who had lost contact with their family: ‘For example, we’ve encountered service users who have lost contact with their family and want to reestablish it. So, that’s what we’ve worked on. Reconnecting them with family and old friends or neighbours.’ (Informant 3) Such measures were covered by decisions related to mental health work. The emphasis here is on whether it is possible to implement such measures.

    Discussion

    Role disruption and functional impairment as risk factors for suicide

    Findings from the study show that the feeling of meaninglessness can be associated with a lack of purpose in life and major life-changing events, including a weakened social network and functional impairment. This can make it challenging for a person to maintain their identity and the roles they have previously held, including in the family. McIntosh (20) refers to this as role disruption, which can increase the risk of mental health issues (21, 22).

    Older adults who have previously been self-sufficient and find themselves in a life situation where they become dependent on help from others can experience a shift in their self-perception (20). Loss of physical health and the need for assistance can increase the risk of suicide (11). According to the informants, functional impairment and the feeling of no longer being a resource for others contribute to the feeling of being a burden. Home care services staff encounter older adults who experience such losses, which highlights the importance of having knowledge about and looking out for suicide risk factors (20).

    Loneliness can increase the suicide risk

    All the informants in the study had witnessed loneliness and social isolation in older adults. Previous research shows that 19.5% of older adults living at home often or always feel lonely (23). Loneliness is associated with a person losing their social network, which in turn leads to social isolation. In the study, healthcare personnel had observed that loneliness can increase the risk of suicide.

    Physical functional impairment leads to reduced social activity and, in turn, a greater degree of loneliness. Measures that preserve physical health, such as rehabilitation – as implemented in one of the municipalities in the sample – are crucial. Research shows that physical activity has a positive impact on mental health (24) and can thus serve as a suicide prevention tool.

    Good relationships require continuity

    In order to create good relationships, the contact between healthcare personnel and older adults living at home requires continuity (25). Healthcare personnel may be entirely dependent on having a good relationship with the patient in order to identify symptoms of depression. Findings from the study show that extensive experience in home care services is important for good communication, enabling deeper conversations and reducing the threshold for discussing difficult issues.

    According to Gjevjon (25), establishing good relationships can be challenging because home care services staff are dealing with a large number of patients, and the patients interact with numerous healthcare staff. Strict prioritisation, time constraints and a lack of continuity are hallmarks of home care services (15), and hinder the ability to build strong relationships.

    The Ministry of Health and Care Services’ ‘Action Plan for Suicide Prevention’ (3) also emphasises that good social relationships are associated with a reduced risk of suicide and that identifying depression and other mental health issues is important for suicide prevention. Healthcare personnel play a crucial role in assessing social isolation in older adults and in measures being implemented that promote social engagement (26).

    Competence needs in healthcare personnel

    In guidance from the Norwegian Directorate of Health (27), emphasis is placed on local authorities ensuring that healthcare personnel have the necessary competence to identify and follow up those at risk of suicide. An advantage of the organisation in Municipality 1, which had a dedicated group that focused on mental health, was that the healthcare personnel there had additional expertise in this area.

    Healthcare personnel must be aware of the extent of suicide among older adults, and that this patient group rarely mention suicidal thoughts in conversations. Research shows that healthcare personnel can feel uncertain when dealing with this topic (13), which our findings confirm. One informant experienced uncertainty during a visit to a patient who had previously attempted suicide. This uncertainty may stem from a lack of knowledge and competence to communicate about the subject, and it highlights the importance of putting suicide among older adults on the agenda and facilitating open discussion about the topic with colleagues. It is also crucial to work on enhancing skills in this area.

    The informants in home care services considered there to be a lack of mental health services for older adults and expressed that this patient group is given a lower priority at district psychiatric centres. According to a study by Hovland and Nordhus (9), staff at such centres also lack the necessary competence to deal with older adults with mental health disorders. This suggests that there may be a need for increased competence in both primary care and specialist health services.

    Conclusion

    In older adults living at home, functional impairment, the feeling of being a burden, loneliness and role disruption can be risk factors for suicide. Competence and experience among healthcare personnel in home care services are crucial for assessing suicide risk.

    How home care services are organised has a bearing on the continuity of contact and the development of good relationships with the individual patient, which in turn is important for identifying suicide risk. It is also essential that adequate time is allocated to suicide prevention work.

    The authors declare no conflicts of interest.

    Open access CC BY 4.0.

    Peer-reviewed article
    Publication type
    Publication Year
    2023
    Edition Year
    18
    Publication Number
    93191
    Page Number
    e-93191

    They should be on the lookout for risk factors such as functional impairment, loneliness, changing roles and the feeling of being a burden.

    Article is Peer Reviewed
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    Research
    English
    Sammendrag

    Background: In Norway, the proportion of older people in the population is set to increase considerably in the coming years. People over the age of 65 receive less mental health care than the rest of the population. The number of suicides and attempted suicides in this patient group is increasing. Healthcare personnel in home care services therefore have an important responsibility in relation to older adults living at home who are at risk of suicide.

    Objective: The objective of the study was to examine healthcare personnel’s experiences with suicide risk among older adults living at home.

    Method: The study has an exploratory and descriptive design with a hermeneutic approach. We conducted six qualitative in-depth interviews with home care services staff in one large and one small municipality in Norway. We then carried out a thematic content analysis of the interviews.

    Results: The analysis showed that healthcare personnel in home care services find that many older adults feel that life is meaningless, partly because they are lonely and feel like a burden to others. The informants also pointed out that the scope of suicide prevention measures varies and that how home care services are organised affects the quality and continuity of the contact with this patient group. In addition, the informants emphasised that there are few low-threshold suicide prevention services for older adults.

    Conclusion: Competence among healthcare personnel in home care services is crucial for assessing suicide risk in older adults living at home. In addition, it is crucial that the service is organised in a way that ensures continuity and predictability for the patients. This is essential for developing a good relationship with each patient, which in turn makes it easier to identify suicide risk. Adequate time also needs to be spent on this work.

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    • Suicide among older adults is given little attention in society. There are few studies on healthcare personnel’s experiences with suicide risk in older adults living at home.
    • There is a need for competence in assessing suicide risk in older adults receiving home care services.
    • Continuity in the contact with older adults, adequate time and good relationships are essential for suicide prevention.

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    10.       Beghi M, Butera E, Cerri CG, Cornaggia CM, Febbo F, Mollica A, et al. Suicidal behaviour in older age: a systematic review of risk factors associated to suicide attempts and completed suicides. Neuroscience and Biobehavioral Reviews. 2021;127:193–211. DOI: 10.1016/j.neubiorev.2021.04.011

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    14.       Berland A, Solheim A, Holm AL. Eldre pasienter som ønsker å dø. Nordisk sygeplejeforskning. 2018;8(1):63–74. DOI: 10.18261/issn.1892-2686-2018-01-06

    15.       Halvorsrud L, Pahr I, Kvarme LG. Hjemmesykepleieren i møte med den nedstemte pasienten. Sykepleien Forskning. 2014;9(3):242–8. DOI: 10.4220/sykepleienf.2014.0133

    16.       Gadamer HG. Truth and method. 2nd ed. London: Sheed and Ward; 1989.

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    18.       Braun V, Clarke V. Reflecting on reflexive thematic analysis. Qualitative Research in Sport, Exercise and Health. 2019;11(4):589–97. DOI:  10.1080/2159676X.2019.1628806

    19.       Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Research in Psychology, 2008;3(2):77–101. DOI: 10.1191/1478088706qp063oa

    20.       McIntosh JL, Santos JF, Hubbard RW, Overholser JC. Elder suicide: research, theory and treatment. Washington: Amer Psychological Association; 1994.

    21.       Eskeland KO. Alderspsykiatri og omsorgsarbeid. Oslo: Cappelen Damm; 2017.

    22.       Conejero I, Olié E, Courtet P, Calati R. Suicide in older adults: current perspectives. Clinical Interventions in Aging. 2018;13:691–9. DOI: 10.2147/CIA.S130670

    23.       Kirchhoff JW, Grøndahl VA, Andersen KL. Betydningen av sosiale nettverk og kvalitet på pleien for opplevelse av ensomhet blant brukere av hjemmesykepleie. Nordisk sygeplejeforskning. 2015;2(5):266–82. DOI: 10.18261/ISSN1892-2686-2015-03-04

    24.       Danielsen KK. Fysisk aktivitet i psykisk helsearbeid. Agder: Omsorgsbiblioteket; 2021. Report no. 24. Available at: https://omsorgsforskning.brage.unit.no/omsorgsforskning-xmlui/bitstream/handle/11250/2771783/Fysisk%20aktivitet%20i%20psykisk%20helsearbeid.pdf?sequence=1&isAllowed=y (downloaded 31.08.2023).

    25.       Gjevjon ER. Kontinuitet i hjemmesykepleien – vanskelige vilkår, men gode muligheter. Tidsskrift for omsorgsforskning. 2015;1(1):18–26. DOI: 10.18261/ISSN2387-5984-2015-01-06

    26.       Holm A, Salemonsen E, Severinsson E. Suicide prevention strategies for older persons – an integrative review of empirical and theoretical papers. Nursing Open. 2021;8(5):2175–93. DOI: 10.1002/nop2.789

    27.       Helsedirektoratet. Selvskading og selvmord – veiledende materiell for kommunene om forebygging. Oslo: Helsedirektoratet; 2017.

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  • Health care for undocumented migrants

    Bildet viser en sykepleier som setter en vaksinesprøyte i armen på en ung kvinne

    Introduction

    On a global scale, the number of people migrating has remained stable over the past 50 years. Due to population growth, the figure is now on the rise (1).

    In 2020, nearly 89 million migrants were forcibly displaced for various reasons. The largest proportion were internally displaced in their own countries. Of these, only 4.1 million were registered as asylum seekers (2). An undocumented migrant is a person who 1) arrived in the country seeking asylum and had their application rejected, 2) arrived in the country without documentation or valid entry papers and failed to register with the authorities, or 3) has an expired visa or residence permit (3, 4).

    Undocumented migrants are one of the population groups that do not receive the health care they need (5). It is difficult to estimate how many have sought asylum in Norway without a valid residence permit, as it is challenging to obtain systematic information about this group. According to an overview by the National Police Immigration Service, approximately 3000 individuals residing in Norway in 2020 were illegal migrants, while in 2022, the number had fallen to just over 1800.

    In a family, one of the spouses may be undocumented, while the other spouse and any children have a valid residence permit. This type of living situation negatively impacts the entire family because the undocumented person does not have the opportunity to take up legal employment, and the children face a higher risk of health problems than other children. This often leads to families living isolated and unstable lives, with few resources available (6, 7). Seeking asylum or residing illegally in a country is mentally taxing, and the insecurity and fear of deportation cause constant stress and a sense of isolation (8, 9).

    Undocumented migrants receive insufficient follow-up from healthcare entities that provide medical care in non-emergency situations. To access the services of a general practitioner (GP), for example, a person must be a member of the National Insurance Scheme, which excludes undocumented migrants and creates major challenges for their children (7, 10).

    Undocumented migrants have a higher risk of diabetes, cardiovascular disorders and mental health disorders, as these are often linked to living conditions and lifestyle. In practice, this leads to illnesses that would not cause significant harm to the patient if treated properly, but which advance to acute conditions and can have a detrimental effect on the patient’s quality of life and/or have a fatal outcome (8, 11, 12).

    Previous research has shown that healthcare professionals who work as volunteers with undocumented migrants found it difficult to provide health care to this patient group, partly because they lacked the necessary equipment and resources (11, 13, 14). Norwegian regulations also limit the ability of health and social care professionals to provide treatment beyond non-acute conditions, often leading to ethical dilemmas related to their own profession and area of expertise (5, 15, 16).

    Furthermore, socio-economic disparities in relation to, for example, living conditions, employment and education are a direct cause of health problems among undocumented migrants and are difficult for volunteers to address (11, 13). As a result, voluntary healthcare professionals often feel that they are not doing enough in their work with patients. They often invest more commitment and emotions in this type of voluntary work than in their paid work in the health service. They feel a stronger connection to and greater concern for the patients (11).

    Lack of understanding and support from other parts of the health service lead to a sense of frustration and despair among those who, on a voluntary basis, strive to ensure that this patient group receives the best possible health care (11, 13, 14, 17). In order to provide universal good-quality, dignified healthcare services, knowledge is needed about the healthcare provision for vulnerable groups like undocumented migrants.

    Objective of the study

    Our aim was to explore the experiences and perceptions of voluntary health and social care professionals who provide support and health care to undocumented migrants.

    Method

    The study is of a qualitative design. We conducted semi-structured individual interviews to explore the study participants’ experiences and perceptions of their work as volunteers at the Health Centre for Undocumented Migrants (18). We were particularly interested in their interactions with patients, their views on public health care for undocumented migrants, and the potential differences between their work at the health centre and within the public health service.

    Setting

    In the recruitment process, we approached the Health Centre for Undocumented Migrants to recruit health and social care professionals who were currently or had recently been involved in voluntary roles. An information letter about the project was sent to relevant potential participants, encouraging them to contact the first author to arrange an interview.

    The Health Centre for Undocumented Migrants is part of the Church City Mission’s treatment and healthcare provision. The centre operates as a hybrid between an emergency clinic and a GP practice and provides free, open drop-in services two days a week.

    Sample

    The participants in the study were strategically selected based on location and experience, but there was also a convenience sample (19) due to recruitment challenges during the COVID-19 pandemic. Two of the participants had a professional background in nursing, two were social workers and one was a biomedical scientist. All were women. Their work experience in the public health service ranged from one year to over 30 years. They had between one and three years of experience as volunteers at the health centre.

    Data collection

    The first author conducted six interviews with five of the participants, including one follow-up interview. Due to infection prevention measures during the COVID-19 pandemic, the interviews were conducted remotely between May and September 2021. Audio recordings were made via the video conferencing service Zoom, which were then transcribed by the first author as the individual interviews were completed. Each interview lasted an average of 75 minutes.

    The data were supplemented with observation notes related to the volunteers’ work in various patient situations during an evening shift at the health centre. The first author shadowed the staff throughout the evening shift, who provided continuous descriptions of how they conducted consultations with service users. The first author did not actively participate in the work being performed (20).

    We used a semi-structured interview guide that was developed based on available literature and our own experiences as healthcare professionals in interactions with undocumented migrants. The questions related to the participants’ motivation and expectations for their voluntary work, as well as their experiences and perceptions of their interactions with patients at the health centre.

    The first author has experience of working with undocumented migrants both in pre-hospital and public healthcare settings as a nurse. The second author, who has a refugee background, is also a nurse and an experienced researcher in the field of migration and healthcare services.

    The aim was to gain knowledge about the participants’ experiences and perceptions of their voluntary work at the health centre, their opportunities to perform professional work and their views on statutory restrictions in healthcare provision for undocumented migrants.

    Data analysis

    After all the interviews were transcribed by the first author, we used Braun and Clarke’s (21) six-step thematic data analysis to analyse the data. In the first step, we read through the transcribed texts from all participants to familiarise ourselves with the dataset. A copy of the transcriptions was sent to the participants for correction and approval.

    After several rounds of reading, we identified meaning units. We then organised these units using colour coding to reveal patterns in the text and develop sub-themes and overarching themes (see Table 1).

    Table 1. Example of the analysis process – from meaning to coding

    Ethical considerations

    The participants were asked to sign a consent form for voluntary participation in the project. It was also explained that they had the option to withdraw their consent without giving a reason. The project was registered with the Norwegian Centre for Research Data, reference number 775443. Information that could identify individuals was de-identified and stored in a secure location in accordance with the guidelines of the Norwegian University of Life Sciences (NMBU) (22).

    Results

    The findings from the study resulted in three themes: 1) Witnessing discrimination, 2) Professional ethics and competence, and 3) Voluntary work – towards a common goal. Themes and sub-themes are presented in Table 2.

    Table 2. Summary of themes and sub-themes

    Witnessing discrimination

    The voluntary work at the Health Centre for Undocumented Migrants often leads to strong emotional reactions among the health and social care professionals: ‘I often feel frustrated, angry and sad, and a strong sense of injustice, especially because you’re caught in the middle, trying with the hospital, with politicians saying the same thing over and over and over again.’

    The study participants frequently expressed frustration and despair over a system they perceived as contributing to and perpetuating systematic discrimination.

    Witnessing undocumented migrants receiving inferior health care to the rest of the population was a burden for the health and social care professionals. They said that as professionals in voluntary work, they often witnessed ‘people having to wait, suffering and living difficult lives without receiving health care’.

    The patients that the volunteers met often shared their stories of abuse or violence, triggering strong emotional reactions among health and social care professionals. Although the participants expressed a needed for time to reflect and vent their feelings, there was no systematic provision for guidance or debriefing. Their free time was often used to process the strong impressions that arose from their interactions with patients.

    The perceived injustice in the care provided to undocumented migrants could also serve as a driving force for effecting change, or what one participant called ‘grassroots activism’. Even though the system could be inflexible, the participants still found it motivating to work for this patient group, especially when they saw that it made a difference. In the larger towns and cities, the cooperation has now improved between the public health service, the local authority and the health centre.

    During the COVID-19 lockdown, the health centre remained open and was deemed an ‘essential service’. Financial support from the local authority has also increased in recent years. Furthermore, some participants mentioned that local solutions are offered in some smaller towns, providing patients with access to a GP and assistance from the Norwegian Labour and Welfare Administration (NAV). This contributed to a sense of usefulness and personal fulfilment among participants.

    Professional ethics and competence

    The participants described how there was often a gap between their professional responsibilities to this patient group and the limitations of what they could actually accomplish. They perceived this limited agency as ethically challenging in their work with undocumented migrants.

    They explained that it can still be difficult for outsiders to see the whole picture, and how simple actions can have major consequences for the quality of life and existence of these patients: ‘Being unable to effect change is difficult.’

    This issue was raised by the participants in the context of a problem they had with helping someone with sleep depression when they did not have a suitable place for the person to sleep.

    Several participants felt that the health care they ended up providing was often quite similar to what a person with full rights would receive. This was possible because they chose to overlook the legal framework and provide full health care to those in need. Additionally, participants’ involvement at the health centre made it easier for undocumented migrants to receive health care or follow-up at the volunteer’s workplace in the public health service.

    The participants considered this beneficial for individual patients but acknowledged that in the long term, such solutions helped perpetuate treatment discrimination. The participants further pointed out that they would prefer the local authority to take more responsibility for this patient group and for a proper, equitable healthcare provision to be established.

    Voluntary work – towards a common goal

    With the current practice, the participants feel that undocumented migrants end up receiving a relatively good healthcare provision that is almost equivalent to what a person with full rights would receive, with the difference being that undocumented individuals need to visit the health centre to access this help. Consequently, the health centre has become a ‘safe haven’ for this patient group, where they can receive health care without fear of legal sanctions.

    The operation of the health centre relies on volunteers, which makes it challenging to ensure a consistent service provision for those using the centre. Providing an equitable healthcare provision for each shift requires a vast number of resources. When the study participants were asked about what they considered the most crucial factor in ensuring that this patient group receives the health care and treatment they need, the unanimous answer was changes to the legal framework: ‘I believe that’s probably the biggest barrier.’

    Due to their shared commitment and motivation, several participants considered the collaboration at the health centre to be good, even across different professions: ‘In hospitals, divisions based on occupations and other factors can sometimes exist, but at the health centre, it feels like we share a common understanding.’

    They experienced the collaboration at the health centre as unique and far superior to what they encountered in their regular work.

    Discussion

    The objective of this article was to explore the experiences and perceptions of voluntary health and social care professionals who provide support and health care to undocumented migrants. The main findings from the study show that this type of voluntary work is ethically challenging and requires a high level of commitment, but that it is personally rewarding.

    More than just health care – the challenge of being dedicated

    Our findings suggest that voluntary work with undocumented migrants evokes strong emotional responses in the participants that require both time and effective coping strategies to process. They specifically pointed out situations where undocumented migrants with less acute health issues receive limited follow-up. The volunteers found such situations emotionally difficult to witness since adequate follow-up could have had a positive impact on the course of the illness.

    Studies show that failure to process challenging situations can not only lead to stress and burnout but can also affect an individual’s work capacity and motivation (23–25). The volunteers felt they did not have the competence or resources to provide proper care, and that they witnessed the deterioration of the patient’s quality of life.

    Our findings show that the volunteers found it emotionally more challenging to care for undocumented migrants than to care for patients in the public health service. This is probably related to descriptions in previous studies of the complex situation surrounding undocumented migrants. The problem often includes poor living conditions as well as a lack of security and sense of belonging, which causes stress, frustration and anger among volunteers (11, 17).

    Professional input in a voluntary environment challenges professional ethics

    Our findings suggest that health and social care professionals develop a strong sense of ethical responsibility towards undocumented migrants through their voluntary work. They feel this responsibility as health and social care professionals and feel a sense of solidarity and empathy as fellow human beings. This sense of responsibility was stronger in their voluntary work than in their regular employment, leading to a perception that professional ethics were being challenged (11, 26).

    Although providing health care as a volunteer in such a setting sometimes feels like a burden, they described it as positive to be the one who steps in when society in general lacks adequate support mechanisms for undocumented migrants.

    Legal frameworks and international ethical guidelines allow health and social care professionals to provide health care regardless of a patient’s legal status and ability to pay (27, 28). Even with limited financial resources at their disposal, the volunteers at the health centre were largely free from financial worries. They used the available equipment without fear of depleting resources or exceeding the centre’s budgetary restraints.

    As a result, the participants had more leeway to care for patients at the health centre than at their own workplaces, which often have a limited service provision due to financial considerations. However, the health and social care professionals at the health centre often found themselves in situations where patients’ needs were not met.

    When a patient’s need for health care is not properly met, this is often linked to a lack of experience and competence among the volunteers. Some volunteers do lack these attributes, which means lower quality standards than those required of actors in the public health service (28).

    Voluntary work in the field of social care

    As volunteers at the Health Centre for Undocumented Migrants, the health and social care professionals have acquired a broad understanding and in-depth knowledge of the health of immigrants. They often have contact with patients who have migrated and gain valuable insight into how the challenges of leaving their home country have affected this patient group’s quality of life and health. Increasing healthcare professionals’ cultural competence in health care is described as a focus area by the Ministry of Health and Care Services (29).

    The health centre is an important arena for gathering knowledge about this patient group, both regarding their lifestyles and culture. Volunteers’ experiences can be an important resource for promoting changes in attitudes and strengthening cultural competence in the public health service.

    The recruitment of volunteers to humanitarian organisations is generally poor, particularly in the field of social care. Despite steady recruitment in this particular volunteer organisation, there is a risk that high staff turnover may lead to instability and a lack of continuity for volunteers and patients alike (30–32).

    It would undoubtedly be beneficial for the patient’s health and the standard of the centre to try to retain experienced volunteers. However, it is important to create conditions that foster a sense of belonging and motivation, so that volunteers want to continue their involvement with the organisation.

    Strengths and weaknesses of the study

    The free-flowing nature of the semi-structured interviews may have impacted on the data collected in the study. Different follow-up questions based on the same interview guide can give rise to variations in the data (33). However, the semi-structured interviews allowed participants to speak more openly about what engaged and motivated them, as well as what limited and challenged their voluntary activities.

    The authors’ healthcare and minority backgrounds may be a strength of the study, and may have made it easier to ask the participants more contextually relevant questions (34).

    One of the study’s weaknesses is the small sample size, which can result in limited information (35). However, the data collected is nuanced and diverse, as the informants had a variety of backgrounds in social care. The data provide valuable insight into the participants’ experiences as volunteers at a health centre.

    Conclusion

    The study shows that health and social care professionals were emotionally and physically impacted in their voluntary work with undocumented migrants. Those responsible for voluntary work should promote transparency and awareness of the consequences of working with traumatised patients.

    Furthermore, they should implement preventive measures to minimise stress and burnout. With their knowledge of undocumented migrants, volunteers can help redirect political attention to the challenges faced in providing health care to this patient group and encourage policymakers and the public to consider multiple perspectives of the problem (11).

    Transferring this unique knowledge and experience to the public health service can also help increase the cultural competence of health and social care professionals. Enhanced knowledge of the health challenges of undocumented migrants is crucial for addressing systematic disparities in the health service.

    The authors declare no conflicts of interest.

    Open access CC BY 4.0.

    Peer-reviewed article
    Publication type
    Publication Year
    2023
    Edition Year
    18
    Publication Number
    92992
    Page Number
    e-92992

    Voluntary health and social care professionals are dismayed that such a vulnerable group is being denied the health care they need. However, helping to change the system motivates them.

    Article is Peer Reviewed
    1
    Innsendte kommentarer kvalitetssikres før publisering. Kvalitetssikringen skjer i vanlig arbeidstid.
    Research
    English
    Sammendrag

    Background: Undocumented migrants are individuals who, for various reasons, are in Norway without legal residence. Legally, this patient group is only entitled to health care in emergency situations. In the absence of a comprehensive public healthcare provision for undocumented migrants, voluntary organisations attempt to address their healthcare needs. Volunteers in these organisations can find it ethically challenging when medical conditions that could have been prevented with proper follow-up and early intervention are left untreated.

    Objective: To explore the experiences and perceptions of voluntary health and social care professionals who provide support and health care to undocumented migrants.

    Method: We conducted six semi-structured in-depth interviews with volunteers at a health centre, in addition to a period of observation. The interviews were held between May and September 2021 and were analysed using Braun and Clarke’s thematic analysis.

    Results: The study shows that health and social care professionals often reacted with frustration and anger at vulnerable undocumented migrants being denied the health care they needed. The study participants experienced situations that challenged their professional ethics and competence. Their commitment to the patients was driven by the professional responsibility they felt as practitioners and fellow human beings. Meanwhile, helping to change structural inequalities motivated them.

    Conclusion: The health centre offers tailored support and health care to undocumented migrants. This serves as a parallel alternative to the public health service. While volunteers perform necessary and valuable work for vulnerable migrants, their efforts come at a personal and emotional cost.

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    • Research on undocumented migrants has primarily focussed on exploring patients’ experiences with and perceptions of health care. There is limited research on the experiences of those providing health care.
    • The participants’ work experience with undocumented migrants can help to strengthen cultural competence in the public health service.
    • The study provides valuable insight into the emotional rewards and costs of voluntary work with undocumented migrants.

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    30.       Lorentzen H, Tingvold L. Frivillig innsats: Hindre i omsorgssektoren. Tidsskrift for omsorgsforskning. 2018;4(2):120–31. DOI: 10.18261/issn.2387-5984-2018-02-08

    31.       Andfossen NB. Ulike typer frivillige i omsorgstjenestene – samstemt innsats eller mangfold til besvær? Tidsskrift for velferdsforskning. 2019;22(1):25–42. DOI: 10.18261/issn.2464-3076-2019-01-02

    32.       Higdem U. Møtet mellom helse og plan. Plan. 2015;47(3–4):4–9. DOI: 10.18261/ISSN1504-3045-2015-03-04-02

    33.       Graneheim UH, Lundman B. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Education Today. 2004;24(2):105–12. DOI: 10.1016/j.nedt.2003.10.001

    34.       Tjora AH. Kvalitative forskningsmetoder i praksis. Oslo: Gyldendal Akademisk; 2010.

    35.       Malterud K. Kvalitative metoder i medisinsk forskning. Oslo: Universitetsforlaget; 2011.

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  • Using Share-FI to reveal frailty in connection with cognitive impairment

    Bildet viser en sykepleier som sitter ved sengen til en eldre mann. Hun holder et skjema i hånda.

    Introduction

    Both in Norway and internationally, there is an increasing number of older adults. Political guidelines indicate that older people should live as long as possible in their own homes, and older frail people are one of four prioritised groups in the National Health and Hospital Plan (1).

    Frailty refers to age-related changes that make older people more prone to disease and injury, and is associated with long-term stays in institutions, hospitalisations and shorter life expectancy (2–5). The incidence of frailty gradually increases with age, and affects approximately 10 per cent of those aged 65 years and over (4, 6), and 65 per cent of those over the age of 90 (7).

    Like frailty, the incidence of dementia increases with age (8). Wyller and Hem (9) emphasised the importance of identifying frailty because it indicates the need for suitable, adapted treatment.

    There is no uniform definition of frailty or agreement on how to identify frailty in older people. Fried et al. (2) classify patients as frail if they meet three of the following five criteria: unintentional weight loss, self-reported exhaustion, lack of energy, slow walking speed and weak grip strength.

    Fried’s phenotype model (2) only covers physical measurements of frailty, although a number of studies point out that frailty and dementia may have a reciprocal negative impact on each other (5, 10–12). Conversely, Rockwood et al.’s cumulative model (3) is more comprehensive and defines frailty as the sum of negative factors, including cognitive function.

    The Survey of Health, Ageing and Retirement in Europe – Frailty Instrument (Share-FI) is a respected screening tool in both research and clinical practice. Share-FI is based on Fried’s phenotype model (2, 13), and therefore does not mention cognitive function. Share-FI has proved to be a good predictor of mortality (13).

    According to Danilovich et al. (14), Share-FI is well suited to identifying persons who are frail, as they have significantly poorer scores on objective physical measurements compared with those who are considered non-frail. There is more uncertainty about the pre-frail group. A weakness of the study is that it did not include measurements of cognitive function. The same author found in a later study that, as in Share-FI, objective data can be more sensitive than self-reported data in relation to detecting frailty (15).

    This concurs with findings in the study of O’Caoimh et al. (16) that compares screening tools for frailty. They found that self-reported data may be less precise, particularly among those with dementia. Newer tools used to map frailty make greater provision for the correlation between cognition and frailty (17), and it is also open to question whether these concepts actually overlap.

    Share-FI was tested as a measurement of frailty at a geriatric outpatient clinic, as a step in the assessment of cognitive failure and function in those over the age of 70. On the basis of this work, we raised the question of whether Share-FI is suitable for revealing frailty in the older if cognitive impairment is also to be taken into account. As a result, we investigated whether Share-F1 scores were correlated with objective measurements of cognition.

    Method

    The study is based on cross-sectional data from a consent-based geriatric quality register at Førde Hospital Trust that was approved by the Trust’s data protection officer. These data were collected in the period 2016–2020. The study was conducted in line with the STROBE guidelines for observational studies.

    We included 184 patients – amounting to 86 per cent of all patients assessed at the outpatient clinic for fall risk, dementia or fitness to drive. The other patients were deemed to be incapable of giving consent, and we have no demographic or clinical data on them.

    The dataset was anonymised following data collection in cooperation with the data protection officer and in accordance with the information patients received prior to giving consent. Therefore, the study was not subject to notification requirements.

    Variables and measurement methods

    All patients were assessed by a regular team consisting of a doctor, an ergotherapist and a geriatric nurse. The doctor assessed the patients, the ergotherapist conducted cognitive tests while the geriatric nurse carried out other measurements. One person entered all the measurements in the register.

    The demographic data included age (years), sex (woman, man), civil status (married/partner: yes/no) and whether the person in question was living at home (yes/no).

    Frailty was investigated using Share-FI, which is based on self-reporting of symptoms and function (energy, appetite, gait, physical activity), and an objective measurement of grip strength (13). A geriatric nurse helped patients to fill in Share-FI. Grip strength was measured twice in both arms using a hand dynamometer, and the highest value was used in the analyses.

    Each patient received a gender-specific Share-FI total score based on a weighted scoring system linked to the risk of mortality, and was classified as non-frail, pre-frail or frail. We based the Share-FI scores on an Excel calculator provided as an attachment in the original article (15).

    Cognition was examined using the Mini-mental State Evaluation (MMSE) (18). The MMSE is a screening tool for mapping cognitive functions in connection with memory, orientation ability, language understanding and visuoconstruction. The MMSE gives a continuous score from 0–30, with the higher value representing the best score. A total score of < 24 may indicate cognitive impairment.

    The Trail Making Test (TMT) A and B (19) was used to measure attention, speed and executive functioning. In TMT-A, the person must connect the numbers 1‒25 in numerical order as quickly as possible. In TMT-B, the person must connect alternating numbers and letters as quickly as possible: 1–A to 13–L. A score of ≥ 61 seconds on Trail Making A and ≥ 171 seconds on Trail Making B indicates possibly reduced cognition.

    The clock drawing test (20), in which the patient draws an analogue clock showing a given time, was used to map the person’s ability to plan and use videoconstructive memory. This requires attention, understanding of numbers and semantic memory (21). The clock drawing scale is from 0–5, with the highest value as the best score, while a score of ≤ 3 indicates reduced cognition.

    Body mass index (BMI) was measured by multiplying body weight in kilos by body height in metres. A BMI of < 22.5 may indicate increased risk of poorer health in older people (22). The number of drugs was defined as medications the patient took regularly, and polypharmacy was defined as ≥ 5 drugs.

    The number of diagnoses was based on a list of diseases registered in the quality register: heart failure, coronary disease, hypertension, stroke, atrial fibrillation, COPD, Parkinson’s disease, depression, kidney disease and diabetes. Multimorbidity was defined as ≥ 2 diseases (23).

    Gait was measured by mapping walking speed. A walking speed of < 0.8 metres per second was generally defined as low (24, 25). Grip strength in kilos was measured using a hand dynamometer, JAMAR (2). Values of < 27.5 for men and < 18 for women are often considered low in older people.

    Self-reported global health was measured by a question from the population health study in Nord-Trøndelag (HUNT). The wording of the question was: ‘What is your health like now?’, with the responses ‘poor’, ‘not very good’, ‘good’, and ‘very good’ (26).

    Analysis

    Descriptive statistics were used to describe the sample. In order to describe continuous variables, mean and standard deviations were used, and to describe other variables, frequency (per cent) was used. The main analysis focused on whether the Share-FI score was correlated with variables indicating that frailty was linked to cognition. However, we also carried out sensitivity analyses to investigate whether the Share-FI score was correlated with variables that mostly reflect physical health (BMI, walking speed, number of drugs, number of diagnoses and self-rated health.

    Spearman’s correlation coefficient was used to examine whether Share-FI was correlated with the MMSE, Trail Making A and B and the clock drawing test, followed by BMI, the number of drugs, the number of diagnoses, the walking speed test and self-rated health. We coded Share-FI as follows: non-frail = 1, pre-frail = 2, and frail = 3. The scores were adjusted for gender. Correlations of < 0.2 were considered to be so low that they had little or no practical relevance, correlations of 0.20–0.29 indicated medium relevance, while correlations of ≥ 0.3 indicated significant practical relevance (27).

    We also examined whether individual questions or measurements included in Share-FI were correlated with other indicators for cognition, physical health and self-rated health, using Spearman’s correlation coefficient. Two-tailed p-values were reported as a continuous indicator of uncertainty around the results. We did not adjust for multiple testing as the four measurements of cognition in the primary analysis reflected different aspects of the same construct. The reason for this is that the remainder of the correlations were secondary analyses, and we defined the effect size values for correlations (27, 28). SPSS version 26 was used in the statistical analyses.

    Results

    A total of 185 patients took part in the study, but one patient was excluded due to a lack of data on Share-FI. The average age was 81.2 years, and 52.9 per cent were women. Table 1 shows patient characteristics stratified by Share-FI categories.

    Table 1. Patient characteristics stratified by Share-FI categories (N = 184)

    The majority of the patients were primarily referred for assessment of dementia, and classified as frail (n = 44), pre-frail (n = 40) and non-frail (n = 100). There were low and non-significant correlations between the four indicators for cognition and Share-FI (Table 2), with p-values from 0.322 to 0.824. In contrast, there were considerable significant correlations between Share-FI and walking speed, number of drugs, number of diagnoses and self-rated health (p-values < 0.05).

    Table 2. Correlation for Share-FI versus cognition and other clinical variables

    We further examined correlations between individual items in Share-FI and cognitive tests (Table 3). Of the individual items in Share-FI, low physical activity was correlated with a poorer score on the MMSE and the clock drawing test, while decreased appetite was correlated with poorer scores on Trail Making B, but the correlations were small to moderate.

    Table 3. Correlation between cognitive tests and individual items in Share-FI

    Discussion

    The study shows no significant correlations between the Share-FI total score and the MMSE, Trail Making A and B and the clock drawing test. Individual items in Share-FI such as low physical activity were correlated with poorer scores on the MMSE and the clock drawing test, while abnormal appetite was correlated with poor scores on Trail Making B, but the correlations were small to moderate.

    The sensitivity analyses showed significant correlations between Share-FI and variables that largely reflected the physical health aspect, indicating that the participants in the study to a reasonable degree understood and answered the questions in Share-FI correctly.

    Earlier research and our findings suggest that Share-FI is suitable for revealing physical frailty (13, 29). However, the primary objective of this study was to find out whether Share-FI is suitable for revealing frailty in older adults if cognition is to be taken into account. International research indicates that the concept of frailty should include cognitive impairment (10, 17, 30–32). Handajani et al. discuss the correlation between frailty and cognition, and ask whether cognitive impairment is a consequence of, a symptom of, or a driver of frailty (33).

    Share-FI is frequently used to map frailty (13, 29, 32) and is constructed as a multi-dimensional index characterised by different variables pointing to a common concept, in this case frailty. The sum of the variables may show that the person in question is not frail, but it does not necessarily say so much about individual variables, i.e. the total score may be good but fails to indicate a poor score on an individual variable.

    Researchers have pointed out that performing Share-FI can be challenging, particularly for those with cognitive impairment (33). Although it is possible to get help from the family to fill in the form, the self-reported responses may be unreliable, nevertheless (13).

    Table 1 shows that patients who are not classified as frail generally score higher on perceived energy and physical activity. These findings concur with those of Danilovich et al. (14), who found that Share-FI distinguishes well between frail and non-frail in the case of physical function.

    In contrast, the pre-frail group will need a broader assessment according to Danilovich. Neither Danilovich nor Romero-Ortuno (13) included cognitive assessment in their research. This may support doubt about the use of Share-FI in practice. This doubt is related to which tool is most suitable for revealing frailty, not to the association between cognitive function and frailty.

    Share-FI is mainly based on self-reported data and may be linked to measurement errors. This might be a plausible explanation why no correlation was found between the Share-FI total score and cognitive tests in our study. Most patients who come to the outpatient clinic have incipient cognitive impairment (Table 1), characterised, inter alia, by impairment of memory and difficulty with time perspectives (21).

    Patient responses may be influenced by what life used to be like, not what it is now. Self-reporting may mean a reduction in accuracy, particularly in persons with cognitive impairment (13, 16). In addition, apathy in the form of a lack of initiative, motivation and interest may entail that people have the intention of starting up activities without doing so in practice (21, p. 253).

    Another possible measurement error may be overreporting of physical function and activity on the part of patients (15, 34). In recent years, user perspectives have been increasingly included in research on frailty, and Kojima et al. (5) found that some people may find it negative to be described as frail, and feel that they are being stigmatised.

    An analysis of individual items and Share-FI showed more impacts in relation to cognitive tests in our study than the total score. Consequently, findings in the study of correlations between individual variables in Share-FI and cognitive tests represent an area that merits further study.

    A strength of the study is that the register has an adequate sample size and uses validated measurement methods. All patients who came to the outpatient clinic were asked to participate. However, the sample consisted of patients who were under assessment and who had been referred to the geriatric outpatient clinic by their GP. There is a variation among GPs in respect of the referral rate to outpatient clinics. The outpatient clinic in our study is located in Sogn og Fjordane, which has a typical rural population, and it is uncertain whether the same results would be obtained in a different population. As a geriatric nurse helped patients to fill in Share-FI, we must show caution when comparing this with studies where no such assistance was provided.

    Moreover, we used a cross-sectional study, such that we have only one measurement point, and thus cannot say anything about cause and effect. A considerable amount of data is lacking for the variables ‘Trail Making A and B’ due to the fact that this test was only carried out on a selection of patients, often in connection with a driving licence fitness assessment. The lack of data for walking speed is because this test was introduced in the course of the project. The results produced from these variables must therefore be interpreted with caution.

    There is broad agreement on the importance of mapping frailty in older people, and many tools have been designed, but there is no consensus as to which is best suited (2, 4, 5). The findings in this study lead us to question the use of self-reporting as a tool to reveal frailty in persons with cognitive impairment. Individual items in Share-FI in combination with cognitive tests may give a better indication of frailty.

    Older people are a heterogeneous group, and objective measurements provided the most reliable data to identify those in the process of developing frailty. Although broad geriatric assessment is frequently used to map frailty (4), it is criticised because it is time-consuming in practice. A tool for revealing frailty should be reliable and easy to use in clinical practice (5, 35).

    Conclusion

    The study showed no association between the total score for frailty measured by Share-FI and cognitive tests. Overall, the study does not provide grounds for concluding that Share-FI is well suited to mapping frailty if cognition is to be taken into account.

    The authors declare no conflicts of interest.

    Open access CC BY 4.0.

    Peer-reviewed article
    Publication type
    Publication Year
    2023
    Edition Year
    18
    Publication Number
    92075
    Page Number
    e-92075

    There was no correlation between the total score for frailty measured by Share-FI and cognitive tests.

    Article is Peer Reviewed
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    Research
    English
    Sammendrag

    Background: Frailty is a condition in which age-related changes make older people more prone to disease and injury. Like frailty, the incidence of dementia increases with age. Studies confirm that frailty and dementia can have a reciprocal negative impact on each other.

    Objective: To investigate whether the Survey of Health, Ageing and Retirement in Europe – Frailty Instrument (Share-FI), a screening tool for frailty, is suitable for revealing frailty in older people if cognition is to be taken into account.

    Method: A cross-sectional study from a consent-based quality register in a geriatric outpatient clinic was conducted with 184 persons over the age of 70 who were undergoing assessment for cognitive impairment orfall risk at the outpatient clinic. We mapped physical and cognitive function using validated measurement methods. Correlations between the total score on Share-FI and various cognitive tests (Mini-mental State Evaluation [MMSE], Trail Making Test A and B, and the clock drawing test) were examined using Spearman’s correlation coefficient (rank test). Secondly, we also examined correlations between individual items in Share-FI and various cognitive tests.

    Results: The majority of patients in the study were referred for assessment of dementia. A hundred people (54 per cent) were considered to be non-frail, while 84 (46 per cent) were considered to be either frail or pre-frail. The mean age was relatively similar in the three groups. There were trivial correlations between the Share-FI total score and the cognitive tests (p-values from 0.322–0.824). In relation to the individual items in Share-FI, low physical activity was associated with a poorer score on the MMSE and the clock drawing test, while abnormal appetite was associated with a poorer score on Trail Making B, but the correlations were small to moderate (p-values < 0.05).

    Conclusion: The Share-FI total score as a measurement of frailty was not correlated with cognitive tests, and therefore does not appear to be particularly well suited to revealing frailty if cognition is to be taken into account.

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    The photo shows a nurse sitting by the bed of an elderly man. She is holding a form in her hand.
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    Changed from "elderly" to "older" (02.10.2023).

    • Share-FI is often used to map frailty, but does not measure cognitive function.
    • This study shows that Share-FI was associated with physical outcomes but not with cognitive tests.
    • If a comprehensive mapping of frailty is desired, objective testing of cognition should supplement screening tools such as Share-FI.

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    13.       Romero-Ortuno R, Walsh CD, Lawlor BA, Kenny RA. A frailty instrument for primary care: findings from the Survey of Health, Ageing and Retirement in Europe (SHARE). BMC Geriatr. 2010;10:57. DOI: 10.1186/1471-2318-10-57

    14.       Danilovich MK, Diaz L, Corcos DM, Ciolino JD. Relationship between SHARE-FI frailty scores and physical performance measures in older adult medicaid recipients. Geriatrics (Basel). 2018;3(3). DOI: 10.3390/geriatrics3030051

    15.       Danilovich MK, Diaz L, Johnson C, Holt E, Ciolino JD. Evaluating frailty in medicaid home and community-based services clients: a feasibility and comparison study between the SHARE-FI and SPPB. Pilot and Feasibility Studies. 2019;5(1):48. DOI: 10.1186/s40814-019-0429-2

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    29.       Pialoux T, Goyard J, Lesourd B. Screening tools for frailty in primary health care: a systematic review. Geriatr Gerontol Int. 2012;12(2):189–97. DOI: 10.1111/j.1447-0594.2011.00797.x

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  • Effects of de-escalation training on student nurses' skills and confidence

    The image shows four people training on deescalation. In the background the MAP logo can be seen

    Introduction

    Workplace violence is a major concern among healthcare professionals worldwide (1). It can have severe consequences at both an individual level and at an organisational level (2). It can also cause physical and emotional injuries, increase sick leave, reduce job satisfaction and increase staff turnover (3–5).

