Introduction

In Norway, approximately 18,000 people need intensive care treatment annually (1). Critically ill patients are exposed to several sources of discomfort in the intensive care unit (ICU) (2). Pain, thirst, anxiety, dyspnoea and inadequate sleep are the five most common and stressful symptoms ICU patients can experience (3). 

While pain has traditionally been the primary focus of symptom research, dyspnoea has received increasing attention in recent years (2, 4). Like pain, dyspnoea can be experienced by the patient despite analgosedation and should be evaluated daily (3). Dyspnoea is defined as ‘a subjective experience of breathing discomfort that consists of qualitatively distinct sensations that vary in intensity‘ (5, p. 436).

Studies report that 34–55% of adult ICU patients reported significant dyspnoea (6–8). A recent multi-centre study that also included patients from our site found that one in three patients self-reported difficulty breathing during the first seven days of their ICU stay (9). Being a stressful symptom for the ICU patient, dyspnoea can also negatively impact treatment and result in failed or delayed weaning from mechanical ventilation (10, 11). Furthermore, ICU-related dyspnoea is associated with post-traumatic stress disorder (8). 

The trend in recent decades has been for patients to remain more awake in the ICU, be mobilised earlier and receive lower doses of sedatives. The prevalence of dyspnoea may increase when patients receive less sedation or are ventilated with lower tidal volumes; however, many ICU patients are unable to communicate their symptoms (11–13). 

Patients unable to communicate due to factors such as delirium, use of sedatives and endotracheal tubes make dyspnoea evaluation challenging (12). These factors, combined with the feeling of not being able to breathe as much as the body requires, may lead to anxiety for patients (4, 7, 14). Despite its impact, dyspnoea is often underestimated and underreported by healthcare professionals (6, 14, 15). 

Haugdahl et al. enrolled 100 ICU patients and found that nurses and physicians underestimated dyspnoea in 56% and 48% of patients, respectively (15). These findings highlight the need for validated tools to identify dyspnoea in non-communicative ICU patients (16).

The Intensive Care-Respiratory Distress Observation Scale (IC-RDOS) and the Mechanical Ventilation-Respiratory Distress Observation Scale (MV-RDOS) are two hetero-evaluation symptom assessment scales intended to aid healthcare professionals in identifying dyspnoea in non-communicative critically ill patients (17, 18). 

Both scales are meant to be used with ICU patients who are unable to self-report, IC-RDOS for patients not receiving MV and MV-RDOS for patients receiving MV. IC-RDOS and MV-RDOS are based on Campbell’s work with the original RDOS to identify dyspnoea in palliative patients (17, 19). 

Both scales consist of five items: heart rate, use of neck muscles during inspiration, abdominal paradox during inspiration, and facial expression of fear. Use of supplemental oxygen only applies for IC-RDOS, and respiratory rate only applies for MV-RDOS. Together, these items constitute a total score to assess dyspnoea. Patient self-report using a visual analogue scale (D-VAS), an alternative to a numeric rating scale (NRS) for alert and verbal patients, is the gold standard for assessing dyspnoea in the ICU (11). 

Both IC-RDOS and MV-RDOS demonstrate acceptable to excellent predictive value for identifying dyspnoea on a visual analogue scale (D-VAS ≥ 4) with area under the curve values of 0.83 and 0.78, respectively (16, 17). IC-RDOS is recommended to identify dyspnoea in spontaneously breathing patients, and a score ≥ 2.4 predicts D-VAS ≥ 4 with a sensitivity and specificity of 72% (17). 

MV-RDOS is designed for mechanically ventilated patients, and a score of ≥ 2.6 predicts dyspnoea with D-VAS ≥ 4 with a specificity of 57% and a sensitivity of 94% (16). Comparable metrics have been shown in a recent study (20). The scales have been used in recent studies, including to predict weaning outcomes and to investigate an association with mortality (10, 20). 

Like other symptom assessment scales, both instruments are used as surrogates for self-reporting and should only be used when patients are unable to communicate (12). This is justified by dyspnoea being a subjective symptom, and self-reporting is the gold standard (5, 11). 

Currently, there is no validated method to evaluate the dyspnoea of ICU patients without the ability to self-report in Norwegian ICUs. The need for a more systematic approach to identifying and managing dyspnoea in our ICUs has become evident. We believe that a Norwegian adaptation of IC-RDOS and MV-RDOS could support healthcare professionals in making an evidenced based evaluation of dyspnoea in ICU patients without the ability to self-report.

Aim of the project

The overall aim of the project was to translate both IC-RDOS and MV-RDOS into Norwegian and evaluate the inter-rater reliability (IRR) of the Norwegian versions.

Method 

To ensure the correct method and design, the study design checklist for patient-reported outcome measurement instruments from COnsensus‐based Standards for the selection of health Measurement INstruments (COSMIN) was chosen as a guideline for the IRR testing (22). STrengthening the Reporting of OBservational studies in Epidemiology (STROBE) was applied to ensure appropriate reporting (23).

The project was conducted as a quality improvement project involving two phases. First, the translation process of IC-RDOS and MV-RDOS was performed (24). We then applied a prospective observational design to evaluate the IRR and measurement errors of the scales. A quality improvement project was chosen to provide a more systematic approach to evaluating dyspnoea in ICU patients who are unable to self-report in our ICUs (25). 

To translate IC-RDOS and MV-RDOS, we used an international recognised guideline that emphasises the importance of linguistically and culturally adapted translation related to the setting in which the scale is supposed to be used (24).

Setting and population

Data for the reliability analysis were collected in four ICUs in a referral university hospital in Norway including both medical and surgical patients. Two of the units have ten beds, and the other two have six beds; both are categorised as level three units (1). Level three units have the capacity to manage advanced organ-supportive therapy for multiple organ systems including invasive mechanical ventilation (26). 

The inclusion criteria for this project were patients over the age of 18 years, admitted to the ICU, and defined as ICU patients (ICU stay > 24 hours, use of vasoactive medication, or in need of mechanical ventilation) (1). Patients receiving muscle relaxants, declared brain dead, or able to self-report dyspnoea were excluded. We chose to include patients with various scores on the Richmond Agitation Sedation Scale (RASS) to ensure representation of all non-communicative ICU patients. 

Prior to the data collection, we set a maximum threshold of 10% of mechanically ventilated patients (five patients) to be unresponsive, defined as RASS of −5, to ensure the instrument was tested on heavily sedated patients, despite it being likely that these patients have physical signs of dyspnoea. Some patients were assessed twice with a minimum of 48 hours between assessments to ensure independence.

Data collection

Patient ratings were performed using the Norwegian versions of IC-RDOS and MV-RDOS by two ICU nurses with six and eight years of ICU experience. This approach was chosen to minimise external factors influencing measurement errors. Dyspnoea assessment was performed simultaneously and independently, with no discussion or access to view each other’s results until the project was completed. 

Both raters participated in the translation of the scales. Descriptive clinical characteristics (i.e. Simplified Acute Physiology Score (SAPS) and RASS) of the patients were collected from the electronic health record. We included patients from November 2021 to March 2022.

Sample size

We estimated the sample size using power analysis, a priori, to be 50 assessments per scale with two raters. The sample size for Cohen’s kappa was estimated using the Cicchetti and Fleiss (27) formula n = 2k², where n is the sample size and k is the number of items in the scale. 

A parallel power analysis for intraclass correlation coefficient (ICC) indicated a smaller required sample. Consequently, we chose the power analysis of Cohen’s kappa to increase the strength of the project. The intention was to use Cohen’s kappa in the analysis, but after the data collection was completed, we changed this analysis to Gwet’s agreement coefficient 1 (AC₁) due to a better fit for the data collected. Therefore, the sample size was based on Cohen’s kappa instead of Gwet’s AC₁. 

A sample size of 50 assessments per scale is, however, in accordance with the recommendations of COSMIN (22). During the project, we increased the sample size of MV-RDOS to 60 due to the low frequency of some of the dichotomous traits.

Statistical analysis

Descriptive statistics were used to summarise the patients’ characteristics: continuous variables are reported as median with interquartile range (IQR) and categorical variables as frequencies (%) and counts. The IRR was analysed separately for each scale. For the total score and continuous items, we used a two-way random, average score, absolute agreement ICC (2, k) (28, 29). Normality of the residuals was assessed with Q-Q plots. Gwet’s AC₁ was chosen for the dichotomous item due to robustness against trait prevalence (30). 

We used Altman’s scale to benchmark both Gwet’s AC₁ and the ICC. A Gwet’s AC₁/ICC below 0.2 is considered ‘poor‘, 0.21–0.4 as ‘fair‘, 0.41–0.60 as ‘moderate‘, 0.61–0.8 as ‘good‘, and above 0.81 as ‘very good‘ (31). The measurement errors are presented with 95% upper and lower limits of agreement (LoA) with confidence intervals for the total score and the continuous items (32). 

In addition to total percentage agreement, we also calculated positive and negative agreement of the dichotomous items (33). Systematic differences between raters were tested using the paired t-test and McNemar’s test (30).

The data were analysed using R version 4.1 (R Foundation for Statistical Computing, Austria, 2021), with a significance level at 0.05 and a 95% confidence interval (CI) where applicable. 

Ethical considerations

This quality improvement project was first presented to the Regional Committees for Medical Research Ethics in Southeast Norway (reference number 2021/325676) but fell outside their mandate. The data protection office at the hospital approved the project, and the need for consent was waived (reference number 21/19413).

Results

Translation of IC-RDOS and MV-RDOS

We describe each step of the translation process in Table 1, which constitutes the final report of the process. We want to emphasise the choice to use medical terminology over layman’s terms to describe the items in the present project as a cultural adaption. For example, ‘Use of neck muscles during inspiration‘ was translated to ‘Use of accessory muscles during inspiration‘, as the instrument will be used by health care professionals. 

Furthermore, it is standard practice in Norway not to translate the name or abbreviation of scales used in the ICU. The translated versions of the IC-RDOS and MV-RDOS are presented in Figure 1. The back-translated version was accepted by the developer of the scales without disagreement.

Patient characteristics 

This project enrolled 81 ICU patients. The median patient age was 60 (IQR 51, 69), and 64% were male. Most of the included patients were acute surgical cases (42%). The most frequent reason for admission was ‘respiratory‘ (24%). 

We performed 50 and 60 pairs of assessments for IC-RDOS and MV-RDOS, respectively. The median RASS at the time of the assessment was −1 (IQR −2, 0) for the non-mechanically ventilated patients and −3 (IQR −4, −2) for the mechanically ventilated patients, indicating drowsy and moderately sedated, respectively. The patient characteristics are summarised in Table 2.

Reliability of IC-RDOS

The total score of IC-RDOS had an ICC of 0.98 (CI 95% 0.96 to 0.99), indicating ‘very good‘ IRR. The mean difference between the raters for IC-RDOS was 0.08 (t = 0.21, df = 49, p = 0.98), with LoA ranging from 1.19 to −1.03.

Reliability of MV-RDOS

The total score of MV-RDOS had an ICC of 0.92 (CI 95% 0.86 to 0.95), indicating ‘very good‘ IRR. The mean difference between the raters for MV-RDOS was 0.003 (t = 0.01, df = 59, p = 0.99), with LoA ranging from 1.77 to −1.77. 

For both scales, the item with the lowest degree of IRR was ‘use of neck muscles during inspiration‘ with an AC₁ of 0.87 (CI 95% 0.74 to 1) for IC-RDOS and 0.77 for MV-RDOS (CI 95% 0.61 to 0.93). All ICC and Gwet’s AC₁-values, LoAs, and percentage agreements are presented in Table 3. Measurement errors for the total scores are illustrated in Figure 2. 

Discussion 

In this project, we translated IC-RDOS and MV-RDOS (Figure 1) and evaluated the Norwegian versions’ inter-rater reliability. The main findings of this project are that the total scores of both instruments demonstrated ‘very good‘ IRR. All the dichotomous items, except ‘use of neck muscles during inspiration‘ had total agreement for the non-mechanically ventilated patients with the use of IC-RDOS. The total score of IC-RDOS had higher ICC values than MV-RDOS. All dichotomous items without complete agreement had greater negative than positive agreement.

To our knowledge, only one project has investigated IRR in IC-RDOS (17). Persichini et al. (17) found moderate consistency for the total score and variable IRR across the individual items. However, their study included multiple raters, which may have contributed to lower agreement than in our project, which had only two raters. 

In our project, we found that the total score had a ‘very good‘ IRR for both scales, but IC-RDOS had a slightly higher ICC than MV-RDOS. The differences in the ICC for the total scores of the two scales may be explained by an increase in subjectivity in the interpretation of the items. It is also possible that these behavioural signs are more subtle in mechanically ventilated patients than in non-mechanically ventilated patients due to a lower RASS or use of sedation. While this project did not explore the underlying differences in ICC, it is a known challenge to identify behavioural signs in mechanically ventilated patients (34). 

The item with the lowest degree of agreement on both scales was ‘use of neck muscles during inspiration‘. Nevertheless, the item still had ‘good‘ and ‘very good‘ agreement. The raters may have slightly different perceptions of what the item characterises. Alternatively, the item may be inherently more difficult to interpret than the other items on the scales. It is important to consider these findings in the further implementation of the scales as extra focus may be needed for this item. 

Previous studies have found varying degrees of agreement for this item (17, 35). To address this, we designed a user guide to aid clinicians in using the scales correctly and thus minimise these events during future use. However, this item does not affect the total score in such a way as to make the scales less reliable.

A facial expression of fear is characterised by wide-open eyes with visible irises (36). We observed a lower IRR for this item for mechanically ventilated patients Thus, these patients may not have had the ability or may have shown it more subtly because they were more sedated than non-mechanically ventilated patients (34). The subtle display of the sign may have led to a greater variation between the raters in this project. 

Facial expressions can be a powerful predictor of dyspnoea (17) but they were uncommon in our sample. In mechanically ventilated patients, ‘facial expression of fear‘ had the highest discrepancy between positive and negative agreement. This discrepancy may be influenced by the low prevalence of the sign in mechanically ventilated patients and was the reason we applied Gwet’s AC₁, which is resilient to trait prevalence (30). Gwet’s AC₁ favours the overall agreement, but the low agreement in the actual presence of ‘facial expression of fear‘ must, therefore, be taken into consideration in future implementation processes.

The measurement errors of IC-RDOS and MV-RDOS have not been examined in previous studies. To clarify, if both raters are in complete agreement except for on one dichotomous item, the total score will deviate by as much as two points. In this project, the LoAs of the total score of IC-RDOS and MV-RDOS are below two, which indicates most of the differences in the total score can be explained by the difference in only one dichotomous item or less. 

In fact, the raters disagreed on two dichotomous items in only one assessment. We were not able to follow the recommendation to set a desired LoA prior to data analysis as our project is the first to describe the measurement error (37). Our findings offer a base for future studies to compare the measurement errors of the scales.

Following data collection, we observed clear differences between total percent agreement and Cohen’s kappa, explained by the kappa paradox (33). This prompted a search for alternative methods. Cohen’s kappa assumes that the raters evaluate all observations independently from the other evaluations, which was not the case in our population. The dichotomous items would have been falsely deemed to have low IRR explained by low prevalence (38). In such cases, Gwet’s AC₁ provides a more stable estimate (30). 

We chose to use Gwet’s AC₁ in the evaluation of the dichotomous items, which is an advantage of this project due to a more precise presentation of the results (38). If we had solely relied on Cohen’s kappa, it might have led to delayed or failed implementation of a validated method for evaluating dyspnoea in ICU patients without the ability to self-report in Norway. 

The patients included in this project do not fully represent the general ICU population. The first consideration relates to our inclusion of only patients from a referral hospital. This could have resulted in the inclusion of more severely ill patients or patients with rare conditions. A recent review demonstrated patients receiving non-invasive ventilation (NIV) self-reported both high prevalence and intensity of dyspnoea (39). 

In addition, out of the 60 assessments performed on mechanically ventilated patients, only 4 (7%) used NIV. As a result of this we cannot say the Norwegian version of the scale has been fully tested on patients receiving NIV. A final consideration is that the assessments were done on median day 6 and 10 in the ICU for IC-RDOS and MV-RDOS respectively. This differs from our ICUs in general with a median length of stay of 3 days, indicating that the instruments have been tested in patients with a prolonged ICU length of stay (1). 

The median SAPS II score of 51 indicates that the included patients were severely ill, reflecting the patient population at the hospital. Less severely ill ICU patients are more likely to be able to self-report their symptoms and consequently were excluded from the project. These factors combined point out that our sample of patients were severely ill ICU patients, but we argue that the scales still can be applicable to less severely ill ICU patients. Still, we have demonstrated the possible use of the translated version of IC-RDOS and MV-RDOS in Norwegian ICUs. 

A recent statement from the European society of intensive medicine recommends the use of IC-RDOS and MV-RDOS in the evaluation of dyspnoea in ICU patients who cannot self-report (10). 

Providing a Norwegian version of the scales will make it easier for clinicians to assess dyspnoea in ICU patients unable to self-report. Introducing these scales into clinical practise may promote a common language in the assessment of dyspnoea, hopefully resulting in improved patient care and reduced symptom burden. Further, being able to measure dyspnoea in a valid and reliable manner can facilitate future research on the associated factors related to dyspnoea in ICU patients.

Limitations 

We chose not to perform dyspnoea evaluations on all non-communicative patients to ensure validity for a wider patient selection. Including all non-communicative patients may have biased the results in favour of deeply sedated patients, resulting in items such as ‘facial expressions of fear‘ having a lower prevalence. The raters gathered background information before every assessment. 

In retrospect, knowing the background information before the assessment may have introduced confirmation bias, and this information therefore should have been collected after the assessments. The sample size was based on Cohen’s kappa instead of Gwet’s AC₁. However, the sample sizes of 50 and 60 assessments are more than the recommended threshold (24). 

Both raters were involved in the translation process. However, we believe the behavioural signs would have shown a higher prevalence or a systematic difference between the raters if confirmation bias was introduced. In future clinical use, a lower IRR must be expected due to a greater diversity of raters.

Further research

Regarding the validity and reliability of the Norwegian version of IC-RDOS and MV-RDOS in a larger population of ICU patients, further research is warranted after implementation with a greater diversity of raters. Power analysis should be based on Gwet’s AC₁ due to the expected low prevalence in the dichotomous items. 

Conclusion

In this article, we presented a Norwegian version of the IC-RDOS and MV-RDOS and evaluated the scales’ IRR. The primary result indicates the total score of the scales demonstrated ‘very good‘ IRR. Further research regarding the Norwegian version of IC-RDOS and MV-RDOS should focus on a wider range of psychometric properties. 

Dyspnoea is a subjective experience and is often underestimated by clinicians. We believe that IC-RDOS and MV-RDOS can contribute to both increased awareness and evidence-based assessment of dyspnoea experienced by ICU patients. 

Based on the findings of this project, the scales may be suitable for implementation in Norwegian ICUs. Using the IC-RDOS and MV-RDOS in clinical practice is likely to increase awareness and improve symptom management.

*Peder Sebastian Martinsen and Runa Austad Haug share first authorship.

The authors declare no conflicts of interest.

Open access CC BY 4.0

Introduction

In recent decades, the parental role has changed. There is greater focus on the child’s self-development – physically, mentally and emotionally (1). The term ‘intensive parenting’ describes these changes, with the child as the centre of attention and the parents expected to be available for the child in all areas (2, 3). 

Intensive parenting is based on accepting that an infant’s experiences will have lifelong consequences. The parents’ caring abilities are linked to improved well-being for the child later in life (4). The role of the child has changed, and children are seen as competent actors in the family democracy (5). Parents are affected negatively by the social pressure to master working life while being the ‘perfect parent’ (6). 

Access to various screen media devices has increased markedly in recent decades. Children are exposed to screens from infancy, and in Norway almost 50% of children under the age of five watch television every day (7). Research on screen use shows that the family’s socioeconomic situation, the parents’ educational level and screen habits are factors affecting children’s screen use (8). 

Parents’ strategies for child-rearing in the encounter with electronic devices are referred to as ‘digital parenting’ (9). These strategies range from fully embracing screen use to imposing strict restrictions. Norwegian parents often have an active strategy whereby they provide explanations for their children and prepare them for the digital world. 

Parents and those working with young children are concerned about the consequences of children’s screen use (9–11). Several review articles link excessive screen use to negative health impacts on children such as sleep problems, overweight and increased risk of depression (12–14). However, some studies also show that playing computer games together can have a positive effect on the interaction of parent and child (15–17). 

The recommendations of the Norwegian Directorate of Health on children’s screen time state that children under the age of two years should have no screen time, while children under the age of five should have no more than one hour’s screen time per day (18). Several studies suggest that the mothers’ lack of knowledge may result in an earlier introduction of screens and significantly more screen time (19, 20). Some studies show that screens are often introduced to children under the age recommended by the World Health Organization (WHO) (21, 22).

Objective of the study

In Norway, we currently know little about the youngest children’s screen use and parents’ motivation for allowing them to use a screen (20). As public health nurses, we note how screen use is increasing in parent-child interaction at the child health centre. The objective of the study is to shed light on parents’ experiences of screen use in children under school age. 

In this study, ‘screen use’ refers to digital devices that the child uses or is exposed to via their parents’ use. The term ‘screen’ includes television, tablet and mobile telephone.

Method

The study has a qualitative design and uses a hermeneutic approach based on the interpretation of empirical data (23). The aim was to obtain greater knowledge of how parents perceive children’s screen access, and their experiences when regulating this. Better understanding of the parental perspective is important for public health nurses in their guidance of parents with young children at child health centres. 

Data collection was carried out via focus group interviews in order to promote an exchange of experiences and elicit variations and nuances in attitudes towards screen use (24). 

Recruitment and sample

The participants were recruited via formal communication with various rural municipalities and one urban municipality. Those who gave their consent received written information prior to the focus group meeting or when they attended. 

The inclusion criteria were having at least one child under school age and the ability to participate in a group discussion in Norwegian. A total of ten informants were recruited, distributed across three focus groups. Seven women and three men participated in the study. They all had a partner with whom they shared parental responsibility, and the majority had two children under school age in the family (Table 1). The sample was homogenous in terms of socioeconomic background and ethnicity. 

Data collection

Three focus group interviews were conducted using a semi-structured interview guide. Two of the groups had three participants and the third had four. Some of the participants came from small municipalities where they may have already known each other.

We carried out the interviews, which lasted from 50 to 60 minutes, in autumn 2023. The first and second authors took it turns to be moderator and co-moderator. We audiotaped the interviews, which were transcribed verbatim afterwards. 

Analysis

The data were coded and analysed using Aksel Tjoras’ stepwise deductive-inductive method (SDI) (25). This is a structured analysis method that precludes reaching hasty conclusions. Both authors carried out the empirical coding individually, and this was then converted into a joint set of codes that were refined to code groups. Subsequently, we worked in partnership to generate themes and subthemes in light of the theoretical framework on changes in the parental role and the child’s role in the family (Table 2) 

Ethical considerations

The study was reported to the Norwegian Agency for Shared Services in Education and Research (Sikt) (reference number 615343). In line with national research ethics guidelines, all informants received information about the study and gave their written consent to participating (26). The interviews were audiotaped and stored in Nettskjema. The data material was anonymised during transcription. During the analysis, we kept in mind our own bias regarding the subject.

Results

The parents’ thoughts about screen use were generally emotional. The findings were divided into two main themes: 1) ‘The screen as something positive’, and 2) ‘The screen as something negative’. 

The screen as something positive

The screen was described as a positive and necessary contributor to the family, with screen time together with the child providing an opportunity for shared time. The parents highlighted their pleasure in observing the child’s enthusiasm or finding out what games the child mastered: 

‘It’s great fun seeing how involved he is in it. I think it’s an enjoyable activity we do together’ (Informant 10).

The parents found the quiet time together with their children enjoyable in their otherwise busy daily life. They believed that the children noticed that their parents were also having a good time relaxing in front of the television, so that it was a positive experience for the child. 

However, the parents made it clear that they were not willing to watch just any programme. They wanted to have a say in deciding what the child should watch, as the quality of different children’s programmes vary. 

If both adults and children were watching something in which they were both interested, the informants felt that shared screen time could allow them to talk about what was happening in the programme. One of the informants said the following: 

‘It’s easy to join in, talk to them, there’s something in that. You can learn something about some feelings, reactions, that kind of thing’ (Informant 6).

In addition to shared time, the parents used the screen to cope with a hectic workday. They could make a meal without being disturbed, or do other tasks without having the children in tow. The child’s screen time was described as ‘sacred’, and the parents said that it gave them a break from the parental role without the child feeling they were being excluded. 

When the parents did not have the capacity to play with the child, they regarded the screen as an opportunity to have personal time. Several informants believed that personal time was essential for them to be the best version of themselves. Some described it as a break they could use to reset and find new energy for better interaction with the child.

The screen was also described as a useful diversion, for example when the family had to drive long distances, or when brushing teeth or when there was general unrest. Meanwhile, several parents emphasised that using the screen as a diversion during meals or as a consolation or reward was not good for the child. 

The screen as something negative

The screen was described as a necessary evil, and the parents worried about how screen use affected their children. The parents often had a bad conscience when reflecting on how they regulated their children’s screen time and how the screen made their children passive. One informant described how their daughter said nothing about her basic needs: 

‘If she has a wet nappy, the TV can make her ignore it’ (Informant 2). 

The parents found that their children were engrossed by the screen and that it was difficult to achieve contact with them. They described some programmes as particularly provocative, and a few described such programmes as ‘toxic TV’. 

They pointed out that it was particularly challenging to end screen use and it resulted in an emotional explosion. One parent said that if their child got angry when they turned off the TV, they often had to allow the child to use their mobile for a while to calm down. Many of the parents had found that switching off led to conflict with the child even when another fun activity was planned: 

‘It’s often negative, trying to do something else that might have been fun to start off with. The screen wins every time’ (Informant 6). 

Concerns about screen use were also linked to possible long-term consequences. Parents vacillated between thinking that ‘everyone knows too much screen time is not recommended’, and ‘is it really that bad?’. They wanted to limit screen time so that their children were not sitting inside and ‘missing out on the world outside’. 

The findings depict parents who deal with their children’s screen time with uncertainty and ambivalence. Doubt and feelings of guilt dominate. The recommendation of no screen time for children under two years of age appears impossible to achieve. Parents spend a lot of energy thinking about their children’s screen use: 

‘I sort of notice that I’m really stressed by it and actually think a lot about it in my daily life’ (Informant 3). 

Another informant said, ‘Just today, an alert popped up saying, ‟When children under the age of five watch TV more than two hours a day,” – that’s quite a lot actually – ‟they have eight times more chance of getting ADHD and becoming overweight and having anxiety and depression.” So I just thought, ‟Oh my goodness, yes, that’s true”’ (Participant 10).

Our findings indicate that parents regard themselves as the ones to blame for the child’s screen use. They use expressions like ‘resort to’ the screen, or that it is difficult to refrain from using the screen ‘in a pinch’:

‘And it’s kind of like, when everything is hopeless, and everything is kind of wrong, and they don’t want to take part in baby gym, don’t want to do anything, you know that the screen will work. So it’s kind of sad, really’ (Informant 10). ‘It’s really sad. But it’s also great’ (Informant 9).

Several parents felt guilty because they allowed more screen time than they had planned. Even though they had clear opinions on regulating screen time before they had children, several acknowledged that they had had to compromise in the child’s very first year.

The conversations between the parents about their children’s screen use are affected by the media. Several asked whether what is published is research-based, or if it is fearmongering without scientific evidence. One informant reflected:

‘So I think it’s important to give guidance on what’s good enough, what are the consequences of failing to follow the advice, how bad is it, what can you compare it with, kind of. Like, how bad can it be? Say that you, you’re falling apart, and you just … there isn’t a minute of the day you don’t stick a screen in the kid’s face. What happens then? But I think it’s important to minimize the danger, as long as there’s evidence. Minimize the danger and reduce the shame’. (Informant 8)

Discussion

This study sheds light on parents’ experiences of screen use in young children. The findings are discussed in light of parental role theory and views of the child’s role in the family. Parents’ experiences alternate between enthusiasm for the opportunities offered by screen use and difficult emotions linked to how it affects the child. 