    Nurses are particularly exposed to workplace violence, and nursing students may be especially vulnerable to its consequences (6–9). Ultimately, violent incidents may play a role in why nursing students consider leaving their profession (7).

    National and global organisations recommend systematic training initiatives to address workplace violence (10, 11). Historically, many healthcare providers have viewed restrictive patient interventions as a safe and effective approach to managing violence (12).

    However, recent practice standards have moved toward a more patient-centred and less restrictive approach (15). The National Institute for Health and Care Excellence (NICE) recommends using de-escalation techniques to prevent violent incidents (16).

    De-escalation has been defined as ‘talking with an angry or agitated service user in such a way that violence is averted and the person regains a sense of calm and self-control’ (16, p. 30). It is a communicative approach to aggressive behaviour that is considered more dignified and humane, as well as less coercive compared to physical interventions (17).

    A review of the evidence base for de-escalation found that participants in de-escalation training increase their knowledge and confidence level (18). However, there is still insufficient evidence of its effectiveness in improving staff performance (14, 15, 19, 20), and there have been few experimental studies that include control groups (13, 21).

    In recent years, the four health regions in Norway have jointly developed a national staff training programme called the ‘Management of Aggression Programme’ (MAP), which is based on the existing international literature and evidence in the aggression management field (22). This programme is now being implemented nationwide in Norway.

    One of the main parts in this programme is the de-escalation training, which focuses on creating a safe place both physically and psychologically (23), engaging empathically and exploring the other person’s point of view (24), and resolving underlying distress through collaborative problem-solving (23).

    De-escalation training might have great potential for improving de-escalation behaviour in nurses, but there is limited knowledge about the extent to which such training actually contributes to improving skills. Due to the recent nationwide implementation, the present study aims to test the de-escalation training session used in the MAP model on nursing students’ de-escalation skills and confidence level in coping with aggression.

    Method

    Aims

    The present study aims to test the impact of the brief de-escalation training used in the MAP model on nursing students’ de-escalation skills and confidence level in coping with aggression.

    The study aims to test two hypotheses:

    • De-escalation training will improve the de-escalation skills of nursing students.
    • De-escalation training will improve nursing students’ level of confidence in coping with aggression.

    The study’s primary outcome is de-escalation skills, while confidence in coping with aggression is a secondary outcome. 

    Design

    A cluster randomised controlled trial with a pre-post design was conducted to test the two hypotheses (Figure 1). Within one year (2019), the three classes of third-year nursing students at a Norwegian University College were randomly assigned to either the intervention or the control group. The classes represented natural clusters.

    The randomisation sequence was created using the random number function in Microsoft Excel (2016) (25) prior to recruitment. Two of the clusters were allocated to the intervention group and one cluster to the control group. All three clusters were blinded; participants did not know which group they had been assigned to.

    Due to ethical concerns, the university college where the students were recruited from, required all participants to receive the intervention independent of group allocation. Therefore, the participants in the control group also received the intervention, but not until data collection of the primary outcome was completed (Figure 1).

    Figure 1. Study design

    Sample and participants

    A self-selection sampling approach was used in the three clusters (classes) of third-year nursing students. The three classes consisted of 61, 63 and 59 students, respectively. A flow diagram of the study participants is outlined in Figure 2.

    Figure 2. Enrolment

    All students in the three classes were invited to participate in the experiment. The inclusion criterion was that they were able to both understand and communicate in Norwegian. A total of 47 students gave their informed consent. Two withdrew from participation, leaving 45 participants in the study. The majority of the participants were female.

    More than 70% had no previous training in the management of aggression. Ten were allocated to the control group and 35 to the intervention group. The size of the control group was small, as the recruitment from this particular class was lower than the other clusters (Table 1). Participant characteristics were similar in the groups.

    Table 1. Sample characteristics

    Intervention

    The intervention consisted of the de-escalation training as described in the Norwegian staff training programme for the management of aggression, called ‘MAP’ (see Appendix 1 for details) (22). The de-escalation training is specifically designed to improve de-escalation skills. Participants received the intervention in a classroom at the university college.

    The intervention group underwent the de-escalation training after being exposed to the first test scenario (simulation scenario A) and before being exposed to the second test scenario (simulation scenario B), while the control group underwent the training after exposure to both test scenarios (Figure 1). The intervention lasted for 50 minutes.

    Data collection

    Data were collected in February (intervention group), August (intervention group) and November (control group) 2019. For each of these three data collection time points, and for participants in the three classes respectively, all data were collected over a period of five hours in one day.

    The primary outcome of this study was changes in de-escalation skills and the secondary outcome was changes in coping with patient aggression. To assess these outcomes, data were collected through two data sources: coding of recorded videos from two simulation scenarios (A and B) pre- and post-intervention, and self-reported questionnaires.

    Recording and coding of videos of simulation scenarios

    Video data were collected from participants’ simulation scenarios. Simulation scenarios A and B consisted of two different short role-plays in a somatic setting (Appendix 2), involving an aggressive simulated patient played by an experienced care provider (actor). There were two different actors for scenario A and scenario B. Each student interacted on their own with the simulated patient and was asked to manage the situation to the best of their ability.

    The video data were recorded in a simulation lab equipped like a hospital room. A researcher was operating the video equipment from a control room nearby. Prior rehearsals were conducted to make sure that the simulation scenarios appeared realistic. The average run-time of the videos was four minutes. A successful verbal de-escalation can usually be accomplished within five minutes (24).

    The coding of the recorded videos pre- and post-intervention constituted the baseline and post-test measures, respectively. The purpose of these videos was to assess the student’s baseline skill level and the effects of the intervention. The pre- and post-video recordings amounted to a total of 90 videos. Videos were coded by two external raters who were blinded to both pre- and post-training designation and the group allocation. Mean values were computed based on the raters’ scores.

    Instruments

    Both instruments were translated into Norwegian using back-translation with bilingual testing (26). Permission to translate and use the instruments in the present study was granted by the authors.

    English Modified De-escalating Aggressive Behaviour Scale (EMDABS)

    All videos were coded using the ‘English Modified De-escalating Aggressive Behaviour Scale’ (EMDABS) (Appendix 3). EMDABS is an observer-rated measure of de-escalation behaviour (27). It is based on the evidence presented by Nau et al. (28). EMDABS is psychometrically validated for use in both research and practice, and it is shown to have good inter-rater reliability and strong internal consistency (27).

    The tool is designed to measure the de-escalation skills of staff, and does not measure the outcome of the de-escalation. However, it is suggested that the EMDABS may be a useful instrument for assessing the effectiveness of training in de-escalation (27). The scale consists of seven items, which are scored from 1 to 5, with lower scores indicating least desirable de-escalating practice and higher scores indicating most desirable de-escalating practice.

    Confidence in coping with patient aggression scale

    The confidence in coping with patient aggression scale (Appendix 4) was used to measure the nursing students’ confidence in managing an aggressive patient. It consists of ten items, which are scored from 1 to 11, with lower scores indicating less confidence and higher scores indicating greater confidence.

    The instrument has previously demonstrated a high degree of precision and internal consistency (29), and high levels of reliability (Cronbach’s alpha = 0.92) and validity (29). It has been widely used in a range of studies measuring confidence in dealing with patient aggression (30–32).

    Students were asked to fill out the ‘Confidence in Coping with Patient Aggression’ questionnaire at four time points in order to detect any changes in their confidence levels throughout the study (Figure 1).

    Data analysis

    Data were analysed using SPSS software, version 24.0. The EMDABS outcome variables are analysed as continuous variables. Descriptive analyses included mean and standard deviation (SD) of continuous variables and frequencies of categorical variables. Cross-tabulation of frequencies was tested using a chi-square test. Within-group change was tested using a paired sample t-test.

    General linear model (GLM) was used to model repeated measures ANOVA, testing group differences, time effects and group differences in changes over time (the interaction term). Effect sizes were calculated to compare the difference within and between groups, using the formula for Cohen’s d, assessed against criteria small (d=0.2), medium (d=0.5) and large (d≥0.8) (33).

    Ethical considerations

    Participants were informed about the study verbally and in writing, and they provided written consent prior to participation. They received two cinema tickets for participating. All students were offered an individual debrief in case of negative emotional impact. Five students accepted this offer.

    The study was approved by the Norwegian Centre for Research Data (reference number 716537) and registered in clinicaltrials.org (registration number: NCT03924141).

    Results

    Improvement in students’ de-escalation skills

    After the de-escalation training session, the students in the intervention group demonstrated significant positive changes in de-escalation skills (p<0.01). Compared to the control group, the intervention group demonstrated better de-escalation skills after the intervention, as indicated by the time x group interaction p=0.002 (Table 2). The effect size for the difference in de-escalation skills between groups after simulation scenario B was d=0.8. Significant improvements were also seen in each item of the EMDABS scale in the intervention group (p<0.01).

    Table 2. English Modified De-escalating Aggressive Behaviour Scale (EMDABS): students’ pre- and post-test results

    The control group showed a slight decrease in de-escalation skills from pre- to post-test, but this change was not statistically significant. No other significant changes were observed within the control group.

    Effect sizes showed medium to large effects on each of the de-escalation skills within the intervention group, including the total mean (d=0.9). Conversely, all effect sizes within the control group were estimated to be trivial (d≤0.2) (Table 2).

    Improvement in students’ level of confidence in coping with patient aggression

    For both groups, improvement in the secondary outcome measure – nursing students’ level of confidence in coping with patient aggression – was seen after each simulation scenario, but the most substantial improvement occurred after de-escalation training (Table 3). 

    Baseline measures showed no significant differences between the groups’ level of confidence in coping with patient aggression. After the first simulation scenario (T2), both groups displayed an almost identical increase in self-reported confidence levels. The groups started to show divergent developments between intervals T2–T3 and T3–T4.

    Between intervals T2–T3, the intervention group underwent the de-escalation training prior to simulation scenario B, resulting in a medium effect on confidence levels (d=0.6). In contrast, the control group proceeded directly to simulation scenario B, resulting in a trivial effect on confidence levels (d=0.1).

    Between intervals T3–T4, the intervention group proceeded with simulation scenario B, while the control group underwent the de-escalation training. The intervention group showed a small effect (d=0.4) after completing simulation scenario B, while the control group exhibited a large effect (d=1.0) after undergoing the de-escalation training.

    Both groups had almost identical mean scores on level of confidence in coping with patient aggression at T4, by which point all of them had received the intervention.

    Table 3. Confidence in coping with aggression: students’ results

    Discussion

    The aim of this study was to test whether the 50-minute de-escalation training session, defined in the ‘Management of Aggression Programme’ (MAP), could improve nursing students’ de-escalation skills and levels of confidence in coping with aggression. The results suggest that the de-escalation training has the potential to foster such improvements. However, these results should be interpreted with caution due to the small control group in the present study. Future research efforts should focus on replicating these findings with larger samples.

    In this study, significant positive changes in de-escalation behaviour were seen in the intervention group, while there were no changes in the control group. The extent of these changes indicates that these improvements could have clinically meaningful effects (33).

    The simulation scenarios involved two rather different situations with different actors. The post-test results for the intervention group indicate that the students were able to translate the knowledge gained from the de-escalation training into practice. They were able to generalise and apply the skills to a situation for which they had not been specifically trained. This strengthens the assumption that the students learned skills that they could actually apply to a new context. This transferability of skills indicates potential for the training to be clinically significant (34).

    In a similar de-escalation study on nursing students, Nau et al. (30) found a significant increase in skill levels after 24 hours of training. Results from the present study suggest that de-escalation training lasting just 50 minutes can also have positive effects and that increasing the training dosage could further improve skill levels. However, the brief duration of the de-escalation training in this study suggests that limited resources can still make an impact on delivering de-escalation training to nursing students. This could be a focus for future research.

    The results of this study indicate that exposure to simulation scenarios alone may improve nursing students’ confidence in coping with patient aggression. Both groups experienced an increase in their confidence levels after attending the first simulation scenario.

    It is worth noting that the control group with two sequential simulation scenarios did not experience a further increase in their confidence levels, but maintained the previous levels of achieved confidence in coping with patient aggression. This may indicate that a higher dose of simulation scenarios does not necessarily add additional benefits as regards confidence levels.

    The largest increase in the nursing students’ confidence levels was found when the control group underwent the de-escalation training after completing both simulation scenarios. This may indicate that a higher dose of exposure induced by simulation scenarios increases the students’ receptivity to training. At the end of the experiment, the control group and the intervention group reported similar levels of confidence, despite undergoing the de-escalation training in a different order. This indicates that adding simulation scenarios to de-escalation training can have a synergistic effect on increasing nursing students’ confidence in coping with patient aggression.

    Further, the total cumulative effect of the simulation scenarios and the de-escalation training was more important than the specific order in which the training was received. However, if the goal is to achieve the highest possible level of confidence in coping with patient aggression, specific training in de-escalation should be included.

    Strengths and limitations

    The strength of the present study was the randomised controlled experimental design, which included assessing participants’ behaviour and skills, rather than solely using self-report questionnaires. Furthermore, it was a strength that raters were blinded for participants’ group allocation.

    Nevertheless, the study has several limitations. First, the small sample size may have resulted in less robust parametric testing procedures. This may affect the reliability of the results and limit the generalisability of the study. The absence of a control group is often noted in previous studies of de-escalation training (32). This study was therefore conducted as a cluster randomised controlled trial to account for unknown variables potentially affecting the outcomes. However, the cluster randomisation led to an unequal distribution of participants in the groups, and the sample sizes in both groups (particularly the control group) are relatively small.

    The limitation caused by the small sample size is thus further reinforced by the relatively small size of the control group. Due to practical limitations set by the university college, we were only allowed to recruit students from three nursing classes. Thus, sample size calculations to ensure statistically meaningful results were not performed prior to conducting the study.

    Second, the intervention was administered by the first author. However, to reduce potential bias, the author played no part in the randomisation process and coding of videos, and played only a limited part in the statistical analysis.

    Moreover, this study tested de-escalation skills in a somatic environment. It would be of interest to examine whether the de-escalation training would give similar results in simulation scenarios that are adapted to another context, e.g. mental health services. Furthermore, it could be interesting to test if the skills have sustainability. This may be a focus for future studies.

    Conclusion

    Results from this study suggest that brief de-escalation training may improve students’ de-escalation behaviour as well as their confidence in coping with patient aggression. Exposure to simulation scenarios may help improve nursing students’ confidence levels. However, improvements in de-escalation behaviour and skills were associated with de-escalation training.

    Replication in future longitudinal studies with larger samples is needed to increase statistical power and ensure higher internal validity and generalisability of results.

    We would like to thank the participants in the study for their valuable contribution. In addition, we greatly appreciate the facilitating work of the Regional Competence Centre for Research and Education in Forensic Psychiatry at Helse Bergen.

      Funding

      The Regional Competence Centre for Research and Education in Forensic Psychiatry at Haukeland University Hospital funded translations of the instruments as well as students' compensation for participation.

      Conflicts of interest

      • Thomas Nag is the managing director of the Norwegian national staff-training programme ‘Management of Aggression Programme’ (MAP).
      • Mette Senneseth is a member of the research and development group associated with the staff-training programme MAP.
      • None of the authors have any commercial or financial interests in MAP.

      Open access CC BY 4.0.

      Peer-reviewed article
      Publication type
      Publication Year
      2023
      Edition Year
      18
      Publication Number
      92716
      Page Number
      e-92716

      De-escalation training improved students’ de-escalation skills and boosted their confidence in coping with patient aggression.

      Article is Peer Reviewed
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      Research
      English
      Sammendrag

      Background: De-escalation training is widely recommended for reducing violent incidents in the workplace, but is rarely included in nursing curriculums. Research suggests that nursing students should learn skills that enable them to respond to violence in a calm manner.

      Objective: To test whether a de-escalation training session could improve nursing students’ de-escalation skills and their confidence in coping with patient aggression.

      Method: The study was designed as a cluster randomised controlled trial that included three clusters (classes) of third-year nursing students allocated either to the intervention group (two classes, n=35) or the control group (one class, n=10). Data were collected at a Norwegian university college of nursing in February, August and November 2019. For each class, all data were collected over a period of five hours in one day. All participants were exposed to two simulation scenarios. The intervention group participated in a 50-minute de-escalation training session in between scenarios. The primary outcome was de-escalation skills, and the secondary outcome was confidence in coping with patient aggression. To measure de-escalation skills, videos of participants during the two simulation scenarios were used to collect data pre- and post-intervention. The English Modified De-escalating Aggressive Behaviour Scale (EMDABS) was applied to code videos. Confidence in coping with patient aggression was obtained through a validated self-report questionnaire before and after the two simulation scenarios, pre- and post-intervention.

      Results: After participating in the de-escalation training session, the students in the intervention group demonstrated positive changes in de-escalation skills compared to those of the control group. With regard to confidence in coping with patient aggression, both groups’ scores improved after they had attended simulation scenarios, but the largest improvements occurred after they had participated in the de-escalation training session. 

      Conclusion: The results suggest that de-escalation training has the potential to increase nursing students’ de-escalation skills and their confidence level in coping with patient aggression. Given the limitations of this study, replication with larger sample sizes is needed.

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      • Training in de-escalation increases knowledge and confidence levels. However, the main purpose of de-escalation training should be to change staff behaviour. There is limited knowledge about the extent to which de-escalation training actually contributes to improving staff skills.
      • This study tested whether 50 minutes of de-escalation training impacted on the students' de-escalation skills and confidence in coping with patient aggression. Data were collected through the coding of video recordings and questionnaires.
      • 50 minutes of de-escalation training improved nursing students’ de-escalation skills and their confidence levels in coping with patient aggression.

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    • Intensive care nurses’ experiences with organ donors at non-donor hospitals

      Montasjen viser et organdonorkort. På høyre side ses et bilde av en lege, en sykepleier og en pårørende ved en pasient i senga

      Introduction

      The number of people waiting for an organ transplant is increasing both in Norway and internationally. At the end of 2021, there were 449 patients on the organ transplant waiting list in Norway. A deceased donor can donate a total of seven organs and various types of tissue (1), thus saving several lives (2). There is a large mismatch between the supply and demand of donor organs (3).

      Organisation of organ donation in Norway

      Rikshospitalet is the National Treatment Service for Organ Transplantation, and all organ transplants in Norway are performed here. In order to supply organs to patients on the waiting list, Rikshospitalet is reliant on the efforts of donor hospitals (2).

      There are 28 donor hospitals in Norway, each of which possess the expertise and facilities to carry out the initial stages of the organ donation process and support the donor team during organ recovery. Each of the donor hospitals has a designated doctor for donors and often a designated nurse who acts as the link between the donor hospital and Rikshospitalet (2).

      The designated nurse is an intensive care nurse who, together with the designated doctor, formally bears responsibility for organ donations at the respective donor hospital. The designated nurse is allotted time to fulfil this role and is responsible for guiding organ donation processes, participating in conversations with the next of kin, and implementing a system for follow-up conversations with the next of kin (4).

      However, the identification of organ donors also takes place at other Norwegian hospitals, hereafter referred to as non-donor hospitals.

      The role of non-donor hospitals in the organ donation process

      Most local hospitals do not carry out the entire organ donation process due to a lack of facilities, staff and training. To become a donor hospital, approval must be sought from the Norwegian Directorate of Health, which grants donor hospital status in accordance with Section 4 of the Regulation on Human Organs for Transplantation (5).

      In recent years, some local hospitals have been approved as donor hospitals, but there are still approximately 20–24 hospitals that remain non-donor hospitals. Ten of the country’s non-donor hospitals reported a total of 1920 intensive care admissions in 2021 to the Norwegian Intensive Care Registry (NIR) (6).

      Even though the non-donor hospitals lack designated doctors and nurses for donors, they are still required to initiate the organ donation process by identifying potential organ donors and contacting the transplant coordinator at Rikshospitalet.

      Once potential organ donors are accepted by Rikshospitalet, it is the doctor and the intensive care nurse at the non-donor hospital who have the initial conversation with the next of kin to clarify consent for organ donation. If the potential donor has previously expressed a wish to be an organ donor, or if the next of kin has consented, the donor is transferred to a donor hospital for assessment and, if suitable, organ recovery (2).

      The donor team at Rikshospitalet does not perform organ recovery at non-donor hospitals. However, according to the guidelines for intensive care, all potential donors should still be given the opportunity to be assessed for organ donation by their own hospital trust. Non-donor hospitals therefore need to have effective systems and procedures in place to ensure that organ donation is considered when appropriate (6).

      The organ donation process and the intensive care nurse

      Organ donation is a relevant but rare event in the intensive care unit (ICU). It falls within the scope of intensive care nurses’ remit and responsibility, but requires a high level of expertise. The intensive care nurse’s responsibility in the organ donation process is described as multidimensional (1).

      Two studies from donor hospitals indicate that intensive care nurses are uncertain about their role and responsibilities in the organ donation process. Studies indicate that intensive care nurses feel they have insufficient knowledge to explain the diagnosis and treatment, as well as to manage the emotional reactions of the next of kin (7, 8). The reactions of the next of kin made a strong impression on the intensive care nurses.

      In a study conducted at all donor hospitals in Norway, Meyer et al. (9) found that few intensive care nurses had received training in or had experience with organ donation. The study pointed out that robust departmental procedures, competence and attitudes were important for identifying donors. The employees’ ability to provide support for organ donors and their next of kin also played an important role.

      Intensive care nurses have an ambivalent relationship with organ donation. Fear of negative reactions from colleagues and next of kin prevented them from discussing organ donation. Some intensive care nurses felt that they lacked the knowledge to take on such responsibility. Nevertheless, their personal dedication to organ donation fostered a sense of fulfilment and self-assurance (9).

      Disagreements within the treatment team could give rise to ethical conflicts and result in potential organ donors being missed (10).

      The intensive care nurses at non-donor hospitals were excluded from the aforementioned studies. Our systematic literature search did not identify any studies examining intensive care nurses’ experiences with organ donation at non-donor hospitals.

      Objective of the study

      The objective of the study was to gain insight into and describe intensive care nurses’ perceptions and experiences in relation to identifying and assessing potential donors at non-donor hospitals. This knowledge can provide a basis for targeted efforts to increase the proportion of organ donations from deceased donors at non-donor hospitals. The research questions were as follows:

      • What are intensive care nurses’ perceptions and experiences in relation to identifying and assessing potential donors at non-donor hospitals?
      • How can this knowledge help provide a basis for targeted efforts to increase the proportion of organ donations from deceased donors at non-donor hospitals?

      Method

      Sample and data collection

      The study has a qualitative design and employed semi-structured interviews as the data collection method (11). The informants in the study were recruited from a hospital trust in Norway. Six informants who met the inclusion criteria (Table 1) were recruited.

      All informants were intensive care nurses: three men and three women, aged 33 to 56. All had experience with organ donation at non-donor hospitals. Four of the informants also had experience with organ donation from donor hospitals.

      Table 1. The study’s inclusion criteria and reasons for choosing them

      The data collection method consisted of semi-structured individual interviews. An interview guide with key themes was prepared in advance. We conducted a pilot interview, and this was included in the study as the interview guide did not subsequently require significant changes. The interview guide served as an aid and allowed the interviewer to follow different directions as information emerged (12). The first author conducted the interviews in May 2022.

      The interviews began with questions about the informants’ educational background, work experience and age. The following are examples of questions from the interview guide:

      • Can you tell us about your experiences with organ donation?
      • What do you find most challenging about organ donation? Can you give examples?
      • What are the procedures in your department for assessing whether a patient is a potential organ donor?
      • How do you perceive the level of knowledge in your department?

      The interviews lasted between 23 and 34 minutes. To ensure backup of the audio recordings, we used both an audio recorder and the Nettskjema dictaphone app (13), in line with Nord University’s research ethics guide (14).

      The interviews were transcribed verbatim by the first author immediately after the interviews were held and quality assured by the last author. In total, the interviews constituted 56 pages of transcribed material. The first author also made notes on the non-verbal communication and atmosphere in the room after each interview.

      Analysis

      The data were analysed based on Malterud’s four-step systematic text condensation (11). The first step involved gaining an overall impression of the text. The transcribed texts were read multiple times so that the authors could familiarise themselves with the material, which Malterud describes as moving from chaos to preliminary themes. The material was viewed from a bird’s eye perspective, and the focus was on the overall content rather than specific details. At this stage, we noted eight preliminary themes, representing an initial intuitive step in the organisation of the material (11).

      In the second step, we identified meaning units and sorted them into code groups by reviewing the text line by line, using the research questions and preliminary themes from the first step as a basis. Some codes were found to be overlapping and these were merged accordingly. Consequently, the eight preliminary themes identified in step one were consolidated into six themes during step two (11).

      We developed, adjusted and merged some codes based on the preliminary themes. Four codes formed the basis for creating subgroups – see the excerpt from the analysis process in Table 2. In step three, the codes were condensed into abstracted meanings. In step four, we used the condensates to present the results in an analytical text that detailed the findings (11).

      Table 2. Examples from the analysis

      Research ethics considerations and approvals

      We sought permission to conduct the study from the Data Protection Officer (DPO) in the relevant hospital trust, and provided a Data Protection Impact Assessment (DPIA) that included an evaluation of the potential privacy implications. The DPO assessed the DPIA and study protocol and recommended the study (Elements, reference number 2022/982).

      We then emailed the hospital trust’s clinical director to obtain permission to recruit informants. The unit heads and clinical nurse educators from three ICUs were asked to find informants. The informants received both written and oral information about the project and signed a consent form.

      To ensure informant anonymity, we did not disclose their name or workplace during the interviews. The audio recordings were stored in Nord University’s secure storage area. The informants are mentioned in random order as informant 1, 2, 3 etc. The study was reported in accordance with the Consolidated Criteria for Reporting Qualitative Research (COREQ) (15).

      Results 

      The analysis resulted in two main findings: ‘random and person-dependent’ and ‘emotionally challenging onward transferral of organ donors’. The first finding concerns the intensive care nurses’ perception that various factors determine whether potential organ donors are identified or not. The initiation of the organ donation process depends on who is on duty.

      The second finding reveals that intensive care nurses find it an emotional challenge having to tell the next of kin that a potential organ donor has to be transferred to a donor hospital. They perceived this transfer as a barrier when faced with asking the next of kin about organ donation.

      Random and person-dependent 

      The informants at non-donor hospitals described organ donation as a rare occurrence. Some considered it an alien concept. The knowledge and experience in the treatment team varied, and the informants believed this was a contributing factor in whether organ donation was considered or not. Whether they were able to discuss the subject depended on which doctors and intensive care nurses were on duty. The intensive care nurses said that they were often the ones who brought up the subject with the doctors:

      ‘When we have the patients [organ donors] here [at this hospital], I’ve maybe started talking about it with the doctor who is responsible for the patient. You can tell that it’s also an absurd idea to the doctors, something they dismiss, really.’ (Informant 1)

      The informants had experienced doctors dismissing the topic when they brought it up and felt that their failure to consider organ donation was senseless. Some informants mentioned that after they had spent time explaining and discussing organ donation further with the doctor, they were granted permission to contact the transplant coordinator:

      ‘The worst that can happen is that the transplant coordinator says ‘no’. But it’s perhaps better to make one call too many than one too few.’ (Informant 1) 

      The informants described how limited resources and heavy workloads were factors that impacted on whether organ donation was considered. The number of times they had been in such situations varied:

      ‘I think that in many cases, we simply aren’t accustomed to thinking about it. Many staff haven’t come across it very often, so it becomes an alien concept.’ (Informant 2)

      When asked ‘Why do you think people don’t consider organ donation?’, informant 4 responded ‘Because no one talks about it. It’s easy to forget when no one talks about it’.

      Informant 5 said that she had thought several times that organ donation should have been considered, but no one took the initiative. Meanwhile, some believed that the treatment team was aware of potential donors but still expressed a need for more knowledge about the organ donation process: ‘It’s knowledge we need, without a doubt.’ (Informant 6)

      Lack of training was a common factor pointed out by the informants. Few had attended a course on organ donation after completing their education. They felt that they were missing out on updates on the topic, and this led to uncertainty about procedures, routines and regulations. The intensive care nurses described being unsure about which criteria to focus on when evaluating potential organ donors, and believed this was part of the reason why potential donors were not considered. The informants expressed a need for staff with specialist knowledge in organ donation who could conduct informative activities with the aim of raising awareness of the topic.

      All the informants were engaged in the subject and expressed the need for robust organ donor identification systems to stop organ donation being random and person-dependent. Intensive care nurses who knew of cases where patients had died while waiting for new organs said that this motivated them to identify possible organ donors.

      Emotionally challenging onward referral of organ donors

      The intensive care nurses felt that they had mastered the practical aspects of intensive care for potential organ donors. However, they described family care as one of the most challenging aspects of the organ donation process at a non-donor hospital: ‘The biggest challenge is discussing the subject with the next of kin’. (Informant 4)

      The necessary transfer of the donor to a donor hospital to complete the donation process made it challenging for the informants to present organ donation as something that the next of kin might agree to. The intensive care nurses believed that this transfer was a barrier to discussing organ donation with the next of kin. The informants were of the opinion that this factor could result in the next of kin refusing to consent to the donation:

      ‘Some intensive care nurses are hesitant about asking the next of kin because we know we have to transfer the donor. It’s an added burden for the next of kin to have to travel to a donor hospital, stay in a hotel and not have their family around them. I think more people might be donors if organ donation was more decentralised.’ (Informant 3)

      One informant told of next of kin who had initially consented to donation but changed their minds when the donor had to be transferred: ‘There have been instances where organ donation was planned but the next of kin ended up withdrawing their consent.’ (Informant 5)

      The intensive care nurses were concerned about how they could support the next of kin in their grief and wanted to provide care for both the next of kin and the organ donor in non-donor hospitals. Supporting the next of kin whilst also encouraging them to be open to organ donation took time, and was not something that could be done in a single shift. The intensive care nurses wanted organ donation to be decentralised in order to lessen the additional burden on the next of kin.

      Subjecting the next of kin to the added stress of waiting for the donation process to be completed was emotionally challenging for the intensive care nurses. However, they willingly endured the challenge because they had witnessed the suffering of patients waiting for new organs. Some had experienced patients dying while on the organ transplant waiting list. They had also seen how a new organ could give a patient a new lease of life:

      ‘For me, this is a burden I’m willing to bear because I’ve seen what getting a new organ means to people. But I understand that for the next of kin [of organ donors] it can be distressing.’ (Informant 2)

      Discussion

      Intensive care nurses at non-donor hospitals were of the opinion that whether a patient is considered for organ donation is random and person-dependent. It is also emotionally challenging having to tell the next of kin that a potential organ donor needs to be transferred to a donor hospital. One of the informants considered this emotional challenge a barrier to asking the next of kin about organ donation.

      Random and person-dependent

      The informants found that organ donation was not always considered and that it depended on who was on duty. Heavy workloads, limited resources and lack of a shared understanding among the treatment team were factors that impacted on whether potential organ donors were identified. This finding is consistent with Flodén et al. (16), who found that a lack of structured and sufficient organisation impacted on intensive care nurses’ ability to fulfil their professional responsibilities in the organ donation process.

      Meyer et al. (9) also describe uncertainty about organ donation among nurses at donor hospitals. The intensive care nurses felt that they lacked the knowledge to take on such responsibility. Organ donation is considered a team effort. Several studies show that the more positive the attitude of the healthcare team and the more open they are about organ donation, the greater the likelihood that the next of kin will consent to donation (16). This can also help ensure that potential organ donors are identified at an earlier stage (17).

      The informants acknowledged that the subject of organ donation was important and wanted to promote organ donation within their own department. The informants described how it was often the intensive care nurses who initiated discussions about organ donation when a potential donor was admitted to the department. This finding is consistent with previous research showing that intensive care nurses at local hospitals were more conscious of respecting potential donors’ personal wishes and will, despite having limited experience and training (18).

      The informants in our study also expressed frustration when organ donation was not considered and viewed it as senseless. This description aligns with previous research, which found that insufficient collaboration between nurses and doctors represents a challenge in the organ donation process (19). Having a shared understanding of the organ donation process within the treatment team can help prevent personal and ethical conflicts and foster a unified attitude, which in turn increases the likelihood of more potential organ donors being identified (10).

      Previous research has also demonstrated that intensive care nurses report a greater need for knowledge about organ donation at donor hospitals (20). Our informants at non-donor hospitals pointed out that differences in knowledge and experience within the treatment team contributed to organ donation being random and dependent on who was on duty. The informants wanted staff with specialist knowledge in organ donation who could devise effective systems and procedures as well as provide training for intensive care nurses and doctors.

      This is consistent with Lomero et al. (20), who claim that despite nurses being open to discussions about organ donation, they need more training to enhance their knowledge and skills. This will make them feel more reassured when discussing death and organ donation with next of kin.

      Emotionally challenging onward referral of organ donors

      The informants in our study found it challenging when organ donors were transferred to donor hospitals for diagnostic procedures and potential donation. They felt that this process challenged the next of kin’s sense of dignity in an already difficult situation. The informants wanted to provide care for the next of kin and the organ donor locally, and they cared about the well-being of the next of kin. They found it challenging that not all non-donor hospitals could perform the required diagnostic procedures. Potential organ donors have to be transferred, sometimes without their next of kin or the treatment team knowing if organ donation is feasible.

      The informants also encountered instances where donor hospitals lacked the capacity to accommodate the organ donor, resulting in the patient being unable to proceed with organ donation. According to the informants, both of these aspects can be barriers to seeking consent from the next of kin. They can also lead to the next of kin not giving consent.

      Several informants had experienced cases where the next of kin withdrew their consent when they discovered they could not be with the deceased patient up to the point of organ recovery, or when they learned that they had to travel to the donor hospital together with the organ donor to say their final farewell. This entails the next of kin being separated from their family while dealing with new healthcare personnel and unfamiliar surroundings.

      We found no other studies describing such experiences, and this aspect thus appears to be unique to non-donor hospitals. Previous studies from donor hospitals show that it is crucial for the next of kin to spend as much time as possible with the donor, from the point when organ donation is decided up until organ recovery (21, 22). However, this is not always possible in non-donor hospitals.

      Nevertheless, there are also similarities between our findings from non-donor hospitals and previous studies from donor hospitals. Our informants described how limited experience and knowledge of organ donation within the treatment team fostered uncertainty among intensive care nurses. This made it difficult to advocate for organ donation with the next of kin. The intensive care nurses’ level of knowledge, experiences and attitudes are considered important for providing family care when shifting the focus from intensive care treatment to organ-preserving treatment (10).

      Several studies describe the challenges of suggesting organ donation. For example, it is important to deliver the news at the right time. The news that the patient will not survive and the question of organ donation should be addressed separately (21, 23–26).

      In these earlier studies, the next of kin emphasised the importance of not feeling pressured when making the decision about organ donation. Having more information about the organ donation process before making the decision was essential for them (23).

      Other studies point out that there is no clear consensus on when is the best time to ask about organ donation (10, 24). In our study, the intensive care nurses are unsure when the right time is, and whether it is the intensive care nurse or the doctor who should put the question to the next of kin.

      Strengths and limitations of the study

      We chose a qualitative method for the study. The sample consisted of six informants from three intensive care units at a non-donor hospital within a hospital trust in Norway. Including more intensive care units and informants could have yielded different results. However, a high number of informants can also leave little time to carry out an in-depth analysis of the interviews (27).

      The inclusion criterion of a minimum of four years’ experience as an intensive care nurse at a non-donor hospital was intended to ensure that the informants had experience with organ donation. However, this criterion may limit the representation of perspectives from less experienced intensive care nurses. The sample was strategic and consisted of both female and male intensive care nurses of various ages. This provided a broad range of perspectives, which can help strengthen the study (28).

      In a small-scale study, the findings do not necessarily have to be generalisable to other hospitals. However, the possibility of the findings from this study being relevant to other non-donor hospitals should not be overlooked. More research is needed to determine this.

      Conclusion

      The study shows that intensive care nurses at non-donor hospitals consider the identification and assessment of potential organ donors to be random and person-dependent. It was important for the intensive care nurses to provide family care. They felt that transferring organ donors to donor hospitals placed an additional burden on the next of kin.

      In future research, it would be interesting to explore next of kin’s perceptions of organ donation at non-donor hospitals. It would also be interesting to investigate the interdisciplinary cooperation between intensive care nurses and doctors at non-donor hospitals.

      Implications for nursing practice

      The study points to a need to establish procedures to prevent organ donation becoming random at non-donor hospitals. The intensive care nurses believe that more training is required and that the interdisciplinary cooperation on organ donation needs to be improved. A dedicated nurse also needs to be appointed. Distributing knowledge in this way – which involves sharing knowledge – without upgrading to a full donor hospital, will probably be cost-effective, but a separate study would be needed to confirm this.

      The Norwegian Intensive Care Registry could serve as a valuable basis for making decisions on how non-donor hospitals should be organised. However, for this to happen, data on potential organ donors must be recorded for both non-donor and donor hospitals. Furthermore, the findings have shed light on the challenges related to providing family care and discussing organ donation with next of kin at non-donor hospitals, and they highlight areas that require solutions.

      We would like to thank the intensive care nurses who shared their experiences and Espen Bergli (an intensive care nurse), who proofread the manuscript.

      Financial support for the study was provided by the Professional Development Fund of the Organ Donation Foundation (Stiftelsen Organdonasjon). The foundation was not involved in the design or execution of the study.

      The authors declare no conflicts of interest. Lise Tuset Gustad was not an editor when the article manuscript was submitted and has not been involved in the work or its evaluation.

      Open access CC BY 4.0.

      Peer-reviewed article
      Publication type
      Publication Year
      2023
      Edition Year
      18
      Publication Number
      92669
      Page Number
      e-92669

      The knowledge possessed by intensive care nurses varies, and discussing the donor’s onward referral to a donor hospital with the next of kin is emotionally challenging for them.

      Article is Peer Reviewed
      1
      Innsendte kommentarer kvalitetssikres før publisering. Kvalitetssikringen skjer i vanlig arbeidstid.
      Research
      English
      Sammendrag

      Background: Organ transplantation in Norway is centralised and carried out at Rikshospitalet in Oslo. In order to meet the growing demand for organs, Rikshospitalet is dependent on identifying donors both at donor hospitals and non-donor hospitals. Our literature search did not find any previous studies describing intensive care nurses’ perceptions and experiences in relation to identifying and assessing organ donors at non-donor hospitals in Norway.

      Objective: To describe intensive care nurses’ perceptions and experiences in relation to identifying and assessing potential organ donors at non-donor hospitals.

      Method: The study has a qualitative, exploratory design and consists of semi-structured interviews with six intensive care nurses recruited from intensive care units at three non-donor hospitals in Norway in May 2022. The analysis was performed using systematic text condensation.

      Results: The analysis resulted in two main findings. The first main finding, ‘random and person-dependent’, reflects intensive care nurses’ perception that identifying organ donors and initiating the organ donation process is dependent on the knowledge of those who are on duty when the potential organ donor is treated. The second main finding, ‘emotionally challenging onward referral of organ donors’, highlights how intensive care nurses find it difficult to tell the next of kin that potential organ donors need to be transferred to a donor hospital. Discussing the subject of organ donation with the next of kin is therefore a challenge.

      Conclusion: Intensive care nurses are concerned that not all potential organ donors are being identified due to insufficient knowledge among the staff on duty in such situations. They find it difficult to discuss the subject of organ donation with the next of kin when they know that the potential organ donor needs to be transferred to a donor hospital for assessment and organ recovery. Systematic training is needed to increase intensive care nurses’ knowledge of organ donation and family care at local hospitals.

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      The montage shows an organ donor card. To the right you can see a doctor, a nurse and a family member standing by the bed of the patient
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      • The number of patients on the organ transplant waiting list is increasing every year, but the supply of organs is not following this trend. Our literature search found no studies that have described intensive care nurses’ perceptions and experiences in relation to identifying and assessing organ donors at non-donor hospitals in Norway. The study contributes knowledge on intensive care nurses’ experiences with organ donation at non-donor hospitals.
      • The findings of the study indicate a need for more training, dedicated personnel such as specialised nurses, and improvements in the interdisciplinary cooperation on organ donation at non-donor hospitals.
      • The study has generated knowledge on the importance of intensive care nurses providing family care. They feel that next of kin face an added burden when a donor is transferred to a donor hospital.

      1.         Meyer K. Organdonasjon. In: Stubberud D-G, Gullbrandsen T, eds. Intensivsykepleie. 4th ed. Oslo: Cappelen Damm Akademisk; 2020. pp. 711–25.

      2.         Norsk ressursgruppe for organdonasjon (NOROD). Protokoll for organdonasjon. NOROD; 2023. Available at: https://metodebok.no/index.php?action=book&book=organdonasjon (downloaded 08.05.2023).

      3.         Stiftelsen Organdonasjon. Kan jeg bli organdonor? Oslo: Stiftelsen Organdonasjon; n.d. Available at: https://organdonasjon.no/kan-jeg-bli-organdonor/ (downloaded 08.05.2023).

      4.         Norsk ressursgruppe for organdonasjon (NOROD). Funksjonsbeskrivelse for donoransvarlig sykepleier. NOROD; 2018. Available at: https://www.norod.no/funksjonsbeskrivelse-for-dal og-das/ (downloaded 08.05.2023).

      5.         Forskrift 7. desember 2015 nr. 1401 om humane organer beregnet for transplantasjon (forskrift om humane organer til transplantasjon). Available at: https://lovdata.no/dokument/SF/forskrift/2015-12-07-1401 (downloaded 08.05.2023).

      6.         Norsk Anestesiologisk Forening, Norsk sykepleierforbunds landsgruppe av intensivsykepleiere. Retningslinjer for intensivvirksomhet i Norge. 2014. Available at: https://www.legeforeningen.no/contentassets/7f641fe83f6f467f90686919e3b2ef37/retningslinjer_for_intensivvirksomhet_151014.pdf (downloaded 22.06.2023).

      7.         Haugerud SN. Organdonasjonsprosessen. Intensivsykepleieres opplevelser. Inspira. 2016;16(1):16–21.

      8.         YazdiMoghaddam H, Manzari Z-S, Mohammadi E. Nurses' challenges in caring for an organ donor brain dead patient and their solution strategies: a systematic review. Iranian Journal of Nursing and Midwifery Research. 2020;25(4):265–72.

      9.         Meyer K, Bjørk IT, Eide H. Intensive care nurses' perceptions of their professional competence in the organ donor process: a national survey. Journal of Advanced Nursing. 2012;68(1):104–15. DOI: 10.1111/j.1365-2648.2011.05721.x

      10.       Meyer K, Bjørk IT. Change of focus: from intensive care towards organ donation. Transplant International. 2008;21(2):133–9. DOI: 10.1111/j.1432-2277.2007.00583.x

      11.       Malterud K. Kvalitative forskningsmetoder for medisin og helsefag. 4th ed. Oslo: Universitetsforlaget; 2017.

      12.       Polit DF, Beck CT. Nursing research: generating and assessing evidence for nursing practice. 10th ed. Philadelphia: Wolters Kluwer; 2017.

      13.       Universitetet i Oslo. Nettskjema. Oslo: Universitetet i Oslo; n.d. Available at: https://nettskjema.no/ (downloaded 20.04.2022).

      14.       Nord universitet. Studenters ansvar for personvern i oppgaveskriving. Nord universitet; n.d. Available at: https://www.nord.no/om/personvern/studentoppgaver (downloaded 20.04.2022).

      15.       Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care. 2007;19(6):349–57. DOI: 10.1093/intqhc/mzm042

      16.       Flodén A, Berg M, Forsberg A. ICU nurses’ perceptions of responsibilities and organisation in relation to organ donation – a phenomenographic study. Intensive Crit Care Nurs. 2011;27(6):305–16. DOI: 10.1016/j.iccn.2011.08.002

      17.       Gripewall E, Kerstis B, Bjorlling G, Fagerstrom L, Mattson J, Widarsson M, et al. Intensive care nurses’ experiences of caring during the organ donor process in Sweden – a qualitative study. International Journal of Caring Sciences. 2022;15(2):720–6. Available at: https://internationaljournalofcaringsciences.org/docs/1.%20gripelwall.pdf (downloaded 08.05.2023).

      18.       Simonsson J, Keijzer K, Södereld T, Forsberg A. Intensive critical care nurses’ with limited experience: experiences of caring for an organ donor during the donation process. Journal of Clinical Nursing. 2020;29(9–10):1614–22. DOI: 10.1111/jocn.15195

      19.       Human L, Prins L. Early identification and referral of organ donors in five private hospitals: a survey to determine the knowledge and views of critical care professional nurses pre and post a PowerPoint training intervention. The Southern African Journal of Critical Care. 2019;35(2):48–55.  DOI: 10.7196/SAJCC.2019.v35i2.370

      20.       Lomero MdM, Jiménez‐Herrera MF, Rasero MJ, Sandiumenge A. Nurses’ attitudes and knowledge regarding organ and tissue donation and transplantation in a provincial hospital: a descriptive and multivariate analysis. Nurs Health Sci. 2017;19(3):322–30. DOI: 10.1111/nhs.12348

      21.       Syversen TB, Sørensen DW, Foss S, Andersen MH. Donation after circulatory death – an expanded opportunity for donation appreciated by families. Journal of Critical Care. 2018;43:306–11. DOI: 10.1016/j.jcrc.2017.09.002

      22.       Berntzen H, Bjørk IT. Experiences of donor families after consenting to organ donation: a qualitative study. Intensive Crit Care Nurs. 2014;30(5):266–74. DOI: 10.1016/j.iccn.2014.03.001

      23.       Jacoby LH, Breitkopf CR, Pease EA. A qualitative examination of the needs of families faced with the option of organ donation. Dimens Crit Care Nurs. 2005;24(4):183–9. DOI: 10.1097/00003465-200507000-00009

      24.       Orøy A, Strømskag KE, Gjengedal E. Approaching families on the subject of organ donation: a phenomenological study of the experience of healthcare professionals. Intensive Crit Care Nurs. 2013;29(4):202–11. DOI: 10.1016/j.iccn.2013.02.003

      25.       Simpkin AL, Robertson LC, Barber VS, Young JD. Modifiable factors influencing relatives’ decision to offer organ donation: systematic review. BMJ. 2009;338(7702):1061–3. DOI: 10.1136/bmj.b991

      26.       Flodén A, Kelvered M, Frid I, Backman L. Causes why organ donation was not carried out despite the deceased being positive to donation. Transplant Proc. 2006;38(8):2619–21. DOI: 10.1016/j.transproceed.2006.07.031

      27.       De nasjonale forskningsetiske komiteene (FEK). Veiledning for forskningsetisk og vitenskapelig vurdering av kvalitative forskningsprosjekt innen medisin og helsefag. FEK; 2010. Available at: https://www.forskningsetikk.no/retningslinjer/med-helse/vurdering-av-kvalitative-forskningsprosjekt-innen-medisin-og-helsefag/ (downloaded 20.04.2022).

      28.       Kvale S, Brinkmann S. Det kvalitative forskningsintervju. 3rd ed. Oslo: Gyldendal Akademisk; 2021.

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    • Lecturers’ experiences with supervising nursing students in clinical practice during the COVID-19 pandemic

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      Introduction

      The COVID-19 pandemic hit the world like a tsunami in March 2020. In Norway, national guidelines and restrictions were swiftly introduced to prevent the spread of the virus. Strict rules on social distancing and socialising were imposed on the population, and everyday life changed overnight. Higher education institutions that primarily offered in-person education, both in theoretical studies and in clinical practice, were required to close and switch to digital tools to conduct the planned teaching and supervision.

      The bachelor’s programme in nursing consists of 50% theory and 50% clinical practice conducted in various settings in primary care and the specialist health service (1). During the pandemic, lecturers could not be physically present to supervise students, and this created challenges.

      Research shows that, during this period, nursing students experienced stress, fear of infection, uncertainty, loneliness, problems with concentration as well as concerns about grades, exams, their nursing licence and future careers (2–9). However, they also had a positive sense of being part of history, making a contribution, and felt this to be personally and professionally rewarding (5).

      Nursing lecturers normally carry out regular evaluation interviews and group supervision sessions with students at their respective clinical placements. When the restrictions were imposed, the teachers were faced with a new, challenging situation. The usual pedagogical approach was challenged and its nature changed when digital learning methods were introduced. The lecturers’ experience with using digital learning platforms varied. The requirement to replace in-person meetings with remote meetings via a screen changed the lecturer’s role and created various challenges.

      International studies examining how the restrictions during the pandemic affected the lecturer’s role in nursing education show both advantages and disadvantages of remote supervision (10, 11). A Norwegian study (9) shows that although remote supervision was effective, 90% of the supervisors desired a physical presence. The participants in this study found that remote supervision affected the social interaction, and it was difficult to maintain a focus in the communication between participants. It also emerged that this form of supervision was tiresome (9).

      Research further shows that some people considered the digitalisation beneficial, as it provided them with new insights and experience in methods that increased efficiency and flexibility, and improved skills in using such tools (10, 12–14).

      The change came abruptly and it was forced on them. It is described, inter alia, as a drastic change that triggered stress, helplessness and anxiety (10). Disadvantages included lack of skills, managers’ lack of understanding of the challenges, structural and technical issues, time-consuming preparation of educational content and reduced teacher-student interaction (10, 12).

      The lecturers also experienced an increase in enquiries from frustrated students, and they came to realise the importance of setting clear boundaries regarding their availability (10). Others felt that the distance to the students grew (13). Opinions are divided on whether continuing remote supervision after the pandemic is a good idea (15).

      Previous studies have mainly focused on nursing students’ experiences of learning and the strain that the extra workload during the COVID-19 pandemic placed on healthcare personnel’s supervision of the students (16). Little is known about lecturers’ experiences with following up students in clinical practice.

      Objective of the study

      The objective of this study was to gain insight into lecturers’ experiences with following up nursing students in clinical practice during the pandemic in 2020.

      We aimed to shed light on the following research question:

      ‘How do nursing lecturers think the COVID-19 pandemic affected the supervision of students in clinical practice?’

      Method

      In order to gain a deeper insight into lecturers’ experiences with following up nursing students in clinical practice, we chose a qualitative approach using the focus group interview method. We conducted four focus group interviews with lecturers who had supervised nursing students in clinical practice during the COVID-19 pandemic at a university in South Norway.

      Focus group interviews are well-suited for when participants have a common background of experience. They provide supplementary information through the informants’ dialogue with each other, and the group discussion can foster diversity and nuances (17).

      Preunderstanding

      All five authors have extensive experience in nursing education. Two of the authors (GA and AVS) were themselves placement supervisors during the pandemic.

      Sample and recruitment

      To achieve maximum variation, we opened participation up to all academic staff at two campuses who had supervised nursing students in clinical practice during the COVID-19 pandemic. They are referred to here as ‘lecturers’ or ‘nursing lecturers’.

      The invitations were sent by email in spring 2021, with a follow-up reminder after two weeks. A total of 17 nursing lecturers accepted the invitation. Both sexes were represented. The participants’ ages ranged from 35 to 62 years, with work experience ranging from 1 to 31 years. They had supervised students who had undertaken clinical placements in primary health care and the specialist health service.

      Data collection

      The focus group interviews were conducted in the spring of 2021. The interviews were conducted via the digital platform Zoom with an audio recorder because it was not possible to meet in person during the pandemic. Each group consisted of four to five participants. Two of the authors (GSA and AS) led the focus group interviews, with one serving as the moderator and the other as the co-facilitator. A semi-structured interview guide was used to structure the interviews (see Table 1).

      Table 1. Interview guide

      Analysis

      We conducted a thematic analysis as described by Braun and Clarke (18). First, all four focus group interviews were read thoroughly several times, and each interview was summarised. We then identified meaning units and patterns and coded the various interviews, with four authors reading them individually (GS, GR, KH and AS).

      We reviewed the codes, which produced various themes. Finally, all the themes were reviewed, labelled, concisely phrased and linked to relevant data (see Table 2). We identified three main themes, each consisting of two to three subthemes. The themes overlap to some extent.

      Table 2. Illustration of the analysis

      Research ethics

      The study was approved by the Norwegian Centre for Research Data (NSD), project number 973745, and the faculty’s ethics committee. The lecturers who wanted to participate contacted us, received oral information about the study and provided written consent before the interviews were conducted.

      Results

      The main themes and subthemes are presented in Table 3.

      Table 3. Main themes and subthemes

      Sense of chaos

      There was considerable confusion when the pandemic started in March 2020. The lecturers described a sense of chaos. They found that there was great uncertainty at all levels. Central authorities were unclear about what the guidelines should be, institution leaders were unsure, and the teachers felt that it took too long to get information. The guidelines were constantly changing, and doubts arose as to which provisions were applicable:

      ‘We were inundated with phone calls, text messages and emails. What do we do? What happens now? And, a great deal of uncertainty, also from the authorities’ side about what the implications might be.’

      Several of the nursing lecturers described feeling very uncertain about whether they were able to support the students whilst also keeping up to date with the latest guidelines. They also found that the field of practice was in a challenging situation that necessitated more facilitation and clear communication on the part of the nursing lecturers.

      The lecturers described having to take things as they came, and that the situation was unpredictable. One commented, ‘It was like being on a ship in a storm in unknown waters’.

      Eventually, the situation started to calm down, but the lecturers described working long days and having to check their emails frequently to stay up to date. It could be challenging for those with young children who had to stay at home due to school and daycare closures. The students contacted them at all times of the day and were very confused about the situation.

      The lecturers found it difficult to alleviate the students’ uncertainty and anxiety about transmitting the virus to patients and about getting sick themselves and not being able to complete their clinical placement. One of the lecturers said:

      ‘I had students in clinical practice who had a lot of questions for us lecturers. I felt that the students were becoming anxious. Anxious about getting COVID, but also, what will happen to my studies if I fall ill?’ 

      Others felt that they received sufficient information and had the ability to adapt. The most difficult part was all the questions they felt unable to answer and the uncertainty about the severity of COVID-19.

      One of the groups expressed it as follows: ‘And I also think to some extent many of us didn’t fully understand the severity of the situation.’

      Another described the situation as ‘[We] were kind of wandering around like headless chickens, I felt’.

      The challenges of digitalisation

      When the pandemic broke out, in-person meetings and contact came to an end. Teaching at the university was rapidly digitalised. Learning how to use the new digital tool was challenging whilst interacting with students and the field of practice through a screen.

      The digital tool became the meeting platform where all interaction with students was supposed to take place. One teacher described it as follows: ‘I think this pandemic has, in a way, forced us into digitalisation to a large extent.’

      The lecturers found that when all communication was conducted remotely, it was sometimes difficult to interpret non-verbal communication. They also described how interpreting the communication with the placement supervisor could be challenging if the student’s situation was unclear:

      ‘We lost some of the non-verbal language that we sometimes try to pick up on in such conversations and address when the contact nurse doesn’t quite dare say that things aren’t going well in clinical practice.’

      The lecturers also described how they found it relatively easy to connect with the students on Zoom during group sessions. They said that the students handled the situation better and better as time went on.

      It also emerged that whether the interaction was remote or in-person was not the most important factor. The relationship between the lecturer, the placement supervisor and the student is of great importance and crucial to the student’s motivation to acquire the necessary knowledge:  

      ‘I don’t think it’s the digital solutions or physical presence that really make the difference. It’s more about the relational connection and, not least, the motivation of the students to make the most of the learning opportunity on the ward.’

      Conversely, the lecturers experienced that digital interaction amplified the vulnerability of students who felt uncertain. It could be time-consuming for the lecturer to support and assist these students:

      ‘And I think it’s a bit like, those who are already vulnerable become even more vulnerable with the digital aspect. And as a lecturer, it’s difficult to help them progress, and of course you put yourself at their disposal, and it’s time-consuming, but I think it’s necessary, at least initially.’

      When everything was done remotely, it was challenging for the nursing lecturers to communicate when assessing weak students. They had telephone contact, which could result in the students receiving inadequate information. In these situations, the need for support from other lecturers was noticeable:

      ‘We called each other a lot. It was perhaps a bit behind the student’s back, in that we had to talk to the supervisor and the student separately. But we missed that colleague support a bit.’

      It also emerged that the requirements were sometimes eased in order for students to pass their clinical practice.

      One of the coursework requirements in clinical practice consisted of group sessions in which students were supposed to present anonymised patient situations. It was difficult for the lecturers to observe the duty of confidentiality when the students were not located in the clinical placement or on campus. They were unsure what they could talk about remotely:

      ‘So this thing about how to maintain confidentiality in this situation, well, that was probably a failure on my part. The students could be anywhere [one was at a cafe, it turned out, and one was in bed].’

      Some lecturers felt that the group conversations went well, while others found it difficult to keep a conversation going. Remote group sessions save time, and the lecturers discussed the conflict between quality and saving resources.

      The changing role of the lecturer

      The lecturers’ role changed during the pandemic. They described feeling a lot of responsibility for the students’ learning and experiencing negative emotions related to how the students were doing in clinical practice. This was a natural topic to bring up in conversations with the students. Lecturers were also instructed to have contact with the students once a week to check how they were faring. One lecturer described this as follows: 

      ‘We have probably focused much more than before on how the student is actually faring, not only in clinical practice, but also in life, and it has been a significant part of the conversations, both in groups and during the assessment discussions in fact. It probably took quite a lot of time. We’ve had rounds in the reflection groups discussing how everyone is doing, how is your life going, are you spending a lot of time on your own, are you lonely? So, it’s been a much bigger topic than before.’

      Especially at the start of the pandemic, the lecturers described heavy workloads and long working days. They were working from home and did not have the usual tools available:

      ‘I can't say that Zoom has saved time in this case, because I think we’ve spent more time than I would have spent going out to the various zones, because here you have to make individual agreements and assessments, and preparations, so I would say that it’s probably taken more time, if anything.’   

      Some lecturers felt they were left to their own devices and that they had to come up with solutions on their own. The collegiality changed completely, and contact to check how things were going was irregular. Several lecturers faced challenges in looking after their children at home while having to work. They described the pressure as follows:

      ‘The stress that we experienced during that period was enough to make you ill, and as the year progressed, it did make you ill in a way.’

      Discussion

      The objective of this study was to gain insight into lecturers’ experiences with following up nursing students in clinical practice during the pandemic in 2020.

      The results show that they felt a sense of chaos, that the digital solutions were challenging, and that their role as lecturer changed.

      The sense of chaos is largely linked to the rapidly changing situation and a lack of guidelines and procedures. It was also intensified because they had to work from home and share space with other family members who might also be working, or children needing help and care. The lecturers’ own family circumstances and the situation in society in general therefore had a major impact on their work situation.

      This is also described in other studies showing that working hours became blurred, and that many anxious students would contact them outside normal working hours (10). Remote meetings can blur the boundaries between leisure time and work time. When students and lecturers are behind their respective screens, it can be easier to cross boundaries of equality and fairness, which can lead to ethical challenges (9). Research also shows that students prefer in-person meetings to remote meetings (19).

      The rapid shift to remote meetings and learning meant there was little time to prepare. This led to a trial and error approach, improvisation, learning on the hoof and taking one day at a time (20). The unpredictability contributed to stress and feelings of inadequacy.

      It is also documented in international studies that the rapid transition to teaching and follow-up on digital platforms led to several challenges. Crawford et al. (21) analysed how the higher education sector in 20 countries responded to the COVID-19 crisis. They found that several countries adopted new remote teaching and learning strategies using the available technology. Crawford et al. reported similar challenges to this study. These challenges were related to resources, infrastructure, internet access and the equipment available to staff and students at home, as well as the lecturers’ and students’ technical skills (21).

      Lecturers struggled with various emotions, such as fear of contracting COVID-19, concern about whether students would be able to complete their studies, and uncertainty about the digital solutions. Such feelings are also described by Rumbley et al. (20), who observed that staff experienced fear, worry, uncertainty and inconvenience linked to the rapid and unplanned changes in roles and teaching arrangements.

      In a situation of uncertainty as a result of everything that is happening, it is also challenging to help worried students who feel there is a lot at stake, both in relation to not contracting COVID-19 and completing their clinical placement. In such a situation, the lecturers felt that they shouldered a lot of the responsibility, not only for the academic situation, but also for the students’ personal situation. The institutions’ managers encouraged staff to have weekly conversations with the students during this period, both to provide mental health support and to assess each student’s placement situation.

      Strengths and weaknesses of the study

      One of the strengths of the study is that 17 randomly selected informants from two different campuses participated in the interviews. However, it may be a weakness that they were all from the same study programme and that the interviews were conducted via Zoom, which may have influenced the group dynamics. Having four researchers involved in the analysis is a strength, but it may be a weakness that all five researchers work at the institution where the study was conducted.

      The focus group was an appropriate method because it provided opportunities for dialogue. Several participants expressed that it was beneficial to discuss their experiences with colleagues. Whether individual interviews could have elicited other experiences is open to question.

      Conclusion

      The objective of this study was to gain insight into nursing lecturers’ experiences with following up nursing students in clinical practice during the pandemic. The results show that when teaching and supervision had to take place remotely, it created a sense of chaos and lack of control, and some described it as forced digitalisation.

      It was challenging for the lecturers to address the students’ uncertainty when they themselves felt a great deal of uncertainty and a lack of control. Furthermore, it was difficult to understand the students’ situation in the remote contact via screens, especially if they were facing challenges. Vulnerability became more apparent when all contact was online.

      In addition to their own personal uncertainty, the lecturers experienced unclear guidelines that were constantly changing. The uncertainty was greatest at the start, and some felt that management were too slow to provide information. Clear guidelines and strong leadership are needed when a crisis occurs.

      The nursing lecturers needed immediate support to carry out their teaching work. It was a challenge for university staff to carry out their pedagogical duties related to clinical practice, and extra facilitation is needed to enable students to achieve their learning objectives during a crisis.

      The authors declare no conflicts of interest.

      Open access CC BY 4.0.

      Peer-reviewed article
      Publication type
      Publication Year
      2023
      Edition Year
      18
      Publication Number
      92297
      Page Number
      e-92297

      They wanted clear guidelines and procedures and felt forced to digitise their work.

      Article is Peer Reviewed
      1
      Innsendte kommentarer kvalitetssikres før publisering. Kvalitetssikringen skjer i vanlig arbeidstid.
      Research
      English
      Sammendrag

      Background: The COVID-19 pandemic had major implications for the supervision of nursing students in clinical practice. The usual pedagogical approach was challenged and its nature changed when digital learning methods were introduced. Nursing lecturers could not be physically present when supervising students, and this led to new, challenging situations.

      Objective: The objective of this study was to gain insight into the experiences of nursing lecturers as they supervised nursing students in clinical practice during the pandemic in 2020.

      Method: We conducted four focus group interviews with lecturers who supervised nursing students in clinical practice during the COVID-19 pandemic at a university in South Norway. The data were analysed using thematic analysis as described by Braun and Clark, resulting in the following three main themes: ‘Sense of chaos’, ‘The challenges of digitalisation’ and ‘The changing role of the lecturer’.

      Results: The lecturers considered the rapidly changing situation to be chaotic and found there to be a lack of clear guidelines and procedures. It was difficult for the lecturers to stay updated while also following up the students. Furthermore, the sense of chaos was reinforced by the necessity to work from home. The follow-up of clinical practice had to be conducted online, and there was uncertainty related to the use of digital tools. The situation affected the relationship between the lecturer, student and placement supervisor, especially when students faced challenges. The lecturers shouldered a lot of the responsibility for the academic situation, but also for the students’ personal situation, both to provide mental health support and to gain an overview of each student’s placement situation. This changed the role of the nursing lecturer.

      Conclusion: The study shows that the changes created a sense of chaos and lack of control. Uncertainty was greatest at the beginning, and some experienced delays in receiving information about current guidelines. The nursing lecturers described the digitalisation as being forced upon them. It was challenging for them to carry out their teaching work, and the arrangements had to be exceptionally well-facilitated to enable the students to achieve their learning objectives in clinical practice. The study highlights the significant need for clear guidelines and effective leadership during a crisis.

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      Endringer i tabell 2:

      Rettet feil i kodegruppe i rad 2, 3 og 4:

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      • Many nursing students were unable to complete their clinical placement as planned during the COVID-19 pandemic. There were varied experiences in following up nursing students remotely. The COVID-19 pandemic created stress and uncertainty.
      • We conducted four focus group interviews with 17 nursing lecturers. We aimed to investigate their experiences with following up and supervising nursing students in clinical practice during the COVID-19 pandemic.
      • The study provides insight into what it was like to supervise nursing students in clinical practice during the COVID-19 pandemic. The study presents knowledge that can contribute to better supervision in clinical practice during similar extreme situations in the future.

      1.         Kunnskapsdepartementet. Rammeplan for sykepleierutdanning. Oslo: Kunnskapsdepartementet; 2008. Available at: https://www.regjeringen.no/globalassets/upload/kd/vedlegg/uh/rammeplaner/helse/rammeplan_sykepleierutdanning_08.pdf (downloaded 15.02.2023).

      2.         Gallego-Gómez JI, Campillo-Cano M, Carrión-Martínez A, Balanza S, Rodríguez-González-Moro MT, Simonelli-Muñoz AJ, et al. The COVID-19 pandemic and its impact on homebound nursing students. Int J Environ Res Public Health. 2020;17(20):7383. DOI: 10.3390/ijerph17207383

      3.         Romero-Blanco C, Rodríguez-Almagro J, Onieva-Zafra MD, Parra-Fernández ML, Prado-Laguna MDC, Hernández-Martínez A. Sleep pattern changes in nursing students during the COVID-19 lockdown. Int J Environ Res Public Health. 2020;17(14):5222. DOI: 10.3390/ijerph17145222

      4.         Aslan H, Pekince H. Nursing students' views on the COVID-19 pandemic and their perceived stress levels. Perspect Psychiatr Care. 2021;57(2):695–701. DOI: 10.1111/ppc.12597

      5.         Swift A, Banks L, Baleswaran A, Cooke N, Little C, McGrath L, et al. COVID-19 and student nurses: a view from England. J Clin Nurs. 2020;29(17–18):3111–4. DOI: 10.1111/jocn.15298

      6.         Savitsky B, Findling Y, Ereli A, Hendel T. Anxiety and coping strategies among nursing students during the covid-19 pandemic. Nurse Educ Pract. 2020;46:102809. DOI: 10.1016/j.nepr.2020.102809

      7.         Dewart G, Corcoran L, Thirsk L, Petrovic K. Nursing education in a pandemic: academic challenges in response to COVID-19. Nurse Educ Today. 2020;92:104471. DOI: 10.1016/j.nedt.2020.104471

      8.         Lobão C, Coelho A, Gonçalves R, Parola V, Neves H, Sousa JP. Changes in clinical training for nursing students during the COVID-19 pandemic: a scoping review protocol. Nurs Rep. 2022;12(1):210–6. DOI: 10.3390/nursrep12010021

      9.         Sandnes L, Solbakken R. Digital undervisning gir nye etiske utfordringer. Sykepleien Forskning. 2022;110(88191):e-88191. DOI: 10.4220/Sykepleiens.2022.88191

      10.       Nabolsi M, Abu-Moghli F, Khalaf I, Zumot A, Suliman W. Nursing faculty experience with online distance education during COVID-19 crisis: a qualitative study. J Prof Nurs. 2021;37(5):828–35. DOI: 10.1016/j.profnurs.2021.06.002

      11.       Sessions LC, Ness M, Mark H. Exploring the experiences of nursing faculty during the coronavirus (COVID-19) pandemic – a qualitative descriptive study. Teach Learn Nurs. 2022;17(4):477–81. DOI: 10.1016/j.teln.2022.05.010

      12.       Tolyat M, Abolfazl Vagharseyyedin S, Nakhaei M. Education of nursing profession amid COVID-19 pandemic: a qualitative study. J Adv Med Educ Prof. 2022;10(1):39–47. DOI: 10.30476/jamp.2021.90779.1422

      13.       Li W, Gillies R, He M, Wu C, Liu S, Gong Z, et al. Barriers and facilitators to online medical and nursing education during the COVID-19 pandemic: perspectives from international students from low- and middle-income countries and their teaching staff. Hum Resour Health. 2021;19(1):64. DOI: 10.1186/s12960-021-00609-9

      14.       Howe DL, Heitner KL, Dozier A, Silas S. Health professions faculty experiences teaching online during the COVID-19 pandemic. ABNF Journal. 2021;32(1):6–11.

      15.       Unnikrishnan VV, Tr S, Varghese S. Perceptions of nursing faculty on online teaching during Covid 19 pandemic in Kerala. Nursing Journal of India. 2020;111(6):253–6.

      16.       Martin P, Tian E, Kumar S, Lizarondo L. A rapid review of the impact of COVID-19 on clinical supervision practices of healthcare workers and students in healthcare settings. J Adv Nurs. 2022;78(11):3531–9. DOI: 10.1111/jan.15360

      17.       Malterud K. Fokusgrupper som forskningsmetode for medisin og helsefag. Oslo: Universitetsforlaget; 2012.

      18.       Braun V. Thematic analysis: a practical guide. I: Clarke V, Braun V, red. Los Angeles, California: Sage; 2022.

      19.       Adhikari S. Attitude towards online classes among nursing students during COVID-19 pandemic at Nobel Medical College Teaching Hospital. Journal of Nobel Medical College. 2022;11(1):3–7. DOI: 10.3126/jonmc.v11i1.45717

      20.       Rumbley LE. Coping with Covid-19: International higher education in Europe. European Association for International Education; 2020. Available at:  https://www.eaie.org/our-resources/library/publication/Research-and-trends/Coping-with-COVID-19--International-higher-education-in-Europe.html (downloaded 23.05.2023).

      21.       Crawford J, Butler-Henderson K, Rudolph J, Malkawi B, Glowatz M, Burton R, et al. COVID-19: 20 countries’ higher education intra-period digital pedagogy responses. Journal of Applied Learning & Teaching. 2020;3(1):1–20. DOI: 10.37074/jalt.2020.3.1.7

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    • Cystic fibrosis: parents’ experiences of informing their children about the disease

      Bildet viser en far som sitter og holder et lite barn i armene

      Introduction

      Cystic fibrosis (CF) is an autosomal recessive inherited progressive disorder (1) that can affect multiple organs, such as the pancreas, bowels, liver, and lungs. Some patients have mild symptoms, while others become seriously ill (2). Pulmonary disease is the main cause of premature death and accounts for 95 per cent of the mortality (3).

      In recent decades, improved diagnostics and treatments have considerably extended the life expectancy of CF patients (4). They now have an opportunity to go to school and to have a working life. Many have higher education, work part time or full time and have their own family, although they live with the threat of developing serious disease (4, 5).

      Pulmonary physiotherapy is a key part of preventive CF treatment programmes. Most people with CF are treated with pancreatic enzymes to improve their uptake of nutrients. Those who recognise known complications, such as infections and reduced pulmonary function, at an early stage, will have better treatment outcomes. Outpatient consultations, hospitalisation and lengthy home-based treatments impact on the patients’ daily routines and their quality of life (1, 4).

      Many people with CF wish to become parents. The parenting role is affected by the chronic disease, which lays claim to much time and personal effort. Those who want children should plan this in consultation with the treating doctor (6, 7). The couple must be informed about CF inheritance and the healthy partner must be offered genetic analysis. The child will be a genetic carrier of the disease, which may affect them later in life.

      Healthcare personnel have a duty to help provide information to children whose parents or siblings are patients with a mental health disorder, substance dependence, serious somatic illness or injury (8). Multiple earlier studies have focused on children with CF, how parents deal with having a child with CF (2, 9, 10), and how parents with CF need to balance their time between caring for their child and caring for themselves (7).

      We are not aware of any existing research on how parents with CF inform their children about the disease. Research on parents living with cancer and multiple sclerosis (MS) is of relevance, since these are also serious illnesses with an uncertain prognosis. As is the case with CF, cancer treatment and MS exacerbation can lead to hospitalisation, leaving the child separated from the people caring for them (11, 12).

      Cancer in parents can cause psychosocial stress in children and a fear of losing the person who is ill (11). Emotional problems in parents with MS increase the risk of their children developing mental health problems (13). Communication about the parents’ disease is a process that should start at an early age and continue through the children’s stages of development.

      Objective of the study

      We wanted to obtain knowledge about parents with CF and their experiences of informing their children about the disease, as well as their expectations of healthcare personnel in this context.

      Method

      Study design

      The study has a qualitative descriptive design (14, 15). Semi-structured interviews (16) were conducted, and the material gathered was subjected to a qualitative content analysis (15). The study design involves comprehensive syntheses of phenomena, referred to as situations in colloquial language (14). Qualitative content analysis was chosen because the findings can be described as a synthesis of the informants’ experiences (16). The study was a quality improvement project, and the purpose of the analysis was primarily to describe rather than investigate data in an interpretive manner (15).

      Sample

      The patients were recruited when attending Oslo University Hospital for medical check-ups. The inclusion criterion was confirmed CF diagnosis before having had biological or adopted children. We included 16 adults: twelve women aged between 29 and 63, and four men in the 42–54 age range. Combined, they had 30 children aged between twelve months and 30 years (27 biological and three adopted). The parent with CF was interviewed. Patients were included irrespective of the severity of their illness. Their marital status was not recorded.

      We prepared an interview guide consisting of the following questions:

      • How do you feel about telling other people about your condition?
      • What have you told your children about having CF?
      • What age was the child when the information was first provided?
      • What are your expectations of healthcare personnel in terms of providing your children with information about your disease?

      Conducting the interviews

      An experienced specialist CF nurse conducted the interviews in the period between December 2014 and May 2015 at Oslo University Hospital’s pulmonary outpatient clinic. Audio recordings were made of all conversations, one interview per participant. We used an interview guide where we focused on the information provided to children by their own parents. We put an emphasis on openness in all our conversations, to encourage patients to talk about their own experiences. Interview duration was between 30 and 60 minutes.

      Qualitative content analysis

      The analytic process started during the interview (17). All interviews were transcribed verbatim. This was followed by spot checks, which involved us reading excerpts of the transcript while playing the audio recording (18, 19). We identified meaning units within the text, based on the study’s research questions. These units were verbatim quotes and represented the transcript’s manifest content.

      The units were then condensed and re-phrased, to allow the key content to emerge as condensed meaning units. We proceeded to group these units into categories, so that underlying meanings and core concepts formed sub-themes and themes, as demonstrated in Table 1. The first and last author both took part in the analytic process.

      The first author conducted the interviews and transcribed the recordings. She has experience of the patient group after many years of working in a clinical setting. The last author has extensive research experience and provided supervision and quality assurance of the analysis.

      Table 1. Example of content analysis

      Ethical considerations

      The patients received oral and written information about the study. It has been approved by the data protection officer at Oslo University Hospital and meets the requirements of voluntary participation, informed consent, and confidentiality (20). The Regional Committee for Medical and Health Research Ethics (REC) considered the study to be a quality improvement project (REC South East Norway, reference no. 2014/896).

      Results

      The sample included twelve women and four men. Most of them had a job, while some were students or economically inactive for health reasons. We identified four main themes that align with the study’s objective. The first theme concerns the stigma associated with the disease and the informants’ reluctance to talk about their disorder.

      The two subsequent themes concern information provided by parents to their children, while the last theme is associated with expectations of the healthcare professionals. Illustrative quotes from participants are put in quotation marks followed by the informant number. We have not specified the informant’s sex as there were few male participants and therefore a risk they could be identified.

      The stigma associated with the disease

      All informants were open about their CF disease with close adult relatives. Several informants reported that when they were teenagers, few people outside of the family knew about the disease, and as adults several of them provided limited information to friends and colleagues: ‘There’s a lot of stuff written in the media that purely focuses on being extremely unwell, and this makes it difficult for others to understand the wide variations in people’s symptoms’ (no. 2).

      They had no wish to be compared to those who were very unwell, because their condition would be considered more severe than it was. They perceived this to be stigmatising. Some said they have a pulmonary disease, but few of them used the word ‘CF’ or ‘cystic fibrosis’. One of them said: ‘It’s been my strategy not to say that much, yes, that’s been my coping mechanism’ (no. 15).

      Although they did not say so explicitly, there is reason to believe that this general reluctance to talk about the disease may have affected what they communicated to their own children. The informants were selective in terms of who they informed about the disease.

      Simple but challenging information to children below school age

      All the informants described their lives as normal, despite frequent hospital check-ups and regular use of intravenous antibiotics at home. Treatments such as inhalations, pulmonary physiotherapy, pancreatic enzymes and antibiotics were a natural part of their children’s everyday lives: ‘It’s not a condition that suddenly arrives, it’s been there all the time’ (no. 6).

      The children were given simple explanations if they raised any questions: ‘I need to take medicines because my lungs are not well’ (no. 6).

      Such explanations became part of everyday conversations between children and parents, mainly between the child and the parent with CF. In this study there was no difference between the nature of the information provided depending on whether it was the mother or father who had the disease. Some said they had explained the disease in a simple way so as not to frighten the children. But this could also be a way of taking control‘He talks a lot, and he doesn’t need all the information. So I want to have some control over what he gets to know’ (no. 1).

      If the children talked about their parent’s disease with other people, it was considered less of a stigma to have a pulmonary disease than CF. When the children asked ‘Is it dangerous? Can you die from it?’ (no. 14), it was difficult to answer because the parents were ill prepared for questions of this nature. Some of them chose to be honest with the child: ‘It is possible to die from this disease, which is why I need to take medicines to keep healthy’ (no. 14).

      Others reported that they had said: ‘It’s not that dangerous’ (no. 13). This would typically happen if the disease was in a stable phase. When they were older, some of these children had confronted their parents about having played down the disease. Other informants consciously limited the information about their disease in order to protect the child, often based on personal experiences: ‘The children have been shielded from the details, of course. That worked for me and my parents’ (no. 15). They had themselves been shielded from receiving information about their own disease when they were young, and they continued this tradition with their own children, with the best of intentions.

      The exchange of information between parents and children below school age took the form of parents responding to their children’s questions as part of their everyday conversations. The informants were unprepared for existential questions from young children.

      Inadequate information provided to young people

      As the children grew older, their need for more extensive and detailed knowledge would also grow. The informants rarely engaged with teenagers and young adults about the disease. This could be due to insufficient knowledge about their own disease or that they felt it was difficult to convey this information. One of the informants said: ‘It’s difficult to explain it to the children, I hardly understand it myself’ (no. 11).

      The informants had not been alert to their children’s need for more detailed information as they grew older. If the children did not raise any questions, the informants would forget or avoid providing further details as the children grew. Several believed that they had mentioned to the children that the name of their disorder was CF, but the disease was never referred to as CF in day-to-day life.

      Genetics is part of the curriculum in lower secondary school, and CF is an example of an inherited disease. Some of the children had been taught about CF at school, and one informant reported that her teenager had said: ‘People with CF die before adulthood, and they can’t have children. The teenager came home from school and wondered when I was going to die’ (no. 5).

      Most of the informants had been unaware that this age group are taught about genetics at school. It was difficult for the parents to adjust information to their children’s age and level of maturity.

      Expectations of the health service

      Among those in a stable condition and with a normalised daily life, most did not find it difficult to talk to their children. However, they felt it was more difficult to inform them about the seriousness of the disease and about the outlook for the future. All of them were confident that they would receive assistance if they asked for it. The parents were nevertheless unaware of the fact that healthcare personnel have a duty to ensure that children receive information about their parents’ disease. Explaining a deteriorating condition to the children was challenging. A couple of the informants who had found themselves in such situations had asked healthcare personnel for assistance in explaining the situation. One of them said: ‘I want him to know. But it’s difficult because I don’t want to frighten him’ (no. 7).

      After giving it some thought, several said that guidance would be good: ‘It would be nice to be able to discuss things with a nurse or someone else knowledgeable who has the right experience ’ (no. 7). Nevertheless, everyone felt that they themselves were best suited for this task: ‘I think it’s a good thing that you have a system. Then it’s for the parents to decide. I believe many parents dread talking to their children about this’ (no. 1).

      The informants did not expect healthcare personnel to give them support with providing simple information. They wanted to provide this type of information themselves.

      Discussion

      This study is among the first to investigate how parents with CF experience informing their children about the disease. The results demonstrate that the informants, all of them parents with CF, are selective in terms of who they tell about their disease. Young children received information when they asked questions in casual conversations with their parents.

      This information was not adjusted as the children grew older. The parents were unprepared for existential questions from young children. They did not know that healthcare personnel have a duty to ensure that children receive information about the disease.

      People with CF are selective in terms of who they tell about the disease

      The parents reported that they felt ambivalent about informing other people about the disease, and that it was difficult to talk to others about its complexity. They described it as challenging for healthy people to understand that the morbidity varies from person to person. It was difficult to explain the nature of the disease and how hard people with CF are working to prevent the disease from progressing. To the outside world, it may seem as if people with CF live normal lives (21).

      Earlier studies have also shown that people with CF are selective in terms of who they tell about their disease (21, 22). Situations that compel them to provide information about their disease can be tiered. The most demanding situations involve a fear of reactions and/or sanctions from the other person in response to the information they provide (22). This may potentially be the reason why some give their children incomplete information. Adults with CF may be lacking good knowledge about their own disease (23).

      Communication as a concept involves some sort of communion, sharing something or having a connection with somebody else (24). The parents informed their children about CF in that the treatment was part and parcel of the daily routine. For the youngest children, this may well suffice. Young children need to know what is happening here and now. Children below school age have less of an ability to imagine what might happen in the distant future, for example that the disease may develop, or that the parents might die (11).

      Good communication depends on intimacy, a good relationship and trust that the information brings something positive (24, 25). Our study describes the parents’ worry that the children may start to feel anxious if they are told about the parents’ disease. Older children and teenagers need to know about their parents’ outlook and the consequences of their disease. Inadequate knowledge about a parent’s disease may give rise to problems for older children and teenagers, who may come up with their own explanations (11), which are often worse than reality.

      Better information from parents will prepare children and young people for any talk about the disease at school, or when they come across things on the internet. The study shows that the parents perceived older children to have insufficient knowledge about the disease. Earlier studies based on interviews with both parents and children (11) have shown that young people knew more about the parents’ disease than the parents were aware of, but this knowledge would often have shortcomings or involve misunderstandings.

      Children raised existential questions for which the parents were unprepared

      Existential questions concern suffering, death, meaning, freedom and loneliness (26). The study by Jessup et al. (27) showed that CF patients who wanted children considered it an ethical problem that their offspring might have CF. For some, the solution was not to have children of their own. Informing their children about the disease can be a reminder of its seriousness (25, 28).

      Research in the field of cancer care shows that conversations about disease and death are difficult, both for patients and healthcare workers (11, 25, 28). When children choose not to ask about their parents’ disease, this can be seen as mutual protection. To protect the other party, parents withhold information while children withhold their worries (11, 29). This mutual protection can serve as a barrier to open dialogue within the family about emotional and existential themes.

      Healthcare personnel were not expected to provide information to children about their parents’ illness

      The informants were not aware that healthcare personnel have a duty to inform children about their parents’ illness. Parents who care for children must inform them of their own disease (8). The informants in this study felt that they were in the best position to inform their own children. Research also shows that parents are their children’s most important sources of information (11).

      Our study shows how difficult it is for parents to inform their children about the disease in a way that is suited to the child’s age and level of maturity. Providing simple information to young children was not felt to be problematic. However, it appeared to be difficult for the parents to tell their children about the serious nature of the disease, and about the outlook for the future. The parents said they expected to receive assistance if they asked for it. Research on MS has shown that symptoms of anxiety and depression in parents have a direct impact on children’s mental behaviour, irrespective of the severity of the disease (13).

      Other studies have shown that the children of chronically ill parents face a higher risk of behavioural problems (30). Good communication with the child and providing the child with information about the parent’s disease will probably reduce the child’s stress level (10). Hospital consultations constitute an arena where healthcare personnel can help parents to meet their children’s need for information. Information about the parents’ disease, and an open dialogue with the school, can prepare young people for school lessons in genetics (31). In our study, the parents with CF talked about older children who had lost their trust in their parents because they had been given inadequate information about the disease.

      Strengths and weaknesses of the study

      One of the study’s strengths was its qualitative design which allowed us to use the informants’ own experiences to shed light on the research questions. Information about sensitive and existential themes can be difficult to capture in a questionnaire. Whether the findings of this qualitative study are transferable to a wider population or to other chronic diseases is an important question. The generalisability is linked to the sample, but also to the question of relevance and how the findings can help shed light on a similar problem in a different context (21).

      There is a considerable need to safeguard under-age relatives, including in the primary health service. There are currently no guidelines in place (32), but the findings of our study may help raise awareness of the problem. There are few similar studies, but research on cancer and MS patients may also be relevant to CF. While our study did not focus on the parents’ life-restricting disorder towards the end of their life, there are new recommendations in this field (33).

      To bolster the validity of the study, we asked follow-up questions during the interviews in order to ensure that we had understood the informant correctly. The fact that the interviewer was a member of the therapeutic team may have posed a dilemma for the informants. However, earlier research has shown that familiarity with and trust in the interviewer can help with recruitment and lead to a more open dialogue (21). The fact that the children were not interviewed about their experiences was a weakness of this study.  

      Conclusion

      Parents with CF need to know more about their own disease to be able to give their children better information. Measures should be put in place to ensure that children have a level of knowledge about their parents’ disorder which is appropriate for their age and maturity. Parents must be made aware of the duty that healthcare personnel have, and of their children’s rights in this respect.

      The specialist health service must be more alert to their own responsibility to inform children about their parents’ disease and must seek to facilitate this in consultations with the parents. A safeguarding procedure should be drawn up for the children of chronically ill parents. Healthcare personnel need better competence in this field.

      We are grateful to the patients who took part in the study, and to the National Centre for Cystic Fibrosis (NSCF) for giving us the opportunity to carry out the project.

      The authors declare no conflicts of interest.

      Open access CC BY 4.0.

      Peer-reviewed article
      Publication type
      Publication Year
      2023
      Edition Year
      18
      Publication Number
      92358
      Page Number
      e-92358

      They are unprepared for existential questions from their children and are unaware of healthcare personnel’s duty to help children receive information about the disease.

      Article is Peer Reviewed
      1
      Innsendte kommentarer kvalitetssikres før publisering. Kvalitetssikringen skjer i vanlig arbeidstid.
      Research
      English
      Sammendrag

      Background: Healthcare personnel who treat parents with a serious health condition, such as cystic fibrosis (CF), must help ensure that the children receive information about the disease. However, the specialist health service provides few good procedures for giving structured information to under-age relatives.

      Objective: To obtain knowledge about parents with cystic fibrosis (CF) and their experiences of informing their children about the disease, as well as their expectations of healthcare personnel in this context.

      Method: The study has a qualitative descriptive design. Semi-structured interviews were conducted with sixteen cystic fibrosis patients. We carried out a thematic content analysis of the data material.

      Results: Patients with cystic fibrosis are selective in terms of who they tell about their disease. Young children received information through two-way communication in casual conversations between child and parent. The parents were unprepared for the children’s existential questions, and older children and teenagers had little knowledge about cystic fibrosis. The parents did not expect healthcare personnel to be able to assist them in providing their children with simple information. The study found that the informants needed more knowledge about their own disease so they can better inform their children.

      Conclusion: There is a need for parents to receive structured training in cystic fibrosis. The children must be taught about their parents’ disease, and the information provided must be adjusted to the child’s age and level of maturity. The specialist health service must be more alert to their responsibility to ensure that children receive information about their parents’ disease.

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      • Earlier studies have focused on how parents deal with having children with cystic fibrosis (CF), and how parents with CF need to balance their time between caring for the child and caring for themselves. However, there is little research available on how parents with CF inform their children about the disease.
      • In this qualitative study, registered nurses (RNs) investigated how parents with CF inform their children about the disease.
      • RNs who talk to parents about providing information to children need knowledge and experience of conversing about existential topics. Also, the parents need to trust the RN. The study shows that informing the children of chronically ill patients is a process that needs to start early and must take account of the children’s stages of development in order to ensure that they receive information that is suited to their age and level of maturity. Patients are entitled to detailed information about their own disease. Although CF is a rare disorder, the study will provide important information for anyone who works with seriously ill patients who have children.