Digital parenting is a struggle between good and evil 

The screen is well integrated into family life (27). Our study and previous studies find that parents are concerned about their children’s screen use (9). Nevertheless, they frequently do not live up to their own ideals regarding how much screen time children should be allowed (16). 

To legitimise screen use, they highlight the positive aspects, for example the child’s enjoyment and learning opportunities. Meanwhile, as other studies confirm, parents spend considerable energy worrying about the possible consequences of the screen use that they themselves permit (6, 28).

Studies show that the screen can have a positive impact on parent-child interaction when used as an educational tool and shared experience (15–17). The findings in our study confirm this, but the parents emphasised that what they watch together with the child must have some educational quality. 

The parents’ discussion of screen use is morally charged. The clash between what the parents describe as ideal screen use regulation and the child’s actual practice creates considerable stress. They acknowledge that they are unable to stay plugged into the parental role the whole time as the ideology of intensive parenting requires (2, 3), but that they allow their children to use the screen in order to get a longed-for break. 

They appear to be paying for this through a bad conscience and greater stress, a finding supported by other research (29). In contrast to other studies, our findings indicate that parents are aware of strategies for screen use regulation but lack the energy to apply them. 

When the children attend kindergarten and the parents are at work, this limits interaction between them to afternoons and weekends. We found that afternoons are particularly hectic for families with young children. Making dinner and doing housework are among the activities the parents must cover. Meanwhile they want quality time with the children to promote physical, mental and emotional development in line with ‘intensive parenting’. They are often exhausted and struggle to find personal time. It is well documented that children are often placed in front of the screen at this time (28, 30). 

Some studies point out that the screen solves the stress and time squeeze parents experience in their daily lives (11, 31), while others show that the child’s screen use can lead to greater stress for the parents (32). 

We found that the parents are keen to be good parents. They want to take part in interaction with the child, and the limited amount of time they spend together should be positive. The screen is an effective tool for distracting their children when it comes to brushing teeth, long drives or using a baby changing unit, and enables them to manage everything. The screen is both a childminder and pacifier – it is used as a reward, a distraction and a comfort. In a society where demands on the parents of young children seem almost unmanageable, it allows them to cope. 

The public debate on screen use is a heavy burden on parents 

Our study reveals that it is a common perception that screens are bad for children. The public debate in the media is the source of this perception. The discourse affects parents by making them uncertain of their own choices as regards regulating the child’s screen use. They believe that society’s discussion of screen use is one-sided and focuses only on concerns. Navigating a society where access to screens is so widespread becomes more difficult when there is a lack of nuance in the debate. 

Previous research indicates that parents’ knowledge of screen recommendations is relevant for the amount of screen time they allow their child (8, 19, 20). However, parents think it is difficult to know what to believe, and find current screen recommendations difficult to uphold (30). 

Our findings suggest that parents may know about the recommendations but nevertheless permit their children to use the screen at an earlier age than recommended or planned. We find the same phenomenon in other studies (21, 22, 30). 

We may wonder why regulating screen use turns out to be much more difficult than the parents envisaged. Could the fact that they knowingly end up compromising with their ambitions for digital parenting be attributed to the demands that are placed on them? 

Our findings indicate that the parents do not really want to change their own practice but dream of finding evidence that screen use is not so harmful so that they can continue with less guilt and shame. 

Strengths and limitations of the study

As public health nurses, we are interested in the wellbeing of parents and children. When we talk about screen use in one-to-one consultations at the child health centre, we find that parents are fairly unwilling to share their thoughts about this. Therefore we wanted to explore how parents would talk to each other in a group and share their experiences.

A weakness of focus groups can be that participants have limited time to speak and group dynamics may affect their opportunity to speak freely (23). However, the choice of focus groups proved to be a strength as parents discussed freely, identified with what was being said and were glad to share their experiences with others. 

It is recommended to have a minimum of four participants in a focus group. Nevertheless we chose to have three participants in two of the groups due to last-minute absence. Despite our efforts to recruit broadly, the sample consisted only of ethnic Norwegians because two participants with a different ethnic background chose to withdraw at short notice. 

In addition, most of the participants had higher education and they had a partner with whom they shared parental responsibility. Studies suggest that the children of parents without higher education use the screen more (27). 

The study would undoubtedly have benefitted from the recruitment of informants with a more varied social background. Consequently, our sample is not representative of the parent population in Norway today, which affects the transferability of the findings. However, the study provides valuable knowledge of how the informants in this study deal with children’s screen use in everyday life. The problems we elucidate presumably apply to other parent groups as well. 

Our bias and involvement as public health nurses have influenced the choice of topic and our approach. As mothers, we have something in common with the informants and can recognise ourselves in the parents’ description, while also noting that the screen is used more than before in the interaction between parents and children at the child health centre. 

We have attempted to be aware of our bias. The interview guide was based on open questions that were neither positive nor negative, and we did not guide the informants’ conversation to any degree. 

Conclusion

The study shows that the screen is well integrated in family life, and is used in many situations, both by the child and the parents. The parents find that both they and the child gain benefit from the opportunities it offers. Meanwhile the constant evaluation of how to use the screen is taxing. The parents think a lot about how the screen affects the child, in both the short-term and long-term. 

The screen recommendations issued by the health authorities aim to reduce the child’s screen time. The parents find the recommendations impossible to follow and know little about the grounds on which they are based. They cannot imagine daily life without screens and would all like screen use as they currently practice it to be legitimised. Moreover, they would like guidance on how best to use the screen. 

Recommendations that seek to limit children’s screen time should differentiate between interactive activities together with others and passive activities where the child is left on its own. 

The authors declare no conflicts of interest.

Open access CC BY 4.0

Introduction

Although good hand hygiene among healthcare personnel is recognised as the most important infection prevention measure in healthcare settings all over the world (1), patient hand hygiene has received little attention. The Norwegian Institute of Public Health recommends patient hand hygiene compliance as an infection prevention measure in all healthcare settings (2). This is in line with recommendations issued by Centers for Disease Control and Prevention (CDC) in the USA (3). 

However, neither the World Health Organization (WHO) (1) nor the European Centre for Disease Prevention and Control (ECDC) have issued their own recommendations on patient hand hygiene (4). Inpatients’ hands are carriers of pathogens (5) and they come into contact with healthcare personnel as well as the surfaces of objects and areas that are frequently touched. This can lead to indirect transmission of pathogens. 

Direct transmission between patients can also occur (6). Three percent of in-patients in Norwegian hospitals pick up a healthcare-associated infection (HAI) (7). In Europe, the expected annual incidence of HAI is 3.5 million (8). It is therefore important that we investigate whether patient hand hygiene should be given greater attention as an infection prevention measure. 

HAI is an infection that patients acquire while in hospital or in other healthcare settings (8). HAI is a dreaded complication that increases patients’ suffering, and that impacts significantly on the level of resources required to run a hospital. Even a small reduction in the number of infections will produce savings in the health service, less suffering for those affected by the infections, and fewer deaths (7).

Resistance to antibiotics is a growing problem, nationally and globally. Antibiotic-resistant bacteria will often settle in a person’s normal microbiota, for example in the intestines. This makes the affected individual a carrier of antibiotic-resistant bacteria in the gut. These carriers of antibiotic-resistant gut bacteria will not necessarily be taken ill themselves, but they may well contribute to the spread of antibiotic resistance (9), for instance via their hands after a visit to the toilet. 

Antibiotic-resistant gut bacteria are bacteria that exist naturally in the gut, but that have developed resistance to one or multiple types of antibiotics. Gram-negative rod bacteria can develop a range of different resistance mechanisms. Extended-spectrum beta-lactamases (ESBL) make up a group of major clinical significance, and they can occur in many types of bacteria (9). 

The prevalence of resistant enterobacteria and enterococci has been growing in recent years. Particularly Escherichia coli, Klebsiella pneumoniae and vancomycin-resistant enterococci (VRE) represent major challenges for patient treatment and infection control in the health service (10, 11). VRE can survive for more than an hour on hands and for up to four months in the environment (12). In Europe, the increase in antibiotic-resistant gut bacteria represents a significant threat to health services (13).

When antibiotic-resistant bacteria cause disease, these infections are more difficult to treat than other infections. The risk of complications will be greater, the disease pathway will be longer and there will be increased patient mortality among those infected (9). 

Despite the existence of well-established guidelines for the hand hygiene of healthcare personnel, patient hand hygiene appears to be under-researched, thus representing a gap in the knowledge on which measures to prevent infections with antibiotic-resistant bacteria in hospitals are based. 

Objective of the study

The objective of this study was to chart and summarise research literature on hospital patients’ hand hygiene behaviours, particularly their role in spreading antibiotic-resistant gut bacteria. 

In order to shed light on this matter, we formulated the following research question: ‘What knowledge does existing research convey about hospital patients’ hand hygiene behaviours and their potential impact on the spread of antibiotic-resistant gut bacteria?’

Method

We chose to undertake a scoping review based on the framework developed by Arksey and O’Malley to research literature on the link between hospital patients’ hand hygiene and antibiotic-resistant gut bacteria. 

The framework involves five stages: identifying the research questions, identifying relevant studies, selecting studies, charting the data and summarising the results (14). Furthermore, we based our literature list on the PRISMA checklist for scoping reviews (15).

Identifying the research question and searching for relevant studies

At the first stage, we formulated our research question and established our search terms and search strategy. To answer the research question, our main selection criteria were research literature that studied patient hand hygiene and included antibiotic-resistant gut bacteria. PCC is recommended as a guide to formulating clear and meaningful titles for scoping reviews. PCC is short for population, concept and context. 

The title, research question and inclusion criteria must be congruent. There is no need for explicit outcomes, interventions or phenomena in a scoping review, but elements of each of these can be implicit in the concept being investigated (16). 

The scoping review’s population was adult, alert patients. The concept was patient hand hygiene and antibiotic-resistant gut bacteria, studied in the context of inpatient hospital wards. On 15 November 2022, we conducted a literature search in the MEDLINE, Embase, Global Health, AMED and Cinahl databases (Appendix 1 – partly in Norwegian). 

The literature search was conducted using the following search words without truncation: patient, inpatient, hospitalized, institutionalized, hand hygiene, hand hygienic, handwash, hand-wash, hand disinfect, hand wash, hand sanitize, hand sanitise, hand antiseptic, hand contaminate, hand decontaminate, hands disinfect, hands wash, hands sanitize, hands sanitise, hands antiseptic, hands contaminate, hands decontaminate, alcohol hand sanitizer, alcohol hand sanitiser, alcohol hand rub. 

The search words were combined with Boolean operators and proximity operators to secure relevant hits, and the searches were adjusted to the individual databases. We conducted the search without any date restrictions and in collaboration with a librarian.

We conducted another identical search on 13 September 2024, but this was limited to the period 16 November 2022 to 13 September 2024. This search identified a further 144 hits, all of which were excluded (Figure 1). We searched for grey literature in Google Scholar, but this produced an unmanageable number of hits. Consequently, we have not included any grey literature in our scoping review. 

Selecting studies

At the second stage, we selected articles based on our inclusion criteria: a) patient hand hygiene, b) adult patients, c) hospital, d) inpatient ward, e) antibiotic-resistant gut bacteria, and f) full text available. In the main search of all the databases we identified 1569 articles, in the secondary search 588. After removing 763 duplicates, 1421 studies remained for review of title and abstract. 

To test our inclusion criteria, both authors conducted a blind test of ten percent of the studies (n = 128) in the main search. This showed congruence between the included and excluded articles. We proceeded to review the remaining articles. Of the 57 studies for which the full text was reviewed, 49 (86 percent) were excluded, and eight included articles remained. 

The flow chart of included studies was updated after the secondary search. We used Covidence (17) to ensure that a blind and objective selection of articles was made, and the entire screening process was conducted by both authors.

Charting the data and summarising the results

The first author extracted data from the included articles. The results were summarised in a literature matrix (Table 1). We have not assessed the quality of the included articles, as this is not standard practice in scoping reviews (14).

Ethical considerations

We have used neither informants nor health information. The study has therefore not been submitted for assessment by the Regional committees for medical and health research ethics (REK) or Sikt – the Norwegian Agency for Shared Services in Education and Research. 

Results

Description of the included articles

Four studies (50 percent) were conducted in the USA (18–21), two (25 percent) in Hongkong (12, 22), one (12.5 percent) in Switzerland (23) and one (12.5 percent) in Sweden (24). The study population of the included studies varied considerably, ranging from one single individual to 42 included hospitals. 

There was also a range of study designs: one observational study, one quality improvement project, one cohort study, one cross-sectional study, one pre–post intervention study, one case study, one randomised controlled study (RCT) and one case–control study. 

Two studies involved an intervention (20, 22), and two studies charted the prevalence of antibiotic-resistant gut bacteria on patient hands or on surfaces (18, 21). Four studies conducted an intervention as well as charting the prevalence (12, 19, 23, 24).

Main categories identified

We identified areas associated with patient hand hygiene and antibiotic-resistant gut bacteria and grouped the articles’ content in two categories: 1) ‘Prevalence of antibiotic-resistant gut bacteria on patient hands or on surfaces’, and 2) ‘Interventions that targeted patient hand hygiene’.

Prevalence of antibiotic-resistant gut bacteria on patient hands or on surfaces

Four studies investigated the prevalence of antibiotic-resistant gut bacteria on the hands of hospital patients (18, 19, 21, 23). All four studies found antibiotic-resistant gut bacteria as well as other bacteria. Two of these studies examined patients’ hands 48 hours after hospitalisation (21, 25). 

Istenes et al. (21) examined the dominant hand of 100 patients. Of antibiotic-resistant gut bacteria, they found VRE in nine patients (9 percent). 

Mody et al. (18) examined patients’ hands for antibiotic-resistant bacteria on admission and at regular intervals during their stay in hospital. They found that 28 patients of a total of 399 (7 percent) were colonised with antibiotic-resistant gut bacteria on their hands on admission. Of these, 20 patients (5 percent) had resistant gram-negative bacteria (RGNB), and eight (2 percent) had VRE. 

Ullrich et al. (23) used nano particles comparable to VRE in their study. They planted nano particles on a patient’s glutes before a visit to the toilet to illustrate how VRE can spread in a hospital environment when only one patient is the unknown carrier. 

Over the next eight hours, the prevalence of these particles was studied in 73 pre-defined locations, including on patients’ hands, on surfaces and shared contact points in the hospital ward. They carried out three tests and found nano particles on the contaminated patient’s hands in all three tests, while the neighbouring patient had no nano particles on their hands in any of the tests. The neighbouring patient complied with hand hygiene recommendations, often in the form of handwashing and hand disinfection. 

These findings match those of Sunkesula et al. (19), whose study saw a lower prevalence of microbes on the hands of patients who complied with a hand hygiene intervention . 

Three studies described surfaces or areas that were frequently touched by both healthcare personnel and patients (18, 19, 23). The patients’ surroundings – the patient zone – is such an area. Both Mody et al. (18) and Sunkesula et al. (19) wanted to investigate the link between microbes found on patient hands and microbes found on surfaces. 

Mody et al. (18) established that when VRE and RGNB were found on hands, the same microbes were found on surfaces in the patient rooms. Sunkesula et al. (19), however, found no fluoroquinolone-resistant gram-negative bacteria on surfaces in the rooms of patients who carried these bacteria on their hands. 

Ullrich et al. (23) studied the spread in the patient’s room and elsewhere on the ward. They found the particles on 80.8 percent of the surfaces they tested. Nevertheless, while they found particles on the hands of the neighbouring patient in only one of six tests (16.7 percent), they found nanoparticles on the remote control by their bed, their intravenous pump and on various objects, like mobile phones. 

Interventions that targeted patient hand hygiene

In three studies, education was included among the interventions that targeted patients’ hand hygiene (19, 20, 24). Ransjö et al. (24) introduced written and oral reminders, in addition to patient education in hand hygiene. The measures were adopted after an ESBL-producing Klebsiella pneumoniae outbreak had lasted for 20 months. They gained control of the outbreak eight months after measures had been introduced to improve patient hand hygiene. 

In the other two studies (19, 20) alcohol-based hand disinfectants were handed out to patients, and education initiatives were based on the patient-centred model, supported by healthcare personnel, to improve patient hand hygiene: ‘Four moments for patient hand hygiene’. The model recommends handwashing in the following situations: 1) before and after touching wounds or medical equipment hooked up to the body, 2) before eating, 3) after a visit to the toilet, and 4) when entering or leaving the patient room (25). 

In the study conducted by Haverstick et al. (20), VRE was reduced by 70 percent over the 19 months that the intervention lasted. All the three studies of interventions that targeted patient hand hygiene showed that the measures had an impact. 

Sunkesula et al. (19) investigated whether a hand hygiene intervention could influence the prevalence of bacteria on hands. They had an intervention group (n = 44) and a control group (n = 47). 

This study also identified antibiotic-resistant gut bacteria, but only of the fluoroquinolone-resistant gram-negative bacteria type and no VRE. They found fluoroquinolone-resistant gram-negative bacteria on the hands of two patients (4.3 percent) in the control group and none (zero) in the intervention group. 

Other measures included direct observation of hand hygiene behaviours, with healthcare personnel observing patients to ensure hand hygiene compliance. This measure was used in two studies from Hongkong (12, 22) and was found to be effective in both cases. 

In one of these studies, Cheng et al. (12) conducted direct observations of hand hygiene behaviours as a preventive measure, specifically before meals, before intake of medicines and after the use of bedpans. Additionally, patients were encouraged to attend to their hand hygiene after toilet visits. 

Hongkong’s 42 public hospitals are grouped into seven health trusts. During the period of the interventions, the rate of outbreaks was rising in all of Hongkong’s other health trusts, totalling 78 VRE outbreaks. However, there was only one outbreak in the health trust included in the study. 

In the second study from Hongkong by Cheng et al. (22) they conducted direct observations of hand hygiene behaviours before the intake of medicines and meals. This was a measure introduced in connection with a VRE outbreak that lasted for four years and ten months. Patients were also regularly reminded of the intervention through posters. 

After introducing the intervention, they found that the outbreak rate for VRE was reversed from an increase of 10.5 percent per month to a reduction of 13.3 percent per month. Patient hand hygiene compliance before the intake of meals and medication was at 97.3 percent.

Discussion

Summary of main findings

In summary, the studies show that hospitalised patients who comply with hand hygiene recommendations, have a lower prevalence of antibiotic-resistant bacteria on their hands. Additionally, inpatients who comply with hand hygiene recommendations in specific situations, such as after visiting the toilet or before meals, can potentially help to stop the outbreak or the spread of antibiotic-resistant gut bacteria to surfaces.

Prevalence of antibiotic-resistant gut bacteria on patients’ hands and on surfaces

Several studies found antibiotic-resistant gut bacteria on the hands of patients, both on admission and during their stay in hospital (18, 19, 21). Some microbes, such as Klebsiella pneumoniae, survive well on skin, which means that good hand hygiene is essential for gaining control of such microbes (24). 

However, Ullrich et al. (23), who used a VRE surrogate, found that the patient zone was contaminated even if the patient’s hand hygiene was good and only one of six tests found traces on the patients’ hands. The explanation may be that VRE survives for only one hour on hands but can survive for up to four months on inanimate objects in the surroundings (12). 

The study carried out by Ullrich et al. (23) included only a single patient, which makes it difficult to draw conclusions. Nevertheless, their findings raise interesting questions about the significance of patient hand hygiene, because the study shows how fast VRE can spread on a hospital ward even if only a single patient is a carrier of VRE. Particles from this one patient caused contamination of 80.8 percent of pre-defined locations on a hospital ward, including the toilet seat, the wash-hand basin in the toilet, the toilet door handle and patients’ hands (23). 

If the patient had washed their hands after visiting the toilet, only some of the contaminated locations would have received the particles. The study highlights the importance of cleanliness, and of isolating VRE-positive patients. It also highlights the importance of hand hygiene compliance among all healthcare personnel who touch patients, and all users of communal spaces, whether visitors, fellow patients or healthcare personnel. The study is also important in that it supports the assertion that focusing on healthcare personnel’s hand hygiene is the most important infection prevention measure in any healthcare setting.

In recent years, hospitals have changed their practices in that patients are encouraged to be active and contribute to their own convalescence (26). This leads to frequent touching of shared contact points, as well as much movement in and out of patient rooms. According to ‘Four moments for patient hand hygiene’ (25), entering and leaving the patient room present an opportunity for handwashing. 

Patients are encouraged to play an active part by collecting their own food. A master’s thesis that investigated hand hygiene in connection with buffet meals in a Norwegian hospital, concluded that buffets can involve a risk of transmission of pathogenic microbes (27).

As mentioned above, microbes have different survival times on surfaces. The studies that sought to match the prevalence of microbes on hands to the prevalence of microbes on surfaces (18, 19, 23), reported conflicting findings. While these were small-scale studies of dissimilar designs, they do raise interesting questions about the role played by healthcare personnel in contaminating surfaces in patient areas, and whether the type of microbe may be significant. 

Patients who are infected with VRE and multi-resistant gram-negative rod bacteria are all potentially at risk of contaminating the hospital environment. These bacteria, which are highly common in healthcare settings, can persist on different surfaces for different lengths of time and are difficult to eliminate by cleaning or disinfection (28). 

Two of the studies (18, 19) established multi-resistant gram-negative rod bacteria on the hands of patients. Although these pathogens were found on the hands of patients in both studies, they were not identified on the surfaces of either of the patient rooms. This may be due to differences in surface materials, temperatures and cleaning routines.

Interventions that target patient hand hygiene

Two of the studies showed that systematic hand hygiene education, combined with easy access to hand disinfectant, had significant impact on VRE-infections and the presence of fluoroquinolone-resistant gram-negative bacteria on patients’ hands (19, 20). 

Increased knowledge about hand hygiene among patients, combined with easy access to hand disinfectant, appear to be effective measures for reducing infection rates. Access to hand disinfectant leads to better compliance among healthcare personnel (29), and it seems likely that the same will apply for patients. 

Both studies made use of the model ‘Four moments for patient hand hygiene’ (25), which recommends hand hygiene compliance in particular situations. The model is clear and specific for those involved, such as patients and healthcare personnel, and there is no scope for individual discretion in deciding on the appropriate situation for hand hygiene compliance. 

An evidence-based system of routines assures the quality of the work carried out in hospitals. Health and care services have a statutory duty to work systematically on quality improvement and patient safety (30), and in this context, ‘Four moments for patient hand hygiene’ is useful. 

An outbreak of ESBL-producing Klebsiella pneumoniae in a Swedish hospital was curbed by hand hygiene knowledge combined with various types of reminders. The outbreak had been going on for 20 months, and 247 patients had been identified as carriers of the microbe (24). 

There is reason to believe that after such a long time and so many infected patients, staff were highly motivated to reverse the outbreak. Large numbers of patients held in isolation lead to much extra work for hospital staff, and infections with antibiotic-resistant bacteria involve higher patient risks. 

Today we see a growing volume of outbreaks, which in turn means that more patients will have to be isolated due to infections. This situation represents a major challenge for the healthcare personnel involved (31). 

In Norway, hospitals have a duty to organise and establish routines that will ensure the delivery of appropriate health services. This duty also means that hospital owners and managers are responsible for facilitating each individual healthcare worker’s safe performance of their duties (32). Effective infection prevention depends on management establishing strong routines that provide staff with the necessary knowledge and resources to proactively prevent the spread of infections on hospital wards. 

Two studies showed that direct observations of hand hygiene practices are useful measures for preventing infection and stopping infection outbreaks (12, 22). It is worth noting that Cheng et al. (12) conducted a study in which all patients were screened for VRE on admission. If VRE was identified, the patient was put in isolation. It is likely that this also had an impact on the spread of VRE at the hospital. 

Nevertheless, they achieved a high level of hand hygiene compliance among the patients in their study by directly observing their behaviours in specific situations. We do not know how often patients in Norway wash their hands, but an English 24-hour observational study shows an inpatient hand hygiene compliance rate of 56 percent (n = 164) (33). 

Among patients, knowledge levels about the importance of hand hygiene vary, but this has not been researched. Direct observations of hand hygiene behaviours before meals can be difficult to follow up in Norwegian hospitals, one of the reasons being the way that meals are organised.

Hand hygiene interventions aimed at patients can also influence healthcare personnel’s hand hygiene compliance. Other studies show that hand hygiene interventions aimed at patients brought a 30 percent rise in compliance among healthcare personnel (34). In the included studies, the hand hygiene interventions aimed at patients may therefore have influenced compliance levels among healthcare personnel, and in turn, the results. 

Method, strengths and limitations

A scoping review is an appropriate method whenever the literature available describes different research designs and there is no intention to assess the quality of the included literature. Conducting a scoping review has allowed us to undertake a literature study to identify areas that need further research. 

It is a strength of this study that a librarian was involved throughout the entire search process, and that the literature review and inclusion of articles was carried out by two independent individuals. The included studies have different research designs, which may be a strength because the topic is approached from different angles.

The manual screening process that was used to identify articles about patient hand hygiene and gut bacteria may have caused articles to be overlooked. Patient hand hygiene is not a single search word, and if patient and hand hygiene are combined in a literature search, a great many unwanted hits will be included that deal with hand hygiene in general or the hand hygiene of healthcare personnel. 

The terminology and many abbreviations that are used to describe antibiotic-resistant gut bacteria, such as VRE, RGNB and ESBL, represent another challenge. Familiarity with these words and acronyms is essential to enable identification of relevant studies. 

The data extraction was conducted by one person, which may have caused relevant data to be overlooked. Additionally, the included studies involved bacteria other than those present in the intestines, which meant that we included only parts of the articles’ content. This may have led to incomplete data extraction, and certain connections may have gone unnoticed. 

Conclusion

The research literature lists better hand hygiene among patients, combined with other infection control measures, as a potentially important factor in reducing hospital infection rates and managing outbreaks of antibiotic-resistant gut bacteria.

It is assumed that patient hand hygiene can influence the prevalence of antibiotic-resistant gut bacteria, and that good hand hygiene may potentially reduce the spread to other patients’ immediate surroundings and to the hospital environment in general. However, hand hygiene interventions among patients should be seen as a supplement to well-established and evidence-based infection prevention measures.

Further research should investigate what measures are associated with high patient hand hygiene compliance rates in specific situations, so that efforts can be targeted and produce the desired results without unnecessary use of resources. We also need more knowledge about the durability and scalability of hand hygiene measures among patients, across different hospital wards and patient groups.

The authors declare no conflicts of interest.

Open access CC BY 4.0

Introduction 

The Norwegian Directorate of Health recommends that women be provided with information on pelvic floor muscle training (PFMT) as part of their antenatal care (1). National clinical guidelines for postnatal care strongly advise one to two structured, individualised consultations during their postnatal hospital stay, including information and guidance on pelvic floor muscles and the offer of tailored exercise programmes (2).

In these guidelines (2), less emphasis is placed on the recommendation for women to undergo a postnatal check-up with a doctor or midwife 4–6 weeks after childbirth. The purpose of the check-up is to identify any need for further follow-up, and it should address issues such as pelvic pain, incontinence, assessment of perineal lacerations and sexual health (2).

Understanding the importance of providing information and guidance on pelvic floor muscles before and after childbirth requires knowledge of their anatomy and function. The pelvis is closed inferiorly by muscles that form the pelvic floor. The deep muscles of the pelvic floor are essential for supporting the vagina, uterus, ovaries, bladder and rectum, ensuring optimal organ function. The pelvic floor also contributes to the regulation of intra-abdominal pressure during actions such as jumping, sneezing or laughing (3). 