      1.    Castellani C, Duff AJA, Bell SC, Heijerman HGM, Munck A, Ratjen F, et al. ECFS best practice guidelines: the 2018 revision. Journal of Cystic Fibrosis. 2018;17(2):153−78. DOI: 10.1016/j.jcf.2018.02.006

      2.    Carpenter DR, Narsavage GL. One breath at a time: living with cystic fibrosis. Journal of Pediatric Nursing. 2004;19(1):25−32. DOI: 10.1016/j.pedn.2003.09.004

      3.    Elborn JS. Cystic fibrosis. Lancet. 2016;388(10059):2519−31. DOI: 0.1016/S0140-6736(16)00576-6

      4.    Sawicki GS, Sellers DE, Robinson WM. Associations between illness perceptions and health-related quality of life in adults with cystic fibrosis. J Psychosom Res. 2011;70(2):161−7. DOI: 10.1016/j.jpsychores.2010.06.005

      5.    Badlan K. Young people living with cystic fibrosis: an insight into their subjective experience. Health Soc Care Community. 2006;14(3):264−70. DOI: 10.1111/j.1365-2524.2006.00619.x

      6.    Barker H, Moses J, O’Leary C. ‘I’ve got to prioritise’: being a parent with cystic fibrosis. Psychology, Health & Medicine. 2017;22(6):744−52. DOI: 10.1080/13548506.2016.1233345

      7.    Jessup M, Parkinson C. «All at sea»: the experience of living with cystic fibrosis. Qualitative Health Research. 2010;20(3):352−64. DOI: 10.1177/1049732309354277

      8.    Ot.prp. nr. 84 (2008−2009). Om lov om endringar i helsepersonelloven m.m. (oppfølging av born som pårørande). Oslo: Det kongelige helse- og omsorgsdepartement; 2009. Available at: https://www.regjeringen.no/no/dokumenter/otprp-nr-84-2008-2009-/id560342/sec (downloaded 16.05.2023).

      9.    Bluebond-Langner M, Lask B, Angst DB. Psychosocial aspects of cystic fibrosis. 1st ed. Boston: Hodder Education Publishers; 2001.

      10. Bluebond-Langner M. In the shadow of illness: parents and siblings of the chronically ill child. Princeton, New Jersey: Princeton University Press; 1996.

      11. Larsen BH, Nortvedt MW. Barns og ungdoms informasjonsbehov når mor eller far får kreft. Sykepleien Forskning. 2011;6(1):70−7. DOI: 10.4220/sykepleienf.2011.0068

      12. Razaz N, Joseph KS, Boyce WT, Guhn M, Forer B, Carruthers R, et al. Children of chronically ill parents: Relationship between parental multiple sclerosis and childhood developmental health. Multiple Sclerosis Journal. 2016;22(11):1452−62. DOI: 10.1177/1352458515621624

      13. Bogosian A, Hadwin J, Hankins M, Moss-Morris R. Parents' expressed emotion and mood, rather than their physical disability are associated with adolescent adjustment: a longitudinal study of families with a parent with multiple sclerosis. Clin Rehabil. 2016;30(3):303−11. DOI: 10.1177/0269215515580600

      14. Polit DF, Beck CT. Nursing research: generating and assessing evidence for nursing practice. 10th ed. Philadelphia, Pennsylvania: Wolters Kluwer; 2017. 

      15. Sandelowski M. Whatever happened to qualitative description? Res Nurs Health. 2000;23(4):334−40. DOI: 10.1002/1098-240X(200008)23:4<334::AID-NUR9>3.0.CO;2-G

      16. Kvale S, Brinkmann S. Det kvalitative forskningsintervju. 3rd ed. Oslo: Gyldendal Akademisk; 2015.

      17. Brinkmann S, Kvale S. InterViews: learning the craft of qualitative research interviewing. 3rd ed. Thousand Oaks, California: Sage; 2015.

      18. MacLean LM, Meyer M, Estable A. Improving accuracy of transcripts in qualitative research. Qualitative Health Research. 2004;14(1):113−23. DOI: 10.1177/1049732303259804

      19. Graneheim UH, Lundman B. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Education Today. 2004;24(2):105−12. DOI: 10.1016/j.nedt.2003.10.001

      20. Fontana A, Frey JH. The interview: from neutral stance to political involvement. I: The Sage handbook of qualitative research. 3rd ed. Thousand Oaks, California: Sage Publications; 2005. s. 695–727.

      21. Homme J, Sæteren B. Å leve med cystisk fibrose – et ensomt, livslangt arbeid. Nordisk sygeplejeforskning. 2014;4(1):15−27. DOI: 10.18261/ISSN1892-2686-2014-01-03

      22. Lowton K. Only when I cough? Adults' disclosure of cystic fibrosis. Qualitative Health Research. 2004;14(2):167−86. DOI: 10.1177/1049732303260675

      23. Sawicki GS, Sellers DE, McGuffie K, Robinson W. Adults with cystic fibrosis report important and unmet needs for disease information. Journal of Cystic Fibrosis. 2007;6(6):411−6. DOI: 10.1016/j.jcf.2007.03.004

      24. Eide H, Eide T. Kommunikasjon i relasjoner: personorientering, samhandling, etikk. 3rd ed. Oslo: Gyldendal Akademisk; 2017.

      25. Davidsen-Nielsen M, Leick N. Den nødvendige smerte: om tab, sorg og adskillelsesangst. 2nd ed. Copenhagen: Hans Reitzels forlag; 2003.

      26. Yalom ID. Eksistensiell psykoterapi. Oslo: Arneberg; 2011.

      27. Jessup M, Li A, Fulbrook P, Bell SC. The experience of men and women with cystic fibrosis who have become a parent: a qualitative study. J Clin Nurs. 2018;27(7−8):1702−12. DOI: 10.1111/jocn.14229

      28. Sæteren B. Kampen for livet i vemodets slør: å leve i spenningsfeltet mellom livets mulighet og dødens nødvendighet [doktoravhandling]. Turku: Åbo Akademi, Samhälls- och vårdvetenskapliga fakulteten; 2006.

      29. Zhang AY, Siminoff LA. Silence and cancer: Why do families and patients fail to communicate? Health Communication. 2003;15(4):415−29. DOI: 10.1207/S15327027HC1504_03

      30. Sieh DS, Meijer AM, Oort FJ, Visser-Meily JM, Van der Leij DA. Problem behavior in children of chronically ill parents: a meta-analysis. Clinical Child and Family Psychology Review. 2010;13(4):384−97. DOI: 10.1007/s10567-010-0074-z

      31. Djup HW. Skolens betydning når barn er pårørende. Skolelederen. 2021;33(8):16−9. Available at: https://www.skolelederforbundet.no/wp-content/uploads/2021/12/skolelederen-08_2021_web.pdf (downloaded 16.05.2023).

      32. Steffenak AKM, Anderzén-Carlsson A, Opheim E, Sandsdalen T. Community-based support for children who are next-of-kin for a parent experiencing illness or disability – a scoping review. BMC Health Services Research. 2021;21(1):1250. DOI: 10.1186/s12913-021-07270-x

      33. Marshall S, Fearnley R, Bristowe K, Harding R. ‘It’s not just all about the fancy words and the adults’: Recommendations for practice from a qualitative interview study with children and young people with a parent with a life-limiting illness. Palliative Medicine. 2022;36(8):1263−72. DOI: 10.1177/02692163221105564

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    • Palliative care during the end-of-life period in an intensive care unit - a quality assurance project

      Bildet viser en syk pasient på en intensivavdeling. I forgrunnen ses et skjema og hendene til en sykepleier som skriver på skjemaet

      Introduction

      The purpose of intensive care treatment is to maintain vital organ function in critically ill patients. Even though patients receive advanced intensive medical treatment, there are many who die (1). In 2021, 10.2% of patients in Norwegian intensive care units (ICUs) died, and this figure has changed little over the past five years (2).

      Palliative care for patients during the end-of-life period in ICU is therefore a relevant area of competence. To ensure that patients’ needs for symptom management are met, ICU nurses must have knowledge and competence within palliative care (3).

      International literature shows that ICU patients during the end-of-life period can suffer from many distressing symptoms, of which pain, anxiety and dyspnoea are the most common (1, 4, 5). However, symptom management is often inadequate (6). Implementation of nursing care plans and protocols for palliative care in ICU results in the increased use of pain relief and sedative medications and therefore a lower symptom burden (1, 7). Nevertheless, there is a lack of guidelines and nursing care plans for palliative care in ICU, and there is considerable variation as to whether these are used in clinical practice (5, 8).

      In Norway, there are no national guidelines for palliative care in ICUs. However, the Norwegian Directorate of Health has issued national clinical guidelines for palliative care during the end-of-life period. The clinical guidelines are intended to help ensure that patients receive sound professional and evidence-based palliative care (9).

      The national clinical guidelines indicate that different measures for managing, for example, pain, dyspnoea, anxiety and agitation should always be assessed. Suggested measures and the anticipated need of symptom relief medications should be documented in a nursing care plan, and regular assessments of the patient’s symptom burden must be carried out. In addition, communication with patients and their families must be ensured (9).

      The national clinical guidelines provide general advice, and the Norwegian regional health authorities are responsible for ensuring that the guidelines are followed (9). The health service has a duty to carry out quality improvement work. It is necessary to examine whether clinical practice is in line with relevant recommendations (10, 11).

      The objective of this study was to describe documented practice for pain assessment, medication-based symptom management, nursing care plans and communication with patients and their families during the end-of-life period in ICUs. We also wanted to investigate whether the practice is in accordance with the national clinical guidelines for palliative care during the end-of-life period. We used the following research question as a starting point:

      ‘What is the current documented practice of palliative care for patients during the end-of-life period in an ICU?’

      Method

      Design

      The study’s design is a retrospective observational study (12) with a review of patient medical records in a time line from the withdrawal of life-sustaining interventions until the patient’s death. The study was also a quality assurance project at an ICU in which the objective was to summarise current documented practice. The results were intended to evaluate the quality of current practice (13).

      Sample

      The sample consisted of patients over the age of 18 who died in the main ICU at St. Olav’s University Hospital in 2021, regardless of the cause of admission. Life-sustaining interventions were withdrawn or a decision not to increase the level of treatment was made before death. Patients who were organ donors and patients who died during operations or despite active efforts to resuscitate them, such as cardiopulmonary resuscitation in the case of cardiac arrest, were excluded from the study.

      Data collection method

      The data were collected from electronic anaesthesia and ICU records and electronic patient medical records. The variables that were used in data collection were based on the Norwegian Directorate of Health’s national clinical guidelines for palliative care during the end-of-life period (9). The variables were as follows: ‘age’, ‘gender’, ‘cause of admission’, ‘number of days between admission and death’, ‘time from withdrawal of interventions until death’, ‘consciousness at time of withdrawal of interventions’ and ‘respiratory support at time of withdrawal of interventions’.

      In relation to pain assessment, we investigated whether there was documented use of the assessment tools Numeric Rating Scale 0–10 (NRS) or Critical Care Pain Observation Tool (CPOT) (14). Local routines for pain assessment in the ICU indicate that if the patient is responsive, NRS is used. For patients who are unable to communicate, CPOT is registered regularly once per shift as well as when required, for example, when repositioning the patient.

      We examined whether an individual nursing care plan had been documented. A nursing care plan contains measures for symptom management and a plan for the anticipated need for medication that might arise (9).

      Furthermore, we examined which symptom relief medications the patient received for pain, gurgling in the lower respiratory tract, anxiety and agitation, as well as doses of medication before and after the withdrawal of interventions. The withdrawal of interventions is defined as the termination of life-sustaining treatment. The infusion speed of medication was registered 15 minutes prior to the withdrawal of interventions and immediately before the documented time of death.

      In order to assess communication, we examined whether the provision of information regarding the course of the illness and prognosis to patients who were conscious had been documented. We also examined whether a conversation with the patient’s family had been documented by the ICU nurse and doctor, and whether the patient’s family was present at the time of withdrawal of interventions.

      There were no recorded assessments of anxiety and agitation. The Richmond Agitation-Sedation Scale (RASS) is a tool for measuring the level of sedation, in which anxiety and agitation are factors (15). In the St Olav’s University Hospital ICU, this is used solely to measure the depth of sedation.

      The patients were categorised in four groups, based on their documented level of consciousness: 1) sedated patients, 2) comatose non-sedated patients, 3) patients with a decreased level of consciousness, and 4) conscious patients.

      Before commencing data collection, we pilot tested variables (12) on four patients. A data review was conducted by the first author in February–March 2022. Cases in which there was doubt concerning the categorisation of data and the extent to which treatment followed the guidelines were discussed individually with the second author.

      Data analysis

      We carried out descriptive analyses using the analysis software Statistical Package for the Social Sciences (SPSS), version 27 (16). Descriptive analysis is used to describe and summarise the data. Categoric variables are presented as absolute numbers (n) and percentages (%).

      Continuous variables are presented with central tendencies and dispersion. Normally distributed data are presented as averages and standard deviations (SD), and non-normally distributed data with median and interquartile range (IQR) (12).

      Ethical considerations

      This project was a retrospective study and did not alter or affect patient treatment. The project was an internal quality assurance project that was outside the mandate of the Regional Committee for Medical and Health Research Ethics (REK), and did not come under the substantive scope of the Health Research Act, see sections 2 and 4.

      The project was carried out with support from hospital management in accordance with the requirements for quality assurance in the Health Personnel Act, see section 26 (17). The head of the project filled in a self-assessment form in conjunction with the Data Protection Impact Assessment (DPIA). The hospital’s research committee assessed and approved the project in line with the hospital’s routines for quality assurance projects and the protection of personal data. We followed the hospital’s routines for safe storage in a dedicated file area.

      Results

      Description of sample

      A total of 88 patients died. Of those, we excluded eleven patients who were organ donors and eight patients who died during operations or after active efforts to resuscitate them. We analysed the medical records of 69 patients. The majority of the patients were men (73.9%), and the most frequent causes of admission were respiratory failure (23.2%) and circulatory failure (23.2%) (Table 1).

      As shown in Table 1, the median time from withdrawal of interventions until death was 12 minutes and the number of days between admission and death was 2.9 (median). Most of the patients were over 60 years of age (79.7%) and only four of the patients were under the age of 39 (5.8%). A majority of the patients were sedated (68.1%).

      Table 1. Description of sample (n = 69)

      Nursing care plans and symptom assessment

      There was a written nursing care plan for the withdrawal of life-sustaining interventions for 13% of the patients (n = 69). Pain rated from 0–10 using the self-reporting assessment tool NRS was not documented in the case of the four conscious patients.

      Pain assessment using CPOT for patients with a reduced ability to communicate was documented in 16.7% of the patients who had a decreased level of consciousness, in 58.3% of the comatose patients and in 44.7% of the sedated patients.

      The use of CPOT as required was not documented in relation to any of the patients. Analgesics were administered to patients without documented pain assessment as frequently as to patients with documented pain assessment (Table 2).

      Table 2. NRS or CPOT related to level of consciousness and correspondence between documented NRS or CPOT and analgesics

      Symptom relief medications

      None of the conscious patients received a continual infusion of symptom relief medications, but three of the four conscious patients received bolus doses of opioids (Table 3).

      As shown in Table 3, one of the patients who had a decreased level of consciousness was given opioids, one was given paracetamol and one patient was given diazepam after the withdrawal of interventions. None of the comatose patients received continual infusions with symptom relief medications (Table 3).

      Table 3 shows that sedated patients (n = 47) received an infusion of opioids and/or sedatives. The dose before and after the withdrawal of life-sustaining interventions was approximately the same, except in the case of one patient who only received remifentanil and another who received an infusion of morphine in addition to other analgesics. Roughly a quarter and a tenth of the sedated patients were given bolus doses of analgesics and sedatives, respectively, after the withdrawal of life-sustaining interventions.

      Table 3. Use of symptom relief medications

      Communication with patients and their families

      No conversations with the conscious patients were documented by nurses or doctors. In relation to all of the patients, conversations with their families were documented by doctors in 94.2% of cases and by ICU nurses in 65.2% of cases (Figure 1). The majority of patients had family members present when interventions were withdrawn (74%).

      Figure 1. Communication with the families of all patients, and communication with conscious patients

      Discussion

      The study showed that there was inadequate documentation of pain assessment and nursing care plans. For conscious ICU patients there was, in addition, inadequate documentation of information provided when life-sustaining interventions were withdrawn.

      Pain assessment

      In this study, pain assessment was not documented for any of the conscious patients and only for about half of the unconscious patients. In the national clinical guidelines (9), regular observation of the patient’s clinical condition is recommended to achieve good symptom management.

      Moreover, the local guidelines for pain assessment in the ICU stipulate that patients are to be assessed using NRS or CPOT once per shift and otherwise as required. The results are consistent with the findings from other studies (18, 19), which show that a low percentage of ICU patients have documented pain assessment.

      The findings are surprising since carrying out systematic symptom assessments using validated tools is a prerequisite for good quality management of distressing symptoms in dying patients, for both conscious and sedated patients (14, 20). This study did not examine the reasons why pain assessment was poorly documented. One possible reason may be that the ICU nurse had asked the patient without documenting the response, or that the ICU nurse had perceived the patient as being so deeply sedated or comatose that they thought it was unnecessary to assess them using CPOT.

      The results show, however, that analgesics were administered to patients without documented pain assessment as frequently as to patients with documented pain assessment. Regardless, ICU nurses should document the assessments they make (17), and the possibility cannot be ruled out that patients have experienced pain that has been overlooked due to a lack of systematic assessment and documentation.

      Nursing care plans

      In our study, only 13% of the patients had a documented nursing care plan. The national clinical guidelines stipulate that a nursing care plan for the withdrawal of life-sustaining interventions as well as anticipated needs for medication should be documented in patients’ medical records. Earlier studies (21, 22) have shown that ICU nurses prefer a written nursing care plan in order to provide the best possible end-of-life care for patients.

      One study (23) found that nurses regarded a nursing care plan as a useful tool. Another study (24) found that a lack of clear guidelines for the withdrawal of life-sustaining interventions resulted in ICU nurses being uncertain as to what were the correct interventions after withdrawal. One possible problem with using nursing care plans was that standardised plans were a barrier to individualised patient care.

      A possible explanation as to why only nine of the patients had a documented nursing care plan was that ICU nurses can notify doctors when symptoms arise, and interventions and medications can then be administered on an ongoing basis. This is possible in ICUs where a doctor is present at all times. It is also likely that the doctor and the ICU nurse in many cases discussed a plan without registering this in the patient’s medical records. In addition, the necessity of a nursing care plan is debatable when the median time from the withdrawal of interventions until death is 12 minutes.

      A Dutch observational study (27), in which the median time from withdrawal of interventions until death was 20 minutes, concluded however that a new guideline with advice on prevention of distressing symptoms was effective, and that most of the patients had a low symptom burden. If this is the case, nursing care plans will be of use even though there is only a short period of time between the withdrawal of interventions and death.

      Medication-based management of distressing symptoms

      The results of our study showed that there was no increase in medication doses before and after withdrawal of interventions in sedated patients, apart from two patients who were given morphine and remifentanil respectively in addition. This finding contrasts with several other studies that found that doses of opioids were increased when life-sustaining interventions for ICU patients were withdrawn (27−29).

      There are several possible explanations for this variation. A guideline or individual nursing plan for the withdrawal of life-sustaining interventions can make it easier for ICU nurses to increase doses of analgesics and sedatives. This correlates with the findings of the Dutch observational study (27), which found that when a new national protocol for end-of-life care was introduced, the use of midazolam, propofol and opioids increased significantly.

      Furthermore, the patients in our study may have been more heavily sedated to begin with than those in the other studies, such that it was not necessary to increase the medication dose. We did not collect data on depth of sedation, so we cannot compare the level of sedation in the course of care. In addition, the time from withdrawal of interventions until death was 12 minutes in our study.

      Experience suggests that with such short time intervals, the choice is often made to administer bolus doses based on need, which a number of the patients in our study received. When the median time is only 12 minutes, it may indicate that the patients’ conditions are so critical that they are already in the advanced stages of dying when interventions are withdrawn and do not, therefore, have a greater need for palliative medications. However, in the studies from the Netherlands (27) and the United States (28), in which the median time interval from withdrawal of interventions until death was 20 minutes and 42 minutes respectively, there was a substantial increase in medication doses.

      Less than half of the comatose patients were given analgesics, and a sixth received medications for anxiety and agitation. This finding corresponds to the US study (28), which showed that comatose patients were given less morphine than other patients. It may be that analgesics are not administered to comatose patients who do not respond to pain stimuli because it is assumed that they do not feel pain.

      The experience of pain is subjective (30), and when there is no reaction to pain stimuli it is likely that there is little need for analgesics. Therefore, it is not surprising that comatose patients are given lower doses than other patients. For neurocritically ill patients with a minimum level of consciousness who may experience pain that they are unable to communicate, it is, on the other hand, important that ICU nurses observe signs of discomfort and administer sufficient levels of analgesics (30, 31).

      An interesting finding was that patients with a decreased level of consciousness and conscious patients only received bolus doses of symptom relief medications, and the doses administered were low. Only one patient received non-opioid analgesics. It is therefore difficult to compare with other studies in which patients received continual infusions of medication (27, 28).

      It may be assumed that in the case of extreme deterioration of conscious patients, it was more practical to administer analgesics based on need. In addition, there was a lack of documented pain assessment using NRS and CPOT, which makes it difficult to know the actual symptom burden and need for palliative medications. Experience indicates that some ICU nurses and doctors can be reluctant to give opioids to dying patients for fear of adverse effects such as respiratory depression and hypotension. There is little evidence to support this practice, since a number of studies show that the increased use of opioids can extend the time from withdrawal of interventions until death (27−29).

      Communication with patients and their families

      A total of 94.2% of patients’ families had had conversations with the doctor, which is a high level compared with a study from the United States (32), which found that interdisciplinary meetings with patients’ families were documented in less than 20% of cases. Conversations with patients’ families is important, since the time between critical illness and death is short in an ICU.

      One study (33) showed that clear and honest communication was a factor that affected the satisfaction of patients’ families when the patient was in the end-of-life period, and it helped to prevent post-traumatic stress among family members. The national clinical guidelines (9) stipulate that healthcare personnel are to ensure that the needs of patients and their families for conversations and information during the end-of-life period are met, but our study only examined whether conversations were documented. We did not examine the content of the information that was provided, nor whether patients’ families felt that they had received sufficient information.

      No conversations in which patients were given information about the possible course of illness and expected prognosis were documented by ICU nurses or doctors with the four conscious patients. This is an interesting finding because patients have a right to information regarding the condition of their health (34).

      Our study only examined the documented practice. It is to be hoped that conversations were carried out with patients without this being documented in their medical records. Nevertheless, it is unfortunate that there was no documentation of the information provided to patients, or in relation to whether the situation made it impossible to provide information.

      The patient must be given continuous updates on their condition and, if possible, participate in decision-making processes in conjunction with the withdrawal of life-sustaining interventions (9). If not, this may result in a failure to clarify the patient’s wishes, such as the need for religious rituals or ideas about how the withdrawal should be carried out, or that the patient lacks assurance that pain and discomfort will be relieved.

      In our study, only four of the patients were categorised as conscious, so we are unable to conclude this with any certainty. Nevertheless, the finding indicates that the practice of providing information to conscious patients who are critically ill in ICUs must be studied further.

      Strengths and weaknesses of the study

      One weakness of the study is that it was retrospective and only examined documented practices, which means that assessments and interventions may have been carried out that were not documented. Another weakness was that the patients who did not die in the ICU after the withdrawal of interventions but were transferred to a ward were not included. Information about what palliative care they received prior to being transferred would have been relevant to the study.

      It is also a weakness that the sample only came from one ICU, which limits generalisation. The results do not necessarily represent other ICUs, which may have their own internal guidelines and routines.

      A significant strength of the retrospective design is that we avoided bias, in that none of the nurses or doctors in the ICU knew that the data were going to be used for this purpose. Therefore, they could not influence the results (12).

      Conclusion

      The study shows that there was inadequate documentation of pain assessment, nursing care plans and information provided to dying ICU patients, if documented practice is to be in accordance with the national clinical guidelines for palliative care during the end-of-life period.

      A particularly important finding was that there was no documentation of information to any of the conscious patients. The findings in the study highlight that it is important to be aware of palliative care for ICU patients, to ensure good routines for pain assessment and for planning end-of-life symptom management.

      The authors declared no conflicts of interest.

      Open access CC BY 4.0.

      Peer-reviewed article
      Publication type
      Publication Year
      2023
      Edition Year
      18
      Publication Number
      92261
      Page Number
      e-92261

      Documentation of pain assessment, nursing care plans and information did not follow national clinical guidelines.

      Article is Peer Reviewed
      1
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      Research
      English
      Sammendrag

      Background: The Norwegian Directorate of Health has issued national clinical guidelines for palliative care during the end-of-life period. Many dying patients in intensive care have a high symptom burden. To ensure that palliative care is of high quality, it is necessary to investigate whether clinical practice is in line with the applicable recommendations.

      Objective: The objective was to examine documented practice of palliative care during the end-of-life period for patients in an intensive care unit. We also wanted to investigate whether practice was in accordance with the national clinical guidelines.

      Method: The study is a quality assurance project with a retrospective review of patient medical records. We carried out descriptive, quantitative analyses. The sample consisted of adult patients over the age of 18 who died in an intensive care unit at a university hospital in Norway in 2021.

      Results: A total of 88 patients died. Of these, 69 were included in the study. The median time between the withdrawal of life-sustaining interventions and death was twelve minutes. There was a documented nursing care plan for the withdrawal of interventions for 13% of the patients. There was no documented pain score for the patients who were conscious. Use of the Critical Care Pain Observation Tool (CPOT) was documented for 16.7% of the patients who had a decreased level of consciousness, 58.3% of the comatose patients and 44.7% of the sedated patients. None of the patients who were conscious or comatose received a continual infusion of symptom relief medication, only bolus doses. Sedated patients received an infusion of opioids and/or sedatives. There were no documented conversations with the conscious patients. Conversations with patients’ families were documented by 94.2% of the doctors and 65.2% of the intensive care unit nurses.

      Conclusion: The study shows that documentation of pain assessment and nursing care plans for dying patients in intensive care was inadequate. Documentation of information provided to patients was also inadequate.

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      • The study provides increased insight into documented practices in palliative care in an ICU.
      • The study shows that documentation of pain assessment and nursing care plans for dying ICU patients was inadequate. Documentation of information provided to patients was also inadequate.
      • The documented practice was not in accordance with national clinical guidelines for palliative care during the end-of-life period in all areas.

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      2.         Buanes EA, Kvåle R, Helland KF, Barrat-Due A. Norsk intensiv- og pandemiregister. Årsrapport for 2021 med plan for forbetringstiltak. Bergen: Helse Bergen, Norsk intensivregister; 2022. Available at: https://helse-bergen.no/seksjon/intensivregister/Documents/Årsrapporter i NIR/NIPaR Årsrapport 2021.pdf (downloaded 05.09.2022).

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      5.         Puntillo K, Nelson JE, Weissman D, Curtis R, Weiss S, Frontera J, et al. Palliative care in the ICU: relief of pain, dyspnea, and thirst – a report from the IPAL-ICU Advisory Board. Intensive Care Med. 2014;40(2):235–48. DOI: 10.1007/s00134-013-3153-z

      6.         Wilkie DJ, Ezenwa MO. Pain and symptom management in palliative care and at end of life. Nurs Outlook. 2012;60(6):357–64. DOI: 10.1016/j.outlook.2012.08.002

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      8.         Alshehri HH, Olausson S, Öhlén J, Wolf A. Factors influencing the integration of a palliative approach in intensive care units: a systematic mixed-methods review. BMC Palliat Care. 2020;19(1):1–18. DOI: 10.1186/s12904-020-00616-y

      9.         Helsedirektoratet. Nasjonale faglige råd for lindrende behandling i livets sluttfase. Oslo: Helsedirektoratet; 2018. Available at: https://www.helsedirektoratet.no/faglige-rad/lindrende-behandling-i-livets-sluttfase (downloaded 09.08.2021).

      10.       Lov 2. juli 1999 nr. 61 om spesialisthelsetjenesten (spesialisthelsetjenesteloven). Available at: https://lovdata.no/dokument/NL/lov/1999-07-02-61/KAPITTEL_2#§2-1a. (downloaded 05.06.2022).

      11.       NOU 2017: 16. På liv og død – palliasjon til alvorlig syke og døende. Oslo: Helse- og omsorgsdepartementet; 2017. Available at: https://www.regjeringen.no/contentassets/995cf4e2d4594094b48551eb381c533e/nou-2017-16-pa-liv-og-dod.pdf (downloaded 28.03.2022).

      12.       Polit DF, Beck CT. Nursing research. Generating and assessing evidence for nursing practice. 11th ed. Philadelphia, Pennsylvania: Wolters Kluwer; 2021.

      13.       Helsebiblioteket. Evaluere praksis. Oslo: Helsebiblioteket; 2021. Available at: https://www.helsebiblioteket.no/kunnskapsbasert-praksis/evaluere-praksis (downloaded 26.11.2021).

      14.       Keane KM. Validity and reliability of the Critical Care Pain Observation Tool: a replication study. Pain Manag Nurs. 2013;14(4):e216–25. DOI: 10.1016/j.pmn.2012.01.002

      15.       Ely EW, Truman B, Shintani A, Thomason JWW, Wheeler AP, Gordon S, et al. Monitoring sedation status over time in ICU patients reliability and validity of the Richmond Agitation-Sedation Scale (RASS). JAMA. 2003;289(22):2983–91. DOI: 10.1001/jama.289.22.2983

      16.       IBM. SPSS Statistics for Windows, version 27. New York: IBM; n.d.

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      18.       Wysham NG, Hochman MJ, Wolf SP, Cox CE, Kamal AH. Performance of consultative palliative care model in achieving quality metrics in the ICU. J Pain Symptom Manage. 2016;52(6):873–77. DOI: 10.1016/j.jpainsymman.2016.05.026

      19.       Burry LD, Williamson DR, Perreault MM, Rose L, Cook DJ, Ferguson ND, et al. Analgesic, sedative, antipsychotic, and neuromuscular blocker use in Canadian intensive care units: a prospective, multicentre, observational study. Can J Anesth. 2014;61(7):619–30. DOI: 10.1007/s12630-014-0174-1

      20.       Mularski RA, Puntillo K, Varkey B, Erstad BL, Grap MJ, Gilbert HC, et al. Pain management within the palliative and end-of-life care experience in the ICU. Chest. 2009;135(5):1360–69. DOI: 10.1378/chest.08-2328

      21.       Ong KK, Ting KC, Chow YL. The trajectory of experience of critical care nurses in providing end-of-life care: a qualitative descriptive study. J Clin Nurs. 2018;27(1–2):257–68. DOI: 10.1111/jocn.13882

      22.       Hansen L, Goodell TT, DeHaven J, Smith M. Nurses’ perceptions of end-of-life care after multiple interventions for improvement. Am J Crit Care. 2009;18(3):263–71. DOI: 10.4037/ajcc2009727

      23.       Brooks LA, Manias E, Nicholson P. Communication and decision-making about end-of-life care in the intensive care unit. Am J Crit Care. 2017;26(4):336–41. DOI: 10.4037/ajcc2017774

      24.       Efstathiou N, Walker W. Intensive care nurses’ experiences of providing end-of-life care after treatment withdrawal: a qualitative study. J Clin Nurs. 2014;23(21–22):3188–96. DOI: 10.1111/jocn.12565

      25.       Luckett A. End-of-life care guidelines and care plans in the intensive care unit. Br J Nurs. 2017;26(5):287–93. DOI: 10.12968/bjon.2017.26.5.287

      26.       Radcliffe C, Hewison A. Use of a supportive care pathway for end-of-life care in an intensive care unit: a qualitative study. Int J Palliat Nurs. 2015;21(12):608–15. DOI: 10.12968/ijpn.2015.21.12.608

      27.       Epker JL, Bakker J, Lingsma HF, Kompanje EJO. An observational study on a protocol for withdrawal of life-sustaining measures on two non-academic Intensive Care Units in the Netherlands: Few signs of distress, no suffering? J Pain Symptom Manage. 2015;50(5):676–84. DOI: 10.1016/j.jpainsymman.2015.05.017

      28.       Mazer MA, Alligood CM, Wu Q. The infusion of opioids during terminal withdrawal of mechanical ventilation in the medical intensive care unit. J Pain Symptom Manage. 2011;42(1):44–51. DOI: 10.1016/j.jpainsymman.2010.10.256

      29.       Laserna A, Durán-Crane A, López-Olivo MA, Cuenca JA, Fowler C, Díaz DP, et al. Pain management during the withholding and withdrawal of life support in critically ill patients at the end-of-life: a systematic review and meta-analysis. Int Care Med. 2020;46(9):1671–82. DOI: 10.1007/s00134-020-06139-7

      30.       Schnakers C, Chatelle C, Majerus S, Gosseries O, De Val M, Laureys S. Assessment and detection of pain in noncommunicative severely brain-injured patients. Expert Rev Neurother. 2010;10(11):1725–31. DOI: 10.1586/ern.10.148

      31.       Frontera JA, Curtis JR, Nelson JE, Campbell M, Gabriel M, Hays RM, et al. Integrating palliative care into the care of neurocritically ill patients: a report from the IPAL-ICU (improving palliative care in the intensive care unit) project advisory board and the center to advance palliative care. Crit Care Med. 2015;43(9):1964–77. DOI: 10.1097/CCM.0000000000001131

      32.       Penrod JD, Pronovost PJ, Livote EE, Puntillo KA, Walker AS, Wallenstein S, et al. Meeting standards of high-quality intensive care unit palliative care: clinical performance and predictors. Crit Care Med. 2012;40(4):1105–12. DOI: 10.1097/CCM.0b013e3182374a50

      33.       Jensen HI, Halvorsen K, Jerpseth H, Fridh I, Lind R. Practice recommendations for end-of-life care in the Intensive Care Unit. Crit Care Nurse. 2020;40(3):14–22. DOI: 10.4037/ccn2020834

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    • Health literacy in patient and family education – a thematic analysis

      Bildet viser en sykepleier som forklarer noe til en pasient i senga og pasientens pårørende som står rundt

      Introduction

      Health literacy is considered a resource to help individuals make appropriate health decisions and manage their own health. In brief, health literacy concerns the individual’s capacity to access, understand, appraise and use health information and services in order to promote and maintain good health and wellbeing (1).

      Nutbeam (2) outlines three types of health literacy: 1) functional health literacy, which involves reading and writing skills and a capacity to obtain, understand and use factual information about health, 2) interactive health literacy, which involves the capacity to obtain and understand health information and being able to play an active part in conversations with health professionals, and 3) critical health literacy, which involves the ability to critically appraise health information and being familiar with how different health determinants impact on health (2).

      Lower health literacy is associated with poorer health, higher morbidity and mortality as well as poorer compliance with recommended health advice (3, 4). If health professionals fail to take account of people’s different health literacy, this may affect patient safety. Studies also show that there is an association between low health literacy and low socioeconomic status (4, 5). Additionally, health literacy can be a challenge for certain groups of immigrants (6, 7).

      In order to address the challenges associated with health literacy, registered nurses (RNs) and other health professionals need to be familiar with the concept and the potential implications of low health literacy for patients and their family. Health professionals should be able to identify health literacy levels, be skilled in communication techniques, and be able to treat people with different levels of health literacy with dignity and respect (8).

      Health professionals and health services that are aware of and make it easier for people to navigate, understand and use health information and services are referred to as being health literacy friendly (organisational health literacy) (9, p. 1). Health literacy friendly organisations have strategies and systems in place to cater for the population’s different health literacy levels. They are also mindful of health professionals’ communication skills, and they facilitate skills enhancement.

      Patient and family education is one of the four main statutory tasks of the specialist health service (10). The way that health professionals communicate with patients and family members will significantly affect the improvement of their health literacy and their prospects of managing their own situations. Health literacy awareness is therefore key to patient and family education (PFE). PFE deals with targeted, adaptive and evidence-based learning activities that foster involvement and promote health (11). The education can be provided verbally, in writing, digitally, individually or in a group.

      National guidelines highlight the fact that PFE is important in strengthening health literacy (12). The strategy to increase the population’s health literacy (12) points out that health literacy is key to providing a patient-focused health service where patients are actively involved with the medical assistance offered. Strengthening health literacy and involvement is also highlighted as a separate priority area in the recently adopted ‘Regional development plan for South-Eastern Norway Regional Health Authority 2040’ (13).

      Despite increasing national and regional awareness of health literacy, we have observed varying levels of comprehension of the concept among RNs and other health professionals. We have also experienced that health professionals are uncertain how to follow up on the need for health literacy among people with various health challenges.

      The specialist service for patient and family education that is run by South-Eastern Norway Regional Health Authority seeks discussion to clarify the concept of health literacy within PFE, the objective being to come to a shared understanding of health literacy implications in the field of practice. This need is supported by international research, which shows a shortage of health literacy knowledge and skills among health professionals (14, 15). Additionally, research shows that few health professionals are skilled in identifying people with low health literacy (15), and that there is a tendency to overestimate the patients’ health literacy (16).

      There is a need for more knowledge about health professionals’ reflections on health literacy and how PFE should be adapted to the individual’s health literacy. Moreover, there is a shortage of literature that deals with health professionals’ own reflections on the importance of health literacy in PFE. Such knowledge may increase the level of understanding of the significance of health literacy in PFE and of what aspects should be emphasised as the field develops further.

      The objective of the study

      The objective of the study was to describe how health professionals and managers reflect on the significance of health literacy in patient and family education.

      Method

      The study has a descriptive qualitative design. Work on the article was carried out in compliance with the Standards for Reporting Qualitative Research (SRQR) (17).

      Data collection

      Data were collected during the regional conference on patient and family education held by the South-Eastern Norway Regional Health Authority in December 2021. The conference was attended by a total of 54 health professionals from a range of disciplines (including RNs, physiotherapists, occupational therapists and social workers) as well managers of both sexes and with a dispersed age distribution. They represented eight of eleven health trusts in south-eastern Norway.

      The participants had special responsibility for PFE in the specialist health service and came from disciplines relating to acute as well as chronic health challenges within the fields of acute and long-term somatic diseases, substance addiction and mental health. Service user representatives were also in attendance. We chose to use the ‘world café’ engagement process as a tool to obtain and examine the participants’ reflections on the significance of health literacy in the PFE field of practice.

      The world café can be explained as a ‘circulating’ focus group, where participants successively discuss a number of research questions in relatively small groups. By rotating between tables that focus on different research questions, it is possible to build on other people’s ideas, thereby securing access to richer data (18, 19). The tool is suited to promoting interaction and dialogue and can be useful in drawing out reflections and experiences from larger groups (20). For this reason, the study can be related to a constructivist approach.

      All conference attendees were invited to take part in the world café. Participants received a short briefing on the various meanings of the ‘health literacy’ concept before the world café event. We then provided information about the world café methodology.

      The world café involved five tables. Each table was given a specific question for discussion:

      1. What impact can a person’s health literacy have on patient safety?
      2. How can health professionals facilitate PFE that takes account of different levels of health literacy among people from a minority background?
      3. How can health professionals take account of people’s health literacy in digital PFE?
      4. How can health professionals take account of people’s health literacy in health communication?
      5. How can health professionals take account of people’s health literacy in shared decision-making processes?

      All participants were encouraged to take part at three different tables, with each session lasting 15 minutes. Each table had a table host who had received guidance in advance, both verbally and in writing, about expectations of the role and how the world café event would be conducted.

      The table hosts had a facilitating role and were charged with exploring the reflections of all participants without actively participating and sharing their own opinions. Every time participants changed tables, the facilitators gave a short summary of what had emerged in the previous round, and the discussion continued on this basis. There were approximately ten participants at each table.

      During the discussions, participants wrote down keywords and statements on Post-it notes that were stuck to the table cloth. If there was uncertainty about the meaning of a note, the table host would ask the participants to clarify. The data for this study thus consist of statements and keywords that were written down on Post-it-notes during discussion of each of the five questions. A total of 369 Post-it notes were submitted from the five tables.

      Analysis

      We analysed the participants’ experiences and reflections as written down on the Post-it-notes by conducting a thematic analysis, inspired by Braun and Clarke (21). Thematic analysis involves identifying, analysing and reporting patterns – themes – that occur in the data material.

      We commenced the analysis by acquiring an overview of the data in order to familiarise ourselves with the material and form an impression of the participants’ reflections. We then proceeded to generate codes for the keywords and statements.

      While generating the codes we found that certain phrases appeared on several Post-it notes. The codes were further sorted into groups by content. These groups constituted potential sub-themes. In this interpretive phase of the analysis, we made use of tables and a thematic map to gain an overview of recurring and potentially related phrases. After the sorting process, we reviewed the sub-themes to check if they were appropriate for the included codes, and if the codes belonged under the relevant sub-theme. During this review, we also assessed whether the sub-themes were mutually exclusive, or whether any of them should be merged. We then proceeded to define the main themes.

      Identifying the main themes was an iterative process in that we went back and forth between sub-themes and main themes. We commenced the analysis by taking an inductive approach. As the themes were identified, the analysis process became more deductive. All four authors took part, either as observers or facilitators during the data collection phase, and all four contributed to the data analysis.

      Ethical considerations

      The conference attendees were informed that anonymous data from the world café would be used to further develop PFE with health literacy in mind. The participants were informed that we were going to analyse the collected information, that we would process this information, and that we would give something back to the participants by reporting our findings and the implications for the field of practice.

      We contacted the clinical ethics committee at the Hospital of Southern Norway concerning the use of anonymous data from the world café. They deemed that the study was not reportable. Because the study did not involve personal data and is based on material provided anonymously, it is not reportable to the Norwegian Centre for Research Data (NSD/Sikt).

      Results

      During the data analysis we identified six main themes that the health professionals and managers felt were important for health literacy in PFE:

      1) The competencies of health professionals, 2) The competence and preferences of patients and family members, 3) Interaction, 4) Resources and frameworks, 5) Collaboration and cooperation, and 6) Consequences of health literacy.

      As a part of the thematic analysis, which was inspired by Braun and Clarke (21), we drew up a thematic map that shows how the sub-themes formed the basis for the six main themes (Figure 1).

      Figure 1. Thematic map of main themes and sub-themes

      Theme 1 deals with the importance of health professionals’ PFE competence. Such competence includes their skills requirements, attitudes to patients and family members, skills in using communication methods and techniques, skills in planning and providing PFE, and skills in mapping health literacy needs and motivation among service users.

      Theme 2 deals with the needs and preferences of patients and family members, and how these needs can be met through PFE. Theme 2 also covers the patients’ understanding of their own health situation and their skills in critically appraising health information and navigating the healthcare system.

      Factors that affect the interaction between health professionals, patients and family members are included in theme 3. To promote interaction, it is important that health professionals realise the importance of establishing a relationship with the patients and their family, so they feel reassured and have trust in the health professional. It is also important that health professionals are sensitive to the language and cultural background of the individuals they engage with, and that all information is adapted to the health literacy of the patients and their family.

      Throughout the conversation, health professionals also need to work with patients and their family to check that all parties understand the meaning of the information, and that the PFE learning outcomes are achieved, for instance by using the Teach Back communication method. Facilitating service user involvement is also included under theme 3. The interaction is an expression of teamwork and a relationship between health professionals, patients and their family, which is what the arrow in the figure seeks to illustrate.

      Theme 4 covers resources and frameworks that are required for PFE to be implemented. The participants expressed a need for sufficient funding, personnel, time, equipment and premises to be set aside for this work. They also called for access to appropriate educational resources. In terms of digital PFE, it emerged that there was a need for satisfactory support and guidance of health professionals as well as patients and family members. Support provided by family members was considered a resource in PFE.

      Theme 5 provides information about the importance of collaboration and cooperation across health services and healthcare disciplines in PFE. Collaboration with other agencies in arenas out with the health service is also included, e.g. schools, libraries and various religious communities.

      The potential consequences of failing to adapt PFE to the health literacy of patients and their family members are included under theme 6. The participants pointed out that poor health literacy may impact on patient safety, and that satisfactory health literacy among patients can bring health benefits. Such benefits include better compliance with recommended health advice, early identification of disease, better utilisation of healthcare assistance and better treatment outcomes, such as coping and independence.

      Discussion

      Our thematic analysis identified six main themes that can be considered key to adapting PFE to the health literacy of patients and family members: 1) The competencies of health professionals, 2) The competence and preferences of patients and family members, 3) Interaction, 4) Resources and frameworks, 5) Collaboration and cooperation, and 6) Consequences of health literacy

      The competencies of health professionals

      In line with earlier research (14, 15, 22), our results suggested that the health professionals felt a need for better skills within the fields of health education, communication and conversation techniques. They also sought knowledge about and training in how to identify health literacy levels as well as planning and providing PFE adapted to patients and family members with different levels of health literacy.

      Similar health professional skill sets were also highlighted in the study by Coleman et al. (8), but the concept of health literacy was less prominent in our data. This may be because the concept is relatively new in a Norwegian context (12). However, when the participants talked about the consequences of health literacy, the importance of health literacy in PFE was made clear.

      Despite the competencies of health professionals being identified as a theme, there was little focus on developing health literacy skills in health trusts during discussions. Neither did the participants emphasise health literacy in descriptions of learning outcomes for healthcare education programmes. This result is contrary to the findings of earlier studies (8, 14).

      However, accentuating health literacy in descriptions of learning outcomes for healthcare education programmes is listed as one of the strategies for improving the population’s health literacy (12).

      The competence and preferences of patients and family members

      Our findings may suggest that the needs and preferences of patients and family members should be identified to enable adaptation of health communication to their level of health literacy, and in order to facilitate self-management. This finding should be seen in the context of the national health authority’s emphasis on service user involvement, shared decision-making and the ‘What is important to you?’ campaign (12). It is therefore pivotal that the competence and preferences of patients and family members are recognised in PFE.

      However, Goggins et al.(23) highlight a link between an individual’s health literacy and their wish to take part in shared decision-making processes. Our study also shows that it may be important for health professionals to map the capacity of patients and family members to manage their own health situation. Such mapping may include the patients’ insight into and understanding of their own situation and whether they know what actions to take in order to manage their health situation.

      Understanding your own situations and having the skills to manage it, can be viewed in conjunction with various health literacy domains, such as functional health literacy (2), and the cognitive aspects of understanding and utilising heath information that Sørensen et al. (24) consider to be key to satisfactory health literacy. It can also be related to what Jordan et al. (25) refer to as understanding health information well enough to know what to do.

      In today’s information society it is also important that patients and family members can critically appraise health information from different sources. This is referred to as critical health literacy (2) and can be linked to the cognitive aspect of health literacy, to appraise health information (24, 25). Our data demonstrate less clearly the cognitive aspect of health literacy, which is concerned with seeking and accessing health information.

      The participants considered it an important skill to be able to find your way around, or navigate, the healthcare system. Skills in navigating the healthcare system are included in the conceptual model put forward by Jordan et al. (25) and are considered an important aspect of health literacy in the international HLS19 survey (Health Literacy Survey 2019) (4). Facilitating patients’ and family members’ navigation of the healthcare system is also included in what is understood as ‘health literacy friendly services’ (9).

      We were surprised to find that the family perspective was given little attention in the world café conversations. It is however possible that when they discussed the various questions, participants thought of patients and their families as a single unit. Moreover, no reflections emerged concerning children, either in the role of patient or family. It is essential that children and young people are also given tailored information about their own, their parents’ or their siblings’ health and medical condition.

      Interaction

      This theme refers to the interaction between the health professional, the patient and the family. The theme relates to what Nutbeam (2) calls interactive or communicative health literacy, or the dimensions of feeling understood, feeling supported by health professionals and actively engaging with health professionals (25).

      This theme involves the health professional’s interaction with patients and their families, as well as factors that are important for creating such interaction. Several sub-themes associated with the theme of interaction can be considered relevant in health communication in general, like establishing trust and providing reassurance, and creating a relationship with patients and their family. It is key to any such interaction that the health professional uses plain language and employs educational tools like Teach Back (26).

      Moreover, health information must be adapted to the health literacy of patients and their family. It is a statutory duty to adapt health information to the recipient (27). Several participants asserted that health communication and health literacy are really one and the same thing. Consequently, health professionals may well be unaware of the importance of health literacy in PFE.

      However, there is a close link between the two concepts, with health communication incorporating the communication of health messages, while health literacy can be seen as a skill that is required to be able to relate to and utilise health information. However, health communication and health literacy can be interdependent, in the sense that tailored health communication can boost an individual’s health literacy (2).

      Resources and frameworks

      Our findings indicate that time constraints may prevent health communication in PFE from being sufficiently adapted to people’s health literacy. This is in line with the findings of Nantsupawat et al. (22) and Rajah et al. (28). When communicative health literacy was surveyed in nine European countries, it also emerged that it was challenging to set aside sufficient time during patient consultations (29).

      The theme of resources and frameworks also included access to adequate educational resources and digital tools, which may be linked to financial resources. The introduction of educational resources and digital tools in order to strengthen PFE will therefore depend on funding.

      There may also be a need to strengthen the digital skills of health professionals, as well as those of patients and their families, in order to make better use of the digital resource. Despite the fact that several managers attended the conference, our data provided little information about the management perspective and the need for initiatives to be rooted in management.

      Collaboration and cooperation

      Our findings suggest a need to strengthen the level of cooperation between different parts of the healthcare system, for instance by being better acquainted with the services provided by others, and by striving to adopt a uniform language within healthcare. The participants would like to see cooperation in respect of patient courses and shared educational resources.

      This is in line with the recommendation that PFE should be included in patient pathway interactions between the specialist health service and the primary care services (12), and that general practitioners should be included in this interaction. Systematic cooperation and collaboration concerning PFE may improve standards and continuity in cohesive patient pathways.

      In terms of PFE for people from an immigrant background, the data suggest that it may be useful to consider alternative arenas for health communication in order to reach a larger number of people. This is of particular relevance for groups that can otherwise be challenging to reach.

      However, we feel that alternative arenas may also be relevant for other target groups as we seek to improve the population’s health literacy, for instance through health themed events at local libraries or stands in shopping centres. In order to strengthen the health literacy of children, better cooperation between the health service and schools would be appropriate, and potentially even sport clubs.

      Consequences of health literacy

      In keeping with earlier research (3), our study participants considered that low health literacy could lead to poor treatment outcomes and compliance, which may impact on the patient’s safety. If the service is not adapted to the health literacy of patients and their family members, this may lead to unequal access to health information and health services, and therefore social inequalities in health.

      Poorer treatment outcomes and poor compliance may lead to more serious health conditions and complications for the individual, as well as a greater need for resources. In the strategy to improve the population’s health literacy (12), this is highlighted as a way of securing better use of resources and a sustainable health service. If patients have skills that allow them to recognise symptoms and changes to their health, they may well be able to address their health challenges at an earlier point.

      Health literacy can also put patients in a better position to manage their own health situation in their everyday lives. Health literacy will therefore be beneficial for PFE, in that patients and their family will benefit more from the health assistance provided and make better use of the resources.

      Whether an individual’s health literacy is satisfactory may depend on the complexity of the situation, but also the degree to which health professionals understand health literacy and its influencing factors. For patients and family members to be able to manage their health situation, it is therefore important to be alert to ways in which the health service may become more health literacy friendly. The spotlight should be on organisational health literacy (9), which is also highlighted as a system-level measure in the strategy to improve the population’s health literacy (12).

      Strengths and weaknesses of the study

      It is one of the study’s strengths that we were able to collect the reflections of a large number of health professionals and managers from multiple disciplines within PFE, and representing most of the health trusts in the South-Eastern Norway Regional Health Authority. One of the benefits of using the world café methodology was that, much like focus group interviews, this gave access to rich data because participants built on the statements of other participants (30).

      On the other hand, it may have been the case that participants were influenced by input from other participants, and that they reinforced one another’s statements. However, in our study participants wrote down their keywords and statements on Post-it notes before discussions started at the different tables. The world café tool therefore gave all study participants an equal opportunity to express themselves. During the world café event, the table hosts could also ask participants to elaborate on their reflections, and they were able to ask for clarification.

      The data collected for our study were keywords and statements written on Post-it notes. Notes of this nature may come with limitations, such as less depth compared to a focus group interview. In order to strengthen the data, we could have made audio recordings during the world café event. However, this might have been disruptive, because the various tables would have had to be positioned in separate rooms to ensure a good sound quality. This would also have required us to submit the study to the data protection officer. Additionally, a sound recording might have affected the participants’ sense of security in sharing reflections and experiences.

      Another challenge involved with using world café methodology is that there may be less interaction between the researcher and the participants. The researcher’s opportunity to explore specific statements in greater depth was more limited than in an individual interview (30). However, all the authors took part in the data collection, and they conducted the analysis together and reached a consensus.

      Another strength of the study is the fact that the article is written by a multi-disciplinary group of people. Two of the authors work in the field of PFE, and the other two are researchers in the field of health literacy. Being able to analyse the findings in close proximity to the field of practice as well as the field of research has added value to the study.

      Potential implications for practice and research

      Based on the findings of this study, health trusts and PFE programmes should focus on what health literacy is, offer training and educational resources for health professionals to learn how to map the health literacy of patients and family members, and offer education and skills training in various communication techniques and how to adapt health communication for people with different levels of health literacy.

      Moreover, sufficient time should be set aside for PFE. Structures should also be put in place to facilitate collaboration and interaction across service levels, including in relation to PFE. Several of the suggested measures can be viewed as part of the concept of health literacy friendly services. Some trusts have already put health literacy on the agenda and are aiming to be health literacy friendly by placing an emphasis on organisational health literacy.

      Future research should seek to examine how health professionals follow up health literacy needs in PFE, and identify tools for mapping the health literacy of patients and family members. Based on the health literacy challenges outlined, adaptive PFE interventions should be developed that would be better suited to people’s different levels of health literacy. The effect of health literacy interventions on coping with health issues and disease, treatment outcomes and patient safety should be explored.

      Conclusion

      Health professionals and managers reported a need for more knowledge about health literacy and how they might adapt PFE to different target groups. They felt it was key to cater for the competence and preferences of patients and family members, but that resources and frameworks may be a constraint. However, collaboration and cooperation across professions and services may help to improve PFE.

      The participants pointed out that poor health literacy could impact on treatment outcomes and compliance, which in turn may affect patient safety. For PFE to succeed, it is imperative that the health service takes a targeted approach to health literacy by introducing strategies and systems, and that these are operationalised to make sure the organisation becomes more health literacy friendly.

      The authors declare no conflicts of interest.

      Open access CC BY 4.0.

      Peer-reviewed article
      Publication type
      Publication Year
      2023
      Edition Year
      18
      Publication Number
      91893
      Page Number
      e-91893

      Improved knowledge, adaptive frameworks and cooperation are essential for adapting patient and family education to appropriate health literacy levels.

      Article is Peer Reviewed
      1
      Innsendte kommentarer kvalitetssikres før publisering. Kvalitetssikringen skjer i vanlig arbeidstid.
      Research
      English
      Sammendrag

      Background: Patients’ and family members’ opportunities for optimum management of the patient’s health can be influenced by the extent to which registered nurses and other health professionals adapt health information to the individual’s health literacy level. Additionally, patients and family members need satisfactory health literacy to be able to engage in shared decision-making processes. In brief, health literacy involves the individual’s capacity to access, understand, appraise and use health information and services in order to promote and maintain good health. However, health professionals are relatively unfamiliar with the concept of health literacy. Many have expressed uncertainty about the meaning of the concept and an interest in the implications of health literacy for patient and family education. Few studies have focused on how health professionals reflect on the significance of health literacy in patient and family education.

      Objective: The objective of the study was to describe how health professionals and managers reflect on the significance of health literacy in patient and family education.

      Method: This was a descriptive qualitative study for which the data were obtained by means of the ‘world café’ engagement process. Data were collected during the regional conference for patient and family education held by the South-Eastern Norway Regional Health Authority in December 2021. A total of 54 health professionals and managers took part, representing a range of disciplines and eight health trusts with particular responsibility for patient and family education in the specialist health service. Service user representatives also participated. We analysed the data by conducting a thematic analysis as inspired by Braun and Clarke.

      Results: We identified six main themes and 27 sub-themes. The main themes were: 1) The competencies of health professionals, 2) The competence and preferences of patients and family members, 3) Interaction, 4) Resources and frameworks, 5) Collaboration and cooperation, and 6) Consequences of health literacy.

      Conclusion: Health professionals and managers reported a need for improved skills in how to follow up health literacy needs in patient and family education. This need relates to a focus on organisational health literacy. Satisfactory resources and frameworks, and increased collaboration and cooperation can help to provide better adapted patient and family education. Greater health literacy awareness may potentially also boost patient safety.

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      • Registered nurses and other health professionals need more knowledge about health literacy as a concept, what it means, and what it involves in terms of patient and family education (PFE). Health professionals have limited skills in identifying individuals with poor health literacy. We need to learn more about health professionals’ thoughts on the impact of health literacy in PFE.
      • The experience that health professionals and managers have of health literacy in PFE was identified through the world café process. This formed the basis for a thematic analysis.
      • The study provides an insight into the experience that health professionals and managers have of health literacy in PFE. Such knowledge will be of importance for the further development of PFE, and it provides an insight into the needs that health professionals may have for PFE skills and what frameworks should be in place for adaptive PFE. This knowledge will also be important for healthcare education programmes.

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    • Patients’ families in intensive care units in Norway before and during the COVID-19 pandemic

      Bildet viser en intensivpasient med maske som kommuniserer med familien sin på ipad.

      Introduction

      It is crucial for patients’ families that they are present in the intensive care unit (ICU) with the patient (1). Flexible visiting times are therefore one of a number of significant factors. Spending time with the patient without any particular restrictions is an essential part of patient- and family-centred care (2, 3).

      The government’s strategy for patients’ families from 2020 provides for close cooperation between healthcare personnel, patients and families. Early identification and family care, good information flow, cooperation and family members’ right to be involved are key components of this (4).

      Acute critical illness and admission to an ICU can cause a great deal of uncertainty for patients’ families, and they face a risk of losing their loved one. The ICU nurses have a particular responsibility for continuity of family care (5, 6). The complex interplay between family members and nurses is described in a new, practice-oriented theory: nurse-promoted engagement with families in the ICU, which describes the factors that support and impair family engagement. One of the main points is that families must have good access to the patient and be involved in the patient’s care, and that this is significant for both patient and family outcomes (7).

      Family members of intensive care patients are exposed to long-term problems related to their situation. Research shows that they are particularly affected by emotional responses such as symptoms of post-traumatic stress, anxiety, depression and complicated grief, particularly in cases where the patient dies (8, 9). The distress they feel can be reduced if they feel welcome in the ICU and are involved in the patient’s care. This involvement is based on mutual respect and cooperation between the patient, the family member and the healthcare personnel (2).

      A particularly important aspect of family care concerns communication and the ability to establish a relationship of trust between the parties. Research in this area shows that having a welcoming and inclusive culture in the ICU helps make families feel involved and actively engaged in the patient’s situation (10).

      However, visiting arrangements in ICUs differ considerably from country to country. Some have flexible visiting hours where families are welcome at any time, while others have restrictions and limited visiting hours (11).

      Until now, little has been known about family care policies in ICUs in Norway and the other Nordic countries. In 2019, a study was conducted of ICUs’ information and visiting policies in a selection of Nordic countries (12). Shortly after this study, the COVID-19 pandemic broke out, with major implications for critically ill patients and their families (13). For many years, the goal had been to involve families in the care of ICU patients and have flexible visiting hours. When the pandemic started, hospitals were quickly closed to visitors as an infection control measure. Consideration for the family was of secondary importance.

      ICUs were more or less closed to visitors, which prompted a re-examination of information and visiting policies in ICUs in Scandinavia (14). The study we present here analyses and discusses findings in the Norwegian data from these studies (12, 14). 

      Objective of the study

      The objective of this study was to examine the information and visiting policies for families in Norwegian ICUs before and during the COVID-19 pandemic.

      Method

      We aggregated data from two large cross-sectional studies that we conducted in 2019 and 2020, and extracted the Norwegian data from these studies to describe and present information and visiting policies in Norwegian ICUs.

      We collected data for the first study in late autumn 2019, prior to the COVID-19 pandemic (Study 1). The objective of this study was to describe visitor access and family care in Norwegian, Swedish, Danish and Finnish ICUs (12).

      When the COVID-19 pandemic broke out in March 2020, we devised a similar study (Study 2). The questionnaire from Study 1 was used as a basis and was revised to include new questions related to the pandemic. Data were collected from Norwegian, Swedish and Danish ICUs in November 2020. The purpose was to investigate visiting restrictions and family care during the first phase of the pandemic in the period March to June 2020 (14).

      Ethics

      The study was covered by the approvals that had already been granted for studies 1 and 2. Study 1 was approved by the Norwegian Centre for Research Data (NSD), reference number 557960. Study 2 was approved by the Region of Southern Denmark’s committee for research projects, reference number 20/2513, on behalf of all participating countries, and the NSD also considered the study to be approved in Norway. The NSD found that the study presented here, in which Norwegian data are examined in more detail, was not subject to notification requirements.

      We did not register information about the respondents’ IP addresses or other personal data. Both Study 1 and Study 2 were conducted with the support of the management of the various ICUs.

      Setting

      Studies 1 and 2 were both cross-sectional studies in which a representative from all ICUs that primarily treated adult patients was invited to participate.

      Recruitment of participants

      Contact details of the manager or clinical nurse educator in the various ICUs were obtained from the Norwegian Intensive Care Registry (NIR) and via contact persons in the Norwegian Association for ICU Nurses. These were contacted by phone or email and asked to provide the name and email address of an ICU nurse who could be invited to respond to the questionnaire on behalf of the unit. Nurses with solid experience in clinical practice were preferred. The person selected was sent a questionnaire via email, along with information about the study, and consent was assumed on the return of the completed electronic questionnaire. All ICUs received a reminder.

      The questionnaires

      A search for questionnaires that had already been validated showed that none of the existing forms could be used to answer the research questions in the planned studies. We therefore used earlier research and similar studies as a basis for developing study-specific questionnaires (11, 15), with some open fields for free-text comments. The questions related to visitor access and restrictions, the information flow between the patient, family and healthcare personnel, family care for children, and follow-up measures aimed at families. The questionnaire used in Study 1 was developed in Norwegian and translated to the respective countries’ languages (12).

      The questionnaire for Study 2 was developed in Danish and translated to the languages of the other participating countries (14). Both questionnaires were pilot tested. In Norway, the pilot testing entailed three ICU nurses in Study 1 and two ICU nurses in Study 2 reading through the questionnaires and giving feedback on whether the questions were relevant, easy to understand and reader-friendly. We made small linguistic corrections after the pilot test. The final questionnaire was emailed via SurveyXact, a tool for questionnaire-based surveys. The data were stored in a secured area on a research server at the University of Agder.

      Most of the questions from Study 1 and Study 2 were not directly comparable. We did not therefore perform statistical tests for comparison across the studies. The questions used from Study 1 and Study 2 related to background information about the ICUs, visiting times and information for families. These questions were comparable but not identical.

      Analyses

      Quantitative data were analysed in Stata 15, and we present descriptive statistics. Categorical variables are described as numbers and percentages. We analysed qualitative data in both studies using content analysis (16, 17). A researcher from each country analysed the data from their own country and across the entire dataset. Most of the comments were related to specific questions, but many were detailed responses. In this study, qualitative data from the free-text fields were assembled descriptively and analysed across the studies.

      Results

      In Study 1 – before the COVID-19 pandemic – 79 per cent (44 out of 56 units) responded, and 35 per cent (20 out of 57 units) responded in Study 2 – during the pandemic. In both studies, ICUs represented all three levels of ICUs (18, 19), with level 1 having the least complex intensive care patients and level 3 the most critically ill intensive care patients. All the units in Study 2 increased bed capacity during the pandemic, and some received help from staff from other departments (Table 1).

      Table 1. Background characteristics

      Before the COVID-19 pandemic (Study 1)

      Visiting restrictions

      Before the COVID-19 pandemic (Study 1), 18 ICUs (41 per cent) reported that family members could visit at any time. A further 17 ICUs (39 per cent) stated that they could visit at any time, apart from two hours a day. Two units (5 per cent) had fixed visiting hours where family members could visit for less than four hours a day, and two units (5 per cent) had fixed visiting hours where family members could visit for more than four hours a day (Table 2).

      Table 2. Visiting hours

      In the free-text comments, the informants in nine of the ICUs (20 per cent) described other solutions for visiting hours, such as individual decisions that deviated from the unit’s policy. The informants justified this flexible approach by pointing out that family members are considered an important resource, both for the patient and the staff. The fact that the patient as well as their family could be said to be facing a crisis increases the need for contact. The ICUs therefore facilitated visits to the greatest extent possible. The informants found it easier to implement flexible visiting hours for patients who had private rooms.

      Units that had strict visiting hours, such as two hours twice a day, justified this with the rationale that time had to be prioritised for tasks such as reports, patient hygiene care and doctors’ visits. The heavy workload made it challenging for the staff to involve family members, and it was common to have a period without visitors at each shift. The informants described how the shortage of staff made it difficult to meet the patient’s need for rest and relaxation whilst also protecting their privacy.

      The ICUs were asked about the number of visitors who could see the patient at the same time. Eleven units (25 per cent) stated that up to three people could visit at the same time. Twenty-five units (57 per cent) said they had other solutions for visitors (Table 2). These were further described as individual assessments related to the situation and the patient’s condition as well as other considerations that had to be made in the unit. Several units commented that only two people were allowed to visit the patient at a time, and they wanted as few as possible visiting at the same time.

      During the COVID-19 pandemic (Study 2)

      Visiting restrictions

      During the COVID-19 pandemic (Study 2), all units that answered the question on visiting policy (18 out of 20 departments) had visiting restrictions. These restrictions were either in the form of a total ban on visitors to the unit, a ban on visitors to the unit except for patients who were dying, or restricted access. During the initial few months of the first wave of infections from March to June 2020, 12 units (67 per cent) modified their restrictions. About six months after the first wave, all ICUs still had a total or partial ban on visits (Table 2).

      In the free-text comments, it emerged that despite the initial strict visiting restrictions, ICU nurses made individual assessments in some cases. Dying and critically ill patients in some units were allowed visitors, but the arrangements were strict here as well.

      Fourteen units (78 per cent) had set criteria for family visits during the COVID-19 pandemic (Table 2). In the free-text comments, it emerged that it was often the immediate family and healthy people who were allowed to visit the patients. The decision to allow visitors was normally taken by the manager or by several staff in the unit jointly (Table 2).

      In the free-text comments, it was also emphasised that overarching guidelines outside the staff’s control guided the visiting policy for the unit. Visiting arrangements differed and were justified on the basis of infection control and protection of the intensive care capacity, but discretion was also exercised. Physical space limitations were also cited as a factor for not allowing visits.

      The permitted length of visits varied during the COVID-19 pandemic. About half of the ICUs that allowed visitors stated that they could stay for less than an hour (Table 2). Nevertheless, the free-text comments showed that staff made individual assessments.

      Information and consultations with family members

      Before the COVID-19 pandemic, fewer ICUs had a fixed system for the flow of information from intensive care doctors to patients’ families than during the pandemic, for example information was provided at the same time every day (11 per cent versus 29 per cent). Furthermore, before the pandemic, few units (11 per cent) offered patients’ families a daily consultation with the intensive care doctor, while during the first wave of the pandemic, this was available in 47 per cent of the units (Table 3).

      Before the pandemic, the nurses were involved in more than half of the conversations, but this was reduced to barely a third during the pandemic (Table 3). In the comments, the informants described how, during the pandemic, the communication between the patient and their family took place via phone calls with or without video, with the nurse linking the two parties. This was also the case for the communication between the family and the staff, which also took place via phone, but with less use of audio and video.

      Table 3. Information provided to families

      General written information about patient care and being a family member of a critically ill patient

      Both before and during the COVID-19 pandemic approximately 75 per cent of the units reported that they seldom or never provided general written information about patient care. The informants in less than half of the units said that they seldom or never gave information to patients’ families about what being a family member of a critically ill patient may entail (Table 3), and that written material usually contained information about the policies of the ICU and the hospital.

      Discussion

      The objective of the study was to examine information and visiting policies for patients’ families in Norwegian ICUs before and during the COVID-19 pandemic. We aggregated the results from two cross-sectional studies conducted at two different time points. We found that restrictions and major adaptations due to the pandemic have significantly changed fundamental aspects of family-centred care, namely the family’s opportunity to get involved in patient care in the ICU and their ability to support the patient and be a familiar face (2, 7).

      The pandemic led to visiting restrictions

      Before the pandemic, most Norwegian ICUs were classified as open, with flexible visiting arrangements, but they were immediately closed to visitors when the pandemic started. In line with other studies (20, 21), we found that the regulations and restrictions for patients’ families differed. Some units had restrictions on the number of visitors at the same time, or defined visiting hours, and in certain situations visits were not considered appropriate. Comments showed that the regulations were largely discretionary, and many ICUs went to great lengths to meet the patients’ needs.

      The discretionary decisions in ICU nurses’ practices can be said to contribute to the humanising of intensive care through individual considerations (22). A new Norwegian study shows that ICU nurses’ discretionary decisions both foster family involvement and limit their access to the unit. In some cases, healthcare personnel find that family care can be too demanding on top of patient care (10).

      Visitor access policies are typically decided by the ICU nurses in the multidisciplinary team, but practices differ (6). Research shows that flexible visiting hours are associated with positive outcomes for both the patient and family. A lower incidence of delirium and anxiety has been found in intensive care patients when visiting hours are flexible. Satisfaction among family members was also found to have increased (3).

      However, we found little evidence from Study 1 and Study 2 that reflects these research findings. Infection control measures were cited as an important reason for limiting visitors’ access to the patient during the pandemic. Recent research now shows that patients’ families are not a main source of infection in ICUs (23).

      Several units eased the restrictions early in the pandemic

      Guidelines for visits should remain relatively constant and not be changed too often. When they are changed frequently, it can be difficult for staff to stay up to date, causing unnecessary confusion. The guidelines should also provide for a new wave of infection so that units do not need to close to visitors, as happened during the pandemic (23).

      In our study, we found that approximately two-thirds of the units eased the restrictions during the first wave of the pandemic between March and June 2020. Research shows that patients, their families and nurses are satisfied with flexible visiting hours that enable the family to visit the patient almost as often as they want and for as long as they want (3). However, it is important to find a balance that accommodates the needs of all parties and where the nurse can perform her duties in a way that protects patient safety (3, 24).

      The pandemic led to changes in information and communication

      The pandemic brought about a clear change in the flow of information and communication between healthcare personnel and patients’ families. Before the pandemic, family members themselves contacted the nurse and then spoke to the doctor if they needed to. During the pandemic, it was the doctor who was the families’ main contact. While nurses were typically involved in conversations with the family and the doctor prior to the pandemic, this was much less the case during the pandemic. Research from that time period shows that nurses missed the contact with families during the pandemic (25, 26).

      We found that approximately a quarter of families, both before and during the pandemic, received written information about the patient’s treatment and about being a family member of a patient in an ICU. However, the lack of contact with the nurses during the pandemic was generally not compensated with additional written information about the situation as a patient or family member. Individual information or written general information for family members in booklets or online has been shown to be highly valued in such a precarious situation (27).

      Family members’ informal contact with ICU nurses during visits to a patient’s room gives both parties comfort, support and encouragement, which were completely absent during the pandemic. Neither did families have the opportunity to give the patient ‘a face’ by describing who they are as a person (26). Knowing the person reinforces the humanity in intensive care (22). However, we found that some ICUs compensated for the lack of visitor access by using digital platforms. Several studies show evidence of a similar practice (25, 28).

      Although our study showed that restrictions were eased during the first four months of the pandemic, ICUs did not return to their pre-pandemic levels. It is uncertain whether we are now back to a situation where a large proportion of the Norwegian ICUs once again have flexible and generous visiting hours, as recommended in international research (29, 30).

      Limitations of the study

      This study has some limitations. The response rate in Study 2 was lower than in Study 1. One explanation could be that not all ICUs in Norway had COVID-19 patients, and did not therefore respond to the questionnaire. Furthermore, the samples aggregated from Study 1 and Study 2 were heterogenous, and several of the questions were also different. These factors precluded comparative tests across the two samples.

      Study 2 was conducted at a time when society in general was subject to strict regulations for social contact. Visiting policies at hospitals were changed in line with these regulations. Finally, the units that did not answer the questionnaire may have had both flexible and restricted visiting hours, which may have shed more light on the situation.

      Conclusion

      In this study, we aggregated Norwegian data from two cross-sectional studies. ICUs in Norway went from being relatively open and accessible before the pandemic to being relatively closed and inaccessible to patients’ families during the pandemic. However, individual adaptations were made during the first wave of the pandemic to enable patients’ families to spend at least some time with their loved one.

      During the pandemic, more families were offered a daily consultation with the intensive care doctor than before the pandemic. Before the pandemic, the nurses were more often involved in exchanges of information and communication with patients’ families than during the pandemic.  

      Thanks go to the ICUs in Norway that provided data for the studies.

      The authors declare no conflicts of interest.

      Open access CC BY 4.0.

      Peer-reviewed article
      Publication type
      Publication Year
      2023
      Edition Year
      18
      Publication Number
      91979
      Page Number
      e-91979

      More families had daily access to doctors during the pandemic than before the pandemic. But the nurses were involved in fewer conversations.

      Article is Peer Reviewed
      1
      Innsendte kommentarer kvalitetssikres før publisering. Kvalitetssikringen skjer i vanlig arbeidstid.
      Research
      English
      Sammendrag

      Background: It is important for patients to have their family with them in the intensive care unit. Traditionally, family members of patients in intensive care units in Norway have been allowed to spend considerable time with their loved one. During the COVID-19 pandemic, strict visiting restrictions were introduced in the intensive care units. Little is known about the provision of information and the families’ access to intensive care patients either before or during the pandemic.

      Objective: The objective of the study was to examine the information and visiting policies for patients’ families in Norwegian intensive care units before and during the COVID-19 pandemic.

      Method: Norwegian data from two cross-sectional studies on information and visiting policies are described and presented. We obtained data from one Nordic (Study 1, 2019) and one Scandinavian cross-sectional study (Study 2, 2020). Questionnaires were sent to all intensive care units, and these were completed by a nurse in each unit. We analysed the quantitative data using descriptive statistics, and free-text comments using content analysis.

      Results: Before the COVID-19 pandemic, 80 per cent of Norwegian intensive care units reported having relatively flexible visiting hours, and patients’ families were considered an important resource for both the patient and the staff. During the pandemic, all intensive care units were subject to strict visiting restrictions, but in some cases the nurses exercised discretion. Before the pandemic, 11 per cent of patients’ families were offered a daily consultation with a doctor. During the pandemic, the corresponding figure was 47 per cent. The nurses were involved in fewer of these conversations during the pandemic than before the pandemic.

      Conclusion: The information and visiting policies in Norwegian intensive care units were changed during the COVID-19 pandemic, and the units went from being relatively accessible for patients’ families to being closed to visitors. Before the pandemic, visiting hours were flexible, and individual considerations were taken into account. During the pandemic, more patients’ families had daily consultations with the doctors compared with before the pandemic, and nurses were involved in fewer conversations where the doctor informed the family about the patient’s condition.

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      • Intensive care units (ICUs) have a long tradition of involving patients’ families in the unit, with the nurses having the main responsibility for the contact with them. During the COVID-19 pandemic, the doctors took over much of this contact.
      • The pandemic led to visiting restrictions and restrictions for patients’ families. The contact between the patient, the family and the health personnel was significantly impaired.
      • It is uncertain whether the ICUs have now returned to flexible visiting arrangements. Our study was unable to conclude whether this is the case or not, but it would be interesting to investigate in a new study.

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      2.            Davidson JE, Aslakson RA, Long AC, Puntillo KA, Kross EK, Hart J, et al. Guidelines for family-centered care in the neonatal, pediatric, and adult ICU. Crit Care Med. 2017;45(1):103–28. DOI: 10.1097/ccm.0000000000002169

      3.            Nassar AP junior, Besen B, Robinson CC, Falavigna M, Teixeira C, Rosa RG. Flexible versus restrictive visiting policies in ICUs: a systematic review and meta-analysis. Crit Care Med. 2018;46(7):1175–80. DOI: 10.1097/ccm.0000000000003155

      4.            Departementene. Vi – de pårørende. Regjeringens pårørendestrategi og handlingsplan. Oslo: Helse- og omsorgsdepartementet; 2020. Tilgjengelig fra: https://www.regjeringen.no/contentassets/08948819b8244ec893d90a66deb1aa4a/vi-de-parorende.pdf (nedlastet 01.11.2022).

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      6.            Nygaard AM, Haugdahl HS, Brinchmann BS, Lind R. Interprofessional care for the ICU patient's family: solitary teamwork. J Interprof Care. 2022:37(1):11–20. DOI: 10.1080/13561820.2022.2038548

      7.            McAndrew NS, Schiffman R, Leske J. A theoretical lens through which to view the facilitators and disruptors of nurse-promoted engagement with families in the ICU. J Fam Nurs. 2020;26(3):190–212. DOI: 10.1177/1074840720936736

      8.            Alfheim HB, Hofso K, Smastuen MC, Toien K, Rosseland LA, Rustoen T. Post-traumatic stress symptoms in family caregivers of intensive care unit patients: a longitudinal study. Intensive Crit Care Nurs. 2019;50:5–10. DOI: 10.1016/j.iccn.2018.05.007

      9.            Davidson JE, Jones C, Bienvenu OJ. Family response to critical illness: postintensive care syndrome-family. Crit Care Med. 2012;40(2):618–24. DOI: 10.1097/CCM.0b013e318236ebf9

      10.          Nygaard AM, Haugdahl HS, Laholt H, Brinchmann BS, Lind R. Professionals' narratives of interactions with patients' families in intensive care. Nurs Ethics. 2022: 29(4):885–98. DOI: 10.1177/09697330211050995

      11.          Cappellini E, Bambi S, Lucchini A, Milanesio E. Open intensive care units: a global challenge for patients, relatives, and critical care teams. Dimens Crit Care Nurs. 2014;33(4):181–93. DOI: 10.1097/dcc.0000000000000052

      12.          Frivold G, Ågård AS, Jensen HI, Åkerman E, Fossum M, Alfheim HB, et al. Family involvement in the intensive care unit in four Nordic countries. Nurs Crit Care. 2021;27(3):450–9. DOI: 10.1111/nicc.12702

      13.          Hugelius K, Harada N, Marutani M. Consequences of visiting restrictions during the COVID-19 pandemic: an integrative review. Int J Nurs Stud. 2021;121:104000. DOI: 10.1016/j.ijnurstu.2021.104000

      14.          Jensen HI, Åkerman E, Lind R, Alfheim HB, Frivold G, Fridh I, et al. Conditions and strategies to meet the challenges imposed by the COVID-19-related visiting restrictions in the intensive care unit: A Scandinavian cross-sectional study. Intensive Crit Care Nurs. 2021;68:103116. DOI: 10.1016/j.iccn.2021.103116

      15.          Agård AS, Lomborg K. Flexible family visitation in the intensive care unit: nurses' decision-making. J Clin Nurs. 2011;20(7–8):1106–14. DOI: 10.1111/j.1365-2702.2010.03360.x

      16.          Elo S, Kyngäs H. The qualitative content analysis process. J Adv Nurs. 2008;62(1):107–15. DOI: 10.1111/j.1365-2648.2007.04569.x

      17.          Graneheim UH, Lundman B. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today. 2004;24(2):105–12. DOI: 10.1016/j.nedt.2003.10.001

      18.          Norsk anestesiologisk forening, Norsk Sykepleierforbunds landsgruppe av intensivsykepleiere. Retningslinjer for intensivvirksomhet i Norge. Oslo: Den norske legeforening; 2014. Tilgjengelig fra: https://www.legeforeningen.no/contentassets/3248b779580a4cfb9c57bef6dece3eca/retningslinjer-for-intensivvirksomhetnorge-23102014.pdf (nedlastet 01.11.2022).

      19.          Buanes EA, Kvåle R, Helland KF, Barratt-Due A. Norsk intensiv-  og pandemiregister. Årsrapport for 2021 med plan for forbetringstiltak. Bergen: Helse Bergen, Norsk intensiv- og pandemiregister; 2022. Tilgjengelig fra: https://helse-bergen.no/seksjon/intensivregister/Documents/%C3%85rsrapporter%20i%20NIR/NIPaR%20%C3%85rsrapport%202021.pdf (nedlastet 01.11.2022).

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      21.          Lee MD, Friedenberg AS, Mukpo DH, Conray K, Palmisciano A, Levy MM. Visiting hours policies in New England intensive care units: strategies for improvement. Crit Care Med. 2007;35(2):497–501. DOI: 10.1097/01.Ccm.0000254338.87182.Ac

      22.          Kvande ME, Angel S, Højager Nielsen A. «Humanizing intensive care: a scoping review (HumanIC)». Nurs Ethics. 2022;29(2):498–510. DOI: 10.1177/09697330211050998

      23.          Hart JL, Taylor SP. Family presence for critically ill patients during a pandemic. Chest. 2021;160(2):549–57. DOI: 10.1016/j.chest.2021.05.003

      24.          Garrouste-Orgeas M, Philippart F, Timsit JF, Diaw F, Willems V, Tabah A, et al. Perceptions of a 24-hour visiting policy in the intensive care unit. Crit Care Med. 2008;36(1):30–5. DOI: 10.1097/01.Ccm.0000295310.29099.F8

      25.          Boulton AJ, Jordan H, Adams CE, Polgarova P, Morris AC, Arora N. Intensive care unit visiting and family communication during the COVID-19 pandemic: a UK survey. Journal of the Intensive Care Society. 2021;23(3):293–6. DOI: 10.1177/17511437211007779

      26.          Andersson M, Nordin A, Engström Å. Critical care nurses' experiences of working during the first phase of the COVID-19 pandemic – applying the person-centred practice framework. Intensive Crit Care Nurs. 2022;69:103179. DOI: 10.1016/j.iccn.2021.103179

      27.          Soltner C, Lassalle V, Galienne-Bouygues S, Pottecher J, Floccard B, Delapierre L, et al. Written information that relatives of adult intensive care unit patients would like to receive – a comparison to published recommendations and opinion of staff members. Crit Care Med. 2009;37(7):2197–202. DOI: 10.1097/CCM.0b013e3181a03063

      28.          Rose L, Yu L, Casey J, Cook A, Metaxa V, Pattison N, et al. Communication and virtual visiting for families of patients in intensive care during the COVID-19 pandemic: a UK national survey. Annals of the American Thoracic Society. 2021;18(10):1685–92. DOI: 10.1513/AnnalsATS.202012-1500OC

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      30.          Kynoch K, Coyer F, Mitchell M, McArdle A. The intensive care unit visiting study: a multisite survey of visitors. Aust Crit Care. 2021;34(6):587–93. DOI: 10.1016/j.aucc.2021.01.007

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    • Prison nurses’ experiences with the cooperation with the specialist health service and GPs on opioid agonist treatment (OAT)

      Bildemontasjen viser tabletter, et fengselsvindu og en eldre mann på en rullator som snakker med en sykepleier

      Introduction

      Opioid agonist treatment (OAT), as a form of drug-assisted rehabilitation, is provided by the specialist health service at the various hospital trusts. In Norway, OAT is an outpatient service for interdisciplinary specialised treatment for substance use disorders (known as SUD treatment) (1, 2).

      As of 31 December 2021, 8099 patients had received OAT (3). Although OAT has had a crime-reducing effect since its introduction in 1998 (4), many OAT patients regularly serve time in Norwegian prisons. In 2016, 10% of prisoners in Norway were receiving OAT (5).

      Prisoners with drug-related challenges, particularly those receiving OAT, have complex health-related problems that include psychosocial, behavioural and financial issues, lower levels of education and employment, reduced quality of life and increased morbidity and mortality due to illness, overdoses and suicide risk (6–9).

      Various studies show a very high risk of overdose and suicide in the first week after being released from prison. The risk of overdose in this period is 90% higher than in the third week after release (10, 11).

      The OAT service providers are part of a tripartite cooperation together with the primary care service and general practitioners (GPs). The tripartite cooperation forms the basic OAT model (1). This tripartite cooperation has been continued in the new national clinical guidelines on opioid agonist treatment, hereafter called the OAT guidelines (2). These guidelines describe how the specialist health service and the primary care service must work together in shared responsibility teams when patients need long-term, coordinated services. There should also be a large degree of service user involvement.

      The Norwegian Directorate of Health’s guide on health and care services for prisoners (Helse- og omsorgstjenester til innsatte i fengsel) (12) emphasises that the prison health service can refer patients for and initiate substitution treatment, as well as care for OAT patients who are already receiving treatment. The prison health service must follow up and care for OAT patients in consultation with the specialist health service.

      However, it is the specialist health service that is responsible for assessments, maintenance, escalation and de-escalation and, where appropriate, termination of the medical treatment. It must also carry out investigations and other specialised treatment in the prison in close cooperation with the prison health service (12). Interdisciplinary and inter-agency cooperation is considered crucial here for providing a high standard of OAT during the patient’s prison term and for preventing overdoses and suicide after release (2, 7, 9–11).

      In the Norwegian context, some research has been conducted on OAT in prisons (6, 8, 10, 11, 13–15), but none of the studies have so far explored the coordination between the prison health service and the OAT service. We therefore have little evidence-based knowledge about how the tripartite cooperation works in practice with this patient group.

      Studies on health service coordination in general that have a relevance to prison-based OAT highlight various factors that foster coordination (16–19): successful cooperation is dependent on sharing knowledge and information about the professional practice of the coordinating partners, a shared understanding of which problems need to be addressed, as well as physical meeting places where relationships can be established across organisations and levels (18, 20, 21).

      Iversen and Hauksdottir (16) point out that cooperation across organisational boundaries is often difficult to achieve due to cultural differences and a lack of familiarity with partners’ competence, working methods and challenges. Other factors that can prevent good cooperation include not understanding the different terms, jargon and knowledge base used by other professions (17). Pedersen (19) refers to another important prerequisite for successful cooperation, namely time. The paradox of the time aspect is that establishing cooperation is time-consuming but that it saves time in the long run.

      Purpose of the study

      Effective cooperation between the OAT service and the prison health service is crucial for being able to offer patients a high standard of appropriate OAT in prison, with the proper and correct medication combined with psychosocial rehabilitation. In everyday life in incarceration, prison nurses play a key role in the follow-up of OAT patients. The purpose of this study was therefore to explore the prison nurses’ experiences with the cooperation with the OAT service and the OAT therapists.

      In this article, we address the following research question:

      ‘What are prison nurses’ experiences with the cooperation with the specialist health service and GPs regarding OAT patients in prison’?  

      Method

      The study has a qualitative design with an inductive approach (22, 23). The data collection method was semi-structured individual interviews with open-ended questions.

      Organisation of the OAT service providers

      The OAT service provision is differentiated across the various hospitals, which constitutes a central context for the study. In some hospital trusts, the OAT service is co-located with the district psychiatric centre, while other hospitals provide this in their SUD outpatient clinics. Responsibility for OAT is typically left to GPs in some regions. In 2021, the proportion of patients who were prescribed OAT medication by their GP was 35%. The OAT service providers are arranged according to six organisational models (24).

      Prisoners are often transferred between different prisons, and they often serve their time outside their home municipality. The health trust in the health region where the prison is located must ensure that OAT patients in prison receive the medicines that form part of their OAT (25).  

      Sample

      Prison nurses in seven different prisons in two regions of the Norwegian Correctional Service were invited to participate in the study. We contacted managers of the prison health service in the relevant municipalities and informed them of the study. All managers showed interest and were sent an information letter. The managers in turn informed the nurses in their department about the study. Nurses who were interested in taking part then contacted the first author for further information.

      The inclusion criterion was a minimum of three years’ experience as a prison nurse. Registered nurses were chosen as informants in this study as they play a key role in OAT for prisoners. We chose nurses with at least three years’ experience to ensure that they had had sufficient contact with OAT patients in prison and gained enough experience in treating this patient group to be able to answer the interview questions.