During pregnancy, the uterus increases in size, placing greater pressure on the pelvic floor (4). During vaginal delivery, the pelvic floor muscles are stretched to more than three times their resting length (5). The strain during pregnancy and childbirth can cause overstretching and tearing of muscle fibres and nerves, which can compromise the supportive function of the pelvic floor (6).

When the pelvic floor muscles are weakened or injured, the physical consequences include urinary incontinence, anal incontinence and pelvic organ prolapse, with the former being the most common. Several studies report that approximately 30% of women experience urinary incontinence for up to four years after childbirth (7–9).

As with other skeletal muscles, the pelvic floor requires training to maintain or increase its strength and supportive function. The recommendation for strengthening the pelvic floor after childbirth is pelvic floor contractions for six to eight seconds, eight to twelve times per session, three times daily (3). 

Women are advised to perform PFMT for three to six months postpartum and to continue the exercises a few times each week for the rest of their life (6).

Evidence regarding PFMT as a preventive or therapeutic intervention for pelvic floor–related disorders associated with pregnancy and childbirth is mixed. However, there is consensus that PFMT is effective in both preventing and treating urinary incontinence (10, 11).

The effect of PFMT on faecal incontinence remains uncertain (7). PFMT can also be recommended as a conservative strategy to reduce symptoms of pelvic organ prolapse (12). Effective training requires women to learn how to correctly identify and activate the pelvic floor muscles, which can be challenging without individualised guidance (11, 13–15). 

Several high-income countries have studied women’s experiences of receiving information and follow-up regarding PFMT, but we have not found any studies with a focus on the Norwegian context.

New national guidelines for maternity care in Norway were published after this study was completed, but they do not address PFMT. Consequently, recommendations on PFMT continue to be based on the current national guidelines for antenatal (1) and postnatal care (2).

Objective of the study

The aim of this study was to investigate the following research question:

What is the association between receiving information and follow-up during antenatal and postnatal care and first-time mothers’ knowledge of PFMT and postnatal follow-up of pelvic floor function by healthcare personnel?

The specific research questions were as follows: 

1. What proportion of women receive information on PFMT during pregnancy, the postnatal hospital stay and at the postnatal check-up?
2. What information do women receive regarding PFMT and the follow-up of pelvic floor function during pregnancy, the postnatal hospital stay and at the postnatal check-up?
3. To what extent do women feel they have sufficient knowledge to maintain pelvic floor function based on the information and follow-up they have received? 

Method 

The data in this cross-sectional study were collected anonymously via questionnaire. The study population comprised first-time mothers who gave birth between 1 January 2022 and 1 July 2023, at ≥ 37 weeks of gestation.

First-time mothers were selected to ensure a comparable baseline regarding the information received on PFMT. The study period was chosen to minimise the risk of recall bias. All modes of delivery were included to enable comparison of the information provided to different groups. 

A self-selected, non-probability sampling method was used. Given our limited resources, this method was considered easier, quicker and more cost-effective for recruiting participants. Recruitment was via the social media platforms Facebook and Instagram.

A post that could be shared publicly was created and published in national and local Facebook groups, including due-date and postnatal groups, and through Instagram profiles that could reach the target population. The post included a link to the study website. Information about the study was shared multiple times during the recruitment period to increase participation. A total of 1093 participants were included in the study.

Questionnaire and variables

The digital questionnaire consisted of 26 questions covering sociodemographic characteristics, childbirth and information on PFMT during antenatal and postnatal care. No validated questionnaires directly addressing the research question were identified; therefore, the questions were partly self-developed and partly adapted from validated questionnaires in the Norwegian Institute of Public Health’s questionnaire bank (16).

This approach can potentially introduce information bias. To address potential issues with the self-developed questionnaire, a pilot study was conducted with 20 respondents. Their feedback led to us adding a ‘Don’t remember’ response option for several questions and the use of illustrations to describe perineal lacerations.

Analysis

Following data collection in the online survey tool Nettskjema, the dataset was exported to IBM SPSS Statistics version 29 and then screened for extreme values and obvious errors. Results for the first and second research questions were summarised as frequencies and percentages.

For the third research question, Pearson’s chi-square test was used to examine whether there was a statistically significant association between information on PFMT provided during the postnatal hospital stay and women’s evaluation of the adequacy of the overall information and follow-up of pelvic floor function.

The chi-square test yields a p-value, indicating the likelihood that an observed difference is due to chance. If the p-value is < 0.05, the null hypothesis is rejected. However, p-values alone do not fully reflect the scientific relevance of the findings.

Ethical considerations

The data collected did not include personally identifiable information, and background characteristics were reported in categories. Consequently, no assessment was required by Sikt – the Norwegian Agency for Shared Services in Education and Research (18). As the study was not intended to generate new knowledge on health or morbidity, approval by the Regional Committees for Medical and Health Research Ethics (REK) was deemed unnecessary (19).

The study was conducted in accordance with professional ethical guidelines for midwives, which outline the need for them to share evidence-based information and protect women’s privacy (20). The study also adhered to the Declaration of Helsinki, which underscores the importance of informed consent and places ethical responsibility on the researcher (21), in line with the Norwegian Research Ethics Act (22).

Results

A total of 1213 questionnaire responses were received, of which 1212 women had given birth in Norway within the specified study period. Thirty-eight respondents reported preterm delivery, and 81 were multiparous. These women did not meet the study’s inclusion criteria and were therefore excluded and not sent the remaining questions.

Ultimately, 1093 participants were included in the study, all of whom met the inclusion criteria and answered the subsequent questions. Table 1 summarises the characteristics of the study sample, stratified by whether participants received information on PFMT during the postnatal hospital stay.

Proportion of women who received information about PFMT during pregnancy and the postnatal hospital stay

Figure 1 illustrates whether women received oral or written information about PFMT during pregnancy. At their antenatal consultations, just under half of the participants (44%) received neither oral nor written information. Among those who did receive information, most stated that it was provided orally (32%), while 2% received written information only.

A small proportion of women (8%) reported receiving both verbal and written information, while 14% did not remember whether they had received any information. 

Figure 2 shows that nearly half of the respondents received neither oral nor written information (49%) during the postnatal hospital stay. Among those who received information, most received it orally (21%), while only a small proportion received written information (4%).

A few respondents indicated that they had received both oral and written information (14%). The remaining respondents (12%) could not recall whether they had received any information about PFMT during the postnatal hospital stay. 

Type of information women received about PFMT and follow-up of pelvic floor function at the postnatal check-up

Study participants were asked what type of information they received at their postnatal check-up four to six weeks after giving birth. The most common topics addressed were sexual health and contraception (85%). Fewer than half reported that perineal lacerations and wounds were examined (44%), and about one-third indicated that PFMT was discussed (32%).

With regard to pelvic floor–related issues, the women reported that urinary leakage (13%), pelvic organ prolapse (10%), pelvic pain (9%) and leakage of gas or stool (5%) were discussed during the postnatal check-up. 

Perceived adequacy of knowledge to maintain pelvic floor function based on information received and follow-up

Forty-two per cent of women reported that the information they received about PFMT during pregnancy, the postnatal hospital stay and at the postnatal check-up was adequate to some extent. Twenty per cent considered the information to be adequate to a large or very large extent. Over one-third of women felt that the information received during pregnancy was either completely inadequate or adequate to a small extent.

Four out of ten women considered the information received during the postnatal hospital stay to be adequate, while 25% reported receiving enough information to a large or very large extent. Most women rated the follow-up of pelvic floor function at the postnatal check-up as inadequate (68%), and only 12% considered it adequate to a large or very large extent. 

Association between receiving information and maintaining pelvic floor function

Our findings show that the majority of participants attended the postnatal check-up (90%) and acquired knowledge about PFMT (86%) in order to maintain pelvic floor function. Most women reported that they did not contact healthcare personnel for further follow-up of pelvic floor function after the postnatal check-up (73%).

Table 2 presents the results of the correlation analysis comparing women who received information during the postnatal hospital stay with those who did not, as well as other information and follow-up variables. Associations between variables were assessed using Pearson’s chi-square test. 

A significantly higher proportion of women who attended the postnatal check-up reported receiving information about PFMT during the postpartum hospital stay than those who did not attend the postnatal check-up.

There was no statistically significant association between whether women reported receiving information or not and whether they had acquired knowledge about PFMT from sources other than healthcare personnel (p = 0.16).

Likewise, no statistically significant association was observed between receipt of information and whether women contacted healthcare personnel for further follow-up of pelvic floor function (p = 0.52).

Participants were also asked whether they considered the information and follow-up regarding their pelvic floor to be adequate overall. A statistically significant association was found between receipt of information during the postnatal hospital stay and women’s assessment of whether the overall information and follow-up regarding pelvic floor function were adequate.

Discussion 

The main findings of this study show that only 40% of respondents reported receiving information on PFMT during pregnancy and the postnatal hospital stay. Even fewer reported that PFMT was discussed at the postnatal check-up.

The information provided was inconsistent, and many women considered it inadequate to perform PFMT without further guidance. Most women acquired their own information and attended the postnatal check-up, but few contacted healthcare personnel for further follow-up.

Information on PFMT in antenatal and postnatal care

A large proportion of women reported not receiving any information on PFMT, either orally or in writing. Among those who did receive information, oral communication was most common. Parallel with our findings, a systematic review of findings from Sweden, Norway, the United Kingdom and Australia reported similar challenges, with women reporting a lack of adequate information on maternal health before, during and after childbirth (23).

National guidelines recommend that women receive information on PFMT during pregnancy, both to prevent pelvic floor issues and to facilitate postnatal training (1). Structured consultations during the postnatal hospital stay are also advised (2), but studies show that individualised guidance provides better outcomes than group sessions. Our findings indicate that these guidelines are not adhered to in practice.

Approximately one in ten women could not recall whether they had received information. Pregnancy and the postpartum period involve major hormonal changes, which, together with a new life situation and altered sleep patterns, can affect how receptive women are to information, according to Wiklund et al. (23). These findings highlight the need for tailored and repeated communication to ensure that information is understood.

Information and follow-up in antenatal and postnatal care

The information on PFMT varied considerably. While more than half of women received information on the importance of PFMT, fewer were given specific guidance on the timing and correct execution of exercises. Several studies show that PFMT during pregnancy can help prevent postnatal pelvic floor disorders (10, 11).

A study investigating the prevalence of pelvic floor disorders after childbirth reported that approximately one-third of women experienced urinary incontinence up to four years postpartum (7). The long-term impact of urinary incontinence is further highlighted in a study by Mendes et al. (24), in which women reported significant limitations in daily activities, social interactions and sexual intimacy, with some choosing to socially isolate themselves (24). These adverse outcomes could potentially be reduced through better information and follow-up.

Our findings showed that only about one-third of women reported receiving information during antenatal consultations on the recommended frequency and duration of pelvic floor exercises, with slightly fewer receiving this information during the postnatal hospital stay. Svenningsen and Maltau (25) emphasise that effective PFMT requires women to be aware of their pelvic floor muscles and to learn how to correctly activate them. Our results suggest, however, that women are often given inadequate information on this matter.

Few women also reported receiving an individualised pelvic floor exercise programme during the postnatal hospital stay. Evidence from multiple studies indicates that individualised follow-up with a physiotherapist yields better outcomes than unsupervised training (11, 13–15), and both Norwegian and British guidelines recommend exercise programmes tailored to each woman’s specific needs (2, 26).

Few women reported receiving information on pelvic floor symptoms that require follow-up by healthcare personnel. Without such information, women may be uncertain about what constitutes normal postpartum changes and when to seek medical advice. Although British guidelines recommend that women be informed about relevant symptoms, risk factors and treatment options (26), our findings suggest that these recommendations are not properly adhered to.

Women’s assessment of information received and follow-up by healthcare personnel

A large proportion of women in our study reported that the information they received during antenatal and postnatal care was insufficient to enable them to perform PFMT. Our findings contrast somewhat with national data on user experiences with antenatal, intrapartum and postnatal care (PasOpp reports).

These surveys do not specifically examine information on PFMT or follow-up of pelvic floor function, but they are among the few national studies capturing women’s experiences related to pregnancy and childbirth. Unlike our study, which found only minor differences between antenatal and postnatal care, the PasOpp reports indicate that women were more satisfied with the information received during pregnancy than during the postnatal period (27, 28).

A similarity with our findings is that women reported being least satisfied with the information received during the postnatal check-up at the child health centre (28). One possible explanation for why participants in our study reported lower satisfaction with information at the postnatal check-up is that they were asked specifically about PFMT, whereas the PasOpp reports address physical health more broadly.

Our findings are consistent with international studies showing that women consider information on pelvic floor health to be inadequate (29–32). This can have long-term negative consequences for women’s health and quality of life. It is therefore essential to strengthen the provision of information and ensure that recommended guidelines are adhered to in practice.

It is also worth noting that the national guidelines for postnatal care (2) have not been revised since 2014. Our findings indicate there is room for improvement in the information and follow-up women receive. Any future revision should consider the poor adherence to current recommendations and assess the feasibility of implementing individualised follow-up.

Reflections on methodology

Recruitment via social media provided rapid access to relevant participants and yielded a high response rate. The cross-sectional study included a broad sample and examined potential associations between numerous variables. The statistical analyses provided a basis for assessing how the information received and follow-up may have shaped women’s perceptions of the information they received about PFMT.

The study has several limitations. The cross-sectional design prevents any conclusions being drawn about causal relationships (33). Our sampling method may have introduced selection bias, as participation was self-selected. Women without access to social media or with language barriers are likely to be underrepresented. This bias could result in the study sample appearing more satisfied with follow-up than the general population, thereby limiting external validity (33).

Another limitation is that we did not account for potential confounding factors in the correlation analyses, such as education level or social support, which may have impacted on the results. For example, women with a higher education may be better positioned to seek information and contact healthcare services regardless of what information is provided during the postnatal hospital stay.

Furthermore, the study is based on self-reported data, which carries a risk of recall bias. We attempted to reduce this by only including women who had given birth within a limited time frame. Self-reported data can also introduce information bias if participants are reluctant to report personal details or if they select responses they consider to be socially desirable. Additionally, the self-developed survey questions may have introduced further information bias if participants misunderstood them or interpreted them differently.

Sociodemographic data indicate that our sample largely reflects the general population. The largest proportion of participants were aged 30–34 years, which is consistent with the mean age of first-time mothers in Norway of 30.2 years (34).

However, 5.7% of our sample reported experiencing a third or fourth-degree perineal laceration, compared with 2.7% reported by the Norwegian Institute of Public Health (35). Women with more severe perineal injuries may be more interested in the topic of this study, which could explain the difference in proportions. While this provides some degree of generalisability, the findings should be interpreted with caution due to methodological limitations.

Implications for clinical practice

Based on the information received by our study participants, improvements are needed in the information provided on PFMT and the follow-up of pelvic floor function during antenatal and postnatal care. This could be addressed through training programmes for healthcare personnel, enabling them to update their knowledge on the pelvic floor and its role in the prevention and management of pelvic floor–related disorders. Training should also incorporate findings from this study to ensure that the content is relevant and founded on women’s experiences.

The findings should be used to inform various groups of healthcare personnel about the importance of informing and instructing women on the role of PFMT during pregnancy, after childbirth and for the rest of their life, as well as the current gaps in such information.

A focus on how pelvic floor exercises should be performed in practice before and after childbirth can also help ensure that more women receive adequate information to do so. Follow-up with a physiotherapist in the public health service is also an alternative, and this could facilitate the early identification of pelvic floor–related problems and ensure women receive adequate information and follow-up.

Conclusion

Few women reported receiving information on PFMT during pregnancy, the postnatal hospital stay, or at the postnatal check-up. Insufficient follow-up can have serious consequences for women’s health and quality of life. Although many women sought information independently and attended postnatal check-ups, few contacted healthcare personnel for further follow-up.

The findings indicate a need for individualised follow-up by healthcare personnel, such as publicly funded physiotherapy integrated into postnatal care. The study also highlights a mismatch between national guidelines and women’s experiences. 

The authors declare no conflicts of interest.

Open access CC BY 4.0

Introduction

Recruiting sufficient numbers of intensive care nurses is a challenge for Norwegian hospitals (1, 2), despite directives from the Ministry of Health and Care Services to strengthen efforts to recruit, develop and retain staff (3). The increasing number of students in intensive care nursing programmes has further intensified the demand for clinical placements, posing challenges for intensive care units and potentially limiting students’ exposure to relevant learning experiences (1).

The aim of Norway’s Regulation on National Guidelines for Intensive Care Nursing Education is to ensure that institutions produce intensive care nurses who are qualified to care for acutely and critically ill patients (4). The regulation provides for a minimum of 30 weeks of clinical placement in nursing programmes, but stipulates that ‘where circumstances prevent students from achieving the intended learning outcomes during clinical placement, simulation may be used to replace up to two weeks of clinical placement’ (4, section 26). 

Simulation-based learning (SBL) is defined as ‘a focused and structured learning method involving active, participant-engaged experiences in which students deal with situations that resemble real life and build experience through reflection during and after simulation training’ (5). Working through and reflecting on scenarios with fellow students naturally encourages students to ask each other questions and learn from one another’s knowledge of the situation at hand. In an educational context, this is often referred to as peer learning – ‘active helping and supporting among status equals or matched companions’ (6).

The focus on peer learning in nursing education has increased in recent years. Pålsson et al. found that peer learning during clinical placement enhanced nursing students’ perceived ability to perform nursing duties and apply their competence more effectively than traditional one-to-one supervision (7).

SBL is one of the teaching methods used in intensive care nursing education (8). It improves students’ technical, clinical and relational skills and prepares them for the clinical setting (9–11). Students may initially feel anxious or sceptical about participating in simulation activities, but this typically dissipates after repeated simulation sessions and adequate preparation (12, 13).

Studies have shown that realistic simulation is effective both for transferring theoretical knowledge to practice and for knowledge acquisition (14, 15). Some studies also show how SBL is linked to improved clinical performance. Capella et al. found that simulation-based training significantly enhanced teamwork in interprofessional trauma teams (16). 

In a study of the effects of simulation-based training for interprofessional acute paediatric teams, Andreatta et al. found that it contributed to increased survival following in-hospital cardiac arrest in children (17). In Norway, newly qualified intensive care nurses are expected to possess the knowledge, skills and competence required to administer mechanical ventilation (4), but this remains one of the areas in which they report feeling least confident (14).

Intensive care nursing students’ experiences with SBL is an under-researched area. To our knowledge, no studies have explored students’ experiences with SBL aimed at dealing with mechanically ventilated patients. Previous studies have placed little emphasis on the use of SBL during clinical placement. Understanding students’ experiences in this context would be valuable for planning and implementing SBL in clinical placements.

Objective of the study

The study aimed to explore intensive care nursing students’ experiences of using simulation to learn mechanical ventilation in clinical placement. 

Method

This study employed a descriptive qualitative design (18). Focus groups were used to explore shared experiences and perspectives within a collaborative learning environment (19). Reporting was in accordance with the COREQ checklist for qualitative research (20).

Sample

Intensive care nursing students participated in SBL as part of their clinical placement at a large university hospital in Norway between 2021 and 2022. During the study’s three clinical placements, each student took part in SBL in lieu of a reflection day. SBL was conducted in a collaboration between the university and the relevant clinical departments (Table 1). The aim was to improve students’ learning outcomes in clinical placement by enhancing their understanding of mechanical ventilation.

Participants for the focus groups were selected using a purposive sampling strategy. Inclusion criteria were intensive care nursing students in their second clinical placement period who had participated in SBL during both periods. A total of 47 students met these criteria.

The first author invited these students to participate via email prior to the simulation in the second placement, and they also received a verbal invitation from the facilitator on the day of the simulation. Students who expressed interest were subsequently contacted by phone by the first author. Twelve students agreed to take part in the focus group interviews, but one did not attend. The professional experience of the eleven participants is summarised in Table 2.

Data collection

We developed a semi-structured interview guide based on the objective of the study (Table 3). Open-ended questions were employed to facilitate the sharing of experiences and promote discussion within the focus groups.

Two focus groups, comprising five and six participants, were conducted one to two weeks after the simulation in June 2022. The first author conducted the interviews alone and had no prior relationship with any of the participants. He made field notes on the atmosphere and interactions in the group immediately following each interview. The interviews were audio-recorded using two recorders and table microphones. They lasted 80 and 84 minutes, respectively, and were transcribed verbatim. 

Analysis

The analysis was conducted using a four-step systematic text condensation method (21): 1) transcripts were read repeatedly to identify preliminary themes; 2) meaning units were identified, coded and organised into code categories; 3) meaning units within each code category were sorted into subgroups, with the content of each subgroup abstracted into condensates; and 4) the condensates were recontextualised and synthesised for each code category. These syntheses provided the basis for the sub-sections under Results.

The analysis was non-linear and iterative, with regular reflection on our own interpretative positions and openness to emerging patterns. We used field notes in the first step to assess how the preliminary themes corresponded with the first author’s impressions immediately after the interviews.

Analytical rigour was ensured through careful reading of the transcripts and ongoing discussions among the authors. Table 4 illustrates the process from preliminary themes to final result categories.

Research ethics considerations

The study was conducted in accordance with the Declaration of Helsinki (22) and registered with Sikt – The Norwegian Agency for Shared Services in Education and Research (reference number 821189). Recruitment was approved by the students’ educational institution. Participants received both oral and written information about the study and provided written informed consent. They were informed that they could withdraw their consent at any time without explanation.

Interview recordings and de-identified transcripts were stored in encrypted form on a secure research server. Upon completion of the study, all recordings and anonymised transcripts were deleted.

Results

The analysis identified four overarching categories: ‘Developing situational awareness’, ‘Peer learning’, ‘Experience and learning outcomes’ and ‘Navigating between clinical practice and simulation’.

Developing situational awareness

Participants described the simulation as an opportunity to observe and understand connections. Through their actions, they developed insight into how clinical symptoms, the ventilator and the monitoring equipment were interlinked. Several participants highlighted the importance of repeated practice on the ventilator to build confidence and to take in the broader clinical picture. One participant made the following comment:

‘Removing the fear of making mistakes really helps. Just daring to try. Then you also notice more things, you don’t just see the ventilator anymore. You broaden your perspective, see the whole picture.’ (Participant 6)

Participants identified connections using information from patient assessments, the ventilator and blood gas analyses. Most participants described the initial scenario, which involved a planned extubation, as calm, allowing them to relax, reflect and plan their actions.

In subsequent scenarios, participants identified escalating respiratory challenges in ‘the patient’. Some reported that manually ventilating ‘the patient’ during a change of ventilator equipment created a tense atmosphere. During the debriefing, they learned that the situation was under control and that they had sufficient time, as ‘the patient’ was adequately ventilated and oxygenated.

Students were required to manage large amounts of information during the scenarios and described using the systematic ABCDE (Airways, Breathing, Circulation, Disability and Exposure) assessment as a valuable tool for priority-setting. One participant made the following comment:

‘Yes, just knowing that the most important thing to check first is A. Okay, A is fine. Then you move on to B. So it sort of helps you get the system in your head as quickly as possible.’ (Participant 11)

Several participants reported that feedback from their fellow students and the debriefing taught them that A and B were the main priorities when managing respiratory challenges.

Peer learning

Participants used SBL to share and discuss ventilator knowledge with their fellow students and the facilitator. Some noted that explanations from their peers tended to be easier to understand. Although the group was relatively homogeneous in terms of skill level, students had diverse experiences and knowledge, which promoted peer learning and heightened their awareness of communicating their own strengths and limitations.

Collaboratively discussing and resolving scenarios provided a safe and educational learning environment, enabling participants to fill each other’s knowledge gaps. One participant explained this as follows:

‘Joint reflection until we solved the problem. In our group at least, there wasn’t much ventilator experience. So we were at a similar level, but our experience was still slightly different.’ (Participant 10)

Some participants found that the group was conscious of ensuring that everyone had the opportunity to manage the ventilator, which was achieved through role rotation. Roles were either assigned before the scenario or adjusted during the exercise. Participants without specific tasks oversaw the ventilator and monitoring equipment, reported their observations, or took over when the doctor had to be consulted. Several participants found that role rotation made them more aware of each team member’s responsibilities.

Participants described how scenario training enhanced their understanding of the importance of effective communication. They also reported that open, clear and affirmative communication within the group improved their efficiency, systematic approach and professionalism. In contrast, poor communication often resulted in errors, stress and a tense atmosphere. One participant explained it as follows:

‘I think it was a really valuable addition. That we also had to communicate with each other, not just solve the task.’ (Participant 5)

The simulation in the first clinical placement, with three students per group, was considered realistic based on the participants’ clinical experience. The smaller group simplified communication and allowed each student to engage in a greater number of relevant tasks. In the second clinical placement, with four students per group, some participants found coordination more challenging and reported feeling less actively involved. One participant explained it as follows:

‘Yes, it gets a bit crowded [when] all four of us [have to] go together on A and then work our way down.’ (Participant 3)

Experience and learning outcomes

Several participants reported that prior ventilator experience from clinical placement influenced their learning outcomes in SBL. They considered it important that all group members had a comparable level of knowledge. Most participants only had theoretical knowledge and skills training in mechanical ventilation when they took part in the simulation during the first clinical placement.

Participants were reluctant to operate the ventilator, struggled to understand their tasks, and found the scenario chaotic. Many expressed a sense of uncertainty and inadequacy, and felt that they gained little from the session. One participant reflected as follows:

‘I had no idea what I was supposed to be doing. I just stood there thinking, “I don’t know what I’m doing”. I mean, I’d read about it, but when you haven’t seen it in real life, it’s a bit … yeah.’ (Participant 10)

Before the simulation session in the second clinical placement, nearly all participants had gained experience with patients receiving mechanical ventilation. This promoted understanding and active engagement, and improved the learning outcomes from SBL. They approached the simulations with greater professional confidence and self-assurance. Participants reported that the learning outcomes of simulation were greatest for those whose clinical placement involved patients receiving mechanical ventilation.

Having a comparable level of clinical experience within the group was considered important for effective learning, professional confidence and active participation. Some participants were placed in groups with more experienced peers and found it difficult to keep up with the clinical discussions, leaving them feeling excluded. One participant noted the following:

‘And me, who hadn’t been in intensive care. I just felt small.’ (Participant 6)

Although the less experienced students wanted to contribute actively, their more experienced peers often assumed control, which at times led to passivity and fewer learning opportunities.

Navigating between clinical practice and simulation 

Participants described the simulation as a relevant, motivating and safe learning experience. Several appreciated the chance to step away from patient care for a day, where they had to manage multiple simultaneous tasks and competing demands. Some reported that the clinical supervisor sometimes displayed a somewhat confrontational supervisory style. As one participant noted:

‘Yes, in clinical placement it can often feel like an inquisition. You have to justify your knowledge, so to speak.’ (Participant 5)

Experiences from clinical placement were revisited during SBL, and new insights could subsequently be applied in the clinical setting. Over the course of their placements, many students became more confident in managing mechanical ventilation, though they remained concerned about making serious errors. Simulation provided a setting in which they could ask clarifying questions and practise skills they were hesitant to attempt in the clinical setting. 

Students with patients receiving mechanical ventilation during their first clinical placement considered the simulation in the second placement an opportunity to refresh their knowledge and skills. They reported that the skills acquired could also be applied to patients receiving non-invasive ventilation or with a tracheostomy. Participants emphasised the importance of the facilitator not being present to test or assess them. One participant commented as follows:

‘I immediately felt my shoulders relax before going in. It wasn’t a test. No kind of exam. We were just here to learn, together.’ (Participant 4)

Practising mechanical ventilation in simulation provided a basis for subsequent reflection with the clinical supervisor during the placement. Students also reported feeling more confident in mechanical ventilation, which made it easier to challenge themselves. Within a day of the simulation, one participant was able to apply their newly acquired skills to a patient with acute mucus retention who was receiving mechanical ventilation. The participant described it as follows:

‘I found that my memory of performing bagging during the simulation was so vivid that I could just grab the bag, connect it, and it worked perfectly. It felt really good.’ (Participant 4)

The participant described a sense of mastery and reported that the simulation better equipped them to act effectively in clinical situations. Several participants found that the simulation enhanced learning outcomes in similar situations subsequently encountered in clinical placement.