      Nine prison nurses participated in the study. The sample consisted of seven women and two men with an average of 13 years of experience working in prisons. High-security and low-security prisons as well as prisons for men and prisons for women were represented in the sample. The prisons cover a wide geographic area and vary in size, from a dozen inmates up to a few hundred.         

      Interviews

      The first author conducted the interviews in the period September 2020 to January 2021. Two of the interviews were conducted outside prison because visitor restrictions were in force due to the COVID-19 pandemic.

      The themes in the interview guide were divided into prison nurses’ experiences with 1) pharmacological therapy, and 2) the rehabilitation of prisoners receiving OAT. Cooperation between the prison health service and OAT therapists proved to be an important topic that the nurses had gained a lot of experience with. We therefore amended the interview guide (22, 23) in order to explore the topic of cooperation between the prison health service and the OAT service. Questions in the interview guide included: ‘What are your perceptions of the cooperation with the OAT service?’ and ‘What is your experience of working with different OAT service providers?’. See Appendix A.

      Audio recordings were made of the interviews and they were transcribed verbatim immediately after the interview (22). The interviews lasted from 25 minutes to almost two hours.  

      Data analysis

      The first author worked with the article’s co-authors on the data analysis. We used Johannessen, Rafoss and Rasmussen’s (26) version of thematic analysis, which is based on Braun and Clarke (27). This version involves a 4-phase analysis, in which the first phase entails obtaining an overall impression of the data. After transcribing the interviews, the first author reviewed the text several times, and this was then summarised, with important words and statements being highlighted.

      In phase two, the data were coded and salient points noted. We used mind maps and schematic representations to identify connections and combinations. We highlighted different themes using a variety of colours and codes.

      In the third phase, we categorised and sorted the data into different themes after testing out and changing the categorisation several times. ‘Cooperation’ was one of the main themes, and through the analysis we identified three related subthemes: 1) Little communication between OAT therapists and the prison health service, 2) Little focus on rehabilitation, and 3) Major variations between the OAT service providers. In the fourth and final phase, we described the themes in the results section of the study (26). See Table 1.

      Table 1. Analysis process

      Research ethics and data protection

      The study was recommended by the Norwegian Centre for Research Data (NSD), reference number 403074, and approved by the ethics committee at the Faculty of Health and Sport Sciences, University of Agder, reference number RITM0075475.

      When recruiting participants, we informed them that participation was voluntary. Before the informants signed the informed consent form and prior to the interviews, we explained that the participants could withdraw from the study at any time.

      The data were stored in an anonymised form on a private computer with a code lock. The audio recordings were deleted after they were transcribed.

      Results

      Little communication between OAT therapists and the prison health service

      The prison nurses found that there was generally little dialogue with OAT therapists, and that they were normally the ones to contact the OAT service. Conversations with OAT therapists with a view to sharing information about treatment and discussing patients were rare.

      The prison nurses expressed a need for more dialogue with OAT staff throughout the patient’s prison term – not solely when arranging prescriptions at the start of their sentence. It was also difficult for the nurses to understand why the OAT doctor and therapists failed to involve the prison health service in the assessments of changes to medication, as the nurses believed they could have provided useful information here. One of the prison nurses explained it as follows:

      ‘I wish the health department had been more involved in the assessments, because we’re the ones who see them. And it’s obviously not easy to establish whether someone is abstinent or not getting enough medication, but we can at least see how they’re functioning day to day’. (Informant 3)

      When the OAT team decided to change a patient’s dosage, the prison nurses found that the communication about this varied. Some nurses found that the OAT therapist rang the health department in the prison to inform them. Others were informed by the patient and had to contact the OAT service themselves to obtain the necessary information, or they found that all of the information was given in writing. One prison nurse considered there to be an absence of dialogue, and expressed this as follows:

      ‘I tend to have very little to do with the local OAT offices. We usually receive orders that they’re to have a certain dose of such and such a medication, in some form of writing. And that’s it. And if there is any change to be made, we’re also notified of that in writing’. (Informant 4)

      The prison nurses often contacted the OAT staff if the guidelines were breached when medicine was being dispensed. This often entailed the ‘cheeking’ of medication, where prisoners would pretend to take their medicine, which they found was a major challenge. Several prison nurses found that OAT staff did not listen to their feedback when patients pretended to take their medication. They expressed frustration about the lack of interest and commitment to OAT in such cases:

      ‘Yes, we often call OAT staff, and ask if we should de-escalate the medical treatment, if we should halve it, but’s the OAT team that decides. There are often few consequences. Sometimes we have to take it up with the prison doctor [...] It would be irresponsible to continue on the full dose if they’ve been pretending to take it for a long time’. (Informant 3)

      The nurses felt there was no understanding of the difference between prison-based OAT and OAT outside the prison walls, which one of them expressed as follows:

      ‘It sort of feels like we’re too much in our own bubbles. That OAT on the outside is something completely different from OAT inside the prison. Because I feel that they don’t understand us, and I don’t understand them. I try, but I don’t think I’ve succeeded.’ (Informant 6).

      This lack of understanding partly related to the fact that the ‘cheeking’ of medication can lead to other problems in a prison context. The nurses felt that they had a major responsibility for the OAT patients, but also for other prisoners who could get access to OAT medication in prison, and the consequential risk of overdosing or developing an opiate addiction during their prison term. In order to provide the highest possible standard of OAT in prison, the prison nurses called for meeting points with the OAT service, so that they ‘could share experiences and perhaps understand each other better’. (Informant 9)

      However, one of the prison nurses in the sample stood out from the others when she described the regular, good dialogue she had with the local OAT service provider. The nurse felt that OAT therapists showed an interest and got involved, and believed that this was due to good working relationships, a low threshold for two-way communication and the short physical distance between the prison and the OAT service provider.

      Little focus on rehabilitation

      Several prison nurses felt that OAT therapists were more concerned with medical treatment and paid less attention to rehabilitation, which is also a component of OAT. The nurses believed that because it is easier to establish contact with patients in prison this facilitates the initiation of rehabilitative measures. In addition, their physical and mental health is often better than it is outside prison:

      ‘Being in prison facilitates a variety of things, a lot of things can be initiated. I think it would have been a golden opportunity for OAT, not least, which will get the patient back’. (Informant 7)

      Another nurse felt that OAT had changed over the years. OAT therapists used to be more accessible in prisons for conversations and meetings with inmates and prison nurses. It now seems that the OAT service has left the treatment of prisoners to the prison nurses. The little contact there was related to medication:

      ‘They are the ones responsible. I can’t remember the last time they came through the doors here. It’s as if they have distanced themselves. We seem to live in our own little bubble in here, and do what we’re told. So in the past, I think we had a much […]. Perhaps OAT had more stringent legislation to comply with, because it was easier to work together’. (Informant 9)

      Major variations between the OAT service providers

      The prison nurses felt it was sometimes challenging to deal with the various OAT service providers, as the OAT service is differentiated across the various hospitals. The nurses found that obtaining a prescription can be a major challenge when the prison health service is not given information prior to the start of a patient’s prison term. This was particularly difficult when the patient came from another part of the country.

      The prison nurses said it was easier to deal with the local OAT service provider than OAT service providers in other regions, and that it was almost impossible to establish contact with the GP who was responsible for the patient’s treatment. The nurses found that the GPs renewed prescriptions without communicating with either the prison health service or the patient:

      ‘We rarely talk to a GP who asks how things are going and such like. I don’t think I've ever experienced that. They just write the prescription.’ (Informant 9)

      Several prison nurses felt that the quality of the relationship with the OAT therapist determined the cooperation:

      ‘It depends a bit, really. I often feel it depends on who the OAT consultant is, how the cooperation goes’. (Informant 2)

      The prison nurses would like to have seen a more uniform practice between the OAT service providers and the OAT therapists, with clearer guidelines as a premise for cooperation in relation to the patients:

      ‘I think more guidelines are needed, and for them to actually have to come and see them, what they look like, before escalating or de-escalating. I also think that OAT really needs to be less differentiated’. (Informant 3)

      The prison nurse who thought that the cooperation with OAT therapists was good believed that a crucial factor in this was the small size of the prison and the OAT service provider’s low staffing level. When fewer people were involved in the cooperation, it was easier to establish good relationships and routines for cooperation.

      Discussion

      The findings of the study show that little communication, little focus on rehabilitation and a differentiated OAT service make cooperation a challenge for the prison nurses and the OAT therapists. In addition, OAT as a therapeutic technique is demanding.

      Gap in the understanding of each other’s work and responsibilities

      The lack of a shared understanding expressed by the prison nurses may indicate that the OAT service and the prison health service have little knowledge of each other’s work and responsibilities. The specialist health service has delegated OAT to the prison nurses. The prison nurses express a need to work together more with the OAT doctor and therapists to discuss challenges and share experiences. They felt there was a great need for more knowledge and mutual understanding. The prison nurses felt that they were largely alone in their responsibility for OAT.

      The study by Elstad (18) found that the mutual sharing of information provides an overview that enables those involved to see themselves as part of a larger whole and feel more reassured in the work situation. This kind of information sharing was something the prison nurses felt was missing. We can also relate our findings to what Iversen and Hauksdottir (16) say about cooperation: cooperation across organisational boundaries is challenging, and cultural differences can be a factor.

      The prison nurses in our study found that OAT staff did not fully understand the challenges of OAT in the prison context. This was particularly evident in the ‘cheeking’ of medication. Several prison nurses were frustrated because their concern about the risk of prisoners developing an opiate addiction or overdosing was not taken seriously by the OAT therapists.

      The Coordination Reform was intended to guarantee a good health service provision for patients with a need for coordinated services (28). In order to achieve this, one of the main goals was to foster coordination between the primary care service and the specialist health service (16). The new OAT guidelines specify that the specialist health service and the primary care service are required to work together to provide patients with integrated and coordinated health care services (2).

      Under the Coordination Reform and the OAT guidelines, the occupational groups involved in the care of a patient have a responsibility to work together. Nevertheless, our study of prison-based OAT suggests that this does not work well enough in practice. The prison nurses found that the OAT therapists took little initiative to start dialogues and organise collaborative meetings, and they generally felt that OAT staff show little interest in patients in prison.

      Poor cooperation – a question of limited resources?

      What the prison nurses consider poor cooperation can also be viewed in the context of the resource and staffing situation in the specialist health service. OAT therapists need to follow up more patients than before (3), the requirements for documentation are more demanding and the deadlines are shorter (29). It is uncertain whether the resources of SUD treatment providers have been increased in line with the growing number of patients. The closure of seven low-security prisons in recent years may have led to more OAT patients serving their prison terms in locations that are further away from their local OAT service provider (30).

      A study from 2018 (19) argues that time is a key factor in successful patient-oriented work. Developments in the OAT service and the Norwegian Correctional Service may have led to further time constraints. The lack of in-person meetings between OAT therapists and prison nurses, as demonstrated in this study, can be understood in such a light. In-person meetings are more time-consuming than alternative forms of communication. Previous research, however, suggests that in-person meetings are a key component in fostering trusting and positive collaborative relationships, and they also promote conflict prevention (18).

      Differentiated OAT service: a challenge to cooperation

      The final factor that can improve the understanding of the lack of cooperation is the differentiated organisation of OAT service providers and the organisation of SUD treatment for patients in prison. Our study suggests that some prison nurses have difficulties in finding the right OAT therapist for new prisoners. When GPs are responsible for treatment, this provides a clearer overview of the situation from the prison health service’s perspective. The challenge with the organisation, however, is that the prison nurses find it difficult to establish a good dialogue with the GPs.

      Furthermore, it is the health trust in the health region where the prison is located that has the duty of care for OAT patients. This means that OAT patients are often the responsibility of the prison’s local OAT service provider during their prison term and a different one after their release. The differentiated organisation of the OAT service providers and the fact that some prisoners are transferred to other prisons several times during their sentence make it difficult to establish good cooperation between the patient, the prison nurse and the OAT therapist.

      Since the data were collected for the study, the Ministry of Health and Care Services has established a dedicated function for SUD treatment for prisoners. This function is viewed as a strengthening of prison health services within SUD, and the expectation is that permanent local health services will be established in most prisons. The background for the initiative was the highly differentiated organisation of the service throughout Norway and the limited access to equal treatment for prisoners (31). Whether this initiative will help to solve some of the cooperation challenges between the prison health service and OAT/SUD treatment should be a prioritised research question going forward.

      Method discussion

      One of the strengths of the study is that the nine prison nurses represent seven prisons of different sizes and security levels; the sample is broad, varied and diverse. This suggests that the findings are transferable to other contexts and prison nurses. However, we cannot know with certainty whether the experiences of the informants are representative of the experiences of prison nurses in other prisons.

      The study may provide increased understanding and insight into the prison nurses’ experiences with the coordination with OAT staff. The broad consensus of the sample that the cooperation with the OAT service is lacking makes it reasonable to assume that the study’s results can be valid in similar contexts.

      One of the limitations of the study is that the coordination is only analysed from the prison nurses’ perspective, without exploring the experiences of either the OAT therapists, other occupations working in prisons or the prisoners themselves. As the data were collected during the COVID-19 pandemic, we cannot rule out the possibility that the study’s findings were impacted by the sometimes strict infection control restrictions.

      Conclusion

      The aim of this study was to explore the coordination between the OAT service and the prison nurses. The prison nurses considered there to be little communication between the parties, and the communication was normally in writing or in the form of brief telephone calls about changes to medication. The prison nurses wanted more support from OAT staff and would like to see more meetings held in the prison to build relationships and establish coordination.

      The differentiated organisation of OAT service providers, the challenges of establishing contact with the GPs, the OAT service providers and the therapists, in addition to multiple transfers of prisoners during their sentences, seemed to make it difficult to establish good cooperation.

      OAT patients in prison have the same rights to health care and to follow-up as the rest of the population. The lack of cooperation can result in the subpopulation of prisoners not receiving the necessary interdisciplinary and interagency coordination of their OAT.

      Insufficient coordination can lead to a lower standard of treatment and a higher risk of adverse outcomes during the patient’s time in prison and after release. The Coordination Reform, aimed at improving the coordination across levels in the health service, and the OAT guidelines, aimed at fostering tripartite cooperation, do not seem to work in practice for the OAT patients in prison in this study.

      We propose establishing dedicated systems in order to improve coordination, in line with the OAT guidelines, regardless of how OAT is organised. More research is needed to shed light on cooperation from the perspective of OAT staff. Not least, OAT patients’ experiences should be explored to gain a different perspective on the coordination in relation to OAT patients in prison. Another important research question is how the coordination between SUD treatment providers and the prison health service works after the introduction of a dedicated function for SUD treatment in prison.

      The authors declare no conflicts of interest.

      Peer-reviewed article
      Publication type
      Publication Year
      2023
      Edition Year
      18
      Publication Number
      91849
      Page Number
      e-91849

      Drug users who were virus-free after treatment for HCV found it easier to get to grips with their drug addiction.

      Article is Peer Reviewed
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      Research
      English
      Sammendrag

      Background: Opioid agonist treatment (OAT) is provided under the auspices of the specialist health service, and since it was introduced in 1998 has had a crime-reducing effect. However, many OAT patients regularly serve time in Norwegian prisons. In order for this patient group to receive the appropriate OAT in prison, good cooperation is required between OAT staff and the prison health service, where the patient should also play an active role in their rehabilitation. A lot of research has been conducted on health service coordination, but the coordination between the prison health service and the OAT service is an under-researched topic.

      Objective: To explore prison nurses’ experiences with the cooperation with OAT staff.

      Method: The study has a qualitative design with an inductive approach. The data were collected in semi-structured, individual interviews. We performed a thematic analysis of the data, based on Johannessen, Rafoss and Rasmussen’s version of Braun and Clarke.

      Results: The main findings of the study show that the prison nurses find the coordination with the OAT service challenging for the following reasons: there is little communication, sharing of information or mutual understanding between the prison health service and OAT staff. Limited resources and the physical distance between the OAT service providers and the prisons can lead to prisoners not being prioritised by OAT staff. The prison nurses perceive there to be major differences between OAT service providers in terms of how the cooperation works, and finding the right OAT therapist is not easy. It is particularly challenging when the GP is responsible for the patient’s treatment.

      Conclusion: The study shows that prison nurses at several prisons in Norway consider there to be a lack of tripartite cooperation on prisoners requiring OAT. The OAT guidelines encourage tripartite cooperation, but this does not seem to work in practice. Consequently, patients receiving OAT in prison do not always receive the necessary follow-up stipulated in the OAT guidelines.

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      • Coordination between actors in the health service is generally recognised as challenging. There does not appear to be any research that examines the coordination between the prison health service and the opioid agonist treatment (OAT) service.
      • To explore the coordination between the prison health service and OAT staff, we used a qualitative design with semi-structured individual interviews, where the participants shared their experiences.
      • The study shows that prison nurses experience little coordination with OAT staff. The consequence of this may be that OAT patients in prison do not receive adequate healthcare follow-up. Furthermore, more research is needed that sheds light on the experiences of OAT patients in prison with the OAT service. Good cooperation is important for ensuring that OAT patients in prison receive the necessary treatment and follow-up.

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    • Registered nurses’ experiences of working with suicidal patients

      Bildet viser en fortvilet mann som blir trøstet av en dame. Mellom dem skimtes en grønn sløyfe, symbolet for mental helse

      Introduction

      Each year, approximately 650 people take their own lives in Norway (1). The experience of having a patient take their life or attempt suicide during a stay in a psychiatric ward will have an impact on most registered nurses (RNs) in their interactions with this patient group (2).

      It is demanding to have responsibility for a patient that requires extra follow-up and, in some cases, tracking or continual observation (3). RNs have a key role in the care provided on the admission of patients, and can observe any changes in the patient’s condition on an ongoing basis during treatment (4).

      However, RNs must be able to regulate their own emotions and emotional expressions, as well as balancing their own involvement and distance to provide good care for suicidal patients (5). Interactions with patients require that RNs are capable and have necessary knowledge about suicide and its dynamics (6). They must be capable of assessing and observing the patient concerned, as well as having interpersonal skills in dealing with suicidal patients (7).

      Research shows that RNs who work with this patient group experience feelings such as anger, frustration, shame, guilt, fear, anxiety, panic, helplessness, depression, self-reproach (8), grief and emptiness (9), condemnation, inadequacy and fear of reprisals (10).

      The emotional reactions can lead to burnout (11), as well as a desire to stop working with suicidal patients (12). In the case of some RNs, working with patients who display suicidal behaviour and carry out suicide attempts can, in addition, constitute a threat to their own professional identity (13).

      Suicide and attempted suicide affect the practices and behaviour of the staff, and losing a patient affects RNs on both a professional and a personal level for a long time (14).

      RNs who experience that one of their own patients attempts suicide or takes their own life will, in some cases, have the same need for therapy and support as the patient’s family (11).

      Studies show that supervision and debriefing after a suicide or attempted suicide is key to preventing consequential injury that may result in sick leave (11). After losing a patient, the informal support of colleagues is essential (15). The work environment should be a place in which individuals can express their own feelings and reflections without being judged by others (16).

      Furthermore, nursing education programmes should provide training in assessing suicide risk, as well as procedures for dealing with suicide. A conciliatory inner dialogue on suffering that entails going back and reconciling previous thoughts, feelings and memories with the present can be a key coping mechanism for RNs who experience patient suicide (12, 13).

      Generally, it is the healthcare facility’s duty to enable staff to process emotional discomfort, to ensure that they can deal with the challenges surrounding suicide and continue to provide good care (17).

      Studies have shown how RNs are affected and what measures may help them after a suicide. Nevertheless, we have little information about how RNs use and acquire knowledge, whether they accept offers of supervision, and what they believe is lacking.

      Moreover, there is little research on RNs’ perceptions of how they are looked after when working with suicidal patients and how they carry these experiences with them into their future work. Against the backdrop of the downgrading of mental health care, the experiences and perspectives of RNs are central.

      Objective of the study

      The objective of the study was to examine how registered nurses are affected by their work with suicidal patients. We also wanted to examine the reactions experienced by RNs when working with suicidal patients, how they perceived that they themselves were looked after, as well as what they learned.

      Method

      Design

      We used a qualitative exploratory design and conducted individual research interviews with RNs who work in mental health care.

      Sample

      The interviews were carried out in the period from September to November 2020. We interviewed a total of seven RNs, but two of the informants chose to withdraw after the interviews had taken place. One male and four female RNs participated in the study. Of these five, two were studying to become specialist mental health nurses, while three were qualified specialist nurses. They ranged in age from 24 to 62, with an average age of 44.

      All of the informants who were interviewed work at the same hospital, but in different departments. The period of time that informants said they had worked with suicidal patients ranged from a couple of years up to several decades. We experienced data saturation related to the objective of the study.

      Even though two of the informants chose to withdraw after the interviews had taken place, the data from the other five interviews was rich enough to proceed with the project.

      Recruitment

      We contacted the clinical directors at three hospitals in south eastern Norway to request access to the relevant field of work, and we received a positive response from one of the hospitals. All heads of departments at the hospital concerned received a request containing detailed information about the study, recruitment tips, a poster to hang up in the department and a deadline for submitting relevant candidates.

      The heads of departments asked if there were any staff who would like to participate in the study, for example, at staff meetings and at morning meetings. Those who were interested were put in contact with the first author, who provided more detailed information. Then we contacted them to arrange a time to interview each individual informant.

      Implementation and data collection

      All of the informants wanted to be interviewed at the hospital where they worked. We used different interview rooms separate from the departments where they worked to protect informant confidentiality. The first author conducted all the interviews using a semi-structured interview guide, which was drawn up on the basis of previous research on the topic (4–18).

      The interviewer started by asking questions about whether the informant could tell us about incidents involving patients who had been at risk of suicide over a period of time, or about patients who had taken their own lives. We then proceeded to ask the following main questions:

      • How has having a patient at risk of suicide or losing a patient affected you as an RN and as a person?
      • What type of follow-up did you receive?
      • What kinds of reactions did or does this patient group arouse in you?
      • What experiences will you take with you?

      The interviews had a duration of between 46–121 minutes, with an average of 45 minutes. They were digitally recorded.

      Analysis

      The first author transcribed the interviews after they were carried out, and both authors together used Malterud’s (19) four-step systematic text condensation of the data. The first step involved gaining an overall impression of the transcribed material by reading through the text several times, as we noted down ideas. Table 1 shows an example of an excerpt from the data provided by an informant with colour coding of the text.

      Table 1. Example showing marking of the transcribed data

      During step 2, meaning units were constructed (19). The first author cut and pasted text that carried independent meaning in relation to the research problem and questions. The third step involved the first author identifying codes and illustrative quotes. In the last part of the analysis, we reconstructed the material we had gone through; this is called ‘recontextualisation’ (19). Table 2 shows an excerpt from the analysis process.

      Table 2. Excerpt from the analysis process

      Ethical considerations

      The study was submitted to and approved by the Norwegian Centre for Research Data (NSD) (reference number 652737). The participants received oral and written information about the study. They were informed that participation was voluntary, and that they could withdraw if they wanted to without having to give a reason. We obtained written consent.

      Confidentiality was protected by not conducting interviews at the individual’s place of work, and by storing the transcribed interviews on a password-protected PC in encrypted folders and deleting them after analysis had been carried out.

      Anonymity was protected throughout the study by replacing names and contact details with codes and storing these in a name list that was kept separate from the rest of the data. Only the first author had access to this list.

      The authors’ backgrounds and preconceptions

      The first author worked as an RN within mental health care at the same health facility as the informants, but not in the same departments and she did not know the informants beforehand. The second author is an RN and associate professor. Both have specialist training in mental health care, which forms part of their preconceptions.

      Results

      Through analysis, the following themes emerged: 1) Nursing competence; 2) Interpersonal relations; and 3) Coping with working with suicidal patients. We have chosen to give the informants pseudonyms.

      Nursing competence

      The RNs told us that they paid attention to and relied on their own feelings and experiences. Combined with professional knowledge, they used themselves as tools in interactions with suicidal patients. One RN recounted the following:

      ‘I must combine it with that, the experiences and feelings when these things in my body are activated, [...] often combined with my observations. Then something or other happens in my body that makes me think, “do this or do that, or initiate different measures”.’ (Kari)

      Kari claimed that in her interactions with patients, she used tools such as observation, as well as activating her own bodily knowledge and feelings. She further elaborated that she relied on research and literature in work with the patients, and claimed that ‘you yourself would be the ultimate tool in patient interaction’.

      Several of the RNs mentioned ‘bodily activation’ in the form of vigilance, alertness or gut instinct, which they believed should not be ignored. One RN used the term ‘scanning’ to get an impression of whether he could trust a patient. He elaborated on the term thus:

      ‘I have a feeling all the time that the patient won’t do anything because I have scanned [the patient] and the way they express themselves in words, the way they move, the whole thing. But it may well be that it’s a nursing thing, because you learn it gradually.’ (Ola)

      After the RN has scanned the patient, he gets an impression of how the patient is feeling, he takes in and observes body language, facial expressions, tone of voice and the words that are said.

      A number of patients struggle with hopelessness. In this context, an RN recounted creating an alternative space:

      ‘Suicidal patients need privacy, they shouldn’t have someone hanging over them all the time, you shouldn’t talk to them all the time, so you can go back and forth because – it’s incredibly intense to be in that space, so much of nursing is about creating alternative spaces, or spaces to be in so that life is endurable there and then.’ (Siri)

      In the alternative space, it is possible to give the patient faith that the treatment is working, even though it can seem invasive and you are divesting the patient of their autonomy. In addition, confidentiality and the use of humour were mentioned as key factors in milieu therapy with suicidal patients.

      Interpersonal relations

      All of the RNs emphasised the importance of colleagues and the support they received from those with whom they were on duty, with a low threshold for talking about uncertainty and challenging, terrible and positive experiences. One RN said:

      ‘What I take home with me is what my colleagues are struggling with. [...] I’ve put away what I’m struggling with.’ (Ola)

      The RN told us that over several years in the profession, he had developed routines for dealing with what happens in the course of a shift. He no longer takes his patient experiences home with him, but rather what his colleagues are struggling with.

      Another RN stressed that having detailed knowledge of each patient helped to establish a caring relationship, and that RNs give of themselves and are affected in a different way than they would otherwise be if they simply performed their duties in an instrumental manner:

      ‘It’s very demanding this stuff, but I must say that the better I get to know the patient, the more I go from being just a person who needs to cover my back to being someone who cares that you, in particular, make it through this, and that you, in particular, continue to live.’ (Siri)

      The RNs felt that it was difficult to have responsibility for weighing up the options and making choices:

      ‘You have to make some tough decisions about priorities: “Shall I drop that nursing round and say that it must be postponed for half an hour or an hour?” and think that that’s how it will be this evening because I have to be here now. Or should you leave it be, prod it a bit and perhaps come back again, losing that thread [...].’ (Solveig)

      The RNs were aware that they were there primarily for the patients. Nevertheless, it can be challenging to explain to patients why you are doing what you are doing since they are not familiar with everything that happens in a department.

      Coping with working with suicidal patients

      The RNs reported feeling that they would have liked more emphasis on knowledge development, supervision and debriefing, since working closely with people who are mentally ill affects them as nursing professionals. In addition, the RNs believed that they rarely sought supervision because their own experiences from challenging situations were not of sufficient importance for a supervision session, or because arrangements had not been made to enable them to have supervision.

      Furthermore, they claimed that there was rarely or never an offer of a briefing or debriefing after a suicide attempt. Some of them had a guilty conscience and felt doubt, and had thoughts like ‘we should have prevented’ the suicide. One RN expressed it like this:

      ‘Mental illness is difficult. It’s so individual, and [to] sit and assess and see and save, thinking that everybody must be saved, everybody should have a chance to see hope in life.’ (Solveig)

      For Solveig, the patients’ mental illnesses were challenging because they are personal, and because some patients cannot see any hope. Another RN also mentioned planting a seed of hope or carrying a patient’s hope for a few hours, even though it may have felt meaningless for some patients at the time.

      When the job is perceived as rewarding, demanding and complex, one RN emphasised the following:

      ‘The desire to work as a nurse is there, I think that it’s really enjoyable, of course, and that the motivation is there, but I think it’s more like I get despondent about psychiatry as a whole, and on their behalf, and that they get an awful lot of criticism, and that there’s never anything positive.’ (Kari)

      Furthermore, several informants pointed out that you cannot measure whether you are doing a satisfactory job, especially in relation to assessing suicide risks. They described uncertainty linked to whether a suicide could have been prevented, but at the same time, they had built up self assurance based on experience that helped them to make the right decisions.

      One RN emphasised the importance of collegial support after a patient took their own life just after being transferred to another hospital. The consultant invited the RN to a review and reflection on whether they could have done anything differently. They concluded that ‘it was actually [the patient’s] choice, and the person concerned should be allowed to take ownership of that.’ (Siri)

      Another RN also took up the issue of how to know if you are doing a good job in interactions with patients. Ola pointed out that he cannot do anything about the patient’s condition or situation, but to be able to say to yourself that ‘I had a good conversation with the patient’ makes it easier to continue in the profession.

      Discussion

      Coping with a demanding job

      One of the main findings in the study was that the informants relied upon their own feelings in the form of gut instincts in interactions with patients for whom they were responsible. RNs develop a clinical eye (20) or intuition, while they also use knowledge built up on the basis of suicide risk assessments (21). However, finding a balance between trusting your own judgement and knowing when to ignore gut instincts is described as being difficult by our informants, especially for those who are newly qualified.

      RNs must also be capable of holding conversations with patients without being emotionally overwhelmed. Moreover, RNs should not transfer what they are feeling, for example, in their interactions with patients (22), but strive to maintain a distance to their own experiences in patient interactions and behave like professionals (23).

      Through working with suicidal patients, RNs gain an insight into the patients’ inner lives that the patient may not necessarily share with others. RNs should acknowledge the patient’s will to live or die (4) and, at the same time, attempt to understand the patient’s existential pain (7, 23).

      The informants said that the work they do is not measured, while one RN found a sense of comfort and reward in conversations with the patients. Supervision is intended to provide an opportunity to get to know yourself, to develop on a professional and personal level and be able to reflect over your own practice (24).

      However, RNs found that they did not have the opportunity to receive supervision, which could hinder them from working through their impressions and reactions. In order for RNs to maintain a belief in themselves as competent professionals (17), as well as to look after their own needs after a suicide (25), it should be a priority for employers to offer debriefing and supervision, in our opinion.

      In addition, RNs should establish self preservation or coping strategies (26). It is possible that some of the RNs who have not established such strategies will react in the same way as patients’ families. When a crisis occurs, the sense of time will cease for some people, while others will experience a state in which they ‘freeze’ or experience affective stupor (27).

      The consequences of working with suicidal patients manifest as bodily reactions, guilt feelings, anxiety, depression and PTSD symptoms, according to the literature (8, 13–14, 18, 26). Moreover, Hofmann (28) claims that such work can threaten both physical and mental well-being, in addition to restricting reality.

      Dyregrov (26) places emphasis on the need to practise or run through potential outcomes, as well as how one should react, in order to be able to respond to new crises in the best possible way. RNs also need to be reminded about the reactions that can arise after a crisis or traumatic event, and be given the opportunity to work through these together with colleagues (29).

      Such follow-up can lead to increased solidarity and support, as well as enhancing understanding of their own reactions. Furthermore, it can make it easier to deal with future incidents (26).

      The valuable collegial fellowship

      The informants thought it was demanding to work with people who are mentally ill. However, they stressed that collegial fellowship was valuable in providing support and for working through challenging situations.

      People who have experienced a crisis need to be met with consideration, understanding, respect and a safe environment (30). They must be given the opportunity to work through and deal with difficult emotions. Research also shows that, in particular, the informal support provided by colleagues, as well as the opportunity to vent feelings, is invaluable – especially when you have lost one of your patients to suicide (7, 8, 30).

      Additionally, Wasserman (25) claims that the purpose of formal, emotional collegial support is to enhance RNs’ professional development by integrating newly attained knowledge after a suicide with previous knowledge and experience.

      ‘Moral stress’ is used in conjunction with RNs’ experiences with suicidal patients (17), which was also emphasised by our informants. It is understood to mean that what is expected of you is ethically demanding. For example, RNs may believe that taking your own life is wrong, but they also see how patients struggle to continue living. With increased demands for service user involvement, difficult dilemmas can arise at the time of discharge if service users disagree with therapists’ suggestions for further follow-up at home (31).

      Making decisions that are contrary to the RNs’ values, thoughts and convictions can lead to exhaustion and burnout (29). In regard to retaining RNs in their positions, preventing burnout is key, by fostering a working environment that promotes reflection and consideration, as well as being given support by the management (32).

      It is the duty of the workplace to help RNs and other personnel deal with work challenges in a healthy way, so that they can continue to provide good patient care. After a patient has taken their own life or attempted to do so, it is crucial that RNs have the opportunity to participate in debriefing, to enable them to regulate their own emotions and prevent feelings of guilt, shame and self-reproach (6, 10).

      In addition, debriefing will help the organisation to gain an insight into the incident and be able to learn from it (14). In other words, employers must facilitate emotional and professional development in the form of immediate debriefing, as well as individual and group supervision. RNs must also be given training in suicide risk assessment, so that absenteeism and high staff turnover can be prevented (11).

      This view is supported by Vråle and Drangsholt (24), who stress that supervision can contribute to increased ability to cope with the job, enhanced ability to deal with stress, as well as counteracting the feeling of being alone when making vital decisions. In this way, wear and tear and reduced work motivation can be countered. Organisations should also ensure that RNs have sufficient competence in supporting the families of patients in conjunction with a suicide or attempted suicide.

      Strengths and weaknesses of the study

      The informant group was relatively homogeneous, consisting of four women and one man. However, there was a good variation in age, ranging from people in their twenties up to those in their sixties. Some were beginning their careers while others were approaching the end of their working life. This indicated that the informants had very different and varied experience. Four of the informants were ethnic Norwegians while one came from another European country.

      Two of the informants withdrew after the interviews had been carried out. However, these interviews did not bring anything more to light than the other interviews that were included. The number of informants was considered sufficient because we achieved saturation under way.

      Furthermore, validity was enhanced by trying out the interview guide in two pilot interviews with nursing colleagues. The first author carried out the bulk of the work in the analysis process, while a reflexive approach was ensured throughout the entire research process by open discussion between the authors.

      Conclusion

      The informants in this study used themselves and their own bodies as tools when assessing the risk of suicide. Furthermore, they developed a clinical eye and created arenas in which the patients could share vulnerable and oppressive feelings and thoughts. They also experienced moral stress, in which informal collegial support was vital.

      Nevertheless, they felt that their opportunities for debriefing, supervision and acquiring knowledge were inadequate. This highlights the employer’s duty to facilitate this kind of care for the staff to prevent burnout and high staff turnover.

      The authors declared no conflicts of interest.

      Open access CC BY 4.0.

      Peer-reviewed article
      Publication type
      Publication Year
      2023
      Edition Year
      18
      Publication Number
      91895
      Page Number
      e-91895

      Their everyday working situation exposes them to intense impressions, but they often choose not to seek supervision.

      Article is Peer Reviewed
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      Innsendte kommentarer kvalitetssikres før publisering. Kvalitetssikringen skjer i vanlig arbeidstid.
      Research
      English
      Sammendrag

      Background: Each year, approximately 650 people take their own lives in Norway. Registered nurses (RNs) have a key role in the care provided to patients admitted after a suicide attempt. RNs must be able to regulate their own emotions and emotional expressions, as well as balancing their own involvement and distance to ensure good care for suicidal patients. The emotional reactions experienced by RNs can lead to burnout, as well as a desire to stop working with suicidal patients.

      Objective: To examine how registered nurses who work with suicidal patients are affected. We also wanted to examine the reactions experienced by RNs when working with patients at risk of suicide, how they perceived that they themselves were looked after, as well as what they learned.

      Method: This is a qualitative study in which the data have been obtained from individual, semi-structured interviews. The informants are five RNs, three of whom were specialist nurses and two who were in the process of specialising.

      Results: One of the main findings was that the RNs relied upon their own feelings in the form of gut instincts in interactions with patients for whom they were responsible. The RNs were exposed to intense impressions in their everyday working situation, in which their patients experienced hopelessness, existential pain, a lack of privacy and autonomy, and some actually took their own lives. Nevertheless, the RNs often decline offers of supervision.

      Conclusion: The informants in this study used themselves and their own bodies as tools when assessing the risk of suicide. Furthermore, they developed a clinical eye and created arenas in which the patients could share vulnerable and oppressive feelings and thoughts. They also experienced moral stress, where informal collegial support was vital. They felt that there were inadequate opportunities for debriefing, guidance and increasing knowledge. This finding highlights the duty of the employer to facilitate the care of the staff, to prevent burnout and high staff turnover.

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      The photo shows a despaired man being comforted by a woman. Between them there is a green ribbon, the symbol of mental health
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      • Suicide is considered to be a public health problem. For every suicide, it is estimated that there are at least 10 individuals who are surviving family members and affected parties. Losing a patient will provoke similar reactions in RNs to those experienced by the patient’s closest family members.
      • We conducted five interviews with RNs concerning their experiences with patients who had been at risk of suicide over a period of time, or with patients who had taken their own lives.
      • RNs and other healthcare personnel who work with this patient group find that workplaces vary in their follow-up. The study shows that the consequences can differ for each individual RN, but that the impressions and experiences affect them in their work.

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      11.       Aharon AA, Fariba M, Shoshana F, Melnikov S. Nurses as ‘second victims’ to their patients’ suicidal attempts: a mixed‐method study. J Clin Nurs. 2021;30(21–22):3290–300. DOI: 10.1111/jocn.15839

      12.       Caputo A. Telling a complicated grief: a psychodynamic study on mental health nurses’ countertransference reactions to patients’ suicidal behavior. Archives of Suicide Research. 2021;25(4):862–75. DOI: 10.1080/13811118.2020.1768990

      13.       Türkleş S, Yılmaz M, Soylu P. Feelings, thoughts and experiences of nurses working in a mental health clinic about individuals with suicidal behaviors and suicide attempts. Collegian, Australian College of Nursing. 2018;25(4):441–6. DOI: 10.1016/j.colegn.2017.11.002

      14.       Matandela M, Matlakala MC. Nurses' experiences of inpatients suicide in a general hospital. Health SA Gesondheid. 2016;21:54–9. DOI: 10.4102/hsag.v21i0.934

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    • ‘Not purely blood.’ Women’s use of metaphors in relation to medical abortions

      Fotomontasjen viser et glass med piller og en kvinne som ligger i fosterstilling i senga

      Introduction

      Elective abortion is regarded as a common right in many countries, including Norway. However, the decision to have an abortion is a complex and complicated one. Abortion is a political issue and the abortion debate is often focused on moral and ethical questions.

      The language used can be offensive to women, especially when hard battle lines are drawn on both sides of the abortion debate, as in a recently published article about language use in the debate between pro- and anti-choice lobby groups in Ireland (1) and in the corresponding debate in the United Kingdom (2). The discussions are often focused on feelings and things that are not directly observable.

      Studies have shown that metaphors are useful for expressing things that are not directly observable, but nevertheless may be real feelings or bodily experiences (3, 4). In abortion debates, it may be the debaters’ moral judgements that emerge through the use of metaphors.

      In the Norwegian context, Merete Flatseth has analysed the principal conceptions of women in the abortion debate. She found that politicians used metaphors such as women’s fractured health and that they described women’s minds as porous objects. According to her evaluation, these metaphors helped to give women sufficient ethical justification to have an abortion (5).

      However, few studies have been conducted on women’s own use of metaphors in relation to abortion. There is a particular lack of studies focusing on women’s use of metaphors in relation to medical abortions.

      Metaphors are being used increasingly as a ‘tool’ in health service interventions. This study provides an opportunity to explore which metaphors women use about their own experiences of medical abortion (3). A common definition of a metaphor according to the cognitive-behavioural tradition is that it ‘describes something by referring to something else’ (6).

      Metaphors can help in understanding patients’ symptoms and reactions, and motivate them to seek care (4, 7). Metaphors are useful for expressing things that are not directly observable, but nevertheless are perceived as real experiences or bodily experiences. Consequently, metaphors can provide insight and information about significant experiences and patients’ need for support and assistance (4, 7–9).

      On the basis of other studies (4, 10, 11) on the experiences of patients and their family members, we want to shed light on women’s experiences in carrying out abortions in their own homes.

      This study is a secondary analysis of existing data from an article that was published in 2022 (12). Our study is divided into three parts and is structured around the following research questions:

      1. Which metaphors do women use about their encounters with the health service before and after an abortion?
      2. Which metaphors are used in relation to the process itself?
      3. Which metaphors are used to describe the embryo/fetus?

      Method

      As mentioned, the study is a secondary analysis (13, 14) of existing data from a qualitative study based on individual interviews, conducted in the period 2019 to 2020 (15). The informants were recruited via various relevant channels. The inclusion criteria were that the women must have experienced a medical abortion at home, and the abortion must have been carried out before the twelfth week of gestation.

      The sample consisted of a total of 24 informants aged between 24 and 45. The marital status of the informants varied, although this issue was not raised in the interviews. There were representatives from most parts of the country. In this article, a secondary analysis is carried out of existing data in order to study the metaphors women use to discuss their experiences of abortion. Further descriptions of the method are explained in the article by Sommerseth et al. (12).

      The interviews

      In the study by Sommerseth et al. (12), an interview guide with three open-ended questions was used:

      1. Can you tell me about your experiences of carrying out a medical abortion?
      2. Can you tell me about your experiences during the process?
      3. What kind of follow-up were you given after terminating the pregnancy?

      What is a metaphor?

      When we use a metaphor, we talk about something by referring to something else (6). A metaphor has two domains: the target domain and the source domain. The target domain is what we are talking about: for example, the feeling of being disparaged. The source domain is what we are comparing it to, for example, dirt.

      In the sentence ‘I felt like dirt’, the target domain is the feeling and the source domain is ‘dirt’, that is, the word you are using to describe the feeling. These two terms are useful in the work of identifying metaphors. We can say that a metaphor moves meaning from one meaning context to another.

      One method for identifying metaphors (16) is to begin by reading the entire text to gain an understanding of the content. Then the lexical units in the text are analysed, usually nouns, verbs, adjectives and adverbs and, in some cases, prepositions. An assessment is made as to whether the words and expressions act as units. Subsequently, it must be ascertained whether the words have a different meaning in other contexts, and whether this is in contrast to the basic meaning. If the answer is ‘yes’, the words are being used metaphorically.

      In carrying out the study, we used the Collins English Dictionary (17), which lists multiple definitions of words and expressions, including metaphorical meanings. For example, when we looked up the word cold, we found this definition: ‘cold weather, low temperature’. One of the definitions that follows is: ‘Unfriendly or unsympathetic attitude’.

      Here, we see that the dictionary first provides the literal meaning of ‘cold’ (low temperature), followed later by the metaphorical meaning (unfriendly). When a word has several meanings, the metaphoric meaning comes last as a rule. Table 1 shows the process of metaphor identification in several steps according to Steen et al. (18).

      Table 1. Metaphor analysis procedure

      In addition to registering metaphors at word level, we have identified metaphor signals or flags, which are often used to intensify or moderate metaphoric language (16).

      Examples of metaphor signals are words such as like, as, compared to, kindof, sort of,actually, quite simply and a bit. These are words that may introduce metaphorical expressions in a sentence, and they may be signs that the metaphors are intended as suggestions or negotiations of meaning. They may also be a sign that informants want to moderate or intensify their language or are searching for words and expressions that can adequately describe their experiences.

      Ethics

      The study followed the Declaration of Helsinki’s ethical principles (20). It was judged by the Regional Committee for Medical and Health Research Ethics (REK) to be outside their area of responsibility.

      The study was approved by the Norwegian Centre for Research Data (NSD) (reference number 22708). The informants received oral and written information about the study and they gave their written consent prior to being interviewed.

      Results

      Metaphors regarding encounters with the health service

      The main metaphors informants used when referring to their encounters with the health service are shown in Table 2. The source domain is the actual area in nature that the reference is taken from, and the target domain is the topic of discussion.