Discussion

The study shows that participants linked SBL to improved confidence and a deeper understanding of mechanical ventilation management. Collaborative learning with peers, combined with prior ventilator experience from clinical placement, was perceived as a positive experience that enhanced learning outcomes.

Participants reported that SBL during clinical placement facilitated the development of clinically relevant and reflective skills. SBL better equipped them to respond to and learn from similar situations subsequently encountered in the clinical setting.

SBL for developing situational awareness

Through repeated practice and SBL’s systematic approach, participants developed an understanding of connections and gained confidence and competence in managing patients receiving mechanical ventilation. They attributed this improved confidence and competence to their ability to shift their attention from the ventilator, gain an overall perspective of the situation and collaboratively discuss and resolve issues in the simulated scenario. Through this process, participants were able to articulate how they worked as a team and made joint decisions.

Decisions made ‘in the moment’ are grounded in an individual’s situational awareness (23), which comprises three levels: 1) Perception of the elements in the environment, 2) Comprehension of the current situation, and 3) Projection of future status (24).

Situational awareness is a non-technical skill that is critical for patient safety in clinical settings (25). Previous studies have demonstrated that SBL in intensive care nursing enhances both practical and technical skills (9, 14, 26) as well as non-technical skills (9, 27). 

Professional education entails developing situational awareness within students’ future fields of practice. Participants in this study reported that using the ABCDE method (28) as a structured assessment tool helped them better understand the patient’s condition. They described how they integrated information from multiple sources in a comprehensive overview of the patient’s status, which enabled them to interpret the significance of events and assess severity. Experiencing a sense of mastery during simulation further strengthened their ability to anticipate developments and act effectively in clinical situations.

These findings indicate that SBL helped intensive care nursing students develop and refine situational awareness relevant to intensive care. Sharing this awareness within the team is essential to support informed decision-making, and participants noted that SBL demonstrated how communicating their own understanding promoted collaborative problem-solving.

Fellow students as a learning resource in SBL

Participants found that SBL provided a safe and educational learning environment, partly because it enabled them to reflect, discuss and solve tasks collaboratively with their fellow students. They reported that explanations provided by their peers were easier to understand and highlighted the benefit of all group members having a similar level of competence.

These findings suggest that student collaboration in itself constitutes a valuable learning resource. This supports the use of SBL for peer learning, in which students develop knowledge and skills by learning from each other in a collaborative environment (6).

Peer learning has been shown to enhance students’ ability to understand the situation at hand, think critically and engage more fully in the learning process. Articulating their understanding to fellow students stimulates metacognitive skills and supports lifelong learning (29). SBL also promotes active dialogue and inquiry among participants (30).

Participants emphasised how the facilitator played a key role in creating a safe learning environment and leading discussions without them feeling evaluative. It was also clear that participants valued collaboration and communication as a core element of the learning experience. They associated good communication with professionalism as well as patient safety. Non-technical skills, such as clear communication, awareness of personal and team members’ skills and roles, and optimal use of the team’s collective expertise, are essential for effective teamwork (23).

In line with previous research, our findings indicate that SBL supports the development of non-technical skills in intensive care nursing (13, 27).

SBL in clinical placement

Participants linked active engagement in SBL to greater understanding and improved learning outcomes during clinical placement. Many described how SBL better equipped them to challenge themselves and act effectively in clinical situations. They valued the opportunity to ask clarifying questions and practise skills they had previously been hesitant to attempt in the clinical setting.

SBL is now well established in medical and health sciences education. Students can test their theoretical knowledge and practical skills in realistic clinical scenarios without risk to patients, and discover that these can be transferred to the clinical setting (27).

Evidence from previous studies shows that SBL improves nursing students’ confidence and encourages them to engage in similar situations in clinical placement. These studies also link SBL to improved clinical judgement and practical skills in the clinical setting (31–33). Jansson et al. reported significant improvements in intensive care nurses’ clinical skills in mechanical ventilation, which were maintained at the six-month follow-up (26).

Participants in our study reported that limited experience with ventilated patients in clinical placement prior to SBL contributed to passivity and reduced understanding. They derived considerably greater benefit from SBL during their second clinical placement, having by then gained experience with patients receiving mechanical ventilation. Scheduling SBL midway through the placement enabled participants to incorporate recent clinical experiences into the simulation.

Students’ experiences with SBL enhanced their learning outcomes in mechanical ventilation at a later point in the clinical placement. Adequate preparation fosters a positive learning experience and improves learning outcomes for SBL (12, 34). 

Repeating the simulations is also important for the learning experience and learning outcomes (9, 14). These findings suggest that SBL should ideally begin during the first clinical placement, allowing students to build confidence and develop a deeper understanding of mechanical ventilation. Students with limited prior knowledge require more supervision during simulations in order to achieve good learning outcomes (35).

Those with sufficient prior knowledge, however, attain good learning outcomes with or without close supervision (35). This study indicates that grouping together students with similar levels of experience facilitates tailored instruction and helps ensure good learning outcomes for all participants.

Strengths and limitations of the study

Strengths of the study include the participants’ varied experience with mechanical ventilation and their participation in SBL during both the first and second clinical placements. Interviews were conducted one to two weeks after the teaching sessions, ensuring that participants’ experiences remained fresh in their memory. In addition, the interviewer was well acquainted with the training session in which the participants had taken part.

A limitation of the study is that the first author conducted the focus groups alone. An assistant moderator could have taken field notes, summarised content during the interviews and helped with follow-up questions (21). Nevertheless, it is a strength that the first author made field notes immediately after each interview, capturing the atmosphere and interactions in the group.

Only one participant had prior clinical experience with mechanical ventilation. Consequently, the findings may not be fully transferable to intensive care nursing students with such experience. Only two focus group interviews were held; however, both provided rich dialogue and detailed descriptions. We therefore considered the information power (21) of the sample to be adequate.

Conclusion

Participants reported that SBL improved their competence and confidence in mechanical ventilation. Peer collaboration and experience with mechanical ventilation in clinical placement were highly valued by the study participants. The findings support the use of SBL to achieve learning outcomes related to mechanical ventilation and non-technical skills in intensive care nursing students.

This study provides greater insight into the use of SBL as an element of clinical placement for intensive care nursing students. The findings may be useful for further development of intensive care nursing education and illustrate how the field of practice and educational institutions can work together to enhance student learning in clinical placement.

Future research should focus on developing robust methods to explore the transferability of learning outcomes from SBL to the clinical setting. In addition, more research is needed on how integrating SBL into clinical placement for intensive care nursing students affects the capacity of healthcare institutions to host students. 

The authors declare no conflicts of interest.

Open access CC BY 4.0

Introduction

Child health centres and school health service units provide statutory primary health services. They are the most important providers of services directed specifically at children, adolescents, pregnant women and their families (1). Most employees are registered nurses with a further qualification in public health nursing or midwifery. In addition to providing guidance and follow-up services for children, adolescents and pregnant women, staff also carry out laboratory work. 

While considerable research has focused on other services provided by child health centres, such as prevention and guidance (2), their laboratory work has received little attention. There is a dearth of knowledge about the extent and exact nature of these services. For example, it is unclear which laboratory services are offered at child health centres and by Norway’s school health services. Nevertheless, we do know that child health centres and school health service units are charged with providing an interdisciplinary range of services for their specific target groups and that they enjoy a high take-up rate in the population (1, 2). 

Furthermore, child health centres and school health service units are key to the local authorities’ public health initiatives (1, 2). This suggests that the extent of their laboratory activities may be considerable.

All health and care services aim to deliver a high standard of work (1, 3). For this to be achieved, staff must have the appropriate competence (4). Laboratory work is particularly critical to patient safety and the quality of treatments (5–9). The laboratory process is liable to errors at several stages – before, during and after the analysis (5, 6) – and can influence the test results (6, 9). In turn, this may lead to incorrect diagnoses, unnecessary treatments or delayed follow-up (5–7, 10). 

For example, capillary blood samples may produce misleading results in pregnant women with swollen fingers, which may lead to incorrect referrals to the specialist health service. Errors can also arise if knowledge is outdated or procedures have not been updated (6–8, 10). Good training and clear procedures can therefore save time and resources, whilst also ensuring correct follow-up (6, 8–10).

There is little existing research into the competencies of municipal healthcare staff who carry out laboratory work. A Norwegian study from 2018 (11) that surveyed laboratory work carried out by the home care service, established that virtually all home care units carry out laboratory work, but that these activities were rarely included in training schedules or quality assurance programmes (11). The home care staff were generally registered nurses or nursing associates who had received little or no laboratory training whilst qualifying (11).

The Norwegian Organization for Quality Improvement of Laboratory Examinations (Noklus) is working to improve the quality of laboratory services and increase knowledge about how to correctly requisition, conduct and interpret laboratory tests. Virtually all GP surgeries, accident and emergency departments, nursing homes and over 80 per cent of home care services contribute to Noklus. 

Since 2007, Noklus has been co-ordinating two national projects that seek to improve the quality of laboratory work in nursing homes and in the home care service (11–13). The home care service project is on-going (13). Participation has given the services access to a system for continuous quality improvement, and the projects have produced good results, such as a higher standard of analysis (9, 11–13). 

Based on surveys conducted by Noklus and discussions with the leaders of public health nurses, midwife associations and the Department of Child and Adolescent Health Promotion Services, we estimate that there are approximately 700 child health centres and school health service units in Norway. However, it is interesting to note that currently only 30 child health centres contribute to Noklus. We have no knowledge of how laboratory work is organised at other child health centres and in school health service units. 

Objective of the study

To our knowledge, no previous research has systematically surveyed the laboratory work carried out at Norwegian child health centres and in school health service units. This was therefore the objective of this study. A sub-objective was to check the quality of these activities by identifying the level of laboratory training and laboratory course attendance, as well as existing quality assurance practices.

Method

We carried out the survey by sending an online questionnaire to all leaders of child health centres and school health service units in Norway. We sent a total of 690 e-mails that included a link to an electronic questionnaire. The e-mail addresses of unit leaders were first identified by Noklus’ local laboratory advisers. Some of these e-mail addresses proved to be wrong. 

There is no national listing of all child health centres and school health service units. Based on a preliminary survey conducted by Noklus’ local laboratory advisors, combined with conversations with representatives of the national associations for midwives and public health nurses, we estimate that there are approximately 700 child health centres and school health service units in Norway. 

In 2022 there were 356 Norwegian municipalities. As there is a minimum of one child health centre in each municipality, there are at least 356 such centres. Larger municipalities, particularly in urban areas, will have more than one centre. An estimate of approximately 700 units therefore appears to be more realistic. 

The questionnaire

The questionnaire was designed in consultation with Noklus staff. It was distributed in the autumn of 2022 and the deadline for responding was set to ten days. Those who failed to respond, were sent two reminders. The form surveyed the extent and nature of laboratory work undertaken at the units, and the degree to which these activities were quality assured. 

We asked if the unit carries out laboratory work (yes/no), and how often various activities are conducted, including urine-based pregnancy tests, urine-based chlamydia tests, taking venous blood samples to be sent away for analysis, glycated haemoglobin (HbA1c), glucose, glucose load for pregnant women, C-reactive protein (CRP), on-site urine dipstick testing, taking urine samples to be sent away for dipstick testing, and taking urine samples to be sent away for cultivation (never/a few days per month/a few days per week/daily). 

Questions were also asked about whether laboratory work is included in training schedules (yes/no/don’t know), how often staff attend courses in laboratory work (never/less often than once a year/once per year or more often), if there are written procedures for laboratory work (yes/ no/don’t know), who has drawn up these procedures (the unit/GP surgery/Noklus/others), and if instruments undergo quality control (yes/no/don’t know).

Analyses

We used SPSS version 29 for all analyses, which are generally descriptive. Primary, lower secondary and upper secondary school health services were merged into a single variable, ‘the school health service’, in the main analyses and in tables. 

Answers to the question of how often each of the laboratory tests were conducted were further dichotomised into yes (consisting of response options daily/a few days a week/a few days a month) or no (consisting of response option never).

Ethical considerations

This study’s main objective was to survey laboratory work on an overarching level, and the results were intended for quality assurance purposes. The study is therefore outside the mandate of the Regional Committees for Medical and Health Research Ethics (REK).

Results

Distribution of laboratory work at child health centres and in the school health service 

Out of 450 responses received, 433 were considered unique following data cleaning, during which duplicates from the same unit were removed, etc. Unit managers responded separately for each type of unit, so as to give an accurate picture of current practice. Given an estimated population of 700 units, the response rate was 62 per cent. Table 1 shows the distribution of units by county. 

Of the 433 units that completed the questionnaire, 303 (70 per cent) responded that they carry out laboratory work. Figure 1 shows the distribution by type of unit: pregnancy and maternity centres (n = 137, 94 per cent), health centres for infants aged 0‒5 (n = 18, 27 per cent), health centres for adolescents (n = 89, 97 per cent) and school health service units (n = 59, 47 per cent). Looking specifically at school health service units, the percentage was lowest at primary school level (10 per cent) and highest at secondary school level (53 per cent).

Extent and nature of laboratory activities by type of unit

The range of laboratory services included eleven analyses: haemoglobin (Hb), urine-based pregnancy tests, urine-based chlamydia tests, taking of venous blood samples to be sent away for analysis, glycated haemoglobin (HbA1c), glucose, glucose load for pregnant women, C-reactive protein (CRP), urine dipstick testing (undertaken on-site or sent away for analysis) and urine samples to be sent away for cultivation (table 2). 

Table 2 shows how the range of tests, and the percentage of laboratory work, vary with type of unit. Pregnancy tests, chlamydia tests and urine dipstick tests were the most frequently performed tests across the units.

Of the 146 pregnancy and maternity centres that carry out laboratory work, 91 per cent (n = 133) reported that they carry out urine dipstick tests, and 56 per cent (n = 82) that they send urine samples away for cultivation. Chlamydia tests and pregnancy tests were carried out by 52 per cent (n = 76) and 64 per cent (n = 93) of units respectively. 

Haemoglobin measurements were taken using in-house instruments by 71 per cent (n = 103) of units while glucose measurements were taken by 27 per cent (n = 39) and glucose load by 14 per cent (n = 21) of units. Taking venous blood samples to be sent away for analysis was reported by 26 per cent (n = 38) of units.

Health centres for adolescents reported the highest proportion of chlamydia testing (91 per cent) and pregnancy testing (84 per cent). Urine dipstick tests were conducted by 35 per cent (n = 32), while 21 per cent (n = 19) sent urine samples away for cultivation. In the school health service, pregnancy tests (42 per cent) and chlamydia tests (39 per cent) were the most common, while 12 per cent (n = 15) and 8 per cent (n = 10) of units respectively carried out urine dipstick tests and sent away samples for cultivation.

Procedures, training and quality assurance of laboratory work

Of the units that carry out laboratory work, 45 per cent (n = 135) responded that these activities are included in their training schedule, while 46 per cent (n = 140) had written procedures for laboratory work and 32 per cent (n = 96) undertook quality control of their instruments (table 3). 

The percentage of units with written procedures was lowest for pregnancy and maternity centres and for health centres for infants aged 0–5 (both 33 per cent) while it was highest for health centres for adolescents (64 per cent) and school health service units (54 per cent).

When asked about attending courses, 69 per cent (n= 210) responded that they had never attended a course in laboratory work (table 3). By type of unit, this answer was given by 65 per cent (n = 89) of pregnancy and maternity centres, 50 per cent (n = 9) of health centres for infants aged 0–5; 73 per cent (n = 65) of health centres for adolescents and 80 per cent (n = 47) of school health service units. 

Furthermore, 31 per cent (n = 94) of units responded that they had their own laboratory procedures, while 66 per cent (n = 200) shared procedures with a GP surgery or other unit. Only 3 per cent (n = 9) used the laboratory procedures produced by Noklus.

Discussion

Extensive laboratory activities – but inadequate quality control

The results of this survey indicate that extensive laboratory work is carried out at Norwegian child health centres and by the school health service, but that there is inadequate quality control. When there is no systematic quality control, patient safety is at risk, as is effective use of resources. It is therefore essential for service-users as well as for society at large that laboratory work is systematically quality assured.

Varying laboratory practices between types of units 

As many as 70 per cent of child health centres and school health service units reported that they carry out laboratory work, but there was considerable variation in terms of the extent and nature of the laboratory analyses that were undertaken. Health centres for adolescents and school health service units reported extensive laboratory work, with virtually all health centres for adolescents engaging in laboratory activities. This is a finding of great interest. 

The range of services on offer will be adjusted to the specific needs of a unit’s target groups. This is likely to affect the extent and nature of the laboratory work carried out by the different types of unit. For example, health centres for adolescents have longer opening hours and focus particularly on those aged 12‒20. Young people often contact the centres with questions relating to sexual and reproductive health (2, 14). 

These centres’ services include guidance on contraception, pregnancy testing and testing for sexually transmissible infections such as chlamydia. This may explain the high rate of such laboratory analyses. By comparison, school health service units are open only during school hours and focus on psychosocial follow-up, lifestyle guidance, proactive truancy programmes and vaccination programmes (15), all of which are less dependent on laboratory services.

Inadequate training and routines can lower the standard of analysis and diminish patient safety

In order to ensure that health and care services are of an appropriate standard, it is essential that healthcare personnel are in possession of the necessary competence, resources and tools (1, 4). Yet our findings show that healthcare personnel receive inadequate training in laboratory work. The majority stated that they had never received such training while qualifying, nor by attending in-service courses. Laboratory work requires specific competence in sample taking, use of equipment and interpretation of results (5, 6). 

Earlier studies have shown that inadequate training and the lack of professional updates will increase the risk of errors (5–7, 9), resulting in negative consequences that impact adversely on the standard of treatment and patient safety (5–7). 

Pregnancy and maternity centres are at particular risk of providing reduced standards of treatment because while more than 90 per cent report that they carry out laboratory work, less than half have received training, and fewer than one in three have attended a relevant course. 

Because laboratory tests are often used to assess and monitor conditions like anaemia and gestational diabetes, inadequate training and incorrect test results can reduce the quality of the healthcare provided for mother and child. A specific example is haemoglobin measurements, which two thirds of pregnancy and maternity centres reported taking. If a finger-prick test is used for pregnant women with oedemas, the results may be unreliable (16). The diagnostic assessment must take account of this fact. 

However, it is important to point out that similar challenges associated with limited training in laboratory work appear also to affect other types of unit. Health centres for adolescents reported high laboratory activity, but also inadequate training and course attendance. Laboratory tests at these units are often important for the prevention, treatment and monitoring of sexually transmissible diseases and pregnancy issues. Inadequate training in correct sample taking, for example for chlamydia testing, can lead to false negative test results and incorrect clinical follow-up.

Earlier research shows that up to 70 per cent of incorrect test results are caused by errors that occur before the analysis stage (5, 6). By way of illustration, we can look to urine dipstick testing, where errors associated with the storage and handling of samples can lead to contamination and unreliable test results. The introduction of written procedures and good quality control routines for test instruments have proved to reduce or prevent such errors and help to ensure that laboratory work is carried out in a standardised, safe manner (7, 9, 10). 

However, more than half the units in our study reported that they had no written procedures for laboratory work. Of those who did have such procedures, only a few (9 units) reported that they were using procedures developed by Noklus. Our findings point to a potential for improvement and emphasise the need for a more systematic approach to the quality assurance of laboratory work. 

It is worth noting that pregnancy and maternity centres, which constitute the majority of units that carry out laboratory work, reported a lower rate of written procedures compared to other types of unit. However, several of these centres also reported that they undertake quality control of instruments. 

The combination of limited training, non-existence of written procedures and varying practice in terms of quality control of instruments may indicate that there is a need to further assess the quality of the laboratory work carried out at these units (5, 6, 10–12) and whether patient and staff safety is adequately protected, for example against the risk of infection (5–7). 

There is a need for systematic quality assurance initiatives and increased investment

Inadequate training of healthcare personnel and non-existent procedures and routines feature among the most important sources of error in point-of-care-testing (6, 8, 9). According to the World Health Organization’s (WHO) guidelines for good clinical laboratory practice, systematic training, documented procedures and quality assurance are essential to ensure the reliability and safety of laboratory work (17). 

It has also been well documented that participation in quality assessment programmes and regular quality controls contribute to a higher standard of analysis (7, 9, 10, 12). For example, in 2016, Bukve et al. (9) studied factors associated with high-quality analysis results for C-reactive protein (CRP), glucose and haemoglobin from Noklus’ external quality assessment programmes between 2006 and 2015. 

Other studies also demonstrate that continuous participation in quality assessment programmes leads to a higher standard of analysis, and that this standard is maintained over time (7, 10). 

Our findings indicate that laboratory work is inadequately quality assured at child health centres and in school health service units, despite their complexity and significance for patient safety. Laboratory work involves multiple activities, such as sample taking, sample processing, storage, analysis and result reporting, and if a mistake is made at one of these stages, the test result may be incorrect (5, 6). 

The more stages that are involved, the greater the risk of mistakes, particularly if healthcare personnel have inadequate knowledge about potential sources of error (5, 6). In a worst-case scenario, such errors can have an adverse impact on patient safety (5, 6). 

By way of an example, we can look at urine dipstick testing. If the sample is taken incorrectly, say not from morning urine, and if the sample is stored in sub-optimal conditions, for instance if more than two hours pass before the sample is checked, then this can lead to bacteria growth, unnecessary despatch for cultivation and an incorrect basis for treatment with antibiotics. High-quality laboratory practices are therefore essential to patient safety and an effective use of resources (5–9, 13).

In the Norwegian health service, child health centres and school health service units play an essential part. The take-up of their services is high among pregnant women, parents with young children and school pupils (1, 2). High professional standards are a premise for this wide access, including for laboratory work. Despite the fact that many health enterprises that provide laboratory services are associated with Noklus, only 30 child health centres currently take part in the Noklus quality assurance programme. 

The findings of this study may suggest limited awareness of the complexities of laboratory work and possible sources of error. Laboratory work is often a support function for diagnostics and monitoring (10–15), for example haemoglobin measurements that are taken when there is suspicion of anaemia (16). The work can therefore be seen as secondary to the core tasks of the service, as described in the guidelines issued by the Norwegian Directorate of Health (14, 15). 

In a municipal health service with limited resources, units must prioritise between a range of critical tasks. Consequently, there may be a tendency to give ‘support’ services lower priority than other health services. This may lead to laboratory work being carried out by staff without adequate training, without set routines and without the necessary quality controls (10–13). Such circumstances can, all things considered, reduce the quality of the services provided and diminish patient safety (5, 6).

The Norwegian Act Relating to Municipal Health and Care Services (3) emphasises that the managers of health enterprises have a responsibility to work systematically on quality improvement and patient safety (3). The Noklus projects conducted in nursing homes and in the home care sector demonstrate that systematic training and good quality control routines can significantly improve the quality of laboratory work (9, 12, 13, 18), and that participation over time in a national quality assurance system will improve the standard of laboratory analyses in the primary health service (9, 10, 11, 13). There is therefore reason to believe that similar efforts in child health centres and school health service units will boost the standard of laboratory work in this sector as well.

Strengths and limitations of the study

The study’s broad dataset is a considerable strength. The data include information provided by a large number of units from all over Norway. The study gives a representative picture of the status for laboratory work at child health centres and in school health service units. This provides a robust foundation for assessing the need for quality assurance and training and identifies shared challenges and improvement potentials across the different units.

However, it is also important to recognise some limitations of the study, which uses self-reported data provided by specific individuals at the units. This may involve a risk of over reporting as well as under reporting of quality assurance routines and training. A response rate of 62 per cent gives rise to questions about representativeness and potential selection bias. It is likely that units that have better quality control routines were more inclined to take part, which may have led to an overestimation of quality assurance routines. 

It is also a shortcoming that the questionnaire did not include a free-text field, as this limited the potential for providing in-depth answers. Moreover, the questionnaire included only specific laboratory analyses rather than covering the full range of laboratory activities. This gives reason to believe that the extent of activities is larger than what the study suggests. 

We should also note that there is currently no national listing of child health centres and school health service units. Ahead of this study, a Noklus survey estimated that there are approximately 700 units nationally. While this estimate indicates the extent of laboratory work carried out, it also emphasises the need for more systematic recording and updating of information about the units.

Conclusion

Our survey of laboratory work carried out at Norwegian child health centres and in school health service units demonstrates considerable activity, but also a considerable potential for improvement in terms of training, course attendance and quality assurance. Laboratory work carried out at child health centres and in school health service units should be subject to quality control routines similar to those in other parts of the primary health service, in order to ensure the safe treatment of patients. 

A systematic approach is all-important. There should be written procedures for key parts of the laboratory process, including the taking, handling and storing of samples, and for the use and maintenance of instruments. There should also be routines for cleaning and infection control. External and internal quality control of measuring instruments should be conducted regularly and must be documented. Staff must have access to updated procedures and e-learning resources.

Participation in external quality assessment programmes, such as Noklus, can help to safeguard the standard of analyses and detect nonconformances. We hope that the findings from this study will increase awareness of the importance of laboratory work and form a factual basis for further development and implementation of relevant measures. In the longer term, this may raise the standard of analyses and improve resource utilisation and patient safety.

Acknowledgements

We are grateful to laboratory doctor Ann Helen Kristoffersen for her valuable help in improving the first draft of the manuscript. We also wish to thank laboratory doctor Mette Christophersen Tollånes for her technical assistance with drawing up the Survey Monkey questionnaire.

The authors declare no conflicts of interest.

Open access CC BY 4.0

Introduction 

Between 316 000 and 340 000 people in Norway are estimated to be living with diabetes. Of these, approximately 90 per cent have type 2 diabetes. In addition, around 60 000 are living with undiagnosed diabetes (1). A Norwegian study shows that 24 per cent of older people receiving home care services have diabetes (2). 

Internationally, the prevalence of diabetes is also high. The International Diabetes Federation (IDF) estimates that 537 million are living with diabetes today, of whom 90 per cent have type 2 diabetes (3).

Older people with diabetes may have a considerably reduced physical function and health status (4). Diabetes is linked to microvascular and macrovascular complications that mean that those with diabetes are more vulnerable to cardiovascular diseases, eye damage and kidney damage as well as polyneuropathy that can result in the development of foot ulcers (5, 6). In 2023, a total of 518 amputations were carried out in Norway (7). 

As many people live with diabetes over time before the disease is detected, several will already have developed irreversible complications by the time of diagnosis (8). The high proportion of people with diabetes not only represents a challenge for those concerned but also for society as a whole (6, 9). 

Diabetes-related complications lead to more hospital admissions and lay claim to considerable resources in the primary health service in the shape of follow-up and treatment by GPs and home care services (8, 9). 

Although there are national specialist guidelines for diabetes follow-up, Norwegian studies have revealed a lack of routines and great variations in diabetes care in both home care services and GP practices (10, 11). A Swedish study shows that routines for measuring blood sugar levels were documented only in the case of 61 per cent of the patients receiving home care services (12). 

In their study, Fløde et al. found that people with diabetes receiving help from home care services experienced hypoglycaemic episodes while being treated with both insulin and other glucose-lowering medications (13). 

The specialist procedure for diabetes in the primary health service shall promote good quality follow-up for those with type 2 diabetes. This procedure provides guidelines on the routines required, stating, for example, that medications and glucose measurement routines for people with type 2 diabetes living at home should be reviewed annually. The routines should be re-evaluated at regular intervals as well as when the health of the patient changes. Individual risk of low glucose level should be mapped and documented in an annual review of medications (14). 

RNs play a key role in diabetes care, and a more targeted use of advanced nursing skills in the primary health service can lead to better patient treatment (15). Access to a diabetes specialist nurse and the use of a structured diabetes form had a positive effect on the follow-up of those in the primary health service with type 2 diabetes (16). When the primary health team also includes RNs, GPs assert that people with type 2 diabetes receive better follow-up than if only GPs are involved (17). 

Training of health personnel is one of the few strategies that promote better quality follow-up for those with type 2 diabetes (18). Health personnel providing services to older people with diabetes must have broad-based expertise enabling them to monitor a complex clinical condition and be aware of the development of the disease over time. Moreover, routines and procedures to ensure good quality follow-up must be in place (19). 

Therefore, to enhance the quality of diabetes care in the primary health service, we need more knowledge of RNs’ practices in diabetes follow-up, as well as their needs for competence enhancement.

Background for the study

Competence enhancement is a priority area for the Northern Norway Regional Health Authority. A total of 600 RNs and doctors have attended competence-enhancing diabetes courses. The purpose of the course is to enable participants to apply national guidelines for diabetes care and carry out individual and annual check-ups in the case of type 2 diabetes. 

A further aim is to ensure that the participants are able to help people with diabetes cope better with their everyday lives. The courses include the following topics: medications for type 2 diabetes, nutrition, the Noklus diabetes form and its use in practice. 

The courses also cover topics such as reflections and measures based on diabetes case reports and our course of action when we fall short. The first and second authors have been involved in organising and teaching several of these courses.

In this study we wished to explore RNs’ experiences of attending competence-enhancing diabetes courses and to examine what characterises the RNs’ diabetes care in the case of patients with type 2 diabetes in the primary health service. 

Method

The study has an exploratory qualitative design. The data are based on individual interviews of RNs working in the primary health service who have attended competence-enhancing courses. The COREQ checklist was used to report the research process (20). 

Informants and recruitment

Seven RNs from four different local authorities in Northern Norway were interviewed. They were recruited via competence-enhancing diabetes courses. Oral information about the study was given during two of the courses. An email with written information and an invitation to participate was sent to all RNs on the course (n = 43). We found their names, professional background and email addresses on the course participant list. Table 1 provides an overview of the informants. 

Data collection method

We conducted individual, semi-structured interviews on the telephone or via Microsoft Teams (21). A topic guide was prepared beforehand but we also encouraged informants to speak freely about topics they found relevant. The interviews were audio-recorded using the online forms on the Nettskjema survey tool, developed and operated by the University of Oslo. 

Nettskjema is a secure solution that preserves anonymity and data security. The interviews were conducted by the first author and lasted from 30 to 45 minutes. They were carried out two to three months after participation in the diabetes competence-enhancing course. 

Analysis method

The audio-recordings were automatically transcribed in Nettskjema, and the first author reviewed the transcriptions. We carried out an inductive analysis of the transcribed material based on Braun and Clarke’s six-step thematic analysis process (22). The first step was to become familiar with the data. At this stage, audio files and transcriptions were reviewed several times and reflections noted. We also considered that we had reached data saturation. 

At step two we coded the data systematically in line with the objective of the study. At steps three, four and five, the codes were systematised and the themes defined. We wrote an analytic text for each theme and selected illustrative quotations from the informants. The first author was in charge of the analysis process and had regular meetings with the second and third authors to discuss preliminary analyses. 

As the first and second authors had participated actively in the diabetes courses, it was important to reflect on and critically review the analyses to become aware of our own bias. To ensure reflexivity, the third author scrutinised the analysis process, and we repeatedly returned to the data to ensure our interpretation was correct.

Research ethics

The study was conducted in line with the Declaration of Helsinki, and was reported to the Norwegian Agency for Shared Services in Education and Research (Sikt) which is responsible for data protection and personal privacy (reference 899584). All informants received oral and written information about the study, and gave written consent. All data were de-identified. 

Results

The study had a dual purpose: to examine RNs’ experiences of attending competence-enhancing diabetes courses and to investigate what characterised their diabetes nursing practice in the primary health service. The results are presented in line with this dichotomy, with each section presenting two themes from the analysis process. Figure 1 provides an overview of the themes. 

RNs’ experiences of competence-enhancing diabetes courses 

Useful to get professional updates together with others, especially in respect of medications

The RNs found that they greatly benefitted from the diabetes courses. Several of them related that they gained new insights in connection with drugs treatment, emphasising the benefits of acquiring knowledge about new medications. Several mentioned what they had learned about particular medications and recommendations to discontinue medications in consultation with the GP if patients were dehydrated or had a passing illness:

‘As a result, we’ve adopted a new routine with Forxiga. We note on the medication cards of patients taking the drug that we’ve had to discontinue it when there’s a decline in their general health due to the risk of ketoacidosis. That was probably one of the things I found most useful afterwards.’ (RN 1).

The RNs found the course important in terms of updating their professional skills and for the opportunity to meet other RNs and doctors from the same local authority with whom they could exchange experiences related to routines and follow-up. During the interviews, the RNs pointed out that it was particularly useful to be able to discuss problems with others when their own follow-up fell short. They also found it useful to discuss case studies. After attending the course, RNs were more confident about their own follow-up practices and in providing guidance for colleagues.

There is a great need for competence enhancement, more courses and more frequent courses

The courses were organised for RNs and GPs in the primary health service. Several informants commented that this type of course should be offered more frequently so that everyone working in the primary health service could participate and improve their competence. The course gave them the knowledge they lacked about diabetes follow-up, and they acquired a better understanding of the importance of systematic patient follow-up, observations and medication use: 

‘I think it’s great that you have focus on this. I see so many consequences of poorly regulated diabetes. Everyone should get more information about diabetes, how you work and how to recognise the signs of diabetes. I wish we had more of this. Our daily jobs are so hectic. You could say it’s a bit disorganised.’ (RN 2) 

The RNs also called for courses for nursing associates in the primary health service who have tasks in connection with diabetes care. Nursing associates make vital observations and carry out treatment such as injecting insulin in accordance with the Noklus form. Consequently, the RNs believed it was important that the competence of nursing associates was also enhanced in this respect.

Characteristics and routines related to nursing care for people with type 2 diabetes in the primary health service 

Lack of clear routines in home care services 

The RNs in our study who work in home care services do not have special responsibility for people with diabetes. Some were the primary contact for a group of patients, some of whom had diabetes. RNs in home care services had busy days and had to prioritise tasks. In the case of diabetes patients, the most important task was managing high or low blood sugar levels. 

According to the RNs, they have an allocated amount of time in the patient’s home where they care for them, help them interpret blood sugar values, and inject insulin as prescribed. They also check whether the patient has eaten before injecting insulin. No time is allowed for observation or for returning to check blood sugar levels. At times, RNs find this unsafe. 

Several nurses said that they had no routines or plan for following up those with type 2 diabetes apart from managing their current blood sugar level: ‘We have no written procedures, no we don’t.’ (RN 2) 

The RNs wanted to have clearer routines for managing diabetes and thought it would be reassuring to have such routines in place. ‘There’s an expectation that we should have written procedures.’ (RN 1) 

The RNs also called for a set procedure for recording HbA1c in the patient’s medical record or for having regular meetings with doctors. Although they did not have routines, they observed the long-term harm resulting from diabetes. One of the RNs said they were aware of the importance of paying attention to the patient’s feet if they had polyneuropathy so as to prevent the occurrence of diabetic foot ulcers: 

‘In fact I find that those with type 1 diabetes … So there are actually good routines for them, while the people with type 2 diabetes are kind of excluded. We have type 2 diabetes patients who have suffered fairly severe harm. They have had type 2 diabetes for a long time and have a lot of sequelae (after-effects of illness) as a result of a lack of good follow-up, because they ‘only’ have type 2 diabetes. I think there should be a bit more focus on them.’ (RN 2)

The RNs said that there should be a diabetes coordinator in each municipality with responsibility for devising routines and training personnel in the primary health service. The coordinator could also function as an important support for nurses when they needed advice. Currently, they had to call the GP practice or send an online message to the GP to ask for advice. The RNs felt that managers should schedule more time for the follow up of people with diabetes so that there was more time to observe and to implement procedures. 

RNs in GP practices have routines for the follow-up of people with diabetes 

The RNs in our study who worked in GP practices had routines for the follow-up of people with diabetes. Most had set aside one day per week, or had 20 per cent of a full-time equivalent for diabetes monitoring. They performed annual check-ups of people with type 2 diabetes in addition to following up those making lifestyle changes: ‘I help an awful lot of people with lifestyle changes, that’s what I work with most, motivating them to change their lifestyle.’ (RN 4). 

The RNs called in patients annually. Blood tests and urine tests carried out beforehand were part of the annual diabetes check-up. The RN measured blood pressure and weight, and conducted a monofilament test – a test showing whether there is any loss of protective sensation under the feet. The RN also checked the insulin infusion site for the occurrence of lipohypertrophy, and discussed lifestyle factors such as diet and physical activity. 

They also checked whether the patient had visited an eye specialist, and documented this. The patient met the doctor at the end of the appointment, or during a new appointment at the GP practice two weeks later, and the GP assessed the treatment. Figure 2 provides an overview of the content of the annual check-up as reported by the RNs in this study. 

The RNs use the Noklus diabetes form to structure the annual check-up. The use of this form ensures that that all items are monitored during the annual check-up. RNs can then extract data from their own database at the GP practice and follow the development of HbA1c, for example, over time and check that all procedures have been completed. The RNs observed a positive development after introducing structured follow-up of type 2 diabetes patients: 

‘I started in this position in January, and everyone who has attended a check-up after the summer has had a fall in HbA1c.’ (Nurse 6).

Discussion

RNs’ experiences with competence-enhancing diabetes courses 

The results of the study show that RNs in the primary health service need diabetes courses to increase their competence. The RNs pointed out the usefulness of the presentation of updated national guidelines and fresh knowledge about medications. They also highlighted the value of reflecting on problems together with others. Our results also show that home care services lack routines, while RNs’ follow-up at GP practices was structured. 

The RNs’ feedback on the diabetes courses was generally positive. The course gave them greater competence in monitoring people with type 2 diabetes. Moreover, it was important for them to meet health personnel from their own local authority and to reflect on diabetes care together with others. Earlier studies have also shown how training and reflection groups can promote the development of competence (18, 23). 

The RNs felt more confident in their follow-up of diabetes and their ability to advise colleagues after attending the course. Nevertheless, they wanted the course to be offered to all local authority nurses. In addition, they suggested that nursing associates should receive such training as they are vital in the follow-up of patients with type 2 diabetes. At a time when there is a shortage of both nurses and nursing associates, building the competence of both these professional groups would be a strength (24). 

In one study, 24 per cent of the patients receiving community nursing care had diabetes (2). This is a considerable number, and requires corresponding resources. Enhancing the competence of doctors and nurses conforms with the competence boost described in the national diabetes plan (19). Knowing the cost of diabetes complications for both individuals and society, prevention has many advantages (9). Several RNs would like to see a diabetes coordinator in each municipality who could promote competence enhancement. 

With increasing age and complex health conditions, it is not possible for all older people living at home to monitor their own diabetes treatment. In line with our study, earlier studies also show that the primary health service lacks routines for diabetes care (10, 11), something which may have serious repercussions. For example, hypoglycaemia can increase fall risk, which may have grave consequences for older people with diabetes (25). 

Diabetes complications can be painful for patients, and cost society millions of kroner each year (6). Good routines in diabetes care can be crucial in ensuring that people with diabetes are not over-treated or wrongly treated (19). The specialist procedure for diabetes in the primary health service was published in 2023, and is intended to ensure that older people with diabetes receive good treatment and follow-up (14). 

The specialist procedure is normative and specifically proposes how follow-up should be organised. Some of the RNs we interviewed had heard of it, but did not use it actively in the follow-up of patients with diabetes. 

Organisation of nursing practice and routines in the primary health service 

The RNs working in home care services have a hectic workday with a time pressure that meant that they had no time to learn about the specialist procedure or other national guidelines. To ensure that procedures lead to a more predictable follow-up of people with diabetes, they must be integrated into the daily range of services. We know from the literature that changing practice takes time (26). 

Consequently, prioritising the speedy introduction of good routines for diabetes care is important, and it is also a managerial responsibility (27). The RNs in our study wanted managers to be more involved in planning the RNs’ daily work. 

The study also shows a need for a diabetes coordinator in the primary health service. The diabetes action plan of the Northern Norway Regional Health Authority recommends that local authorities appoint a diabetes specialist nurse to meet the increasing need for diabetes expertise (28). 

Ideally, the local authorities should employ more nurses with diabetes expertise, but appointing a diabetes specialist nurse or diabetes coordinator would be a good start while ongoing training should also be provided for nurses and nursing associates. 

RNs at GP practices have routines for following up patients with diabetes 

‘Task-shifting’ is a term introduced by Norway’s Health Personnel Commission in 2023 (24). According to the national specialist guidelines for diabetes (5), diabetes patients have the right to an annual check-up. Our study shows that RNs at GP practices carry out a number of tasks at the annual check-up. 

In addition to taking samples , they provide systematic guidance to people with type 2 diabetes in connection with lifestyle changes, in line with the recommendations of Jensen et al. (29), Evju and Skogmo (30), and the Norwegian Directorate of Health (5). The RNs at GP practices were also responsible for registering data in the Noklus diabetes form, the use of which is recommended by the Directorate of Health (5). 

The use of this form during the annual check-up assisted RNs in collecting data on diabetes follow-up for the Noklus diabetes register for adults. This is an important contribution and will enhance knowledge of diabetes follow-up (31). It created good routines for the follow-up of type 2 diabetes patients, and GPs freed up time for other tasks. This type of ‘task-shifting’ can both prevent long-term harm and lead to a more sustainable organisation of the health service as pointed out in the report of the Health Personnel Commission (24).

Reflections on methodology

The study was carried out by a group of researchers, two of whom have played an active role in diabetes care in Northern Norway for a number of years. It is a strength of the study that the authors have good knowledge of the specialist area and the competence-enhancing courses. In addition, the inclusion of a third researcher reinforced the reflexivity of the study. The study had seven informants, and the number may be too small to capture all the nuances of diabetes care in the primary health service. 

However, a strength of the study is that the RNs represented four different local authorities and worked in different institutions. We can also assume that the RNs who were most satisfied with the course agreed to act as informants. 

Conclusion

This study has given us an insight into the diabetes care that RNs in the primary health service carry out. The RNs found competence-enhancing courses positive and useful. They emphasised that these courses should be offered regularly. 

Our study shows that RNs show commitment and willingness to change their practice to embrace a more systematic form of care. Clearer structures and routines can provide improved services for those with type 2 diabetes, and can prevent complications, which in the long-term would benefit society as a whole. Cooperation between RNs and GPs in addition to task-shifting can free-up GPs’ time. 

Acknowledgements

We are grateful to the study informants for sharing their useful knowledge and experiences of diabetes care in Northern Norway. We would also like to thank Assistant Professor Rada Sandic-Spaho and Professor Tove Godskesen for reading the article and making suggestions. 

Conflict of interest

Ragnar Martin Joakimsen is a member of the Norwegian Diabetes Association and the diabetes advisory board of the Directorate of Health. He has received consultant fees from the Norwegian Diabetes Association.

Open access CC BY 4.0

Introduction

Health science study programmes, such as nursing and physiotherapy, are expected to prepare students for the increasingly digitalised health service (1–3). These expectations also impact on teaching practices, leading to greater use of student-centred learning methods and the pedagogical application of digital learning technology in education (4).

The COVID-19 pandemic brought these issues to the forefront and necessitated teaching methods beyond traditional classroom instruction, such as lectures, in nursing and physiotherapy study programmes (5, 6). These teaching methods also placed new demands on the skills of educators and students.

According to the Norwegian Qualifications Framework for Lifelong Learning (NQF), students are expected to acquire knowledge, skills and general competence (e.g. managing subject-specific and professional ethical issues and information literacy) that represent progression (7). 

Progression is reflected in the learning outcomes defined in programme and course descriptions, as well as in the design of study programmes that facilitate students’ attainment of these outcomes through a variety of teaching methods and learning activities (8).

In blended learning, digital and on-campus teaching are combined. This can involve synchronous learning, where instruction takes place in real time and is often personalised and online, or asynchronous learning, which allows students to engage at their own pace and from any location, either online or offline (9).

In this article, we understand digital learning as an umbrella term for practices in which digital learning technologies are used in various ways to improve students’ learning outcomes. However, the term is complex, covers a range of interpretations, and lacks a common conceptual framework.

Examples of digital learning technologies used in blended learning include virtual reality (VR) and augmented reality (AR). VR offers an immersive, fully digital environment where users can practise patient communication using, for example, VR goggles in a simulated setting.

AR involves overlaying digital elements onto the real-world environment, allowing users to see and interact with both the physical surroundings and digital objects at the same time, for instance, by using AR glasses or a tablet in a simulated patient scenario (10). 

Studies on VR and AR, however, show mixed results. A systematic review investigating simulation with VR and AR in physiotherapy study programmes demonstrates effects on knowledge acquisition and practical skills (11). However, another systematic review in health science study programmes found no difference between VR technology and traditional classroom teaching (12). A third systematic review within health science study programmes highlights the need for studies with larger samples and robust research designs to properly evaluate the effectiveness of learning via VR (13).

Another form of blended learning is the flipped classroom, where students access course content through various digital learning resources, such as videos, podcasts and quizzes, which they are expected to have watched, listened to or completed before attending on-campus sessions (14, 15). The aim is to facilitate deep learning, enabling students to understand and apply knowledge in new situations (16, 17). 

Systematic reviews within various health science study programmes show better learning outcomes with flipped classroom methods compared to traditional classroom teaching (18–20). Meanwhile, another systematic review indicates that findings are inconclusive in terms of the benefit of the flipped classroom (21). 

Objective of the study

An increasing number of review articles in the field highlight various effects of blended learning. They emphasise the need to further systematise knowledge from recent reviews and to draw up an overview of reviews (OoR) on the effects of blended learning for health science students.

We therefore aimed to answer the following research question: ‘What effects have systematic reviews identified for blended learning compared to traditional classroom teaching, measured in terms of knowledge, skills, general competence and satisfaction with the teaching among health science students?’ 

Method

This OoR follows the Norwegian Institute of Public Health’s method for OoRs (22). The protocol is registered in Inplasy (registration number INPLASY202480057).

Selection criteria

We included systematic reviews published from 2020 onwards that examined the effects of blended learning for health science students compared to traditional classroom teaching with lectures, measured in terms of knowledge, skills, general competence and/or student satisfaction with the teaching (Table 1).

Literature search

Our literature search was inspired by a previous search from a published systematic review (23), where the population was physiotherapy and occupational therapy students. Since we were searching for systematic reviews in our OoR, we revised the search strategy and ran the search again.

A librarian conducted the search in Medline Ovid, Web of Science, Educational Source (EBSCOhost), Cochrane Library and Epistemonikos for the period January 2020 to May 2024 (Appendix 1 – in Norwegian). We checked reference lists but did not contact experts for unpublished reviews. 

Selecting reviews

We screened the search results at the title and abstract level independently using Rayyan software (24). When we disagreed, we discussed the article until we reached a consensus. We also assessed full texts of reviews identified as relevant against our inclusion criteria independently. Systematic reviews that met our inclusion criteria were included. We did not include scoping reviews or integrated reviews in the evidence base but listed them separately. 

Extracting data

The second author extracted the following characteristics from the relevant reviews: author, year, number of studies included, population (type of education, education level, number of participants), type of blended learning, comparison, outcomes (types of assessment measured as knowledge, skills, general competence and/or student satisfaction with the teaching) and reported results. The first author checked the extracted data.

Critical assessment of reviews selected 

To critically assess the methodological quality of the reviews selected, we independently used the Checklist for Assessing a Review Article from the Norwegian Electronic Health Library’s website (25). The checklist consists of three parts with the following questions: A: Can you trust the results?, B: What do the results tell you?, and C: Can the results be useful in practice? These contain a total of ten questions, but we only applied the first six, which concern the internal validity of the reviews (part A). We did not assess the last four questions (parts B and C), which deal with the results and the external validity of the reviews. The question responses were ‘Yes’, ‘No’ or ‘Unclear’ (Appendix 2 – in Norwegian).

Synthesis of results

All reviews that were not systematic reviews, such as scoping reviews and integrated reviews, were only listed for reference purposes as they have a broader approach than our research question about effect. We categorised the results from the systematic reviews selected based on outcomes. The results are presented in text and tables. 

Ethical considerations

Since an OoR is based on systematic reviews of published articles in which ethical considerations have already been addressed, this aspect is not relevant in an OoR. 

Results

Sample of reviews

The literature search yielded 505 results after duplicates were removed. One review was identified through a manual search of reference lists and 29 were identified during the screening process. Of these, 10 were scoping reviews or integrated reviews (Appendix 3 – in Norwegian). We also assessed 14 systematic reviews in full text to determine whether they met our inclusion criteria. Of these, we included five (23, 26–29) (Figure 1). 

Methodological quality of reviews selected

Of the five reviews selected (23, 26–29), we concluded that the methodological quality was good in two (23, 26) and moderate in three (27–29). Two of the reviews (27, 29) only searched for studies written in English. Studies in other languages could have produced different results in these reviews, and we therefore consider this a methodological weakness.

Luceno-Anton et al. (28) did not describe their analysis method or assess the option of meta-analyses despite including three randomised controlled trials. We also regard this as a methodological weakness of the study (Table 2).

Characteristics of reviews selected

Three reviews included nursing students (26, 27, 29) and two reviews included physiotherapy students (23, 28). One review addressed the effect of different types of blended learning (23), and four summarised the effect of VR technology (26–29) (Table 3).

Five reviews measured knowledge (23, 26–29), four measured satisfaction (23, 27–29) and three measured skills (23, 26, 29). Of the 54 individual studies that formed the evidence base for the five reviews selected (23, 26–29), few were included in all the reviews with the same population. The underlying data in the five reviews differed.

Among the three reviews that included nursing students (26, 27, 29), only 5 of 28 studies (18%) were common to all three. In contrast, of the 26 studies included across the two reviews focusing on physiotherapy students (23, 28), only 2 (8%) appeared in both (Appendix 4 – in Norwegian).

The effect of blended learning on knowledge

Only the review by Ødegaard et al. (23) examined the effect of blended learning or learning through a flipped classroom model compared to traditional classroom teaching, on knowledge outcomes. 

The review included a meta-analysis of three randomised controlled trials, which demonstrated that flipped classroom instruction with preparatory learning activities significantly improved knowledge acquisition in anatomy, neurology and pathological conditions, as measured by digital multiple-choice tests (SMD [standardised mean difference] 0.41 [95% CI 0.20, 0.62]) among physiotherapy students.

The outcome was measured as knowledge in muscular palpation using digital multiple-choice tests. The four reviews selected that evaluated the effect of blended learning with VR technology compared to traditional classroom teaching measured knowledge outcomes among nursing students (26, 27, 29) and physiotherapy students (28).

Chen et al. (27) reported a meta-analysis showing a significant improvement in knowledge (SMD 0.58 [95% CI 0.41, 0.75]) among nursing students using VR. The reviews by Shorey and Ng (29), as well as Woon et al. (26), did not include meta-analyses but concluded that VR technology can enhance knowledge acquisition among nursing students. 

This result was not replicated among physiotherapy students in the review by Lucena-Anton et al. (28), which found no difference in knowledge outcomes between blended learning and traditional classroom teaching.

The effect of blended learning on skills

In their meta-analysis, Ødegaard et al. (23) examined the effect of blended learning using interactive websites or apps versus classroom teaching, measuring practical skills through the Objective Structured Clinical Evaluation (OSCE).

The meta-analysis, which only included 137 participants, demonstrated a significant effect of blended learning on various practical skills (SMD 1.07 [95% CI 0.71, 1.43]).

Another meta-analysis with 84 participants showed a significant difference between blended learning (including the use of self-produced videos) and classroom teaching, measured by OSCE on physiotherapy skills related to the back (SMD 0.49 [95% CI 0.06, 0.93]).
However, a separate meta-analysis found no difference between blended learning and traditional teaching measured by OSCE on physiotherapy skills related to balance (SMD −0.36 [95% CI −0.79, 0.08]). 

Both Shorey and Ng (29) and Chen et al. (27) summarised the effect of blended learning with VR technology on skills among nursing students. A meta-analysis in Chen et al. (27) found no difference between the use of VR and traditional classroom teaching on skills such as intravenous catheter insertion (SMD 0.01 [95% CI −0.24 to 0.26]). The review by Shorey and Ng (29) did not include meta-analyses but reported that two of the nine studies included demonstrated improvements in clinical skills, such as nurses’ management of respiratory problems in neonates.

The effect of blended learning on general competence

We found no reviews that met our inclusion criteria on the effect of blended learning on general competence.

The effect of blended learning on student satisfaction

A meta-analysis in the review by Ødegaard et al. (23) reported no difference between blended learning (including the use of interactive websites) and traditional classroom teaching in terms of students’ perceptions of learning (SMD 0.47 [95% CI −0.12, 1.06]).

The reviews by Chen et al. (27), Lucena-Anton et al. (28) and Shorey and Ng (29) summarised the effects of blended learning with VR technology on students’ satisfaction with the teaching. Chen et al. (27) summarised four studies involving 206 students, which showed no difference in student satisfaction between blended learning with VR technology and other learning methods (SMD 0.01 [95% CI −0.79, 0.80]). 

Similar findings were also reported in the reviews by Lucena-Anton et al. (28) and Shorey and Ng (29), although no effect estimates were provided.

Discussion

The purpose of our OoR was to update the evidence base on the effect of blended learning on knowledge, skills, general competence and satisfaction among health science students, compared to traditional classroom teaching. We selected five reviews (23, 26–29).

VR technology provides students with multiple learning environments 

Three of four reviews demonstrated a positive effect of blended learning with VR technology on knowledge (26, 27, 29), while two of these reviews found no difference in practical skills when using VR technology in blended learning compared to traditional classroom teaching (27, 29).

However, another systematic review with meta-analyses on the use of simulation technology demonstrated positive effects on students’ acquisition of technical skills and their ability to evaluate and address professional challenges, especially during clinical placements (30). 

One possible explanation is that simulation technology enables students to practise techniques that cannot be performed on real patients. This is supported by a study showing a significant effect of VR technology on learning in acute situations among medical students (31).
Another study indicates that factors such as the content, duration and practical application of the various virtual cases can vary, which also impacts on students’ learning outcomes (32).

One study also shows that such forms of simulation can help students gain knowledge of ‘complex structures, processes, practical laboratory procedures and techniques, as well as improved theoretical understanding, skills acquisition, and the ability to connect theory with practice’ (33, p. 3). 

Another study shows that in-person teaching combined with digital simulation tools better supported students’ engagement and satisfaction. This approach also enabled educators to use virtual technology more systematically and to offer more consistent and continuous support to students (34).

However, the same study found that students did not wish to use virtual laboratories or equipment as a replacement for in-person and authentic learning situations (34). This supports the notion that VR/AR technology is viewed more as a supplement and enrichment to teaching, rather than a substitute for in-person and more authentic clinical training (32, 35).

No difference in student satisfaction

The reviews that examined students’ satisfaction with blended learning found no difference between blended learning with VR technology and other learning methods (27–29). This was consistent with the findings in another systematic review (23), which examined whether there was a difference between blended learning using interactive websites or apps compared to traditional classroom teaching, measured by students’ perceptions of their own learning.
One possible explanation for the reported satisfaction is that students may have a need for personal contact with educators and fellow students, combined with the use of digital technology in learning contexts.

The 2022 Student Survey (Studiebarometeret) shows that second- and fifth-year students in various study programmes generally prefer digital learning, and those engaging with this most frequently reported the highest levels of satisfaction (36). One explanation may be that students’ expectations for studying and learning in digital environments have changed following their experiences with digital learning during the pandemic. Another possible explanation is that students with families, part-time jobs, or who live far away from the campus value the flexibility that digital learning provides (37).

The flipped classroom requires students to prepare and to be actively engaged

The flipped classroom model requires active students who are well prepared for activities both in the classroom and in other settings. It is not therefore surprising that the flipped classroom model has shown positive learning outcomes (18, 38). However, another systematic review shows that the evidence in favour of the flipped classroom is inconclusive (39).