      Table 2. Metaphors regarding encounters with the health service

      Some of the informants felt that they had been well looked-after and followed up by the health service, by public health nurses, general practitioners and gynaecologists. They were described as willing to help, non-judgemental and highly supportive. They helped informants to see the way ahead and they saw the whole person.

      Others commented that they received little understanding or support. One of the most common metaphors in the data was cold. The atmosphere in the women’s encounters with the health service was described as ‘robotic’, ‘clinical’ and ‘ice-cold’.This was in reference to the healthcare system, not healthcare personnel. The system makes it difficult for healthcare personnel to know what to do when someone breaks down completely, as one of the informants expressed it.

      The metaphors related to ‘cold’, ‘robotic’, ‘clinical’ and ‘mechanical’ reflect the informants’ sense of feeling small or worthless, like dirt, as another informant expressed it.

      The informants emphasised the mechanical aspect of the health service in relation to the abortion being carried out at home, and the perception of the procedure as efficient, or quick in, quick out and businesslike. Others expressed a sense of feeling small and being trampled on when they encountered a doctor who gave them a lecture on contraceptive methods.

      The informants highlighted a desire to be met with greater understanding on the part of the health service and had suggestions about what could be done: ‘I wish they could be just a little bit more intune.’ Another informant would have liked an experienced midwife, ‘not one that was deaf, dumb and blind, one that had a sort of warm and kindly manner.’

      The most common metaphor signals had a moderating effect, such as like, kind of and in a way, which may be a sign that the informants were searching for the right words to describe complex feelings. Nevertheless, it was clear from the metaphors that some of the informants had felt alone, or had been depressed, and could have benefited from having someone to talk to, but that the prevailing policy did not allow the time or space for this.

      As Table 2 shows, the majority of the metaphors were negative, but some also expressed that the encounter with the health service was positive.

      Metaphors about the process

      The metaphors that relate to the process are documented in Table 3. Here too, the source domain is the actual area in nature that the reference is taken from, and the target domain is the topic of discussion.

      Table 3. Metaphors about the actual abortion process

      The physical pain during the process of removing the embryo/fetus was described in different ways. It was compared to waves, and described as like having multiple periods all at once. When the process began, it was likened to a natural disaster: ‘It rumbled and it boomed, I felt a commotion down there, but nothing was happening. But when it started to throb, things happened fast. Finally, I felt a kind of extreme urge to push.’

      The body’s physical exertion to expel the embryo/fetus could be exhausting and was perceived as something they had to steel themselves against. ‘I gauged it against this dental nightmare that I’d been through a few months before. Then I thought: “Okay, I know that this will pass. My body will sort this out.”’

      To trust in your body also means surrendering to stronger forces within yourself: ‘Because yes, I did become a bit of a cavewoman.’ The metaphor cavewoman is a strong expression, and the informant had chosen to moderate it by using the metaphor signal a bit. This metaphor is quite primal, and as such, has a connection to birth, and it proved to be the case here: ‘Mmm. Yes, I was completely [...] and it was [...] it didn’t take long [before] I realised that this was a birth.’

      Abortion is perceived as something more dramatic than a birth, as recounted by one woman who went to a friend’s house to avoid being alone: ‘No sooner had I arrived at my friend’s place than it flooded out.’ This abortion proved to be a bloody and dramatic affair: ‘It just gushed out and, afterwards, there was nothing left. And because there was such a lot, then I knew there must be something wrong.’

      The informant in question proved to be correct in her assessment of something being wrong: ‘It was in my body for six weeks before I had this torrential bleeding, where it almost, where the blood almost surged right out of me.’ The metaphor torrential bleeding is a compound noun, which is common to many metaphors. Here, it is implicit that the flow of blood is compared to a torrent.

      When the pain during the process was described, the informants used metaphors related to animals: ‘You become a bit like an animal when you are in that kind of pain, yes, or I howled a bit like I imagine you do when you’re giving birth, just like cows bellowing.’

      The powerful animal metaphor and the comparison to cows was expressed together with the metaphor signals a bit like and just like, in which the first toned down the metaphor, while the other intensified it. The metaphors highlighted the exhausting aspect of the process, as this woman described it: ‘Without any power in my body. I can’t remember moving. Like a sack of potatoes, from the bed, to the toilet, to the shower.’

      The metaphors also described how the body was put into a state of preparedness in order to cope, and the cold metaphor cropped up again: ‘I can take quite a lot, I’m a cold person. People around me say that I’m a cold person, who doesn’t show feelings or signs of empathy. That’s what they say. And that’s the way it is. One way to survive is to try not to remember what has happened. So it was kind of blocked out. Blocked out, yes.’

      The fact that it was difficult to remember what had happened may also be connected to the medication. The women recalled that the hospital staff gave them analgesic tablets to take home with them, and that they were stronger than the usual painkillers: ‘So, there was this dope, I was out of it, I was completely out of it after that. It helped with the pain, not 100%, but it helped cure my nerves, I wasn’t so nervous, I remember that. I remember, it waslike I’d taken dope, pure and simple.’

      After the abortion, there were two feelings that cropped up. The first was relief: ‘So, in a way it was like a cleansing process [...] that is, it takes a bit of time before your body becomes itself again.’

      Afterwards, they described feelings of guilt and the desire not to tell anyone else that they had had an abortion: ‘Maybe they will be more negative to it, really, maybe they will see me differently, like a child murderer or something.’

      The tablet they were given to expel the embryo/fetus was also given a name: ‘Subutex is, or, I can’t remember what I was given, but it was that first tablet that stopped everything – the murder tablet, I was about to say.’

      As Table 3 shows, most of the metaphors about the process were negative. The exception is the metaphor about cleansing, which must be interpreted as positive in this context.

      Metaphors about the embryo/fetus

      Table 4 shows the main metaphors used in relation to the embryo/fetus, with the source domain and the target domain. The metaphors are not divided into positive and negative, as in Tables 3 and 4, as this proved difficult in relation to these specific metaphors.

          Table 4. Metaphors about the embryo/fetus

      Some informants used the pronoun it in relation to the embryo/fetus: ‘That’s what I thought was the worst, that you were just waiting for it to come out. I was so afraid of seeing something. I thought it was so sad, didn’t want to [...]’ What is special about the use of the word it in this context is that the informants did not use any other name for the embryo/fetus and, therefore, it is not clear what it refers to. Perhaps the use of the word it was a sign that the informant was searching for words.

      Sometimes the embryo/fetus was referred to as a clump, a clod of blood or something shapeless, especially when they were discussing sitting on the toilet and bleeding: ‘I kept bleeding, and once in a while there was a clump.’ ‘Yes, well, it was like huge clods of blood. And, of course, you know what’s inside them.’

      The women who allowed themselves to examine the expelled matter used other words in relation to the embryo/fetus, as in this case: ‘And then I went to the toilet and wiped myself. And there it was – I realised then that this was the embryo. I’ve never seen anything worse in my entire life. That image is etched in my memory. It wasn’t a pretty sight. Then I realised what my friends meant by ‘don’t look down’ – it was a terrible sight. It was very strange to see the embryo, I mean, it was just a clump, but itsort of,it has veins and it has tissues, and it’s sort of, really out of the ordinary.’ The woman was about to use another metaphor instead of clump, but she didn’t say anything more than sort of, which toned down the impression that it might have been referring to a tiny human being.

      One of the informants was very direct in their use of language and referred to the embryo/fetus as a murder victim. On being asked if she meant that she had killed her own child, she replied: ‘I can rephrase it, of course, I can talk about it in a completely different way that makes it easier for me personally, but why should I? I’m quite hard on myself, you see. But I think that it’s also a way to hold out.’

      Another informant also talked about murder, but with a different attitude in hindsight: ‘Now it’s something that I’ve murdered. Something dead. But I’ve never really thought that it was murdered. I try, sort of, all the time to distance myself from it. I have said that it’s like scraping skin off your arm.Dead cells, kind of. Or a bit more than that, I guess.’ This comment is an example of how thoughts about the abortion change in retrospect. The informant distanced herself from her previous language use by using kind of to moderate the metaphor: ‘[...] dead cells, kind of.’

      Discussion

      In encounters with the health service, it was clear that some informants had experienced warmth and willingness to help from individuals, but that the system nevertheless appeared mechanical, robotic and characterised by coldness. The women also felt that they were perceived as dirt, and they felt ashamed and thought that they had behaved stupidly and therefore deserved punishment. What they wanted was to be seen and understood. Some of them believed that it was irresponsible to carry out medical abortions at home and that the abortion should have taken place in a hospital.

      This finding is in contrast to another study that showed that 96% of women considered it safe to have their abortion at home (21). One literature review stresses the importance of having strategies to reduce the element of surprise for the woman. Furthermore, it is essential to try to establish a sense of control for women carrying out a medical abortion in their own home (22).

      The metaphors that were used in relation to the abortion process itself focused on both physical and psychological experiences. Physically, the abortion was compared to a natural disaster, with waves, commotion, rumbling, torrential bleeding and explosions. It was also compared to a birth.

      In addition, women used metaphors that emphasised the animalistic nature of the process, and compared their own howls with the sound of cows bellowing. The strain led to a state of total powerlessness and a feeling of moving around like a sack of potatoes.

      The psychological process was described as cold, this time in reference to their own coldness, as a tool to help their bodies cope. Furthermore, the women mentioned that one of the coping strategies was to block it out and not to remember. The lack of memory was also enhanced by powerful analgesic tablets, so strong that they were reminiscent of dope or drugs.

      In addition, they described a feeling of being cleansed and a sense of relief, and of being themselves again. But at the same time, a sense of guilt and shame remained and, not least, the feeling of being a child murderer by having taken a murder tablet. Those who had the most resolved attitudes to their abortion also realised that abortion was a necessary evil, that ‘you can’t manage everything all the time.’

      The metaphors used in relation to the embryo/fetus were often tentative, either barely mentioning it or describing it as ‘just’ an embryo or ‘one of thoseembryos. This way of referring to the embryo/fetus is clinical and medical, to which one of the informants reacted. Another informant directly said that she tried to distance herself from what she had done. The informants struggled in particular to find words when they referred to the embryo/fetus.

      One of the most powerful metaphors used for the embryo/fetus was the metaphor of having a monster growing inside you, a description of being pregnant when you really do not want to have the baby. Here the informant moderated her own language by saying: ‘I can’t even say it.’ Through these comments, we get a sense of the cost of having the abortion, and the cost of speaking about it afterwards.

      The woman who described the tablet as a murder tablet and who saw herself as a child murderer, expressed how she had experienced the process both then and in retrospect. Like many of the women, she bore a heavy sense of grief after the abortion. In addition, she felt that the lack of empathy on the part of the hospital was a well-deserved punishment, expressed here through the use of metaphors: ‘It’s like, you’ve made your bed, now lie in it.’

      The women described abortion as a lonely process that they simply had to go through. This statement may imply that there was no room for follow-up, empathy or involvement. The women recounted that they received little in the way of follow-up from healthcare personnel. They were informed that they should not be alone at home during the abortion. They had the option to contact healthcare personnel, but they were uncertain about when and whether they should do so.

      In the final stage of the abortion process, uncertainty also arose about when the expulsion was complete. This study shows that medical abortion is a process that healthcare personnel have little part in. Similar findings were also emphasised in the first analysis of the data (12).

      First and foremost, the metaphor study provides access to the informants’ own language. It brings forth the details and intensity of the informants’ experiences, given that the metaphors are their own. Consequently, the study was able to closely examine the informants’ feelings and, in addition, revealed variations between the informants and how they interpreted their own situation.

      It would be of value to healthcare personnel in encounters with these women to listen to their language and metaphor use in conversations. Studies have shown that listening can be a useful aid in efforts to understand one another, and thus also to provide better care.

      Strengths and weaknesses of the study

      The strength of our metaphor study is that it shows how metaphors provide the possibility for condensed and figurative expression of feelings and experiences, especially those which are difficult to convey in words. The women were faced with extraordinary care challenges, and the metaphors provided ‘verbal images’ of their situations. Furthermore, carrying out an abortion in their own homes entailed major challenges for the women involved. It triggered powerful emotional reactions and indicated a need for support.

      Our study is, in addition, more precise in its use of method and procedures for metaphor identification than is usually the case with metaphor studies. Steen et al. (18) have pointed out that many studies are imprecise in metaphor identification and registration of the context of metaphors.

      We have attempted to show the context by rendering the connection in which the metaphors were used, and by registering the metaphor signals. They may indicate the informants’ attitudes to what was being expressed, and may also show whether they wanted to intensify or moderate their language.

      As mentioned, the study is a secondary analysis of existing data from another study (12), in which a content analysis resulted in the same findings. In addition, this study provides access to the informants’ feelings and language in relation to carrying out an abortion in their own home. The study also provides more context for their feelings and metaphors.

      Our study can thus be said to have enabled close examination of a phenomenon that is present in the dataset, but was not the main focus of the primary study (14). As such, context-oriented metaphor studies can generate new knowledge about the reasons why it is difficult for women to carry out abortions, including when it is their own choice.

      At the same time, it is important to acknowledge that our analysis of metaphors has limitations. When the aim of research is to obtain more detailed knowledge about the life situation of women who have carried out an abortion in their own home and their specific needs for care and support, qualitative methods such as metaphor studies can be combined with quantitative methods.

      In terms of statistics, the findings of our study cannot be generalised, but we believe that our findings will be transferable to other women who carry out an abortion in their own home (15).

      Conclusion

      This study has shown how metaphors are pathways to messages about experiences, especially in relation to feelings and topics that can otherwise be difficult to convey, such as abortions carried out at home. The women’s situation has been hushed up, subject to taboo and stigmatised, creating a persistent feeling of loneliness.

      Further, the study shows how metaphors provide possibilities for condensed and figurative verbal experiences, relating them to each other. The metaphors in our study convey and connect feelings and actions linked to complex and challenging life circumstances.

      The study also shows that healthcare personnel need to be aware of metaphorical messages in order to be able to provide adequate, tailored support to the individual, in this case women who have or are going to carry out an abortion in their own home.

      The authors declare no conflicts of interest.

      Peer-reviewed article
      Publication type
      Publication Year
      2023
      Edition Year
      18
      Publication Number
      91724
      Page Number
      e-91724

      Metaphors are used to describe feelings and topics that are difficult to convey due to shame and stigma.

      Article is Peer Reviewed
      1
      Innsendte kommentarer kvalitetssikres før publisering. Kvalitetssikringen skjer i vanlig arbeidstid.
      Research
      English
      Sammendrag

      Background: Metaphors are useful for expressing things that are not directly observable, but nevertheless may be real feelings or bodily experiences. In this study, therefore, we wanted to highlight women’s use of metaphors in relation to medical abortions.

      Objective: To study metaphors used by Norwegian women who have carried out medical abortions in their own homes.

      Method: This study is a secondary analysis of existing data collected from 24 interviews conducted in 2019–2020. The women were asked about their experiences of carrying out abortion, about their experiences during the process and about the follow-up they received from the health service.

      Results: The metaphor analysis showed that women used many different metaphors to describe their experiences. They also used many words to moderate their comments and to signal that they were searching for words. In addition, the metaphor analysis showed that women often felt lonely, ashamed and thus not worthy of health care – feelings they could also struggle with after terminating the pregnancy. It is likely that these feelings were amplified as a result of the lack of follow-up the women received from the health service.

      Conclusion: The study demonstrated how metaphors are pathways to messages about existential experiences, especially in relation to feelings and topics that can be difficult to convey due to shame and stigma, and that create a sense of loneliness. These feelings persisted also after terminating the pregnancy. In order to provide adequate, tailored support, healthcare personnel need to be aware of metaphorical messages and take into account women’s different life experiences in relation to carrying out abortions in their own homes.

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      • Little research has been conducted on women’s use of metaphors when carrying out a medical abortion at home.
      • With the aid of a qualitative approach, we conducted 24 interviews with women who had experienced a medical abortion at home. They used different metaphors to describe their experiences of a lonely pregnancy termination characterised by fluctuating pain and uncertainty.
      • The women described the atmosphere in their encounters with the health service (doctors and nurses), throughout the entire process, as robotic, clinical and ice-cold. The women felt lonely, ashamed and, consequently, not worthy of receiving health care. It is likely that these feelings were amplified by the lack of follow-up they received from the health service.

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      10.       Johannessen A, Thorsen K. Personsentrert omsorg i praksis: fire perspektiver på støttekontakttjenesten I demensomsorgen – en case studie design. Nordisk tidsskrift for helseforskning. 2018;14(2). DOI: 10.7557/14.4323

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      17.       Språkrådet, Universitetet i Bergen. Bokmålsordboka. Tilgjengelig fra: https://ordbokene.no/ (nedlastet 10.03.2023).

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    • Use of restraint in the paediatric ward – a survey study

      Bildet viser et lite barn som gråter mens en sykepleier lytter på ryggen til barnet

      Introduction

      In 2020, 26% of all Norwegian children between the ages of 0 and 19 visited hospital at least once (1, 2). Children are a vulnerable group, and they often have to undergo multiple procedures in hospital, which they do not always understand. This can make them feel frightened (3, 4).

      Many paediatric admissions are emergency admissions. It is therefore difficult to prepare the family in advance. Parents can project their own feelings onto their children, and it is therefore important to provide reassurance for the whole family. The children, parents and siblings can have crisis reactions in connection with hospital admissions (4). Children’s fear of hospitalisation can result in them resisting procedures (3, 4), which in turn can lead to restrain being used as the procedures are often necessary (3).

      Background

      Results from studies in other countries show frequent use of restraint on children who are hospitalised. Restraint is frequently used as children undergo stressful but often necessary procedures without understanding why (5–7). The method involves holding the child against his/her will (3, 8) and is often used on very young children (6–8).

      There are several types of restraint (3): physical restraint involves the child being held still, psychological restraint involves persuasion (3, 9), manipulation or bribery, and clinical restraint is the administration of medication against the child’s will (3).

      ‘Restraint’ has a broad meaning and is often explained by terms such as immobilisation, restricting movement and holding still. These terms are perceived as less impactful. They make the phenomenon seem harmless and normalise the use of restraint. Consequently, they can increase the frequency of restraint (6, 8, 10). Children’s and parents’ reactions can help us confirm whether the procedure requires the use of restraint or not. Carrying out a procedure on a child showing strong resistance can be described as use of restraint (5, 6, 10).

      Healthcare personnel disagree about what actions constitute ‘restraint’ (5, 6, 10). Some feel that they are not using restraint if the procedure is considered necessary, which it often is (7, 10). Uncertainty about the phenomenon can lead to uncertain reporting of its use.

      Restraint should only be used when it is in the child’s best interest, which means working to safeguard the child’s autonomy and support its decisions (7, 10, 11). It can be difficult to adhere to this, as children are not defined as competent to consent and often oppose procedures due to uncertainty (3, 4). Restraint is therefore sometimes used independently of consent and is considered by some to be routine when performing procedures (6, 11, 12).

      Few prevalence studies have been published on the use of restraint in paediatric wards, which may reflect the uncertainty surrounding the concept. In an international survey, 48% of healthcare personnel stated that they use restraint often (5). Physical restraint is the most common method (9), with a prevalence of 11% to 68% globally (5,7). Use of restraint also depends on the type of procedure: intravenous cannulation led to use of restraint in 72% of cases (8). No data have been found on this in Norway.

      The use of restraint can be traumatic for everyone involved (6, 9, 10). In some studies, restraint is described as taboo (6, 10, 12) and should be used as little as possible (5, 7, 10). Children can find the act of being restrained worse than the procedure itself (7). It is difficult to know the consequences of restraint (12), but some research indicates that it can diminish a child’s ability to build relationships (7), and cause psychological distress and a fear of procedures (6, 8).

      Children under the age of 16 are not competent to consent, and their parents are therefore responsible for giving permission to carry out procedures (13). This can increase the frequency of restraint as the parents may think it is better to simply carry out the procedure, regardless of the method used. It is recommended that children be informed about health interventions from the age of seven, and that their opinion on this be given weight (13). Consent is rarely sought before restraint is used. The parents are sometimes asked, but only verbally in most cases (5, 7, 12).

      Restraint is used for many different reasons: young age of the child and thus little understanding and cooperation, urgent procedures, poor staffing, simplification of everyday practice for registered nurses (RNs) (5–7) and parents’ wishes (5, 7, 11). There are also several options for reducing the use of restraint, for example, preparing the child (9–11), including the child in the procedure or distracting the child (3, 8, 9).

      The need for restraint can also be minimised by parental participation (5, 8, 11). Nevertheless, it is often the parents who restrain the child (9, 11, 12). It is recommended that RNs build a relationship of trust with the child before carrying out any procedures, thus reducing the need for restraint (9, 12). Such a relationship can be built by working in a child-friendly way, such as interacting with the child and taking his/her ability to deal with the situation into consideration (9).

      The lack of legislation, procedures and guidelines on the use of restraint in children or the lack of knowledge about these can lead to uncertainty among RNs (3, 8, 10). Training and education in the use of restraint should be offered and guidelines devised in order to reduce its use (3, 8, 11).

      There is a considerable need to explore restraint more thoroughly. RNs use restraint frequently, and their broad knowledge of the subject means that an emphasis is placed on their perspectives on restraint. In order to prevent and reduce the use of restraint, it is crucial to examine the phenomenon and prevalence of restraint, as well as which factors influence and reduce its use. Point prevalence surveys are considered particularly important as no such studies have been conducted in Norway. Previous research shows that it is possible to reduce the use of restraint (6, 8, 9).

      Objective of the study

      The objective of the study was to survey RNs’ experiences with the use of restraint in paediatric wards in Norway. The secondary purpose was to examine which factors influence the decision to use restraint, both those that support and do not support its use. Based on this, we formulated the following research questions:

      • How often do RNs use restraint in paediatric wards in Norway, according to their self-reporting of the phenomenon?
      • What factors affect the decision to use restraint?

      Method

      Design

      The study was conducted as a cross-sectional study, and the data were collected in the spring of 2021.

      Sample

      The survey was conducted at a regional, university hospital in Norway. The sample was selected through continuous inclusion, where all the RNs in the paediatric department participated. Staff at the neonatal intensive care unit were excluded. The inclusion criteria were RNs who had experience in working with children.

      Data collection tool

      We used an online questionnaire. Few questionnaires have been developed that deal with the use of restraint on children, and no validated Norwegian questionnaires were found that were relevant to the study. We found two questionnaires from other countries which, with the authors’ agreement, were combined (5, 8). Kirwan and Coyne’s survey has been assessed (8) for face validity.

      We tailored the questionnaires according to the guidelines of the International Test Commission (ITC) (14). This involved removing and adapting questions and response alternatives, and making all the questions closed-ended, as recommended for quantitative studies (15, 16). These changes are considered simple adaptations, and the content of the questionnaires is regarded as unchanged.

      The questionnaires were translated from English into Norwegian. The translation was based on a four-step process: two independent translations from the source language to Norwegian, a summary of the result, translation from the target language to the source language, and finally an assessment of all versions of the translation (17, 18).

      The questionnaire was then pilot tested by five independent RNs who had experience in working with children. The pilot testing led to some changes in wording, and we added a supplementary study-specific form to elaborate on the purpose of the study. The supplementary form consisted of questions about the age of the participants, whether they believed that steps could be taken to reduce the use of restraint in everyday practice, and how often they themselves used restraint.

      Data collection

      The survey was sent out via email using an online, anonymous survey tool (Nettskjema). We conducted the survey in collaboration with section heads at the paediatric department.

      A total of 250 RNs received an email giving information about the study, and five days later an invitation to participate was sent out. Reminders were also sent out and the study was advertised to generate interest among participants.

      Analysis

      The data collected were transferred from Nettskjema to IBM SPSS Statistics, version 27.1. We used categorical variables that were named and coded before the data transfer. Descriptive frequency analyses were performed to describe the study’s variables (15, 16).

      We created tables in Excel, version 16.47. Two statisticians were contacted for guidance on analysis. We investigated factors associated with the increased use of restraint using a rating scale and a numerical scale in which the influence of the factors was given on a scale from zero to ten. This resulted in correspondingly similar responses, and the results from the numerical scale are presented.

      Research ethics considerations

      The study was approved by the Norwegian Centre for Research Data (NSD) (reference number 566563) and the hospital’s R&D department before the start of the study. All participants were given information about the study, and answering the questionnaire was regarded as informed consent.

      Results

      The study had a response rate of 47 (N = 117). The age of study participants was evenly distributed, and the majority had over six years of experience in a paediatric ward. All departments included were represented in the study. Table 1 shows a description of the RNs who participated in the study.

      Table 1. Study participants (N = 117)

      Prevalence of restraint

      The results show that 96% of the RNs (n = 112) used restraint. More specifically, physical restraint was used by 96% of the participants (n = 112). The figures for clinical restraint and psychological restraint were 86% (n = 101) and 63% (n = 74), respectively.

      The majority stated that they use restraint sometimes (47%, n = 55), 42% stated that they use restraint often (n = 49), and 11% very often (n = 13). The percentage who never used restraint was 0 (n = 0). The main group stated that restraint was used weekly (43%, n = 50). According to 81% of the RNs, restraint is sometimes used unnecessarily (n = 95).

      Use of restraint is not documented according to 49% of the RNs (n = 57), while 38% said it is mentioned in the reports (n = 44). Restraint is documented in writing by 24% of the participants (n = 28). Consent is seldom obtained before restraint is used (Table 2).

      Table 2. Types of consent obtained (N = 117)

      Factors associated with increased use of restraint

      As shown in Figure 1, invasive procedures, administration of medications and performance of other procedures were ranked as the main reasons for using restraint. The highest ranked factors for increased use of restraint are if the procedure is urgent, and if the child is very young and thus has little ability to understand. Restraint is most frequently used on children below the age of four.

      Figure 1. Factors associated with increased use of restraint (N = 117)

      Factors associated with reducing the use of restraint

      Factors associated with reducing the use of restraint and the opportunities to use such methods are shown in Figure 2. Parents are often present when children are restrained, according to 55% of the RNs (n = 64), and 36% stated that the parents sometimes participate in the restraint (n = 42). Sixty-seven per cent stated that when the child has to be restrained, the healthcare personnel and the parents work together (n = 78). Parental participation was perceived as positive by 60% of the participants (n = 70).

      Fifty-three per cent of the RNs (n = 62) were unaware of any guidelines explaining the use of restraint on children, and 40% had not familiarised themselves with procedures and guidelines on the use of restraint (n = 47).

      Mapping tools are considered useful by 73% of the participants (n = 86), while 87% do not use them (n = 102). Eighty per cent (n = 94) reported having no training in the use of restraint, and 90% think that training should be provided (n = 105).

      Figure 2. Factors associated with reducing use of restraint (N = 117)

      Discussion

      The study shows that restraint is used frequently, and it gives us a good insight into which factors increase and decrease its use. It also shows that consent is seldom obtained.

      The study participants reported that they are unsure what the term ‘restraint’ entails. Previous research shows that the term has a broad meaning (6, 8, 10). This and the fact that the subject can be considered taboo (6, 10, 12) are challenges to the study and may compromise the credibility of responses.

      The results of our study show that restraint is mainly used when it is needed and when it is in the best interests of the child. This finding is not consistent with other research, which describes frequent use of restraint regardless of need (6, 11, 12).

      The concept of ‘the child’s best interest’ is easy to understand (7, 10, 11). ‘Simply carrying out’ the procedure without distracting the child may also be justifiable under this principle, as to do so enables RNs to carry out the procedure more quickly, which in turn means that the child will be less impacted.

      Prevalence of restraint

      The majority of RNs in the study used restraint, and the majority used it weekly. This frequency is supported by Bray et al. (5), but the proportion who reported using restraint in our study is larger. As many as 48% of the participants in our study reported using restraint frequently.

      Over half of the RNs in the study (63%) confirmed having used at least one type of restraint, including physical, psychological or clinical restraint. Physical restraint was used the most. The study participants reported that restraint was typically not used in all patients regardless of need, but that it was used when it was in the child’s best interest. However, they also reported that children were sometimes restrained unnecessarily.

      It is difficult to know what the consequences of restraint might be (12, 13), but it has been shown to affect some children’s ability to build relationships (7). Children can find the act of being restrained worse than the procedure itself (7). This means that it should be used as little as possible, particularly in instances where RNs consider it unnecessary.

      The results from this study show that parental consent was seldom sought, and when it was, it was only done so verbally, which is supported by previous research (5, 7, 12). In addition, the RNs reported that they rarely ask for consent from the child, which is also seen in previous research (5, 7, 12).

      There are several reasons why consent is seldom obtained, such as lack of knowledge about the subject, but also difficulties in respecting the answer if the procedure is necessary. The consent process for the use of restraint on young children is difficult, as they are not competent to consent. Consequently, the responsibility for consent falls to the parents (13), and it can be difficult to know what the child wants.

      Factors associated with increased use of restraint

      The frequency of restraint increases if the procedure is urgent, or if the child is very young and thus has a reduced ability to understand and cooperate. These factors can also influence each other. The RNs also described how some parents want to carry out the procedures using restraint without trying to take steps to avoid it, which may be an indication that the parents want the procedures to ‘simply be carried out’ (5, 7, 11).

      In addition to this, previous research also placed an emphasis on RNs’ habits, understaffing and simplification of RNs’ everyday practice (5–7). In our study, we did not find support for these factors, but the RNs stated that they did little to prepare the children and parents before procedures. This finding can appear contradictory and could be interpreted as the RNs being somewhat uncertain about their own use of restraint. Whether preparations are under-prioritised in a hectic working day can be debated.

      The emphasis on the factors associated with increased use of restraint shows that the RNs in the study work for the child’s best interests and support the child’s autonomy, as they state that external factors such as understaffing and heavy workloads rarely influence whether restraint is used or not. The RNs reported that restraint was mostly used on very young children, often under the age of four, which the research supports (7, 8, 10).

      Invasive procedures such as blood sampling, intravenous cannulation and such like are most often associated with increased use of restraint, and this is supported by Kirwan and Coyne (8).

      Factors associated with reducing the use of restraint

      Among the factors that can reduce the use of restraint, the study participants placed most emphasis on parental involvement and distraction, which is confirmed by other research (3, 9, 11). Information, preparation of the child (9–11) and inclusion of the child in the procedure (3, 8, 9) are further emphasised in the study and in other research. As described, parental participation is the most important factor in reducing the use of restraint.

      The RNs in the study reported that the parents are often present during procedures, and that they sometimes help to restrain the child. Physical restraint is often carried out by healthcare personnel and parents together. Many parents dislike this task (10–12), which the RNs in the study respect to some degree.

      The majority of the RNs reported that parental participation has a positive effect on the restraint situation, which can be interpreted as a distraction, as the parents know which measures will best distract their child and thus also reduce the use of restraint. This finding is supported by other research (5, 8, 11), while some studies indicate that parental participation can have both a positive and negative impact on procedures and use of restraint (5, 10, 11).

      The RNs reported that preparing the child for the procedure is essential for avoiding the use of restraint, as supported by previous research (3, 8, 9). Nevertheless, the study shows that one-fifth of the RNs rarely discuss the use of restraint with the child in advance. The main group of admissions at the hospital in the study are emergency admissions. There is therefore less opportunity to prepare the child in advance, which could perhaps minimise the use of restraint. Using restraint without mentioning it first can break the relationship of trust between RNs, parents and the child.

      Building relationships of trust prior to the procedure is considered essential (9, 12), and the RNs in the study only seem to partially comply with this. This finding shows one of the dilemmas of using restraint, as the RNs do not always have the opportunity to carry out the work as they wish. A possible reason for this could be their hectic working day. Nevertheless, the RNs in the study refute the idea that their hectic working day with little time to spare influences their decision on whether to use restraint or not. This inconsistency makes it unclear whether restraint could have been avoided to a greater extent.

      The study did not directly examine the use of alternatives to restraint, but the RNs reported that they only occasionally have the opportunity to use such alternatives. A correlation can be seen between limited use of alternatives to restraint and lack of procedures and guidelines. RNs have a duty to familiarise themselves with such instruments. The majority of participants are experienced nurses who should recognise these restraint-reducing factors.

      The study participants reported that there is little legislation and few procedures and guidelines on the use of restraint on children, which is confirmed in previous research (3, 8, 10). The majority of the RNs described that they were not aware of guides, guidelines or procedures on the use of restraint. The study results show that the majority of the participants use restraint, which may be linked to the lack of legislation and consequent uncertainty among healthcare personnel (3, 8, 10).

      The majority of the RNs stated that they do not use a mapping tool for the use of restraint. The majority believe that such a tool would be useful and could limit the use of restraint, and this is also supported by previous research (5, 7, 11).

      It can be difficult for RNs to use such tools if they have not been implemented in the department, but use and/or identification of needs can lead to such tools being implemented. The majority of the participants reported that they had had no training in the use of restraint and believed that they should have done. Training can reduce the use of restraint (3, 8, 11), and discussions should be held on whether such training should be given.

      Methodology

      This is a descriptive study, and the results cannot necessarily be generalised. Nevertheless, the findings provide a good overview of the phenomenon that may be of significance to future studies (15, 16). Questionnaire surveys provide an abundance of information (16), but the findings can be affected if participants do not give honest answers (15).

      The study was conducted anonymously, which is a strength and increases the possibility of obtaining honest answers. It is recommended that validated questionnaires are used (15), but we did not manage to identify any such questionnaires. The survey used was pilot tested, which can also strengthen the reliability of the study (15, 16). We chose to include older literature as there is not much research in this field.

      In the study, we included participants from different paediatric departments, which is considered a strength. The study was only conducted at one hospital. It would have been interesting to conduct the survey at several hospitals in order to strengthen the study and obtain broader knowledge of RNs’ experiences with this subject.

      The response rate of the survey was 47%. Research shows that RNs can find the topic of restraint and discussions on this traumatising (6, 9, 10), and it is considered a taboo subject (6, 10, 12).

      Attitudes on the subject can affect the participants’ ability to give honest answers. This phenomenon may also partly explain the low response rate, but a 50% response rate is considered normal in surveys (15). Unfortunately, the data were collected during a very busy period for the RNs, which may have affected the participation rate.

      Conclusion

      The RNs reported that restraint is used in paediatric wards at the hospital in the study. The majority of the RNs use restraint on a weekly basis. Physical restraint is used most frequently, and children under the age of four are most likely to be restrained. Invasive procedures and the administration of medication are the procedures that are mostly commonly associated with restraint. The factors that are most commonly associated with restraint are that the procedure is urgent and the child is very young, and thus also has little ability to understand.

      Parental involvement, preparation and distraction are the most essential factors in limiting the use of restraint. These factors show that the RNs use restraint as a measure to safeguard the child’s best interests, and not on a general basis as previous research may suggest. The RNs reported that they only occasionally have the opportunity to use alternatives that can reduce the use of restraint. Changes are therefore needed to RNs’ working day.

      The RNs at the hospital in this study are considered to be comparable to RNs in other hospitals in Norway. The knowledge generated in the study will also have value in other paediatric departments in Norway. Further research is needed into how alternatives to restraint can be implemented so that its use can be reduced. In addition, the importance of procedures and guidelines should be investigated.

      The authors declare no conflicts of interest.

      Peer-reviewed article
      Publication type
      Publication Year
      2023
      Edition Year
      18
      Publication Number
      91598
      Page Number
      e-91598

      Restraint is used to safeguard the child’s best interests when performing procedures and administering medications, generally in children below the age of four.

      Article is Peer Reviewed
      1
      Innsendte kommentarer kvalitetssikres før publisering. Kvalitetssikringen skjer i vanlig arbeidstid.
      Research
      English
      Sammendrag

      Background: The term ‘restraint’ has a broad meaning. It is difficult to know what the concept entails, and this can lead to it being normalised and used more often. We know from experience that restraint is frequently used in paediatric wards, and we examine this in the article. Use of restraint can be considered a violation of children’s rights, and it is important to examine the frequency of restraint and the influencing factors in order to be able to reduce its use.

      Objective: The purpose of the study was to survey registered nurses’ experiences with the use of restraint in a selection of paediatric wards in Norway. We also investigated which factors influence the decision to use restraint; factors that both support and do not support its use.

      Method: The study is a descriptive cross-sectional study. All registered nurses at the selected paediatric wards (n = 250) were invited to participate in the study and were sent a questionnaire. Descriptive analysis was performed using SPSS version 27.1 and Excel version 16.47.

      Results: The questionnaire was answered by 117 registered nurses (47% response rate). The analyses show that 96% of the study participants have used restraint in the last twelve months, 47% reported using restraint occasionally, while 43% used it weekly. Restraint is most often used on children below the age of four. Use of restraint was most frequently reported for invasive procedures and urgent procedures, but also in very young children and children with little ability to understand. The most frequently reported measures used to reduce restraint are parental involvement, distraction and information.

      Conclusion: The nurses reported that restraint, and particularly physical restraint, is used often. The study shows that the nurses work in the child’s best interest as factors such as heavy workload and understaffing rarely influence the decision to use restraint. We asked whether the participants felt they had the opportunity to reduce the use of restraint, and the majority answered ‘occasionally’. The results show that there is a need to reduce the use of restraint in general, and that more focus is needed on implementing and using methods that can reduce restraint.

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      Bildet viser et lite barn som gråter mens en sykepleier lytter på ryggen til barnet
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      • Little research has been conducted on the use of restraint on children. Previous research shows that healthcare personnel are unsure of the meaning of the phenomenon of restraint and what it entails.
      • The study was conducted as a descriptive cross-sectional study, and included a survey.
      • The results of the study show the RNs’ self-reported use of restraint and what steps can be taken to minimise the use of restraint on children. The study results confirm that restraint is used frequently: 96% reported using restraint, and it was often used on a weekly basis. The results show that restraint is used extensively due to invasive procedures, urgent procedures, when the child is very young and thus also has little understanding. Parental participation, distraction and information are the factors that reduce the use of restraint. The article’s results are considered extremely important and may change practices currently employed in paediatric wards.

      1.         Statistisk sentralbyrå (SSB). 10261: Pasienter, behandlinger og liggedager ved somatiske sykehus, etter region, alder, diagnose: ICD-10-kapittel, statistikkvariabel, år og kjønn. Statistikkbanken [Internet]. Oslo: SSB; 2021 [cited 17.04.2021]. Available at: https://www.ssb.no/statbank/table/10261/tableViewLayout1/

      2.         Statistisk sentralbyrå (SSB). 07459: Befolkning, etter kjønn, alder, statistikkvariabel, år og region. Statistikkbanken [Internet]. Oslo: SSB; 2021 [cited 17.04.2021]. Available at: https://www.ssb.no/statbank/table/07459/tableViewLayout1/

      3.         Svendsen EJ. Helsepersonell trenger å lære mer om bruk av tvang mot barn. Sykepleien. 2018;106(71912):e-71912. DOI: 10.4220/Sykepleiens.2018.71912

      4.         Hordvik E, Straume M. Syke barn i familien: informasjon og veiledning til foreldre. Oslo: Pedagogisk forum; 1997. Q-0936. Available at: https://www.regjeringen.no/globalassets/upload/kilde/bfd/bro/2003/0003/ddd/pdfv/170247-sykebarn.pdf (downloaded 30.03.2021).

      5.         Bray L, Carter B, Ford K, Dickinson A, Water T, Blake L. Holding children for procedures: An international survey of health professionals. J Child Health Care. 2018;22(2):205–15. DOI: 10.1177/1367493517752499

      6.         Bray L, Ford K, Dickinson A, Water T, Snodin J, Carter B. A qualitative study of health professionals’ views on the holding of children for clinical procedures: Constructing a balanced approach. J Child Health Care. 2019;23(1):160–71. DOI: 10.1177/1367493518785777

      7.         Lombart B, De Stefano C, Dupont D, Nadji L, Galinski M. Caregivers blinded by the care: A qualitative study of physical restraint in pediatric care. Nurs Ethics. 2019;27(1):230–46. DOI: 10.1177/0969733019833128

      8.         Kirwan L, Coyne I. Use of restraint with hospitalized children: A survey of nurses’ perceptions of practices. J Child Health Care. 2017;21(1):46–54. DOI: 10.1177/1367493516666730

      9.         Svendsen EJ, Moen A, Pedersen R, Bjørk IT. «But perhaps they could reduce the suffering?» Parents’ ambivalence toward participating in forced peripheral vein cannulation performed on their preschool-aged children. Journal of Pediatric Nursing. 2018;41:e46–51. DOI: 10.1016/j.pedn.2018.03.004

      10.       Svendsen EJ, Pedersen R, Moen A, Bjørk IT. Exploring perspectives on restraint during medical procedures in paediatric care: a qualitative interview study with nurses and physicians. International Journal of Qualitative Studies on Health and Well-being. 2017;12(1):1363623. DOI: 10.1080/17482631.2017.1363623

      11.       Bray L, Carter B, Snodin J. Holding children for clinical procedures: perseverance in spite of or persevering to be child-centered. Research in Nursing & Health. 2016;39(1):30–41. DOI: 10.1002/nur.21700

      12.       Svendsen EJ, Moen A, Pedersen R, Bjørk IT. Parent – healthcare provider interaction during peripheral vein cannulation with resistive preschool children. Journal of Advanced Nursing. 2016;72(3):620–30. DOI: 10.1111/jan.12852         

      13.       Lov 2. juli 1999 nr. 63 om pasient- og brukerrettigheter (pasient- og brukerrettighetsloven). Available at: https://lovdata.no/dokument/NL/lov/1999-07-02-63 (downloaded 09.01.2020).

      14.       International Test Commission (InTestCom). The ITC guidelines for translating and adapting tests (Second edition), www.InTestCom.org. InTestCom; 2017. Available at: https://www.intestcom.org/files/guideline_test_adaptation_2ed.pdf (downloaded 18.01.2021).

      15.       Polit DF, Beck CT. Nursing research – generating and assessing evidence for nursing practice. 11th ed. Philedelphia, Pennsylvania: Wolters Kluwer Health; 2020.

      16.       Ringdal K. Enhet og mangfold – samfunnsvitenskapelig forskning og kvantitativ metode. 4th ed. Oslo: Fagbokforlaget; 2018.

      17.       Ljoså TM, Jacobsen HB, Granan L-P, Reme SE. ReKS modifiserte oversettelsesmetode for spørreskjema. Regional Kompetansetjeneste for Smerte (ReKS), Oslo Universitetssykehus (OUS); 2013. Available at: https://oslo-universitetssykehus.no/seksjon/Regional-kompetansetjeneste-for-smerte/Documents/ReKS%20modifiserte%20oversettelsesprosedyre%20for%20sp%C3%B8rreskjema%2018sept2015.pdf (downloaded 18.01.2021).

      18.       Polit DF, Yang FM. Measurements and the measurement of change: a primer for the health professions. Philadelphia, Pennsylvania: Wolters Kluwer; 2016.

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    • ‘Impossible to bear’: a qualitative study on the development of crises in older people

      Bildet viser en trist, gammel dame som lener hodet mot hendene sine. Hun sitter ved kjøkkenbordet med et pilleglass foran seg.

      Introduction

      In older people, crisis is a common reason for admission to hospital (1, 2). The ‘crisis’ phenomenon can be understood in different ways. In our study, ‘crisis’ is defined as a process in which several stressors over time cause an imbalance. The crisis requires a solution and increases the likelihood of an emergency admission (3, 4).

      The transition from living independently and coping on their own to being frail and reliant on help can increase the risk of a crisis developing among older people (4–6). Frailty refers to increased vulnerability to stressors (7). A multidimensional loss of reserves reduces the ability to withstand both external and internal stressors (5, 7, 8).

      Statistics Norway estimates that the proportion of people over the age of 65 will more than double by 2075 (9). In 2015, figures from the Norwegian Institute of Public Health (NIPH) showed that 45 per cent of people aged 65–79 had one or more chronic illnesses (10). One study estimated that the number of people aged over 65 with four or more chronic diseases will increase by almost 50 per cent in the period 2015–2035. Two-thirds are expected to have poorer mental health due to depression, dementia or cognitive impairment (11).

      A Norwegian qualitative study explored older people’s experiences with severe depression shortly after admission to a psychiatric unit. The participants described how they understood and dealt with their depressive crises. They felt trapped in a painful process and told of their despair, lack of energy, physical pain, anxiety and restlessness, as well as their fear of being abandoned, getting worse and becoming a burden. Complicated family relationships and traumatic events were described as weighing them down. The participants did not understand why they were depressed, and expressed a sense of powerlessness in the face of such challenges (3).