The flexibility it offers allows students to choose when and where to prepare for classes, using formats other than traditional books and literature. This places the responsibility for learning on the students themselves and requires a high level of self-regulation (40).

However, meeting the expectations for preparation can be challenging in the Norwegian context. The 2022 Student Survey shows that many students are in paid employment alongside their studies, which leaves them with less time to study (36). 

Two of the success criteria for effective learning in this teaching model indicate that students’ pre-class preparation must be closely aligned with the work undertaken during sessions with their supervisor or facilitator (4, 15).

The flipped classroom model provides health science students with more opportunities for practical skills training during in-person sessions. This enables them to deepen their learning through collaborative learning by linking theory with practical skills. A coherent and well-aligned learning design is pivotal to this approach (23), requiring educators to possess both pedagogical expertise and the digital proficiency necessary to develop blended learning environments (33). 

Thus, having access to learning-enhancing resources combined with traditional teaching methods can improve students’ understanding and enhance their professional competence (41). This teaching method can also increase social interaction between students and educators (42).

Implications for health science education

In the context of education policy guidelines for digital learning, regulatory requirements and the competency demands for future health care, as well as research in health science education, our OoR strengthens the evidence base regarding the characteristics of blended learning designs and their impact on student learning. Meta-analyses in particular highlight the potential of the flipped classroom model.

Our OoR identifies key factors that can inform the development of guidelines and initiatives for determining when, how and where digital learning is most appropriate. In addition, it highlights factors that could be important for creating a framework to make digital learning more effective. Studies also indicate that digital learning can be cost-effective when it enables students to gain more practical experience and engage in collaborative and individual exploration of various scenarios (33). 

However, there also appears to be a need to further investigate the extent to which digital technology should be implemented in teaching and the potential methods of application (10, 36). Nevertheless, we believe that blended learning is here to stay, as digital technologies such as VR offer learning experiences that are difficult to replicate in traditional teaching settings, including clinical skills, laboratory exercises, or the use of simulation equipment (32).

Blended learning can therefore help bridge the gap between theory and practice while providing valuable practical training amid a shortage of clinical placements (43). This study can serve as a foundation for further dialogue on how immersive learning environments can help prepare students for professional practice, and in which contexts VR/AR technologies could potentially replace parts of clinical training.

Strengths and limitations of the study

The strength of this OoR lies in our use of a recognised methodology for such studies (22), as well as our comprehensive literature search. Another strength is the methodological quality of the reviews included, which ranges from moderate to good. This means that authors have mitigated systematic errors, thereby supporting the credibility of the findings.

Very few of the individual studies forming the evidence base for the five reviews are included in reviews with similar populations (Appendix 4 – in Norwegian), indicating that the evidence base has minimal overlap. This could be due to differences in inclusion criteria, terminology and the databases searched (23, 26–29). Before further reviews are conducted, new well-controlled trials are needed to investigate the long-term effects of blended learning. 

A limitation of the literature search is that we did not search specifically for nursing students. Nonetheless, the search yielded some studies that included nursing students. However, the literature search was primarily targeted toward physiotherapy and occupational therapy students. Our search may therefore have failed to capture all reviews covering the effects of blended learning for nursing students.

A limitation of the OoR method is that it involves a tertiary interpretation of the original data, resulting in a significant degree of separation from the primary studies. One consequence of this is that the measures being evaluated are often poorly described, which reduces the transferability of the findings. 

Another limitation of our OoR is the absence of reported effect estimates in the individual studies included in the systematic reviews. This can result in conclusions having to be drawn based solely on whether the authors qualitatively describe the measures as having positive effects.

A third limitation is the risk of publication bias, meaning that individual studies and systematic reviews with statistically significant results are more likely to be published than those with non-statistically significant findings. Our evidence base includes reviews that report effects and no differences between the measures and comparisons from the primary studies included. This could indicate that the risk of selection bias in our OoR is low. Nevertheless, due to the limitations described, our findings must be interpreted with caution. 

Conclusion

Recent systematic reviews support the implementation of blended learning for health science students, particularly through the use of VR technology and the flipped classroom model.
Integrating VR technology into teaching contributes to learning as it improves students’ knowledge development.

The flipped classroom is a promising model that promotes student engagement. However, this approach requires clear descriptions of – and expectations for – the learning activities students are to complete before, during and after the teaching session.

Student satisfaction with blended learning, however, is not consistent. Controlled trials with long-term follow-up are needed to assess the effect of blended learning on skills and general competence, such as managing subject-specific and professional ethical issues.

Acknowledgements

We would like to thank Elisabeth Karlsen, head librarian at OsloMet – Oslo Metropolitan University, for revising and conducting the literature search for us. We also wish to thank Camilla Foss for her valuable comments on the manuscript.

The authors declare no conflicts of interest.

Open access CC BY 4.0

Introduction 

Organ donation is a sensitive issue in medical practice, encompassing both clinical and ethical challenges. The purpose of organ donation is to save lives or improve the recipient’s quality of life, and it can involve organs from living donors or deceased donors following brain or circulatory death. A single organ donor can save up to seven lives, and the demand for organs rises in line with population growth (1).

Current guidelines recommend implementing measures to increase the availability of organs, including training healthcare personnel in the organ donation process and communicating the importance of organ donation to potential donors’ parents (2).

Children awaiting organ transplants experience disproportionately high waiting list mortality compared with adult patients, due to the limited availability of donor organs (3). Cessation of cerebral blood flow is a key criterion for declaring brain death in adults (4). In children under two years of age, however, confirming brain death is challenging because their skulls are soft and can yield to increases in intracranial pressure (5). 

In Norway, there are no tailored guidelines for organ donation from young children (3). Paediatric organ donation presents ethical challenges for healthcare personnel, who must not only inform parents in shock about their child’s critical condition but also raise the question of organ donation (6).

For a child’s organs to be used, their next-of-kin must give consent within a limited time window (7). Parents often do not know what the child would have wanted, although a recent study from the Netherlands found that 75% of adolescents aged 12–16 wish to make their own decisions regarding donation (8).

Intensive care nurses find it challenging to discuss organ donation because they are uncertain about how the patient’s family will react or how doctors will engage with them (9). Many parents experience a surreal situation when their loved one is in a state between life and death. Parents of critically ill children have been shown to experience increased stress and develop post-traumatic stress disorder following intensive care of their child (10).

The responsibilities of intensive care nurses in the organ donation process are extensive and aim to create an environment that promotes organ donation. This includes ensuring that parents receive sufficient information in a supportive setting where questions and concerns can be addressed (11). The information provided should be honest and accurate so that parents can fully understand the situation (4).

Establishing a good relationship with the donor’s family can be challenging, particularly as intensive care nurses are simultaneously managing complex organ-preserving treatment in a setting with all sorts of wires and machines (9). Studies have shown that intensive care nurses find it difficult to derive meaning from the process when they are unable to establish this relationship (9).

The timing of when the question of organ donation is raised appears to be critical to the outcome of the donation decision.   

Previous studies have explored parents’ experiences with paediatric death in intensive care units (12–14). Research also exists on parents’ experiences with organ donation from adult patients (15–17) as well as healthcare personnel’s experiences in supporting parents during the organ donation process (9, 18).

Greater insight into parents’ experiences with paediatric organ donation may help healthcare personnel communicate more effectively about organ donation while providing support for parents in crisis. 

Objective of the study

An initial literature search did not identify any synthesised research of qualitative studies describing parents’ experiences with paediatric organ donation. The objective of this study was therefore to explore and analyse findings from qualitative studies on this subject. 

Method  

Design  

This qualitative systematic literature review followed the methodology described by Aveyard et al. (19), which involves identifying a clear objective, conducting a systematic literature search, critically reviewing and appraising included articles, and synthesising an analysis of the findings. We performed the analysis according to the approach described by Braun and Clarke (20). The study is reported in accordance with the PRISMA checklist (21) (Appendix 1).   

Search strategy

Defined search terms were entered in a Population, Exposure, Outcome (PEO) framework (Table 1). The initial literature search, conducted in CINAHL, Embase and Medline up to 17 January 2024, was supplemented by manual searches in Inspira, the Norwegian Journal of Clinical Nursing, Nordic Nursing Research and Svemed+, which yielded no additional results.

Given the limited number of studies identified, the search terms were validated (Appendix 2 – partly in Norwegian) by a specialist librarian at the University of Oslo Library, and a second literature search was conducted on 4 March 2025, this time including PsycINFO (Appendix 3 – partly in Norwegian).

Selecting relevant articles  

The inclusion and exclusion criteria are presented in Table 2. We included primary studies employing qualitative methods, as well as mixed-methods studies where the qualitative component was clearly reported. Studies including parents of both children and adults were excluded unless the child participants were explicitly defined. No restrictions were placed on publication year, as no previous systematic reviews on this topic were identified.

The literature search yielded a total of 1239 articles after duplicates were removed, which were screened using the Rayyan tool. The first and third authors conducted a blinded review of titles and abstracts. Following unblinding, 47 articles were read in full and reassessed, ultimately resulting in the inclusion of 10 articles in the study (Figure 1). 

Quality assessment

Each article included was critically appraised using the Critical Appraisal Skills Programme (CASP) checklist (22). The checklist for qualitative research was selected as it provides a clear and systematic framework for critical appraisal, guiding researchers through the process with structured questions. Responses to the checklist items were recorded as ‘Yes’, ‘No’, or ‘Uncertain’. All studies were deemed to be of moderate to high quality (Table 3). 

Thematic analysis   

Data were analysed using thematic analysis in accordance with the principles outlined by Braun and Clarke (20). An inductive, interpretive approach was employed with the aim of generating novel overarching themes from the findings of the included studies. This method acknowledges the researcher’s role in interpreting the data while maintaining a systematic, consensus-based coding process.

The analysis was a six-step process: (1) repeated reading to achieve familiarity with the material; (2) independent inductive coding by the first and second authors, followed by discussion and refinement; (3) clustering of codes into preliminary themes, reviewed against the study objectives and discussed with the third author; (4) consolidation of themes using mind maps to ensure consistency with the codes and dataset; (5) iterative review and refinement of themes to ensure precise thematic representation; and (6) reporting of findings in the context of existing literature. We conducted the analysis manually, using Post-it notes to visually organise codes and facilitate theme development. 

All authors are intensive care nurses with clinical experience in organ donation. We discussed and reflected together on the development of themes, with our prior knowledge informing the final consolidated findings.

The analysis incorporated elements of reflexive thematic analysis, as described by Braun and Clarke (23), recognising the researcher’s active role in interpretation. Meanwhile, systematic procedures were followed to identify patterns in the data and ensure rigor and reliability in the analytical process.

Results 

Description of the studies included  

The ten studies included were published between 1997 and 2023, with three conducted in Greece (24–26), and one each in England (27), Brazil (28), Denmark (29) and Switzerland (30), as well as three in the United States (31–33). Across studies, the total sample comprised 178 family members. Eight studies (24–31) used semi-structured interviews with parents, conducted individually or in couples, while two employed focus group interviews (27, 33).

One study combined questionnaires and telephone interviews, with only the qualitative component included in this review (32). In two studies, the sample included parents of both children and adult patients, with parents of children under 19 years clearly defined (29, 30). One study also included healthcare personnel in focus groups (27); however, only data from the 24 parents were included in this systematic review. Table 4 provides an overview of the studies included. 

Overall findings

The analysis identified three overarching themes: 1) Parents’ need for support, reassurance and trust in healthcare personnel, 2) Parents’ personal values and value-based preferences, and 3) Parents’ acceptance in the face of death. 

Parents’ need for support, reassurance and trust in healthcare personnel 

Many parents were in shock and struggled to process information (24, 27, 28, 31, 33). Some highlighted the importance of being actively involved in the decision-making (33). Parents reported feeling supported when they were able to ask questions freely and receive clear answers (24, 25, 27, 28, 33).

Interactions with healthcare personnel who were empathetic and compassionate made parents feel supported and validated (24, 25, 27–31, 33). Two studies (25, 26) found that parents who perceived staff as unapproachable or insufficiently communicative about their child’s condition experienced heightened stress and uncertainty.   

Insufficient information and poor communication led to distrust and weakened relationships with healthcare personnel (24, 28). The strained relationships made it more difficult for parents to reach a final decision regarding organ donation (24, 27, 31). Conversely, trust in and a strong connection with dedicated healthcare staff provided comfort in an otherwise extremely challenging situation (24, 27, 30, 31, 33). One quote exemplifies parents’ perception of dedication:

‘Like I say the donor people were there for hours. He was supposed to go home from his shift, but he said I’m not leaving you; I’m staying. Then he had to phone and get childcare or something and phone his wife and say he wouldn’t be home’ (27, p. 839).

Poorly managed care of a child made it difficult for parents to find meaning in and come to terms with their death (24–27, 31). Some parents felt pressured into make decisions they neither fully agreed with nor understood (24, 28, 30).

Some parents felt that healthcare personnel’s primary focus was on withdrawing treatment, while others were sceptical of the hospital’s intentions regarding organ donation (24, 26, 31). Parents needed to be reassured that their child would be treated with respect throughout the organ retrieval process (26, 27). 

Parents’ personal values and value-based preferences

Many parents found meaning in organ donation, in the sense that their child could ‘live on’ in others (24–28, 31, 32). Several consented to organ donation because they considered it ‘the right thing to do’. In a hypothetical reverse scenario, where it was their child in need of a transplant, these parents would have wanted other parents to consent to donation (24, 25, 27, 31, 32).

Some parents viewed donation as a way to transform the tragedy of their child’s death into something meaningful (29, 32, 33), while others based their decision on what they believed the child would have wanted (24, 26, 27, 31).

One reason for declining donation was the desire to spend as much time as possible with the child up until their last breath (27, 32). Parents also wished to prevent further distress to their already seriously injured child and to give them a peaceful death (24, 27, 28, 31, 32). The following quote illustrates parents’ experience of the intensive care stay: 

‘Yes, thinking back I don’t think I would have agreed to donation, and maybe someone somewhere assessed this for me, but I don’t think I would have coped with someone asking me that at that stage because we’d been through a rollercoaster of eight weeks’ (27, p. 839).    

Family, friends and healthcare personnel played a crucial role in the decision-making process by reassuring parents about their choice (24). Some declined donation due to religious beliefs or uncertainty about their religion’s position, while others consented because donation was considered a virtuous act in their religion (24, 26, 31). Religion was also considered a source of reassurance that their child would be at peace (25).

Parents’ acceptance in the face of death 

Parents who felt supported and were able to stay with the child and say a proper goodbye found it easier to give the child a dignified end (25). Acceptance of the child’s irreversible condition also make it easier to consent to organ donation (24, 29).

Some parents described how their hope for survival shifted to a hope that the dying process would be swift, sparing the child from ‘something worse’ (29). The parents of an 18-year-old boy expressed this as follows:

‘So I had found out that if he survived this, he would be placed at our nursing home in the section for brain-damaged patients. And I must admit that I did not wish that. His big dream was to become a professional soldier. And I just felt that if he survives this, he would never forgive me for letting him survive’ (29, p. 384).

Several parents in this study expressed that it was easier to accept their child’s death knowing it allowed others to live, rather than having them survive in a vegetative state devoid of dignity.   

Parents who were unable to come to terms with the child’s condition due to their own crisis often clung to the hope of a miracle until the very end (24–26, 28, 32), as illustrated by the following: ‘Even though there was no hope whatsoever, up until the very last moment somewhere inside me there was still hope, since her heart was still beating’ (26, p. 220).

Although parents regarded organ donation as a virtuous act, some did not wish for their child to donate (24). They found their situation unbearable and did not want their child to contribute to someone else’s joy. Some were reluctant to make the decision that would end their child’s life (24, 26, 30).

Discussion

The main findings of this systematic review indicate that parents’ experiences of paediatric organ donation are shaped by their personal values, the degree to which they feel supported and respected by healthcare personnel, and whether they are able to find meaning in the donation.

Parents require support and compassionate care while striving to make decisions in line with what they believe the child would have wished.    

Compassionate care and time impact on parents’ sense of being supported

The study indicates that parents who felt well supported and informed found the situation less distressing. Insufficient information and lack of support made the final decision regarding organ donation more difficult. Previous research has shown that parents in shock struggle to comprehend information and make important decisions about their critically ill child (34).

This reflects the emotionally demanding circumstances in which they find themselves, where they need time and compassionate care to make sense of the critical situation. Adequate information and a good relationship with healthcare personnel are crucial and can substantially impact on parents’ experiences of their child’s intensive care (4). 

When organ donation is being considered, parents need tailored information about what the process entails. Choosing the right words is crucial (7). Individuals in crisis need support, human connection, and someone with whom they can share difficult thoughts. Effective communication with healthcare personnel is essential for parents to manage their emotional responses and cope with the situation (4).

Previous research has shown that continuity of the care team and honesty are key to fostering trust and a sense of being supported (35). This highlights the importance of strengthening communication and the relationship between intensive care nurses and parents to ensure that parents feel heard, respected and involved in the decisions about their child. This can help parents navigate the critical situation more effectively and feel better supported. Studies indicate that parents’ satisfaction and positive experiences during their child’s stay in intensive care are associated with consent to organ donation (36). 

The child’s wishes and support from others are important in the decision-making

This study indicates that parents’ motivation to consent to organ donation may stem from a desire for a part of their child to ‘live on’, helping others and creating meaning in an otherwise tragic situation. In some cases, the hope for survival can give way to acceptance of death when the option is a ‘life without dignity’ for their child. Under such circumstances, the idea that the child’s death could give life to others may be considered a better alternative. 

Reasons for declining organ donation vary, including the wish to spend more time with the child or to ensure a peaceful death. Time, respect and the presence of healthcare personnel are important for parents (37).

Consent to organ donation is a complex process. Parents often need to make decisions based on assumptions about what their child would have wanted. The subject of organ donation is seldom discussed with children in advance, unlike in the case of adults. 

An online Dutch survey investigating the views of children aged 12–16 years on organ donation found that 75% of respondents wanted to make their own decision about donation (8). Although fewer than half had discussed the topic at home more than once, 66% stated they were willing to donate. Such a profound decision can place a considerable emotional burden on parents.

These findings highlight the importance of providing parents with information that facilitates open discussions about organ donation, in line with recommendations from the Norwegian Organ Donation Foundation (Stiftelsen organdonasjon). Research on adult organ donation suggests that parents seek to honour the patient’s wishes (13) while finding comfort in knowing that their loss has brought hope and joy to another family (37).

Intensive care nurses play a key role in facilitating open dialogue, helping parents to reflect on the child’s values even when these have not been explicitly expressed. Such conversations provide an opportunity to acknowledge parents as a key resource and to guide and support them throughout the process (38).

Parents face multiple challenges and dilemmas during the decision-making process, and our findings suggest that those with a strong support network are better able to make considered decisions regarding organ donation. This is consistent with previous research showing that the support available to parents when their child is in intensive care is critical to how they deal with the situation (39).

When healthcare personnel facilitate family involvement, parents report feeling more engaged in the child’s care and in the decision-making (13). In addition to providing compassionate care to parents during a child’s critical illness, intensive care nurses are responsible for facilitating parents’ access to both personal networks and hospital support services (38). 

Trust and acceptance enable parents to let go

Our findings indicate that allowing parents to stay with the child and to have a meaningful farewell before organ donation can aid the grieving process. Intensive care nurses play a crucial role in facilitating this, ensuring that the child’s final moments take place in a family-centred environment (38). A dignified farewell prior to organ retrieval can help parents accept the situation and start grieving (40).

For some parents, religious beliefs provided reassurance when coming to terms with organ donation, while others declined due to their faith or uncertainty about their religion’s position. Similar findings have been reported in other studies (40), highlighting the importance of acknowledging the complexity of the process and providing support regardless of parents’ religious beliefs.

Acceptance of the child’s irreversible condition is a key factor in consenting to donation. Parents who experience denial or cling to hope for their child’s recovery can find decision-making more difficult. A literature review indicates that when parents’ views on organ donation differ, clear information and support help to reassure them in the decision-making process (14).

Effective communication by healthcare personnel is essential for building trust with parents so that they can rely on the information provided and come to terms with the situation (4).   

Strengths and limitations of the study  

One of the strengths of this systematic literature review is its adherence to established methodological guidelines (19, 20) for study execution and data analysis. Blinded screening and the use of a standardised checklist reduced selection bias and ensured the quality of the studies included.

Reflection and discussion among the authors, combined with rigorous adherence to the methodology, may have further strengthened the credibility of the review, despite our limited experience with this approach. Limitations include the relatively small number of studies and their diverse cultural contexts, which may restrict the generalisability of the findings. 

Conclusion

This systematic review indicates that parents can find organ donation both meaningful and emotionally distressing, depending on their personal values, the degree to which they feel supported and respected by healthcare personnel, and whether they find meaning in the donation. Parents need compassionate care and information. They also need their values and wishes to be respected.

Although parents rarely know what their child would have wanted, they can find comfort in the notion that a part of their child lives on. Intensive care nurses can foster a good relationship with parents in this extremely vulnerable situation by communicating in a manner that acknowledges the complexity of their emotions and needs.

Implications for clinical practice and future research   

Our study highlights the importance of facilitating open discussions about organ donation between children and their parents. The subject could, for example, be addressed in schools and through social media. We identified a need for further research on parents’ experiences with paediatric organ donation, particularly in Scandinavian contexts.

Cultural differences are only briefly addressed in this article, but they appear to be a complex and important issue that warrants further investigation. It is also important to establish clear clinical guidelines on how to broach the subject of organ donation with parents. Our study has generated knowledge that can inform the development of such guidelines. 

Acknowledgements

We would like to thank Special Librarian Hilde Strømme at the University of Oslo for quality-assuring the updated systematic literature search.

The authors declare no conflicts of interest.

Open access CC BY 4.0

Introduction 

The home nursing service is currently facing major challenges. The combination of increasing care needs among service users, a broader range of patient groups and shorter hospital stays are putting greater demands on nurses’ expertise and the organisation of services (1, 2). The current organisational model in the home nursing service often requires service users to interact with many unfamiliar staff members (3).

Seven out of ten nurses in home nursing care report performing tasks that are not defined as nursing tasks on a daily basis (4, 5). Taken together, these findings suggest that nurses’ expertise is not being fully utilised, indicating the need for the service to find effective organisational solutions (6).

In recent years, a team-based organisational structure has been a focus area in the development of home nursing services (7–10). This organisational model focuses on expertise and resources and can help promote coordination and efficient organisation (7, 11).

In nursing teams, tasks for each patient are divided between staff members based on their expertise, and transferred from, for example, a registered nurse to a nursing associate (11, 12). Several municipalities have developed different organisational models in recent years to improve service quality, including health teams in Bergen and nursing teams in Tromsø (9, 10). 

Objective of the study

This study focuses on the ‘Nursing Team’ project, which was initiated in 2020 in a municipality in southern Norway and concluded in the autumn of 2021. The study is based on experiences from the project period. Research is limited on the experiences of nurses working in home nursing care teams. The objective of this study was therefore to gain a deeper understanding of these experiences.

Method

The study employed a qualitative design with a phenomenological-hermeneutic approach. This approach was chosen to gain a deeper understanding of the participants’ subjective experiences (13). We used the COREQ checklist (14) to ensure the quality of the study's execution and reporting. 

Organisation of nursing teams in the project

Home nursing services are organised into different geographical zones. The nursing team in this project consisted of nurses from two different zones working from the same premises. The nurses from the two zones worked together in the nursing team during the day and evening shifts. The nursing associates and assistants in each zone had two dedicated zone teams, with their own office, separate from the nursing team.

The nurses in the team mainly performed tasks that required the specific expertise of nurses, defined nursing tasks, such as complex wound care, medication dosing and administering antibiotics to patients at home. The zone teams carried out other types of tasks, such as personal care, showering and meal preparation.

Service users who required follow-up from both the nursing team, such as medication dosing, and the zone team, such as showering, would receive visits from both a nurse and a nursing associate or assistant at different times.

As part of the project, a shared medical secretary was also appointed to relieve the nurses of certain administrative tasks, including ordering medications and supplies, renewing prescriptions and dealing with certain messages from the electronic nurse messaging service. The nursing team also included two different department managers. After the project period ended, the two zones chose to return to the previous organisational structure. As a result, the nursing team was dissolved. 

Recruitment and sample 

To recruit participants, we emailed the two department managers responsible for the nursing team. They then shared information about the study with potential participants in the relevant zones. The inclusion criteria for the study were nurses employed in home nursing care who were part of the nursing team during the project period.

A total of seven women and one man, aged between 28 and 60 years, were included in the study. Experience in home nursing care ranged from two to twelve years. 

Data collection

We collected the data in eight individual semi-structured interviews with the nurses who were part of the nursing team during the project period. Four participants from each of the two zones took part. The first author conducted the interviews.

The main themes in the interview guide focused on the nurses’ experiences of working in the nursing team, how things were before, the differences between working in the zone team and the nursing team, as well as the opportunities and challenges, and service user follow-up in the team.

The first author made voice recordings of the interviews and transcribed them. The interviews lasted an average of 30 minutes and were conducted a couple of months after the end of the project.

Analysis

We analysed the interviews using systematic text condensation, inspired by Malterud (13). In the first step, we carefully read through the voice recording transcriptions to form an overall impression, and noted 13 preliminary themes.

In step two, we used the analysis tool NVivo to review all the interviews again and identified meaning units. We then sorted parts of the text that could illuminate the research question and then systematically categorised and coded the meaning units. In the final step, we created code groups. 

In step three, we abstracted the content of the code groups, where twelve subcategories were formed. In the fourth step, the fragmented text pieces from the previous steps were condensed and recontextualised, and the subcategories were divided into three main categories.

Three main themes were identified in the analysis. Table 1 provides an example of the steps involved in the analysis.

Ethical considerations

The Norwegian Centre for Research Data (now called Sikt – the Norwegian Agency for Shared Services in Education and Research) was notified of the project (reference number 231545). We obtained written consent from the participants. They consented to the interview being recorded, and were assured that the data would be securely stored afterwards. We used fictional names, and place names are not specific. The study is in line with the recommendations of the Declaration of Helsinki (15).

Results 

We identified three main themes: 1) Task shifting meant predictability, but increased responsibility, 2) Clearly defining nursing tasks led to better utilisation of expertise but also fragmented nursing care services, and 3) Lack of leadership and organisation created challenges in collaboration. Figure 1 illustrates the main categories and corresponding subcategories.

Task shifting meant predictability, but increased responsibility 

Task shifting in the nursing team led to predictability in the daily work routine, but it also increased the nurses’ burden of responsibility. Task shifting entailed transferring tasks from nurses with more advanced expertise to other healthcare personnel within the zone team. This meant that several staff could be allocated tasks for each service user.

Delegating tasks that could be performed by other categories of personnel led to more nursing-oriented work lists. It also meant more predictability as the nursing team was assigned the same service users over several days. 

Task shifting also involved appointing a medical secretary, which further increased predictability for the nurses and provided them with administrative support. The medical secretary relieved the nurses of certain administrative tasks and answered the on-call phone. As a result, the participants felt they could concentrate more on the service users and have fewer interruptions. One of the participants described it as follows:

‘I think it’s more professional when you have someone who answers the phone calmly and can quickly find things on the computer, instead of a nurse who’s in the middle of showering a patient. Who can listen. And then you might say: “Oh, I’ll need to call you back.” And then you forget to call them back when there are so many phone calls.’ (Participant 3)

Although task shifting meant more predictability for the nurses, many experienced a greater burden of responsibility and workload. Service users who needed nursing care were grouped into fewer work lists. As a result, the nurses in the nursing team were more isolated, with fewer opportunities to delegate nursing-related tasks. One informant said the following:

‘The work lists are more focused on nursing tasks now. It’s been more hectic. Fuller lists. And there are always so many extra messages. And things we have to do outside the list. New service users. It feels like there’s been more stress and it’s busier on the lists during that period.’ (Participant 2)

In addition to having to follow up the service users on their own work list, they also had to manage administrative tasks both in the nursing team and the zone team. This increased the burden of responsibility and created stressful working days.