      The Trøndelag Health Study (the HUNT Study) showed that depression is common among older people and that the incidence increases with age (12). Depression is also a risk factor for suicide among this patient group (13). According to the NIPH’s Cause of Death Registry, 14 per cent of those who took their own lives in 2020 were over the age of 70 (14).

      A Canadian study on health and ageing examined the relationship between mental health and frailty among 5703 people over the age of 70 (6). The study showed that poor mental health can lead to a maladaptive response to new events, which is referred to as ‘a frailty identity crisis’. The analysis showed a significant correlation between impaired mental health and frailty, and supports the idea that a ‘frailty identity crisis’ impacts on the quality of life of older people.

      With the aim of identifying the reasons why crises occurred, Gillès de Pélichy et al. (15) retrospectively analysed 570 medical records and discharge reports of older patients who had received counselling from an ambulatory team. The patient group that experienced the most crises consisted of women over the age of 80 who had dementia, mood disorders with or without suicidal ideation and/or delirium. The study did not describe which events triggered the crises, but it revealed that challenging behaviour related to reduced cognition was the main cause.

      For people with dementia, crisis is a process, according to the systematic review by Hopkinson et al. (16). The crisis could be predictable or could occur suddenly, but either way, the result of the crisis put the patient or their family at risk of harm. Research was limited on the process and on the causes of crises in people with dementia. There was also no consensus on critical characteristics and how they should be addressed.

      In summary, crises are common among frail older people living at home. Several reasons were described for a crisis occurring, but research was limited on the characteristics of the run-up to a crisis (3, 16–18).

      Objective of the study

      The objective of the study was to investigate whether there were any common characteristics in the development of a crisis in frail older people who were admitted to a hospital psychogeriatric unit as an emergency admission. The focus was on patient experiences.

      New knowledge can strengthen the understanding of how crises develop, as well as improve the service provision for older people living at home by implementing measures in the home at an earlier stage. This could potentially prevent or reduce emergency admissions as a result of crises. This led us to our research question:

      ‘What characterises the development of a crisis in frail older people who were admitted to a psychogeriatric unit as an emergency admission?’

      Method

      This is a qualitative document study based on an analysis of text extracts from patient records. The study has an interpretive, retrospective design with a mainly inductive approach and an emphasis on the patient experiences reported in the medical records (19). In the study, our focus was on descriptions of events prior to admission.

      Recruitment and participation

      The patients were recruited from a psychogeriatric unit in the specialist health service. Inclusion criteria were as follows:

      1. Patients over the age of 65 who were emergency admissions in the period 20 October 2019 to 20 October 2020.
      2. A score of five or more on the Clinical Frailty Scale (CFS) (20, 21) and users of the home care services.
      3. No known history of underlying severe mental health problems.

      The CFS is a recognised screening tool for measuring the degree of frailty, and was developed by Rockwood et al. (7, 20, 21) The 9-point scale ranges from 1 – Very fit, to 9 – Terminally ill. Frailty was measured based on how the patient had coped at home before being admitted to hospital. A score of 5 or more indicates a mild to severe degree of frailty and that these patients need help with areas such as taking medication and finances, or have a need for more extensive help with daily living (7).

      The patients were identified by an independent third party, who is the office manager at the recruiting psychogeriatric department. We sent information letters to 14 people along with a consent form and a request to participate in the study. Six participants – two women and four men aged 65–91 – consented to take part. Information about the patients is shown in Table 1.

       Table 1. Information on the patients

      Data collection

      The office manager obtained the patient record documents from the admissions in question. These were de-identified, scanned and uploaded to a secure research server. The source data included the following: referral letters, admissions records and assessments, nurses’ entries in the admissions records, information from the patient and family to/from the nurse, minutes from interdisciplinary meetings, and progress notes and discharge reports from the doctor.

      Analysis

      We analysed the text using a six-step deductive-inductive method (18): 1) generation of empirical data, 2) processing of raw data, 3) coding, 4) grouping of codes, 5) development of concepts, and 6) theory development. This method was chosen as it enabled a systematic step-by-step approach to the data material. Concepts were developed in the study; however, no theories were developed as the requirements for this were too extensive.

      First, we read all the documents in their entirety to gain an overall impression of the data material. We then systematised demographic and health data for each patient. The coding was generated inductively and empirically by coding words and phrases from the medical records (19).

      This produced a total of 111 codes, which were categorised in seven code groups plus a residual group: 1) overuse of medicines, 2) severe pain, 3) tired, 4) cannot tolerate it any longer, 5) feels life is meaningless and not worth living, 6) challenges and stressors in life, and 7) loss of touch with reality. Code groups dealing with the same theme were merged into three main themes (19). Table 2 shows examples from the analysis process.

      Table 2. Examples from the analysis process

      Ethical considerations

      The ethical principles and guidelines for research stipulated in the Declaration of Helsinki (22) and the Health Research Act (23) were complied with. The participants are referred to as ‘she’ or ‘the patient’ in order to protect their anonymity. Access to patient records was based on written informed consent.

      The Regional Committee for Medical and Health Research Ethics approved the project (reference number 172806). The project was registered with and approved by the Norwegian Centre for Research Data (NSD) (reference number 801443) and by the data protection officer at the recruiting hospital.

      Results

      Three main themes were identified in the analysis process:

      1. The suffering became intolerable
      2. Life was meaningless – not worth living
      3. Traumatic events

      Together with theory and research on crises, the main themes formed the basis for developing the concept ‘Impossible to bear’. The concept reflects the patients’ expression of how they could not live with the degree of suffering, and how they ended up developing a crisis and being hospitalised as an emergency admission.

      The suffering became intolerable

      The patients’ suffering was immense, and they described it as painful and intense. All patients had a complex clinical picture, with physical, mental and existential pain. Illnesses included depression, dementia, hypertension, cancer, spinal stenosis, lumbago, COPD and asthma. In one admissions record, the doctor wrote: ‘She wishes she was dead in order to escape the pain and suffering caused by her back and stomach issues’ (P3).

      The medical record entries showed that pain caused severe anxiety in some people, and that some had lost faith in getting help. Several reported increasing pain before admission. In one referral letter, the primary care doctor wrote the following: ‘She is experiencing severe physical discomfort, which has worsened in the past few days’ (P1).

      The suffering led to overuse of medicines in some patients. Some had been using more than the prescribed amount for several years, and some had increased their consumption immediately prior to admission. On arrival, one family member had told staff how the patient ‘had broken her femoral neck a month earlier, and since then has been using strong painkillers, more than the prescribed amount’ (P5).

      After admission, one patient was diagnosed with a severe B12 deficiency. The doctor described the following in the discharge report: ‘Strong suspicion that the patient’s mental health symptoms are related to a prolonged B12 deficiency’ (P5).

      Five out of six patients reported a poor night’s sleep prior to admission. Several were described as tired. The doctor wrote in the admissions record, for example: ‘The patient did not sleep last night. She has called the home care services multiple times as she is afraid of disappearing, and has problems breathing and racing thoughts’ (P6).

      Life was meaningless – not worth living

      In the medical records, there were patient descriptions of how life was difficult and meaningless, and that they wanted to die. In one referral letter, the doctor wrote: ‘She calls and says she can’t take it anymore. Says she wants to take her own life, can’t go on’ (P1).

      The patients had to give up activities that had previously given their life meaning. Several of them were dependent on aids and physical assistance. One admissions record described the following: ‘States that she has had little appetite, sleep or joy recently, started after she and her husband moved to sheltered housing last year’ (P3).

      Some had stated that the life they were now living was no life at all. One nurse wrote the following as part of an assessment: ‘The patient has repeatedly expressed a wish to end her life: “It would be good not to have to live”’ (P5).

      It was clear from the medical records that patients’ loneliness and lack of contact with family and friends made their life feel meaningless. Some described their working life as important for their sense of identity, where creating something together with others and having a role had made life meaningful. For example, the doctor described the following in a discharge report: ‘It’s clear that the patient is struggling to accept life as an ageing woman with considerable functional impairment, both physically and cognitively. Much of her identity is based on being useful’ (P1).

      Traumatic events

      All of the patient records made reference to traumatic life events that had had a major impact on the patients’ mental health. Some of the events had happened just before admission, while others were not so recent. Prior to admission, several patients described losing touch with reality. One doctor wrote the following in the admissions record: ‘The patient has been confused and delusional for the past 24 hours. The patient is showing signs of short-term memory loss’ (P6).

      The families of patients with dementia described a gradual change over several months in terms of impaired cognition, reduced self-awareness and an increase in visual hallucinations and delusions. The changes were pronounced prior to admission. Some patients lost their self-control and displayed challenging behaviour. The referring doctor wrote the following: ‘The patient’s spouse says that the patient was angry and acting out and held him in a tight grip’ (P4). Family members described the patient’s home situation as untenable.

      The patient records made reference to various previous traumatic events, such as infidelity, a former partner’s violence, serious illness in the patient or a loved one, suicide attempts and loss of a loved one, and losing a child was particularly traumatic. As stated by one doctor in the admissions record: ‘The patient describes a life full of challenges, burdens, loss and disappointment. She says that her former partner subjected her to physical violence’ (P1).

      In another admissions record, the doctor wrote: ‘The patient’s spouse says that the patient has never accepted her illness’ (P4). Witnessing serious illness and severe pain in close family members made some people fear it could happen to them. In a meeting with one patient’s family, a nurse wrote: ‘She had back surgery in 2017. She was in a lot of pain and suffered anxiety when her father died of bone cancer’ (P3).

      Discussion

      The objective of the study was to examine and explore characteristics of the development of a crisis in frail older people who had been admitted to a hospital psychogeriatric unit as an emergency admission from a patient perspective. The findings show that the combination of physical, mental and social problems as well as frailty made the suffering overwhelming, and life was meaningless and not worth living.

      Life had also left its mark. The development of a crisis in the patients was a complex process involving various components. The complexity formed the basis for the ‘Impossible to bear’ concept as a main finding in the study.

      Pain is a warning sign

      Several patients described physical pain. Some described the pain as overwhelming, and they wanted to die in order to escape it. The experience of suffering pain can be traumatic, and this is supported in other research on crises among geriatric hospital patients (3). Some older people also describe somatic symptoms in depression (13).

      Both chronic and acute pain must be regarded as important warning signs of the burden becoming so great that it leads to a crisis. The patients described how depending on help and no longer being able to do what they used to do was painful. Studies show that the transition from independence to depending on help is a vulnerable phase that can trigger a crisis (4, 6).

      Increased pain and the need for help can be the first signs of a looming crisis. Relocating to sheltered housing had been difficult for some patients and must be considered a major life change. It can be perceived as confirmation that they can no longer fulfil all their roles (24).

      The loss of roles was described as difficult in terms of the transition to retirement and the changing roles in their family. Some patients said that they were lonely and no longer valued, and they felt that life was empty and meaningless. Absence of a social network and a sense of loneliness can be signs that a crisis is developing (13).

      Sleep difficulties and polypharmacy increase the risk of crisis

      Most of the patients described that they were tired and did not sleep well at night. These findings are in line with other studies which demonstrate that sleep disturbance, immobility and isolation can trigger a crisis (3, 13, 17). The patients in the study used an average of 8.5 medicines regularly. Polypharmacy is partly a result of multimorbidity in older people, and in addition, all the patients in this study were frail (11).

      Several patients used benzodiazepines or strong analgesics. Most had been taking them for a long period of time. These types of medicines can lead to addiction and can be detrimental to patients’ health. They can also increase the risk of a crisis (13). Pain, overuse of medicines and insufficient sleep affect all areas of life: the physical, social and mental aspects, and influence how a person lives their life.

      Severe mental stress a factor in crisis development

      The patients described how they were weighed down by past painful experiences, such as witnessing serious illness in a loved one, losing a child, infidelity or violence. It has been shown that past exhaustion, worry and grief can eventually lead to the development of a depressive crisis (3).

      Several patients described how they felt confused and suffered short-term memory loss prior to being admitted to hospital. Lack of insight into their own situation and an increase in hallucinations and delusions were clearly seen in patients with dementia. The situation came to a head for the patients who developed aggressive behaviour, and their families considered the situation untenable. Several studies confirm that delusions, aggression towards family members and lack of insight into their own situation were risk factors for crisis in people with dementia (16, 17). 

      Strengths and weaknesses of the study

      We chose a qualitative method with document analysis because we wanted to explore what characterises a phenomenon, which in this case was the development of a crisis. The study has a patient perspective. For ethical reasons, we chose to seek permission to use information from the patient records instead of interviewing the patients.

      Medical record entries and discharge reports were secondary sources, as these are written retrospectively in a medical context for non-research purposes (25). The texts we chose and our interpretation of the extracts may have influenced the results. Individual qualitative interviews would have elicited a different perspective on patients’ experiences (26).

      We deem patient record documents to be reliable because of the legal requirements they are subject to under the Regulations on Patient Records (27). Throughout the research process, we aimed to render the descriptions from the patient records as accurately as possible. The study’s findings are supported by other relevant research, which in turn supports the study’s validity and reliability.

      The study has a qualitative design and is based on data from relatively few participants. Nevertheless, we believe the findings are transferrable to some degree to frail older people living at home, and to the understanding of how crises can develop as a result of complex processes.

      Significance for clinical practice

      The health authorities want older people to be able to live good lives at home for as long as possible (28). The study has identified several factors that should be borne in mind when dealing with frail older people, and which can increase the risk of developing a crisis.

      Home care services come into contact with patients when they need help to cope with the activities of daily life. The transition from coping on their own to being dependent on help can represent an increased vulnerability. It is important to know ‘who the person is’ and how they describe and understand their life situation and needs. This includes both their past and present life situation and what has given or currently gives their life meaning.

      Patient experiences are important for the understanding and assessment of vulnerability to a crisis. When a patient lacks the capacity to consent and is unable to make decisions that safeguard their own health, this assessment must be made in consultation with their family (29). Healthcare personnel must help ensure that the patient experiences a sense of coping (24).

      Service user participation strengthens the individual’s autonomy and identity and can prevent a frailty identity crisis (6). Continuity and a good relationship with the person providing care can help ensure greater insight into and understanding of the individual’s life situation (13). This knowledge will make it easier to detect changes in physical, mental, social and existential conditions at an early stage, and may subsequently prevent a crisis. 

      Conclusion

      The study explored the characteristics of the development of a crisis in six people over the age of 65 who had been admitted to a hospital psychogeriatric unit as an emergency admission.

      There are three main findings in the study: ‘The suffering became intolerable’, which describes how physical ailments affected older people’s health; ‘Life was meaningless – not worth living’, which refers to how they lost their zest for life when their health started to fail and they were no longer able to fulfil roles or undertake tasks in the same way as before; ‘Traumatic events’, which include responses to events in the recent and distant past that subjected patients to major emotional stress.

      The findings showed that a crisis is a complex process in which several elements are intertwined. The patients described how developing a crisis was so difficult that it was ‘impossible to bear’.

      Our results can deepen the understanding of how crises develop, seen from the patient’s perspective. Increased awareness and knowledge about crises would enable the home care services to implement measures at an earlier stage and hopefully prevent the crisis. Many patients would thus avoid the stress of an emergency admission.

      The authors declare no conflicts of interest.

      Peer-reviewed article
      Publication type
      Publication Year
      2023
      Edition Year
      18
      Publication Number
      91376
      Page Number
      e-91376

      Intolerable suffering, loss of meaning and traumatic events can signal that a crisis is developing.

      Article is Peer Reviewed
      1
      Innsendte kommentarer kvalitetssikres før publisering. Kvalitetssikringen skjer i vanlig arbeidstid.
      Research
      English
      Sammendrag

      Background: Crisis is a common reason for acute hospital admissions among older people. However, little is known about the changes that occur in the run-up to a crisis. The older population is steadily increasing, and as it ages, the number of sick and frail older people also increases. Frailty makes people more vulnerable to crises. Greater understanding and more knowledge of what characterises the development of a crisis can lead to better health care and help prevent crises in this patient group.

      Objective: To investigate characteristics of the development of a crisis in frail older people who are admitted to a psychogeriatric hospital unit as an emergency admission.

      Method: A qualitative document study based on a stepwise deductive-inductive (SDI) analysis of text extracts from six patient records, with the main emphasis on descriptions of patient experiences.

      Results: Analysis of the patient records showed three main characteristics of the development of a crisis from the patient’s perspective: 1) ‘The suffering became intolerable’, which describes how physical ailments in particular affected older people, 2) ‘Life was meaningless – not worth living’, which refers to how they lost their zest for life when they no longer had the strength or opportunity to fulfil roles that had previously given life meaning, and 3) ‘Traumatic events’ – both in the recent and distant past, which led to worries and stressors that impacted on the development of the crisis.

      Conclusion: The development of a crisis is a complex process in which several elements are intertwined, where extensive suffering, loss of meaning and recent and past events influence each other. The findings in the study showed that the burden of developing a crisis was so great among the patient group that they considered it ‘impossible to bear’.

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      • Crisis is the most common reason for acute admissions to institutions among older people. Many older people are frail and have functional impairments as a result of old age and/or chronic illness. Research shows that the transition from being independent to being frail and reliant on help can increase the risk of developing a crisis. There is little research on what happens before the crisis begins.
      • This study is based on data from the medical records of frail older patients who were placed in a psychogeriatric unit as an emergency admission. We were interested in the patient’s perspective and the events prior to the crisis that necessitated admission to the unit.
      • The study shows that the road to the crisis was complex, and the burden on the individual was described as intolerable and ‘impossible to bear’. Pain, loss of meaning and life traumas represented a major burden. Greater understanding of what characterises the development of a crisis can help ensure measures are implemented at an earlier stage and improve the service provision for frail older people to prevent a crisis.

      1.         Keeble E, Roberts HC, Williams CD, Van Oppen J, Conroy SP. Outcomes of hospital admissions among frail older people: a 2-year cohort study. Br J Gen Pract. 2019;69(685):e555–60. DOI: 10.3399/bjgp19X704621

      2.         Krumholz HM. Post-hospital syndrome – an acquired, transient condition of generalized risk. N Engl J Med. 2013;368(2):100–2. DOI: 10.1056/nejmp1212324

      3.         Bjørkløf GH, Kirkevold M, Engedal K, Selbæk G, Helvik A-S. Being stuck in a vice: The process of coping with severe depression in late life. Int J Qual Stud Health Well-Being. 2015;10(1):27187. DOI: 10.3402/qhw.v10.27187

      4.         MacNeil-Vroomen JL, Bosmans JE, van Hout HPJ, de Rooij SE. Reviewing the definition of crisis in dementia care. BMC Geriatrics. 2013;13:10. DOI: 10.1186/1471-2318-13-10

      5.         Reeves D, Pye S, Ashcroft DM, Clegg A, Kontopantelis E, Blakeman T, et al. The challenge of ageing populations and patient frailty: can primary care adapt? British Medical Journal Publishing Group. 2018;362:k3349. DOI: 10.1136/bmj.k3349

      6.         Andrew MK, Fisk JD, Rockwood K. Psychological well-being in relation to frailty: a frailty identity crisis? Int Psychogeriatr. 2012;24(8):1347–53. DOI: 10.1017/s1041610212000269

      7.         Rockwood K, Song X, MacKnight C, Bergman H, Hogan DB, McDowell I, et al. A global clinical measure of fitness and frailty in elderly people. CMAJ. 2005;173(5):489–95. DOI: 10.1503/cmaj.050051

      8.         Helse- og omsorgsdepartementet. Nasjonal helse- og sykehusplan 2020–2023. Oslo: Helse- og omsorgsdepartementet; 2019. Available at: https://www.regjeringen.no/no/dokumenter/nasjonal-helse--og-sykehusplan-2020-2023/id2679013/?ch=1 (downloaded 02.01.2021).

      9.         Statistisk sentralbyrå (SSB). Nasjonal befolkningsframskrivinger. SSB; 2020. Available at: https://www.ssb.no/befolkning/befolkningsframskrivinger/statistikk/nasjonale-befolkningsframskrivinger (downloaded 30.01.2023).

      10.       Folkehelseinstituttet (FHI). Norgeshelsa statistikkbank. Oslo: FHI; n.d. Available at: https://www.norgeshelsa.no/norgeshelsa/ (downloaded 29.04.2022).

      11.       Kingston A, Robinson L, Booth H, Knapp M, Jagger C, MODEM project. Projections of multi-morbidity in the older population in England to 2035: estimates from the Population Ageing and Care Simulation (PACSim) model. Age Ageing. 2018;47(3):374–80. DOI: 10.1093/ageing/afx201

      12.       Solhaug HI, Johansen EB, Romild U, Stordal E. Increased prevalence of depression incohorts of elderly. A longitudinal epidemiological study: The hunt-study. European Psychiatry. 2011;26(S2):1183. DOI: 10.1016/S0924-9338(11)72888-7

      13.       Engedal K, Tveito M, eds. Alderspsykiatri. Tønsberg: Aldring og helse – akademisk; 2019.

      14.       Folkehelseinstituttet (FHI). Dødsårsaksregisteret – statistikkbank 2021. Oslo: FHI; n.d. Available at: http://statistikkbank.fhi.no/dar/ (downloaded 03.04.2022).

      15.       Gillès de Pélichy E, Ebbing K, Matos Queiros A, Hanon C, Von Gunten A, Sellah Z, et al. Demographics, clinical characteristics, and therapeutic approaches among older adults referred to mobile psychiatric crisis intervention teams: a retrospective study. Dementia and Geriatric Cognitive Disorders Extra. 2018;8(3):402–13. DOI: 10.1159/000493525

      16.       Hopkinson JB, King A, Mullins J, Young L, Kumar S, Hydon K, et al. What happens before, during and after crisis for someone with dementia living at home: a systematic review. Dementia. 2020:;20(2):570–612. DOI: 10.1177/1471301220901634

      17.       Ledgerd R, Hoe J, Hoare Z, Devine M, Toot S, Challis D, et al. Identifying the causes, prevention and management of crises in dementia. An online survey of stakeholders. International Journal of Geriatric Psychiatry. 2016;31(6):638–47. DOI: 10.1002/gps.4371

      18.       Toot S, Hoe J, Ledgerd R, Burnell K, Devine M, Orrell M. Causes of crises and appropriate interventions: the views of people with dementia, carers and healthcare professionals. Aging & Mental Health. 2013;17(3):328–35. DOI: 10.1080/13607863.2012.732037

      19.       Tjora AH. Kvalitative forskningsmetoder i praksis. 3rd ed. Oslo: Gyldendal Akademisk; 2017.

      20.       Church S, Rogers E, Rockwood K, Theou O. A scoping review of the Clinical Frailty Scale. BMC Geriatr. 2020;20(1):393. DOI: 10.1186/s12877-020-01801-7

      21.       Rockwood K. Clinical Frailty Scale (norsk versjon). Dalhousie University; n.d. Available at: https://www.legeforeningen.no/contentassets/21ef25cf569d44749573de21a8d6b043/cfs_norsk_horisontal_2021.pdf (downloaded 03.09.2021).

      22.       World Medical Association (WMA). WMA Declaration of Helsinki – ethical principles for medical research involving human subjects. Ferney-Voltaire: WMA; 2022. Available at: https://www.wma.net/policies-post/wma-declaration-of-helsinki-ethical-principles-for-medical-research-involving-human-subjects/ (downloaded 31.01.2023).

      23.       Lov 20. juni 2008 nr. 44 om medisinsk og helsefaglig forskning (helseforskningsloven). Available at: https://lovdata.no/dokument/NL/lov/2008-06-20-44 (downloaded 04.09.2022).

      24.       Hummelvoll JK. Helt – ikke stykkevis og delt: psykiatrisk sykepleie og psykisk helse. 7th ed. Oslo: Gyldendal Akademisk; 2012.

      25.       Bratberg Ø. Tekstanalyse for samfunnsvitere. 2nd ed. Oslo: Cappelen Damm Akademisk; 2017.

      26.       Kvale S, Brinkmann S. Det kvalitative forskningsintervju. 2nd ed. Oslo: Gyldendal Akademisk; 2009.

      27.       Forskrift 1. mars 2019 nr. 168 om pasientjournal (pasientjournalforskriften). Available at: https://lovdata.no/dokument/SF/forskrift/2019-03-01-168 (downloaded 26.08.2021).

      28.       Helse- og omsorgsdepartementet. Forebyggende hjemmebesøk for eldre. Oslo: Helse- og omsorgsdepartementet; 2021. Available at: https://www.regjeringen.no/no/dokument/dep/hod/anbud-konsesjoner-og-brev/brev/utvalgte_brev/2021/forebyggende-hjemmebesok-for-eldre/id2868577/ (downloaded 09.04.2022).

      29.       Lov 2. juli 1999 nr. 63 om pasient- og brukerrettigheter (pasient- og brukerrettighetsloven). Available at: https://lovdata.no/dokument/NL/lov/1999-07-02-63 (downloaded 04.09.2022).

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    • Treatment of hepatitis C and changes in substance use – a qualitative study

      Illustrasjonen viser et virus foran en lever. Bak står et pilleglass, og ved siden av ligger noen piller

      ​Introduction

      Hepatitis C virus (HCV) is transmitted via blood and causes serious liver disease, which can lead to premature death (1). A chronic phase with few symptoms can last for decades before complications such as liver cirrhosis, liver cancer and liver failure occur (1, 2). There is currently no vaccine against hepatitis C, unlike hepatitis A and B (3).

      Since 2016, however, the treatment provision has gradually improved due to the increase in effective medications and competitive bidding, which has pushed purchase prices down. Norway’s goal is that no one should die or become seriously ill from HCV, and that the incidence in the entire population is reduced by 90% by 2023 (4). To achieve this goal, those in the risk group must be tested and treated (4, 5).

      In 2010, approximately 10,000 people were living with chronic HCV in Norway (6), but the incidence has been decreasing, especially in recent years (7, 8). Intravenous drug users are a high-risk group for HCV infection (4) due to the culture of sharing drug paraphernalia such as syringes, needles, ‘cooking’ spoons and cotton wool (6). Active substance users are difficult to treat using traditional methods (4, 9).

      Preventive measures include free distribution of drug paraphernalia (2) and substitution treatment such as opioid agonist therapy (OAT) for persons with an opioid addiction (10). Because HCV symptoms are often barely discernible, people can live with the disease, often unwittingly, for many years. This can lead to increased infection rates and more extensive liver damage for the person in question (1).

      Forty-eight per cent of OAT patients in Bergen have HCV (11). The INTRO-HCV study examines the effect of the incorporation of HCV treatment into OAT centres and low-threshold services in Bergen and Stavanger (12, 13). The study group received HCV treatment from an OAT centre/low-threshold service, while the control group received standard treatment follow-up at a hospital outpatient clinic. All participants were given the same treatment option, an eight- to twelve-week course of tablets (12).

      Being addicted to drugs whilst also having HCV-related health problems such as fatigue, muscle pain and depression or anxiety has a negative impact on a person’s health-related quality of life (13). Compared to the general population, persons with a drug addiction (SUD) have a low quality of life (14), and chronic HCV affects their physical, mental and social well-being and functioning (13).

      We applied the framework by Dowsett et al. in order to understand what it is like to live with HCV, including how it affects quality of life, physical symptoms, perceived stigmatisation and more (15).

      Quality of life is an important topic for registered nurses (RNs), who are concerned with the whole person (15). An important part of RNs’ work is therefore to help improve the quality of life of persons with an SUD.

      Objective and research question

      In order to gain a better insight into OAT patients’ experiences after HCV treatment, the following research question was formed for the study:

      ‘How do persons with an SUD describe their substance use after HCV treatment and their virus-free status?’

      Method

      The study had a descriptive design. We conducted individual interviews (16), and followed the SRQR guidelines for reporting qualitative research.

      Sample

      The data were obtained through semi-structured interviews, which enabled us to follow up on themes that emerged during the interview (16). The sample consisted of participants of the INTRO-HCV study who had a virus-free blood test after completing HCV treatment (17).

      Participants were recruited by research nurses and the first author. The participants represent a strategic sample, where the aim was to include a wide range of backgrounds and ages and a good gender distribution. The project group in the INTRO-HCV study developed the interview guide, where one of the topics was substance use after finishing HCV treatment.

      The project group consisted of research nurses, doctors and researchers with in-depth knowledge of addiction. The interview guide was developed based on previous research in the field – empirical evidence – and experiences from the INTRO-HCV study group, which included research nurses, senior researchers and user representatives. We adapted the methodology to the thematic analysis process that was planned.

      The interview guide covered topics related to whether they had gained knowledge about HCV that was of significance for their substance use, and whether the treatment had impacted on their drug habit, and if so how.

      Data collection

      We conducted the interviews at rehabilitation centres, low-threshold services or one of Bergen Hospital Trust’s premises. The ability to conduct an interview undisturbed and easy access for the participants were important factors in the choice of interview location.

      The interviews were held in the period June to September 2020 and were recorded on audio tape. Six interviews were conducted by the first author and 13 by research nurses from the INTRO-HCV study. The first author transcribed two interviews, while the rest were sent to a professional transcriber.

      Participants

      The study participants were a) current or former intravenous drug users, b) receiving OAT or in low-threshold services for persons with an SUD in Bergen municipality, or c) virus-free following HCV treatment in the INTRO-HCV study.

      A total of 19 people participated: seven women and twelve men. The participants were aged 35 to 65 years. Six were receiving treatment through a low-threshold service, while 13 were receiving OAT and the associated follow-up.

      Analysis

      The first author and the last author analysed the data together using Braun and Clarke’s six-phase thematic analysis process (18).

      In the first phase, the first author familiarised herself with the content of the data material by reading through all the interviews. In phase two, the initial codes were created, while in phase three, the codes were synthesised and broader themes were created. In the fourth phase, the first and last author reviewed the themes together with the coded data extracts in order to analyse each of the extracts in relation to the context of the theme.

      The themes presented in the analysis were defined and delimited in phase five. In the last phase, the analysis was completed, and we selected which quotes were to be used. The analysis process is shown in Table 1.

      Table 1. Illustration of the analysis process

      Ethical considerations

      The participants were informed about the purpose of the study. We also explained that participation was voluntary, that sensitive and personal information would be anonymised, and that participants could withdraw at any time without giving a reason. Written informed consent for study participation was obtained for the INTRO-HCV study from the Regional Committee for Medical and Health Research Ethics (REK number 2017/51), which this sub-study is covered by.

      Although the participants had the capacity to consent, before each interview we assessed whether the participant was fit to be interviewed, and whether they were high on drugs to an extent that could impair their judgement and capacity to consent.

      Results

      Through the analysis process, we identified three themes: 1) Dependency, 2) Knowledge of HCV, and 3) Changes in the use and method of administration of drugs.

      Dependency

      Some participants injected drugs during and after HCV treatment. In some situations, it was difficult to avoid sharing drug paraphernalia. According to one participant, Sundays could be particularly challenging as all follow-up services were closed, and clean equipment was difficult to get hold of.

      Some described living with a drug addiction as a perpetual cycle of thinking about the next fix. Although they did not want to inject, several felt that they were ‘controlled’ by their addiction. From an outsider’s perspective, injecting drugs and risking being infected with HCV or other infectious diseases can seem irrational. However, the power of the drug could override everything else, and they would consequently prioritise their need to feed their craving rather than avoid sharing drug paraphernalia. ‘Andreas’ explained it as follows:

      ‘I’ve never been such a heavy user as I am now. I’m using more than ever, I don't think it’s particularly great, it’s just that I’ve become so damn addicted. I don’t like [it]. Two minutes later I regret it. But I still can’t stop.’

      ‘Marianne’ described the following:

      ‘I've even shot methadone two or three times just because I’ve been around so many high neighbours and such like, instead of going down and getting heroin, I’ve just shot some methadone. Because temptation got the better of me.’

      The statements illustrate how the addiction, both to the drug itself and to injecting themselves, is so strong that regret and a bad conscience after getting their fix are no obstacle to doing it again. The statement by ‘Marianne’ shows how persons with an SUD can experience their surroundings as ‘triggers’, which can lead to them injecting, and how it is difficult to stay away from drugs and injecting in such settings.

      Knowledge of HCV

      The participants’ knowledge about how HCV was transmitted varied. Although many knew that HCV was transmitted via blood contact and sharing needles, few knew that sharing ‘cooking’ spoons and cotton wool, or sexual contact, were also possible sources of infection. Several said that sharing ‘cooking’ spoons was common. People who trusted each other, for example close friends or partners, often shared drug paraphernalia.

      Some believed that the varying knowledge about HCV among the participants and other persons with an SUD could be related to age. Younger people were less concerned about the consequences and risk of infection with HCV, and they prioritised drugs and sharing drug paraphernalia and were less worried about being infected. ‘Morten’ said the following:

      ‘People my age, they grew up with different principles. We know how hepatitis is transmitted, but the young ones, they know very little about it [how HCV is transmitted]. They still share needles. [They know nothing about] hepatitis C, HIV or other diseases either.’

      Myths can be confused with knowledge, and among persons with an SUD there were several myths about HCV. One myth was that users could be infected if they used their own syringe several times. Another was that completing traditional HCV treatment gave them immunity to HCV. Consequently, they continued to share drug paraphernalia, which in turn may have led to them being reinfected. ‘Inge’ said the following in this regard:

      ‘If I’d had hepatitis once, you can’t get it twice.’

      They also had various theories about how the drug paraphernalia should be cleaned to avoid being infected. ‘Siri’ said the following:

      ‘Some people think that if you use cold water to wash the plunger, some think you have to use hot water, and some think you have to boil the water and then draw in the boiled water. So it varies [what individuals think].’

      These myths show how a lack of knowledge can foster the spread of infection among persons with an SUD. They are also an indication of the importance of providing up-to-date knowledge for this group.

      Changes in the use and method of administration of drugs

      Some participants had changed their substance use and/or method of administration before receiving HCV treatment, while others made a change during treatment. Nevertheless, some were of the opinion that there was no connection between them becoming drug-free and the HCV treatment. Others made a clear link between the two: being virus-free released them from mental and physical burdens, which meant they had the capacity to get to grips with their drug addiction. In that context, ‘Nils’ said the following:

      ‘In order to stop taking drugs, you have to feel healthy and that there’s something better [to come]. You don’t do that when you’re sick, you react all the time, sweating at night, not sleeping well, and that affects your appetite.’

      Many participants felt in better health after becoming virus-free. They therefore felt it was important not to be reinfected. They talked about different ways of avoiding re-infection, such as planning before taking drugs or postponing it until they had clean drug paraphernalia, or not injecting, or smoking or swallowing them instead. The findings also show that the participants were aware of their own hygiene when injecting and knew how to obtain clean drug paraphernalia. In that connection, ‘Kim’ said the following:

      ‘I don’t like sharing equipment. If it can be avoided, I’ll avoid it. If I have to keep a shot inside a syringe for two days while waiting for a new needle instead of a used one, I’d rather do that. But I’ve taken drugs in other ways, because if I haven’t got hold of anything else, I've had to sniff or drink them instead.’

      This statement illustrates how the participant was more aware of avoiding re-infection with HCV. It requires more planning and avoiding impulsive drug-taking. To prevent reinfection, some participants abstained from drugs. In this context, ‘Stian’ said the following:

      ‘Since I don’t want to go through that cycle [of HCV treatment] again, I don’t use anything [illegal drugs]. I only use methadone [prescribed OAT medication].’

      Discussion

      The study shows that the participants found that the HCV treatment impacted on how they thought and acted in relation to the use and method of administration of drugs. In addition, several participants avoided situations that could trigger substance use.

      Knowledge and changes

      Although many participants knew that HCV was transmitted via blood, especially when injecting, their lack of knowledge about the transmission of HCV through other drug paraphernalia was surprising. It is not easy to avoid sharing drug paraphernalia in some situations, which underlines the importance of preventive measures such as the distribution of drug paraphernalia. However, the participants shared equipment less often after the HCV treatment.

      This finding is in contrast to Midgard et al. (19), who found that there was no change in the sharing of drug paraphernalia, either during or after HCV treatment. An Australian study showed that the sharing of needles and syringes did not change after HCV treatment (20), but that the frequency of sharing ‘cooking’ spoons and cotton wool was reduced. Very few of our participants mentioned ‘cooking’ spoons or cotton wool when they talked about drug paraphernalia, which may indicate a lack of knowledge about these as a route of infection.

      Sexual contact is a route of infection that the participants spoke little about, which is also consistent with previous research (21). The fact that close friends and partners often shared drug paraphernalia can be interpreted in different ways. One interpretation could be that the sexual intimacy is transferred to the sharing of drug paraphernalia.

      Another interpretation could be that friends or sexual partners who live at close quarters and do a lot of sharing in general can also share drug paraphernalia. Syringes are already distributed as a preventive measure, but it should perhaps be questioned whether ‘cooking’ spoons and cotton wool should also be included in this preventive strategy.

      We found that some people stopped using drugs intravenously, which is consistent with previous research (19). Being virus-free gave them the physical and mental strength to stay drug-free. It may also have increased their awareness of their health status.

      This interpretation is consistent with Batchelder et al. (22), where the participants were more interested in their health and life in general after HCV treatment. Improved health can lead to a better quality of life in the participants, which is supported by Batki et al. (13), who show that people with HCV in OAT have a poorer health-related quality of life than the general population.

      We also know that self-stigmatisation, i.e. internalisation of stigma, together with a lot of psychological stress, has a negative impact on the social functioning of persons with an SUD, which impairs their quality of life (23). Therefore, better relationships with family and friends and not being controlled by their substance use can help improve quality of life for many (24).

      The desire to reduce or stop the use of substances after HCV treatment can provide scope to act, which RNs should be aware of as they can help motivate persons with an SUD to reduce their substance use or receive treatment for this, thereby improving the person’s quality of life (25).

      Generation gap

      There may be different explanations for the varying knowledge among persons with an SUD of how HCV is transmitted. The participants highlighted age as a key factor in this context. They cited a generation gap among persons with an SUD – between those who were young in the 1980s and 1990s, who were acutely aware of and feared HIV and AIDS, and the young addicts of today, who are less concerned by this.

      Furthermore, participants in their fifties and sixties may have been in a process of change where, after a long life of using drugs, they no longer wanted to be part of the drug scene and were thus more concerned with their health than the younger participants. The oldest participants also seemed to use their knowledge about HCV infection more actively than the younger ones, for example by not sharing drug paraphernalia.

      This finding is also supported by Cook et al. (26), who found that participants with fewer than five years of intravenous drug use were more likely to share drug paraphernalia than participants with a longer history of injecting.

      Myths need to be debunked

      The myth that HCV treatment provides immunity needs to be debunked, as such myths can result in the spread of infection. Information about liver damage in people with HCV is often misunderstood (27). The variation in the level of knowledge about routes of infection in our study may be because the participants did not understand the information given to them, and the myths therefore continue to be perpetuated.

      A well-known strategy for debunking myths is to provide factual information to persons with an SUD and people in their immediate environment. Information campaigns can be time-consuming and often have little effect (27), as information in itself does not necessarily lead to behavioural change.

      This does not necessarily mean that we should stop providing information, but the information must be easy to understand. Verbal and written information should be provided regularly, as some persons with an SUD lead chaotic lives and have various cognitive challenges (28). RNs who work closely with persons with an SUD and provide health-promoting information are therefore crucial to this work.

      Strengths and limitations of the study

      One of the strengths of the study is the number of interviews, the broad span of ages and the fact that both sexes are well represented. The methodological approach enabled us to obtain different perspectives on how HCV treatment may have led to changes in substance use.

      A possible limitation of the study is the length of the interviews. On average, the interviews lasted 40 minutes. If they had been longer, we may have been able to gain a more in-depth understanding and explore each question in more detail. However, Fadnes et al. (29) show that memory impairment and selective memory affect participants’ responses. A longer interview would, therefore, have been challenging for some participants and difficult to carry out due to their concentration problems, lack of memory and restlessness.

      Researchers’ preconceptions can be a strength and a weakness. The analysis was carried out by researchers with extensive knowledge about drug users. This prior knowledge can influence the interpretation of the data, for example with expressions and slang words used in the interviews being interpreted and used in the analysis.

      We consider such preconceptions a strength. However, they can also be a weakness, as certain terms can be assumed, without the researcher exploring exactly what the individual means. In such cases, misunderstandings can arise in how the various terms are used.

      Objectivity is often sought in research. In qualitative studies, we are aware that the lens of research can influence the study, and that the researchers’ understanding does not always align with that of the participants. We remained aware throughout the entire analysis process in this study of how our contribution could influence the research. By using a data-driven inductive analysis process, several research nurses to interview the participants, and contributions to the analysis process from other members of the project group, we have tried to dilute the possibility of the researchers’ preconceptions dominating.

      Conclusion

      The desire of persons with an SUD to ease withdrawal symptoms coupled with the craving for a fix can lead to the sharing of drug paraphernalia, especially if clean equipment is not readily available. Although some people change their substance use prior to HCV treatment, there are more who make changes during and after treatment. These changes may be due to a desire to take care of their health and thus change their lifestyle, including less harmful substance use. A few also stopped using drugs altogether.

      HCV treatment gives us RNs an opportunity to motivate persons with an SUD to change their substance use. It is particularly important for RNs to have knowledge of this scope to act in order to carry out good preventive and health-related work.

      The authors declare no conflicts of interest.

      Peer-reviewed article
      Publication type
      Publication Year
      2023
      Edition Year
      18
      Publication Number
      91190
      Page Number
      e-91190

      Drug users who were virus-free after treatment for HCV found it easier to get to grips with their drug addiction.

      Article is Peer Reviewed
      1
      Innsendte kommentarer kvalitetssikres før publisering. Kvalitetssikringen skjer i vanlig arbeidstid.
      Research
      English
      Sammendrag

      Background: Hepatitis C is a chronic disease that often has few and non-specific symptoms for several decades before complications arise. In Norway, the aim is to reduce new infections of the hepatitis C virus (HCV) by 90% by 2023. The goal is also for no one to die or become seriously ill from HCV. Intravenous drug users constitute the group that is at highest risk of HCV infection because they share drug paraphernalia such as syringes, needles, ‘cooking’ spoons and cotton wool. With this backdrop, the INTRO-HCV study was conducted in Bergen and Stavanger, where HCV treatment was incorporated into drug-assisted rehabilitation for persons with an opioid addiction.

      Objective: The purpose of the study was to explore the significance of HCV treatment for the patients’ substance use.

      Method: A qualitative study design with a hermeneutic approach was used. The data are based on 19 semi-structured interviews. The participants were current or former intravenous drug users in drug-assisted rehabilitation or low-threshold services for persons with a drug addiction in Bergen municipality, and were virus-free following HCV treatment. We used Braun and Clarke’s thematic analysis process.

      Results: The participants stated that it was more difficult to avoid sharing drug paraphernalia in certain situations, as the drug craving and addiction overshadowed the risk of infection. Their knowledge of how HCV was transmitted also varied. Some confused myths with knowledge. The participants’ substance use changed to varying degrees. Some had made changes before starting HCV treatment, some made changes during treatment, while others did not make any changes. The changes mostly consisted of reducing or stopping the use of substances, changing the method of administration or changing the type of substance.

      Conclusion: The study shows that HCV treatment impacted on the substance use of some participants, as being virus-free made it easier to get to grips with their drug addiction. In this context, motivating change and providing information and guidance are an important part of nurses’ health promotion work.

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      • Many find it difficult to undergo traditional HCV treatment, as persons with a drug addiction are required to attend hospital appointments. Incorporating hepatitis C treatment into drug-assisted rehabilitation or primary care follow-up services increases the likelihood of them completing the HCV treatment and thus becoming virus-free. Few Norwegian studies examine the experiences of persons with a drug addiction with HCV treatment and its impact on substance use.
      • Virus-free participants were interviewed about their experiences with substance use after completion of HCV treatment.
      • The study provides important knowledge about the participants’ substance use after HCV treatment as well as the impact of the treatment in terms of getting to grips with their addiction. Such knowledge is important as it shows the scope that nurses have to, for example, motivate patients to change. The study also provides insight into the participants’ thoughts and attitudes towards the culture of sharing drug paraphernalia and the myths surrounding this. Such insight is important as it identifies the challenges that nurses face in their preventive health work.

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