Clearly defining nursing tasks led to better utilisation of expertise but also fragmented nursing care services

Many of the participants felt that the organisation of the nursing team led to better utilisation of their expertise, as they only performed defined nursing tasks. Participants also experienced more repetition as they were performing the same procedures frequently. This boosted their confidence in carrying out these tasks. Such repetition could improve both the quality and continuity of care. One informant illustrated this as follows:

‘I prefer working in the team. With more concentrated tasks, you learn more, get more repetition, more training. It brings more continuity. And the quality improves because you perform procedures more often. They’ve tried to group together expertise on the nursing lists, so that nurses don’t spend loads of time on basic care, compression stockings, and things that can be done by others. That’s been good.’ (Participant 1)

Although clearly defining nursing tasks led to better utilisation of expertise, it also made for a more fragmented nursing care service. One informant said the following:

‘The way the lists were before, you were more involved in the personal care. With that patient. So you get to see the whole picture. That was something that perhaps raised some concerns when we started the nursing team project, because there’s been so much focus on comprehensive care and seeing the whole picture. And then, suddenly, you’re supposed to forget about that and just go in and out to do what you’re supposed to.’ (Participant 5)

This fragmentation was particularly evident in the follow-up of service users with complex and extensive needs. The participants illustrated this by describing a situation from their working day: service users who needed help with both showering and medication administration received two separate visits instead of one – first from the zone team for help with showering, and then from the nursing team for help with medication. Consequently, visits to some service users by the nurses in the team were very short, leading to less comprehensive and less patient-centred nursing care.

Lack of leadership and organisation created challenges in collaboration

The participants described a lack of leadership and organisation of the nursing team. They reported a lack of preparations, routines and information prior to the launch of the project. Several felt that they were not sufficiently involved from the beginning, and as a result, the project did not gain strong support among the staff.

The participants also described varying follow-up by the department managers in the two zones. Management of the project differed, as did engagement and attitudes. This, in turn, impacted on the participants’ attitudes to the nursing team. Several participants expressed resistance to working in the nursing team and were critical of the change. One of them described it as follows: 

‘I feel like I noticed quite a range of attitudes among people about working in a team. Some were really negative and felt it was a waste of time and a nonsense to be there.’ (Participant 8)

In addition to the participants experiencing a lack of preparation and leadership, there was also no provision for a shared workspace. Several of the participants would have liked a common medication room, zone office and collaboration on mutual patients. Each nursing team covered its own geographic area within the municipality, which resulted in long distances between the zone offices. One participant said the following:

‘Because that’s what I thought when we were selected for this project, that we were going to work across teams. But we’ve hardly done that at all. So I think we would have gotten much more out of it if we’d had a mixture of service users. And then I think collaboration would’ve been easier.’ (Participant 1)

Despite the introduction of the nursing team model, the original organisation of the zone offices was maintained. The nursing team only spent time together when giving a joint report before their shift started. The separation of the nursing team and the zone team meant that participants lost the sense of the overall picture and contact with their colleagues. 

The two zones within the team also had no work lists with mutual service users, which led to the participants losing any sense of ownership and connection to the service users in the other zone. This affected the collaboration within the team. 

Discussion

The objective of this study was to gain a deeper understanding of nurses’ experiences of working in a home nursing care team. 

Task shifting meant predictability, but increased responsibility 

The findings of the study show that task shifting in the nursing team led to greater predictability in the daily work. Tasks were transferred, for example, from registered nurses to nursing associates, and the work lists had a greater focus on nursing-related tasks. The correct allocation of tasks can help maintain and improve the quality of services, as well as increase employee efficiency and job satisfaction (7).

In this study, appointing a medical secretary helped relieve nurses of administrative tasks. In healthcare organisations, administrative work is often invisible, despite its significant impact on the quality of services (16). Shortages of administrative personnel can lead to heavier workloads (17). 

Our study shows that task shifting also led to an increased burden of responsibility due to fewer work lists and nursing-related tasks that could not be delegated. In addition, the nurses worked more independently. Consequently, participants had a more stressful working day.

According to Gjevjon (12), the allocation of responsibilities and tasks must be deliberate and structured. If healthcare personnel who are assigned new tasks lack the necessary expertise, they are likely to feel uncertain and experience a greater burden of responsibility. Their job satisfaction may also be diminished.

Research shows that successful task shifting requires close collaboration between all team members. Additionally, patient care must be coordinated and based on patient needs. Those involved should be given more decision-making powers, along with training and more support. An effective organisational system is also essential (18).

Clearly defining nursing tasks led to better utilisation of expertise but also fragmented nursing care services

Findings from the study show that clearly defining nursing tasks led to better utilisation of expertise, which in turn provided a stronger foundation for quality and continuity in the delivery of nursing care. Effective use of nursing expertise leads to a better provision for service users and a higher level of job satisfaction for staff (19). Having clearly defined nursing tasks can also help ensure better primary care for seriously ill patients discharged from the specialist health service (14).

However, Melby et al. (20) point out that utilising nursing expertise can also present challenges. If nurses are only assigned nursing tasks, it can reduce their contact with patients (20). Our study supports this finding. 

In the nursing team, care was primarily guided by staff’s expertise rather than need. As a result, the nursing care service became more fragmented, which can challenge the ideal of comprehensive nursing (21). One example was when service users with complex needs received help from both the zone team and the nursing team. This required them to interact with many different healthcare personnel, which could be considered a lack of continuity in care providers. This can impact on service users’ dignity, sense of security and patient safety (3).

In addition, nurses may miss important observations (20). Assisting someone with personal care involves much more than just performing a practical task – it includes relationship-building, assessing needs and observing the person’s condition (22). It is important to critically reflect on this kind of task-oriented approach, as seen in the nursing team, and to acknowledge the complexity and comprehensive responsibility inherent in nursing (12).

Lack of leadership and organisation created challenges in collaboration

The study shows that the two zones within the nursing team had problems collaborating with each other, partly due to a lack of organisation. Optimal teamwork and successful collaboration are dependent on several essential factors. The team must share a common vision and have the same goals for patient care (23).

When staff in a team work in isolation, without collaborating, they are less likely to achieve shared goals (24). Problems are more easily solved when the team shares responsibility. Collaboration across different parts of the team makes it more likely that shared goals will be reached (24).

The attitudes and level of engagement of managers impacted on the participants’ approach to the project in our study. Leadership plays an important role for nurses working together in a team (25), and a lack of interest in or willingness to commit to change can act as a barrier to successful implementation (26). Employees can be influenced by the attitudes of others, which can shape their own approach to the change (27).

The participants in our study also reported a lack of information and said they were not very involved in the initial phase of the project. Successful organisational change requires sufficient information for, and support from, employees. Furthermore, staff must be involved at project start-up (25, 28). According to Robinson et al. (27), active involvement can also give employees a better understanding of the change initiative.

This study contributes to the understanding of how the home nursing service can organise nursing teams, but also shows that several factors may have contributed to the project being discontinued. For a nursing team to function effectively in practice, the following prerequisites should be in place: raising awareness of and clearly defining the division of responsibilities and tasks for both staff and management in the home nursing service, as well as ensuring comprehensive care by utilising nursing expertise to meet the needs of service users.

To strengthen collaboration within a nursing team, appropriate organisation is essential. Additionally, management must actively involve employees and ensure they support the project.

Strengths and limitations of the study

The authors are nurses with master’s and doctoral degrees. We have experience from hospitals and the home nursing service, but currently work as nursing instructors at a university. The first author has previous experience from working in a nursing team. We have reflected on our own role as former nurses in all stages of the research process and included reflective elements as part of the research method.

A strength of the study is that the sample included a varied range of ages and experiences. However, there was only one male participant in the study. We believe that the interviews provided rich material with diverse experiences and perspectives. 

Despite the small sample, data saturation was achieved. Although sample size can affect the transferability of the study, we believe the results may be transferable to similar contexts.

A limitation of the study may be that the interviews were conducted during a transition phase, when participants were shifting back to the original organisational structure after having worked together as part of a nursing team. Many of the nurses thus said it had been some time since they had worked according to the project’s methods. 

Conclusion 

This study provides a better understanding of nurses’ experiences with home nursing care teams. The nursing team model entailed a predictable allocation of tasks but also resulted in a greater burden of responsibility for the nurses in the team. With clearly defined nursing tasks, expertise was better utilised, but this led to fragmented nursing care services. As a result, patient contact and the nurses’ ability to provide comprehensive care were adversely affected.

Additionally, collaboration within the team was hindered by a lack of leadership and organisation. Further research on this topic is needed to elicit additional perspectives, including those of managers, nursing associates, and service users and their families.

Acknowledgements

We would like to thank the participants in the study for their time and for sharing their experiences with us. 

The authors declare no conflicts of interest.

Open access CC BY 4.0

Introduction

Employment is more than a source of income; it is a fundamental component of personal identity and social integration for most people of working age (1). Absence from work can have considerable adverse effects. Research shows that patients on long-term sick leave are less likely to return to work (2).

In this context, job-related self-efficacy is a critical factor for successfully returning to work (3). Sick leave also represents a substantial economic burden on society. Recent figures from the Norwegian Labour and Welfare Administration (NAV) show that the costs associated with sick leave in Norway amounted to NOK 45.8 billion in 2023 (4).

The Norwegian Register for Cardiac Surgery reports a reduction in the number of patients undergoing open-heart surgery in Norway since 2004. Between 2012 and 2023, the annual number fell from over 4000 to less than 2700 (5). 

Improved pharmacotherapy, along with an increase in invasive procedures such as percutaneous coronary intervention (PCI), may help explain these figures. The most severely ill heart patients still undergo open-heart surgery. These procedures naturally involve hospitalisation, sick leave and often some form of rehabilitation.

International research has shown that patients undergoing heart surgery after 2000 tend to have a higher disease burden, including reduced physical capacity and impaired ventricular function. Some patients also return for a second heart operation (6).

Comorbidities such as diabetes, hypertension and kidney failure, as well as perioperative complications like kidney failure, stroke, bleeding and infections, can make it more challenging for heart surgery patients to return to work, or can prolong the time it takes to do so (5). 

According to a 2022 literature review, heart surgery patients internationally had an average sick leave of 30 weeks. About 34% never returned to work (7).

A recent Norwegian study found that the average sick leave after heart surgery was between five and six months. However, the timing of patients’ return to work varied. The study showed that 30% of patients resumed work within three months, 33% after three to six months, 18% after six to nine months, and 19% after nine to twelve months (8).

To understand patients and help them return to work, it is important to assess their job-related self-efficacy. The concept of self-efficacy was introduced by psychologist Albert Bandura in 1977 (9). 

Bandura believed that self-efficacy is a crucial psychological factor in the transition from illness to normal everyday life. Patients with a high level of self-efficacy are more likely to believe in their ability to manage job-related tasks after surgery. The theory highlights the individual’s expectations regarding their capacity to cope with different life phases, such as returning to daily routines or the workplace following illness (10). 

Objective of the study

The objective of the study was to validate the Norwegian version of the 19-item Return-to-Work Self-Efficacy (RTWSE-19) questionnaire for heart surgery patients of working age. 

Method

The study was conducted at Haukeland University Hospital in Bergen, with supplementary data obtained from the Norwegian Register for Cardiac Surgery. Patients completed RTWSE-19 before surgery and three months postoperatively. Reliability and construct validity were assessed, including known-groups validity using the NYHA classification of heart failure based on functional status.

NYHA class I denotes heart failure with no limitation of physical activity; class II indicates heart failure with symptoms during ordinary physical activity; class III patients are asymptomatic at rest but experience symptoms with activities of daily living; and class IV is characterised by symptoms at rest (11).

Face validity was evaluated by the last author, former heart surgery patients and healthcare personnel working daily with this patient group, as recommended by Polit and Beck (12). The study followed the COSMIN guidelines for the validation of self-report instruments (13). 

Convergent validity was assessed based on correlation with patients’ self-reported health. The central question we asked was: ‘All in all, how would you rate your own health?’ Responses were according to a five-point Likert scale, where 1 indicated ‘Very good’ and 5 ‘Very poor’. We also assessed sensitivity in relation to return to work three months after surgery.

Responsiveness was tested by comparing changes in work participation and self-rated health before and after surgery. Sensitivity versus specificity was analysed using ROC analysis to determine whether the questionnaire items correctly identified relevant patients while excluding non-relevant ones. AUC values exceeding 0.6 were considered moderate (12).

We hypothesised that RTWSE-19 would capture changes in job-related self-efficacy, both in terms of responsiveness and sensitivity, as a result of patients’ return to work after surgery. 

Sample

The inclusion criteria in the study were patients of working age, from 18 to 65 years, undergoing open-heart surgery for the first time (Table 1). Only elective patients were included. Emergency patients and those on the urgent waiting list were excluded from the study.

The sample consisted of 104 patients, of whom 89 responded three months after surgery. Participants were recruited from Haukeland University Hospital, which is one of four cardiac units in Norway.

According to an information sheet from one of Norway’s cardiac units, heart surgery patients stays in hospital for four to eight days on average after surgery and require four to eight weeks of sick leave. This is dependent on age, extent of postoperative rehabilitation and type of employment (14). 

Data collection

The data were collected in 2022, with respondents completing the self-report questionnaire electronically. Information was also obtained from patients’ medical records and the Norwegian Register for Cardiac Surgery. Variables collected included type of surgery, demographics, sick leave status, NYHA score, self-rated health and patients’ responses to RTWSE-19.

RTWSE-19

RTWSE-19 is a self-report questionnaire on job-related self-efficacy, which was developed in several stages by Shaw et al. The first version consisted of 28 questions, derived from qualitative research. This questionnaire was later reduced to 19 questions (15).

The instrument has been validated and culturally adapted for several different patient groups in Scandinavia (16–19). RTWSE-19 was translated into Norwegian in a 2019 study involving patients with musculoskeletal disorders (16). 

The translation was in accordance with the guidelines described by Beaton et al. (20), with minor conceptual adjustments to better suit the Norwegian cultural context. However, the Norwegian version has not previously been tested for use on heart surgery patients.

The questionnaire consists of 19 questions divided into three domains: Domain 1: ‘Meeting job demands’ (7 questions); Domain 2: ‘Task modification’ (7 questions); Domain 3: ‘Communicating needs to others’ (5 questions) (14, 20). Each question has ten response options, ranging from ‘Not at all confident’ to ‘Fully confident.’ A high score indicates greater job-related self-efficacy. 

Analysis

We used descriptive statistics to calculate the mean and standard deviation (SD) for continuous variables, as well as frequencies and percentages for categorical variables. Reliability in terms of internal consistency was assessed using Cronbach’s alpha (12).

Differences in RTWSE-19 scores between patients with severe heart failure (NYHA class III–IV) and those with milder heart failure (NYHA class I–II) were analysed using a t-test (21). Spearman’s correlation coefficient (rho) was used to assess convergent validity between RTWSE-19 scores and patients’ self-rated health (21). 

The sensitivity of RTWSE-19 in identifying patients who returned to work was evaluated using an ROC analysis (22). We measured the responsiveness of the instrument by comparing baseline pre-surgery scores with scores three months after surgery to assess significant changes in patients’ self-efficacy (12, 21, 23).

To further evaluate responsiveness, we analysed the relationship between changes in RTWSE scores and changes in employment, i.e. from being employed before surgery to returning to work after surgery (23). All statistical analyses were performed using STATA MP-64, version 18.

Ethics and data protection

The necessary approval for the study was obtained from the Regional Committee for Medical and Health Research Ethics (REK), reference number 208556, and Sikt – the Norwegian Agency for Shared Services in Education and Research was notified of the study, reference number 813388.

The study was conducted in accordance with the Declaration of Helsinki (24), and the data were stored on a secure server with two-factor authentication at Western Norway University of Applied Sciences. Patients provided written consent and could withdraw from the study without giving a reason. 

Results 

The study sample consisted of 104 participants, of whom 80% (n = 83) were men (Table 1). The mean age was 53 years (± 10), ranging from 18 to 65 years. Half of the participants had a higher education. Prior to surgery, 96% of participants were in employment, but 47% were on sick leave at the time of surgery.

A total of 88.5% of participants (n = 92) were in NYHA class I–II. In addition, 68.3% of participants reported their health as good or very good, with a mean score of 2.7 (± 0.7) on the self-rated health question. 

Reliability

Table 2 shows that Cronbach’s alpha indicates high internal consistency for RTWSE-19, reflecting the instrument’s reliability. The overall internal consistency score is Cronbach’s alpha = 0.97 for RTWSE-19 as a whole. Internal consistency for the total score increases to Cronbach’s alpha = 0.98, also in Domain 1 (‘Meeting job demands’) and Domain 3 (‘Communicating needs to others’) after three months. In Domain 2 (‘Task modification’), Cronbach’s alpha decreases from 0.98 to 0.94, as shown in Table 2.

Validity

Face validity confirmed that the questionnaire is relevant for the target population. Testing for convergent validity showed a moderate correlation between RTWSE-19 and self-reported health preoperatively (ρ [correlation coefficient, rho] = 0.37; p < 0.002), which increased to a stronger correlation postoperatively (ρ = 0.55; p < 0.001).

Furthermore, construct validity was tested by comparing RTWSE-19 scores between patients in different NYHA classes. Known-groups validity of RTWSE-19 was examined by comparing scores based on preoperative NYHA classification.

Patients in NYHA class I and II (n = 92) had a significantly higher mean RTWSE-19 score (mean = 7.40, SD = 0.24) compared to patients in NYHA class III and IV (n = 11), who had a mean score of 5.69 (SD = 0.96). The difference between the groups was statistically significant (p = 0.0327), which supports the questionnaire’s ability to distinguish between groups with known differences in functional status. 

Sensitivity

We evaluated the sensitivity and specificity of the questionnaire in relation to patients’ return to work using ROC analysis both before surgery and three months postoperatively. An AUC value of 0.64 illustrates the questionnaire’s ability to distinguish between patients who returned to work and those who did not, based on changes in their scores. 

Responsiveness

To assess the responsiveness of RTWSE-19, we analysed changes in scores from before surgery to three months postoperatively. The mean score showed an increase over this period. Table 3 presents the mean RTWSE-19 scores overall and for each of the three domains.

The total mean score increased from 7.23 (± 0.25) preoperatively to 7.82 (± 0.25) three months later. For the individual domains, mean scores ranged from 6.93 in Domain 1 to 7.85 in Domain 3 before surgery.

Three months after surgery, scores increased in all domains, with values ranging from 7.66 to 7.95. This positive increase across all domains from pre- to post-surgery indicates that RTWSE-19 is effective in capturing changes in patients’ condition over time. 

Discussion

Our analyses indicate that RTWSE-19 measures what it is intended to measure. From a nursing perspective, using RTWSE-19 may be useful for assessing heart surgery patients’ functional status, employment status and return-to-work self-efficacy.

This finding can help optimise the rehabilitation phase and improve the chances of a successful return to work. Employment gives patients a sense of purpose, value, social interaction and financial security, which promotes both mental and physical health (25, 26). 

The findings of our study suggest that job-related self-efficacy may impact on when heart surgery patients return to work after a period of sick leave. This observation is supported by a study by Black et al. (3), which suggests that a patient’s perception of their own ability to manage work tasks and work-related challenges can impact on whether they resume employment. In other words, patients with a high level of job-related self-efficacy are more likely to return to work than those with a lower level (15, 27).

Our study included patients with heart disease who, despite their condition, rated their own health as good. Most had a low NYHA classification (I–II), reported good self-rated health and demonstrated a high level of job-related self-efficacy. The observed high self-efficacy may be attributable to patients undergoing surgery before developing severe heart failure or other complications, which supports recommendations for early intervention to improve prognosis and reduce costs (5).

Early surgical intervention, before patients develop severe and irreversible heart failure, pulmonary hypertension, pulmonary oedema, or other organ failure, results in better health outcomes and reduced treatment costs (5). The average waiting time for elective heart surgery in Norway is 4–24 weeks, depending on the hospital (28).

From a socioeconomic perspective, it is better to avoid long waiting times for surgery, as a faster return to work benefits the patient. Shorter periods of sick leave are beneficial for the patient, society and the employer (29). 

Psychometric properties of RTWSE-19

Reliability, validity, sensitivity and responsiveness are important psychometric properties that indicate an instrument’s quality and support the quality of the information collected (13, 23). This study examined the properties of RTWSE-19 for heart surgery patients in Norway in accordance with the COSMIN guidelines (13).

Internal consistency is an indicator of reliability, which we tested using Cronbach’s alpha, both before surgery and three months postoperatively. Cronbach’s alpha was good both preoperatively and three months postoperatively, indicating that the questionnaire has good internal consistency at all measurement points. In general, a Cronbach’s alpha value above 0.7 is considered acceptable (12). Our results show high internal consistency for both the total RTWSE-19 score and the three domains (Table 2). 

Although high internal consistency is positive for reliability, values above 0.95 may suggest that some questions are redundant (30). This point is also highlighted by Gjengedal et al., who recommend that future studies investigate whether a shortened version of the RTWSE might be more appropriate (17). Cronbach’s alpha was strong in our analysis, which aligns with the Danish version, which scored 0.96 (19).

Although face validity alone is not sufficient to establish good validity, it constitutes considerable strength in the validation process when combined with other validation elements. Professionals and the target group considered the questionnaire to be well-suited for measuring the specified concepts (12, 31). We assessed face validity before initiating the questionnaire survey. 

The study found that patients with a higher NYHA classification (III–IV) scored significantly lower on RTWSE-19 than those with a lower NYHA classification (I–II), indicating good known-groups validity. This finding suggests that RTWSE-19 may be a suitable tool for assessing job-related self-efficacy among heart surgery patients. It also indicates that the severity of heart failure impacts on self-efficacy.

Patients’ job-related self-efficacy showed a strong association with their self-reported health both before and three months after surgery, highlighting the instrument’s convergent validity. The moderate positive correlation between RTWSE-19 and self-reported health preoperatively (ρ = 0.366), which increased to ρ = 0.547 three months postoperatively, suggests that the instrument effectively captures changes over time.

The increase in correlation after surgery indicates that the instrument can reflect patients’ perceived health improvements, as observed after mitral valve surgery, where quality of life had improved considerably three months postoperatively (32).

Responsiveness refers to the RTWSE-19 instrument’s ability to detect and capture relevant changes in patients’ self-efficacy over time. This is reflected in differences in scores before and after heart surgery, indicating that the instrument is able to capture changes in patients’ job-related self-efficacy (12). Sensitivity, meanwhile, relates to the instrument’s accuracy in correctly classifying participants based on their return to work (21, 22).

The AUC indicates how well the instrument identifies patients who actually return to work (sensitivity) while avoiding incorrectly predicting a return for those who do not (specificity) (22). An AUC value of 0.64 means that in 64% of cases, the instrument correctly distinguishes between patients who will return to work and those who will not, based on test results. AUCs between 0.5 and 0.6 are considered low, while more than 0.7 is considered acceptable (22, 33, 34).

Self-efficacy as a predictor of return to work

Several studies have examined self-efficacy in patients with various diagnoses, particularly musculoskeletal disorders, mental health problems and cancer (18, 27, 35). A systematic review from 2018 demonstrated a clear association between return to work and self-efficacy (27). Patients with a high level of self-efficacy are more likely to return to work than those with a lower level (17, 19, 35).

Studies also show that patients who experienced an increase in job-related self-efficacy during the rehabilitation period returned to work sooner than those who did not experience such improvement (27). 

A 1989 US study of patients who had undergone PCI found that self-efficacy – as a psychosocial concept – was the best predictor of return to work, independent of physical factors (36). This finding is supported by the study by Hu et al. (37), which shows that a high level of self-efficacy is key to increasing the likelihood that patients with coronary disease can resume their work tasks and return to work.

A study by Shaw et al. (15) found that patients with an RTWSE score higher than 7.5 before treatment were five times more likely to return to work within three months compared with those who scored less than 7.5.

In our study, the average RTWSE-19 score for heart surgery patients was 7.82. This is higher than in Shaw’s study, which included patients with back pain. This finding may suggest that heart surgery patients consider themselves to be on temporary sick leave during the rehabilitation phase, unlike patients with back pain (15).

Strengths and limitations of the study

One of the main strengths of our study is that we used registry data from the Norwegian Register for Cardiac Surgery, which includes information on NYHA class. Earlier research has shown that coronary and heart valve surgery are the most frequently studied interventions, while other types of cardiac surgery are often underrepresented (7).

A limitation of the study is the sample size of 104 patients, which is too small to perform a reliable exploratory factor analysis. Although guidelines for sample size vary, a minimum of 300 respondents is generally recommended for robust results, and samples exceeding 1000 are considered optimal (12). 

A factor analysis could have been useful to determine whether some questions are redundant or irrelevant for our patient group. We measured a high Cronbach’s alpha, which may indicate that some questions overlap. In our study, only elective coronary, aortic and heart valve operations, as well as combinations of these, were included.

Our respondents were in relatively good health before surgery, with low NYHA scores and self-reported good health. A limitation of the study is that the sample did not include patients undergoing emergency surgery, which may reduce the representativeness for all heart surgery patients. 

Conclusion

This study demonstrates that RTWSE-19 has satisfactory reliability and validity for measuring job-related self-efficacy in heart surgery patients. The questionnaire is logically structured, easy to understand and relevant for patients, making it suitable for use in clinical practice.

The results show that the instrument has good validity and reliability, as well as moderate sensitivity. It may also be useful for doctors, social workers and physiotherapists, in addition to nurses. We believe that job-related self-efficacy, alongside physiological status, is important for the patient’s progress during the rehabilitation phase after heart surgery.

Further research is needed to examine how nurses can actively identify patients who need additional support. Studies should also assess the impact of structured conversations and the integration of RTWSE-19 into the rehabilitation process following heart surgery.

The authors declare no conflicts of interest.

Open access CC BY 4.0

Introduction

Health literacy encompasses the skills required to identify and transform health information into knowledge and action (1). Sufficient health literacy is essential for individuals to manage their own health and follow-up care, as well as to navigate and utilise healthcare services appropriately (2). According to a Norwegian study, one-third of the population has low health literacy, and nearly half have problems with navigational health literacy (3).

The Norwegian government aims to create sustainable and equitable healthcare services that enable self-management (4). Improving the population’s health literacy is a key measure in this work. The strategy for improving health literacy in the population (2) proposes initiatives at both the individual and system level. Individual-level initiatives involve strengthening the population’s health literacy through, for example, tailored information. System-level measures address structural aspects of healthcare services, such as making it easier for service users to navigate healthcare services and make more appropriate use of them (2). 

Measures that healthcare services can implement to enhance organisational health literacy have recently attracted growing attention both nationally and internationally. The World Health Organization (WHO) notes that individuals’ health literacy must be understood in the context of organisational structures and resources that facilitate access to health information and services (5). Health literacy is therefore not merely an individual skill, but the product of an individual’s abilities and the demands and complexity of the healthcare services (6).

Health-literate healthcare services have a high level of organisational health literacy, meaning they make it easier for individuals to find, acquire, understand and use various types of health information and services – digital, verbal and written – to manage their own health (6). 

A pilot test of a self-assessment tool for organisational health literacy at five healthcare institutions in Norway showed that health literacy is often promoted in direct patient contact, but that these measures are rarely systematised through strategies, procedures or guidelines (7).

At several of the healthcare institutions, managers and staff with direct patient contact reported efforts to facilitate contact with, locate and find their way around the healthcare institution, as well as to ensure that health information is easily accessible and suitably adapted. However, this pilot study did not include service users’ experiences. One of the criteria for ensuring health-literate healthcare services is to involve service users. It is therefore important to capture their experiences. 

Organisational health literacy entails healthcare personnel being sensitive to service users’ health literacy and being able to adapt their communication accordingly (8, 9). Ernstmann et al. (10) have developed a questionnaire to measure health literacy-sensitive communication from the patient’s perspective. However, the questionnaire does not cover aspects such as navigating the healthcare services or integrating health literacy into the structures and processes of healthcare institutions. Based on current knowledge, there is otherwise limited understanding of patients’ and service users’ perspectives on the health literacy responsiveness of healthcare services. 

Objective of the study

The objective of the study was to describe service users’ experiences of organisational health literacy in healthcare services.

Method

The study has a descriptive qualitative design, with data collected in focus group interviews. The article follows reporting standards for qualitative research (11).

Interview guide

We developed the interview guide based on standards 4, 5 and 6 of the International Self-Assessment Tool for Organizational Health Literacy (Responsiveness) of Hospitals (OHL-Hos) (9). The three standards that were reformulated into questions for the interview guide address easy navigation and access to documents, materials and services, the application of health literacy best practices in communication, and the organisation’s promotion of health literacy during hospitalisation and after discharge (9).

We used the same interview guide at all five healthcare institutions, but follow-up questions were adapted to the situation at each institution. We did not need to modify the interview guide during the study. 

Data collection 

Data were collected in semi-structured focus group interviews of service users at five healthcare institutions in the specialist health service. One focus group interview was conducted at each institution, with three, five, six, seven and eight participants, respectively. The sample consisted of eleven men and eighteen women, aged 22–86 years.

The data were collected between June 2022 and January 2023. Each healthcare institution appointed an internal contact person for the project, who recruited the participants. Inclusion criteria for participation in the study were the ability to speak and understand Norwegian and having a health condition that allowed participation in an interview of approximately one hour. 

Furthermore, participants were required to be service users at the respective healthcare institution. Service users who did not speak Norwegian, were bedridden, or had cognitive impairments were excluded. At one of the institutions, parents participated on behalf of their children.

The focus group interviews were conducted by the last author, who served as the moderator, with the third or fourth author acting as co-moderator, observing and taking notes. Before the interview, participants were briefed on the moderators’ roles and assured that they had no affiliation with the healthcare institution. No staff from the institution were present during the interviews. 

Analysis 

The data consisted of transcribed audio files and field notes. The two first authors analysed the material using thematic analysis inspired by Braun and Clarke (12). We started by forming an overall impression of the data by taking individual notes, which we then discussed. The data were then coded systematically.

We colour-coded text in Word files to identify patterns in the data. Codes with related meanings were grouped into 29 categories, which were then synthesised into four main themes. Two of the main themes each included two subthemes. During the analysis, we created four preliminary thematic charts to structure the content within each theme (Appendix 1, Appendix 2, Appendix 3 and Appendix 4 – all in Norwegian).

We then refined the four thematic charts into a single thematic chart to create an overview of the themes and subthemes. This dynamic process was time-consuming, as we repeatedly returned to the data to further develop the themes.

Ethical considerations

The study was part of a project on organisational health literacy in healthcare services, and Sikt – The Norwegian Agency for Shared Services in Education and Research was notified of the project (reference number 825176). No health data was collected for the project, and approval was not therefore required from the Regional Committee for Medical and Health Research Ethics (REK). In addition to Sikt’s assessment, the project was approved by the data protection officers at three of the healthcare institutions.

For the remaining two institutions, no separate data protection assessment was required beyond Sikt’s assessment. Before the focus group interviews, participants received both oral and written information about the study. Participation was voluntary and based on informed written consent, which has been stored separately from the data. 

Participants were informed that they could withdraw from the study at any time without any consequences from us or the healthcare institution. We only collected information on gender and age, and the data were anonymised in the transcription prior to analysis.

Results 

Through the analysis, we identified four main themes describing service users’ experiences of organisational health literacy in healthcare services: 1) Finding their way, 2) Digital access and service user preparedness, 3) Communication with the healthcare services, and 4) Ensuring smooth care transitions.

Figure 1 provides an overview of the themes and subthemes, illustrating organisational health literacy in healthcare services from the perspective of service users in a thematic chart.

Finding their way

Theme 1, Finding their way, includes two subthemes: 1A) Locating the healthcare institution and 1B) Navigating their way around the healthcare institution.

Subtheme 1A addresses locating the healthcare institution using signage, GPS and Google Maps, modes of transport and patient travel services. In general, participants found it easy to find the relevant healthcare institution, but several reported challenges and uncertainty in planning and completing the journey. 

Participants expressed a need for more information about transport options and patient travel services: ‘It is not clearly communicated on [the institution’s] website that contacting the patient travel service to clarify your route should be the first step.’

Subtheme 1B concerns service users navigating their way around the healthcare institution. Several participants highlighted the need for human assistance, such as wayfinding volunteers and service desks: ‘I always ask […] at the service desk, and they tell us where to go.’ Participants noted that signage was not always consistent, and they expressed a desire for more universally designed and illustrative signs. Several also mentioned that it was difficult to understand the overview maps displayed within the institution.

Digital access and service user preparedness

Theme 2 covers service users’ access to digital health services and their preparedness to use them.

Participants reported that both internet access and sufficient digital literacy are necessary to use digital health services and find health information. Digital literacy varied among participants, and some relied on personal support to access and make use of digital health services.

Some noted that age and work experience impacted on their preparedness for using digital health services: ‘I belong to a dying breed, you know, those who didn’t grow up with computers and the internet, but through work I’ve learned computer skills.’ Others had difficulties navigating websites: ‘And then I struggled a bit to find information, it needs more than just one click.’ 

Communication with the healthcare services

Theme 3, Communication with the healthcare services, was derived from two subthemes: 3A) One-way communication from the health service and 3B) Interaction between service users and healthcare personnel.

Subtheme 3A, One-way communication from the health service, covers situations where the health service is the sender or source of information, such as appointment letters, as well as how the healthcare service communicates health information to service users. 

The participants’ experiences differed in relation to appointment letters from the health service. The letters typically provided specific and necessary information, but it was not always sufficient. Some stated that they had not read the letter carefully: ‘I’m not sure what was written in my appointment letter.’

The participants had used various printed and digital sources of information, such as information brochures, the Helsenorge website, the healthcare institution’s website or social media channels. Feedback from participants indicated that digital sources of information were more up to date than printed ones.

Theme 3B addresses the interaction between the service user and healthcare personnel in the communication of health information. Several participants felt acknowledged by the healthcare personnel: ‘I think everyone working here sees the whole person, not just the illness.’

The participants emphasised the need to build a relationship characterised by active participation, recognition and understanding. ‘What matters to you?’ was used as a tool to develop shared goals and structure an individual care plan. The participants pointed out the importance of using everyday language, explaining medical terminology and adapting the language: ‘Norwegian is Norwegian, but medical Norwegian and everyday Norwegian are different languages.’

Some participants reported that too little time was allocated for individual consultations. They wanted longer conversations with healthcare personnel to gather knowledge about their own health, understand the information provided, and apply it in practice. The participants said that health information was communicated both one-on-one and in groups.

Some found that health information was conveyed in different settings and wished that sensitive information was delivered in private. The participants reported that healthcare personnel rarely included family members in the communication, but at the same time expressed that they did not feel they needed this.

Ensuring smooth care transitions

Theme 4 describes the arrangements made during transitions from the healthcare institution to primary care and the patient’s home. The participants had received varying amounts of information about discharge and further follow-up. Some pointed out challenges in the communication with primary care: ‘Yes, many people struggle with the communication with primary care.’

Some found that the information about advocacy groups and patient and service user rights was insufficient, while others called for assistance in applying for benefits. Some highlighted the importance of maintaining contact with others in the same situation: ‘With the same illness, you can share experiences.’ 

Sharing experiences with others in the same situation can help service users apply and reinforce the knowledge they gained during their hospital stay after returning home.

Discussion

We identified four main themes describing service users’ experiences of organisational health literacy in healthcare services: 1) Finding their way, 2) Digital access and service user preparedness, 3) Communication with the healthcare services, and 4) Ensuring smooth care transitions.

Finding their way 

The participants found it easy to locate the healthcare institution using various aids such as signage and GPS, but several noted that it was difficult to find their way around the institution because some signs were poorly placed or designed. Finding their way in the health service relates to navigational health literacy (13).

In a survey of the Norwegian population, about half reported difficulties with navigational health literacy at the system and organisational level (3). Several frameworks for health-literate healthcare services highlight the importance of enabling service users to locate healthcare institutions and find their way around them (6, 9).

In the pilot test of the OHL-Hos self-assessment tool at five Norwegian healthcare institutions, staff and management at three of them stated that their institutions helped patients and visitors find their way to the different departments (7).

This finding contrasts with the experiences reported in our study regarding service users navigating their way around healthcare institutions. Based on our findings, healthcare institutions should pay attention to the design and placement of signs within their facilities. Under the principle of universal design, institutions have an obligation to adapt the physical environment to ensure equal access to services (14).

Human assistance, such as wayfinding volunteers, was important for service users being able to find their way around the healthcare institution. Having someone available to offer assistance could be regarded as necessary, given that 35% of the population find it difficult to find the correct contact person within healthcare institutions (3).

From an organisational health literacy perspective, there is also a need for better information on transport options and directions, as well as more accessible information on when and how patient transport services can be used. 

Digital access and service user preparedness 

Our results show that internet access and sufficient digital literacy were needed to use digital health services. We interpret this to mean that the participants were, to varying degrees, prepared for and receptive to digital solutions.

According to Zanaboni and Fagerlund (15), users of digital health services are generally satisfied with them and find them useful. However, the majority in their sample had a university education, and only 16% were aged 65 or over. 

Groups that are particularly vulnerable to digital exclusion include people over 65, working-age individuals who are not in employment or education, people with disabilities, individuals with health challenges, and certain immigrant groups (16).

Studies show that those with the greatest need for health and welfare services are the ones with the poorest access to them and the greatest difficulty using them (3, 17, 18). If we fail to consider the variation in people’s ability to use digital health services, some groups may be excluded, miss important information, or receive lower-quality care because they are unable to make use of digital services (19).

To ensure equitable health care, it is crucial that digitalisation is adapted to service users’ abilities, in line with a public health report that emphasises the need for a more inclusive and responsive societal development that benefits individuals regardless of their personal resources (19).

Communication with the healthcare services

The participants reported varied experiences with appointment letters from the specialist health service. Because difficulties in understanding these letters have long been recognised, several projects have aimed to revise and simplify them (20). Our results suggest that further adaptations may still be needed, and that service users should be involved in further development.

The participants stated that they used multiple sources of health information, including websites and social media. To ensure that everyone can access health information from such sources, plain language and universal design are needed, and readability should be tested with service users (9). Our findings on the importance of adapted health information are consistent with other relevant research (21, 22). 

The participants experienced being seen, acknowledged and cared for by healthcare personnel. Asking the question ‘What matters to you?’ supported patient involvement and aligns with best practices in care pathways and person-centred care (23, 24). Our study suggests that healthcare personnel often convey health information in understandable everyday language. This finding contrasts with other research, where service users typically find it difficult to understand health information provided by healthcare personnel (25).

For service users to be able to apply the information, healthcare personnel must communicate effectively, use plain language and adapt the information to the service user’s health literacy. The ‘4 Good Habits’ communication tool has been shown to improve nurses’ communication skills (26). Healthcare personnel should also use the teach-back method to ensure that they and the service user have understood each other (27). 

The participants in this study reported that they wanted longer consultations with healthcare personnel. Sufficient time is important for gathering and understanding health information, as well as applying that knowledge in daily life. A study assessing communicative health literacy in several European countries (28) reported that short consultation times with doctors posed a challenge. Both healthcare personnel and service users need enough time to communicate and interact, which is central to creating health-literate healthcare services (6, 9). While this is ultimately a matter of resources, health-literate communication can in itself lead to savings. 

Ensuring smooth care transitions

Our study shows that the participants received varying amounts of information and support in connection with the transition to primary care and their home. Our findings are consistent with a report from the Norwegian Board of Health Supervision, which points out that patients receive insufficient information about what happens after discharge (29).

This indicates a need for procedures and routines for conveying information when patients are to be discharged. Such a procedure could help ensure that service users receive sufficient information at the right time, providing reassurance and predictability. Measures have been implemented as part of the Patient Safety Programme to ensure safe patient transitions (30). 

Creating safe transitions has also been highlighted by Brach et al. (6) as a hallmark of health-literate healthcare services, which in turn can help reduce the number of readmissions. Health-literate healthcare services therefore take into account service users’ varying health literacy even at the point of discharge. 

Strengths and limitations of the study 

Strengths of the study include the data collection method: focus group interviews, which provide in-depth insight into participants’ experiences. A further strength was that the focus group interviews were conducted at five different healthcare institutions, highlighting a range of experiences within the specialist health service.

The analysis was conducted by the first authors under supervision, but they were not present at the focus group interviews. Consequently, they could remain objective about the data and had limited insight into the group dynamics. This also strengthened the independence of the analysis and allowed for an inductive approach.

Another limitation is that the first authors were not involved in transcribing the interviews, which Braun and Clarke note is important for researchers to become familiar with the material (31). However, repeated reading of the transcribed audio files and field notes provided good insight.

Implications for practice

Service users’ experiences help to create health-literate healthcare services. Healthcare services can use these experiences to make it easier for future service users to find their way around healthcare institutions, for example through greater use of wayfinding volunteers and adapted signage. A greater focus is needed on adapting digital health services to service users’ digital literacy in order to prevent exclusion.

Equitable health care requires informational materials to be up to date and physically accessible, alongside a focus on digital health information and digital services. Healthcare services should also increase efforts to ensure smooth care transitions, including better communication and verifying that information has been understood. 

Conclusion

The majority of study participants found it easy to locate the healthcare institution but felt that navigating their way around it could be improved. With the increasing digitalisation of healthcare services, patients need digital access, the skills to use such services and user support. Recognising this challenge enables healthcare services to reduce the risk of some user groups being excluded and missing essential information.

To create health-literate healthcare services, the relationship between the service user and healthcare personnel is pivotal. In addition, health information must be adapted to the service user’s health literacy. Sufficient and adapted information can help ensure smooth transitions from the healthcare institution to primary care and the patient’s home. 

The healthcare services have already implemented several health-literate initiatives, but further improvements are needed from the service user’s perspective. To improve organisational health literacy in healthcare services, it is essential to take into account service users’ experiences. 

Pia Emilie Kamperud and Trine Tapper share first authorship.

The authors declare no conflicts of interest.

Open access CC BY 4.0

Introduction

The World Health Organization (1) estimates that over 700,000 people die by suicide every year. For every suicide, there are many more suicide attempts. In Norway, approximately 650 people die by suicide annually, two-thirds of whom are men (2). People with severe mental disorders are at increased risk of suicide, and Europe has the highest rates worldwide (2, 3).

Suicidal behaviour includes thoughts, plans and threats of suicide, as well as suicide attempts (4). Around 17% of the population are estimated to have suicidal thoughts at some point in their lifetime, and the prevalence is higher among young people (5).

For some people, suicidal thoughts and plans can be constant and are accompanied by self-destructive patterns of behaviour, including self-harm and suicide attempts. Chronic suicidality is a term associated with constant suicidal thoughts and plans, combined with repetitive self-destructive patterns of behaviour, self-harm or suicide attempts (6). The term appears to be well-established in the medical community, but remains contested (7, 8). 

Chronic suicidality is normally associated with borderline personality disorder (7), for which suicidal behaviour is one of the diagnostic criteria. Other symptoms include intense and unstable emotions, identity problems, unstable interpersonal relationships, impulsivity and self-destructive thoughts and behaviours (9).

For most people struggling with suicidal thoughts and behaviours, these impulses fluctuate over time. The label can therefore be misleading, as it can lead to acute suicide risk being overlooked (7). In this study, this symptom profile is referred to as recurrent suicidal behaviour.

Patients who exhibit recurrent suicidal behaviour are frequent users of healthcare services (6, 8) and often seek help from support services (5, 10). One possible explanation for this is the lack of good treatment options in primary care (11).

This patient group tends to yield little benefit from in-patient care (12), and national clinical guidelines (6) recommend that they be treated primarily on an out-patient basis with close, ongoing follow-up. The risk of suicide is somewhat higher in this group than in patients with suicidal issues of a more transient nature (6).

Healthcare personnel need to be aware of countertransference reactions that can arise when interacting with patients (10). Countertransference can be defined as the clinician’s internal and external reactions to a patient’s style of communication. What the patient projects onto the clinician can trigger internal or external reactions in the clinician, which are then projected back onto the patient, often unconsciously (13).

Taking on too much responsibility in this type of work can lead to burnout (14), which in turn can reduce professional efficacy (15).

How healthcare personnel perceive a suicide attempt can impact on a patient’s sense of shame and recovery. Patients report prejudiced and negative attitudes among healthcare personnel when seeking emergency medical care for a suicidal crisis (16, 17). 

In a study examining the uptake of emergency medical services among patients with borderline personality disorder, 23 of the participants had collectively sought help from healthcare services 3359 times over a six-year period (11), averaging 146 visits per person.

Municipal out-of-hours clinics are part of the out-of-hospital emergency medical service and work closely with the Emergency Medical Communication Centre (AMK/emergency number 113) and the ambulance service (18). They are responsible for providing 24-hour emergency care for people in the municipality.

The emergency response team (known as AAT in Norway) is directly linked to district psychiatric centres, under the specialist health service, and is intended to provide coordinated care across primary and specialist services (19). AAT is a low-threshold service designed to provide rapid, short-term emergency care in cases of severe mental crisis or to refer patients to other units within mental health services.

Qualitative research on healthcare personnel’s experiences with this patient group will help fill knowledge gaps in the field.

Objective of the study

The objective of the study was to explore healthcare personnel’s experiences in the out-of-hours clinic with patients exhibiting recurrent suicidal behaviour.

Method

We used a qualitative study design with semi-structured interviews of healthcare personnel at two medium-sized out-of-hours clinics in Southwest Norway. The interviews were recorded using an external voice recorder. They lasted an average of 30 minutes and were conducted and transcribed by the first author. 

Coding was performed by the first author and subsequently refined in analytical discussions with the last author. The study is based on the first author’s master’s dissertation, where the last author was the main supervisor.

Study context

The municipal out-of-hours service is a statutory provision under the Emergency Medicine Regulation (18) and the Health and Care Services Act (20). Local authorities can run their own out-of-hours service or work in collaboration with other local authorities (21). In 2022, 168 out-of-hours clinics and 94 local emergency medical communication centres are registered in Norway, covering the country’s 356 municipalities (22). The study included participants from two medium-sized out-of-hours clinics in Southwest Norway. 

Sample and data collection 

Using a strategic sample, we interviewed eight participants: six nurses and two doctors aged between 25 and 50 years. One was male and the rest were female.

We conducted individual, semi-structured interviews remotely via digital video conference, and recorded them using an external voice recorder. An information sheet about the project was sent to the administrative staff at the relevant out-of-hours clinics for further distribution to potential candidates. Some participants were recruited through the snowball method (23).

Healthcare personnel who had worked at the out-of-hours clinic for a minimum of one year, and who worked 75% or more of a full-time position, were included in the study. Respondents who did not meet these criteria were excluded. 

Analysis

The thematic analysis was conducted in accordance with the steps outlined by Braun and Clarke, using an inductive approach (24, 25). We familiarised ourselves with the data, generated preliminary codes, searched for themes, revised the themes, defined and named them, and finalised the report.

We transcribed the data verbatim, read through it several times, and identified patterns and similarities in the text. Recurring patterns formed the basis for the preliminary codes. The participants’ statements were placed under the corresponding code, which were then synthesised into provisional themes.

We evaluated the themes and revised them several times as we became more familiar with the data (24). Ultimately, we identified one main theme and four subthemes (Table 1).

Ethics

Sikt – the Norwegian Agency for Shared Services in Education and Research was notified of the study, reference number 795712. The study did not require approval by the Regional Committee for Medical and Health Research Ethics. All participants took part voluntarily and signing an informed consent form. The study adheres to the ethical principles set out in the Declaration of Helsinki (26). 

Preunderstanding

The authors of the article are nurses who have worked in mental health care. During the writing period, the first author was working at an out-of-hours clinic that was not part of the study. It is reasonable to assume that we had prior experience of the patient group in question, and that the analysis may reflect our preunderstanding. We remained mindful of this throughout the analytical process.

We did not know the participants prior to the study. The design of the interviews and analysis may represent potential sources of error. We made a conscious effort to remain objective about the data during the analysis. The analysis was presented at Master’s seminars and in several supervision sessions, and the process has been open and transparent.

Results

One main theme was developed: ‘Navigating between a sense of responsibility and helplessness’, which reflected the constant tension between these two aspects. Interdisciplinary collaboration between health services, the police and other institutions was often required for patients exhibiting recurrent suicidal behaviour at the out-of-hours clinic.

The burden of responsibility created tension between healthcare providers, and combined with the patient group’s frequent visits to the out-of-hours clinic, resulted in staff alternating between a sense of responsibility and helplessness. This is further described under the following subthemes:

Caught between competing demands on resources and multiple healthcare providers

The participants described how the complexity of this patient group led to tension and debate among the emergency services. Multiple agencies could be involved in a single patient case, and interactions often reflected a reluctance by any one party to assume ultimate responsibility if something went wrong:

‘It creates conflicts between the emergency services. This often involves other partners, both ambulance and police. It creates tension in the collaboration there. It leads to a shirking of responsibility […] yes, I find it difficult.’ (Participant 3)

The participants also described interdisciplinary challenges in coordinating care for the patient. Several reported that each party seemed to operate according to different requirements and guidelines. This resulted in the out-of-hours clinic seemingly taking on an informal coordinator role among the parties, despite the absence of a specific plan. This lack of clarity also led to more resources being used on the patient than was considered appropriate.

The patient group was often described metaphorically. Some likened the care provided by the out-of-hours clinic to ‘firefighting’, while others described patients as being ‘bounced around’ in the system.

Resource-related challenges were highlighted. Several participants noted that this patient group often exhibited challenging behaviour, and that it was not uncommon for a single nurse to be occupied with one patient for several hours. Such situations meant that fewer staff were available for other waiting patients.

The workload for the rest of the team increased correspondingly. Nurses also answered the telephone, and identifying effective solutions within a reasonable timeframe – without unnecessary resource use – was often time-consuming.

A recurring observation was that it took longer to deal with patients with mental health problems than those with somatic health issues, and that the out-of-hours clinic facilities were not well suited for this patient group.

This theme highlighted how staff feel they are caught between competing demands on resources and multiple healthcare providers, interdisciplinary challenges and resource use. 

Balancing clinical experience with a lack of skills enhancement

Participants reported being concerned about their own level of expertise in caring for patients exhibiting recurrent suicidal behaviour. Several expressed a desire for a greater focus on skills enhancement in the workplace. Some felt that the courses they had access to were sufficient, but emphasised that these did not make them feel more confident when interacting with this patient group:

‘The patient group with chronic suicidal risk is the topic we have had the most courses on. But no matter how much knowledge you acquire, how many courses we attend – how many e-learning modules you complete – I feel that very little of the theory applies to this patient group […] But I think it’s because there is no clear answer […] in the out-of-hours clinic context. We are an emergency service after all.’ (Participant 3)

Experience made some participants feel more confident in making difficult decisions, despite the responsibility involved: 

‘My skillset isn’t very specialised. But you get a lot of hands-on experience at the out-of-hours clinic. We encounter these issues daily after all. So you become more confident in sending patients home – even when they tell you they are afraid they might take their own life.’ (Participant 6)

Most participants expressed a desire for clearer guidelines when working with this patient group.

This theme highlighted how the balance between clinical experience and expertise affected participants’ professional confidence, with practical experience being the main source of reassurance.

Alternating between self-efficacy and doubt

Several participants found it difficult to assess whether patients were being truthful when threatening suicide or claiming to have attempted suicide over the telephone. Many explained this was because the patient group was well aware of how the emergency services operated and knew what to say to elicit particular responses. This uncertainty made it challenging for staff to respond to the patient group appropriately:

‘I find patients classified as chronically suicidal challenging […] or in combination with, maybe, a personality disorder. They are very difficult to engage with in the right way. They need help, but it’s been implied to them that they should not be admitted to hospital. It makes you feel a bit constrained. The challenge lies in what we can offer, and how much of it we can offer. […] What I find difficult is knowing whether I can trust them. Trust that they are telling the truth.’ (Participant 2)

Although participants were sometimes unsure about what patients were telling them, several of them found it easier to handle telephone calls from patients they knew well.

This theme highlighted how nurses could have preconceived attitudes that gave rise to doubt, ambivalence and a feeling of being manipulated by the patient. Interactions were easier when dealing with patients they had already seen during previous visits to the out-of-hours clinic.

Assessing complex situations based on limited information

Another challenge was that the agencies used separate medical record systems that did not communicate with each other. This frustration was particularly evident during telephone consultations, where staff at the out-of-hours clinic had to assess whether the patient was in their usual state or experiencing an acute deterioration:

‘Sometimes I have no information at all. If they haven’t been in contact with us before, I have nothing. So it’s easier to assess repeat patients […] We’re in a bit of a difficult situation at the out-of-hours clinic, as we have no access to either the GP’s or the hospital’s systems and patient histories.’ (Participant 1)

The absence of interoperable medical record systems also created challenges for out-of-hours clinic staff when working with other agencies and deciding which interventions should be implemented. Each agency had access to different information, and their interpretations of the severity of a patient’s condition could vary. This was particularly challenging outside of normal working hours, when other services were often unavailable. Night shifts were especially challenging due to the lack of colleagues or other agencies to consult or rely on:

‘There is no access to the specialist health service at night. The out-of-hours clinic sort of becomes the treatment provider. There is no rehabilitation unit, no district psychiatric centre to refer these patients to. So we’re left with full responsibility for this patient group.’ (Participant 3)

Limited access to patient information further complicated the work. This theme highlighted the burden of managing complex situations in which staff lacked sufficient information to implement appropriate interventions. Examples included the absence of interoperable medical record systems, insufficient support or access to information, and agencies’ differing assessments of the patient’s level of severity. 

Discussion 

The objective of the study was to explore healthcare personnel’s experiences with patients exhibiting recurrent suicidal behaviour at the out-of-hours clinic.

Responsibility and helplessness

The main theme of the study highlights how out-of-hours clinic staff are navigating between a sense of responsibility and helplessness when working with this patient group. The study shows that staff are caught between competing demands on resources. They report uncertainty about their own level of expertise and describe a burden of responsibility that creates tension between the support agencies. They also emphasised that the lack of interdisciplinary collaboration and the absence of interoperable medical record systems further compounded the challenges of an already difficult job. 

Competing demands on resources and multiple healthcare providers

The subtheme caught between competing demands on resources and multiple healthcare providers shows that dealing with patients with recurrent suicidal behaviour at the out-of-hours clinic is more time-consuming and resource-intensive than for patients who have more clearly defined somatic health problems. 

Using an intervention model developed for the out-of-hours clinic, Walby and Ness (27) estimate that a single 60–90-minute consultation could help resolve a patient’s crisis and thereby prevent unnecessary hospital admissions. However, work at the out-of-hours clinic often involves dealing with large numbers of unscreened and unfamiliar patients under tight time constraints (28). 

When nurses know which measures should be implemented but are prevented from doing so due to a high workload and resource-related challenges, they can experience moral distress (29). Suicide prevention work is complex and challenging, both professionally and emotionally (6). Threats of suicide challenge staff on an emotional level and create fear of repercussions or legal liability if something goes wrong (5).

National clinical guidelines (6) stipulate that treatment providers should work together to prevent patients from being ‘bounced around’ between different levels of care and institutions. However, these guidelines do not specify who is responsible for the quality of the interdisciplinary collaboration, implying that this responsibility falls on the individual practitioner.

According to Norway’s professional ethical guidelines for nurses (30), nurses’ work should promote openness and good interdisciplinary collaboration across all parts of the health service. The feeling of being left with sole responsibility can, in the most extreme cases, lead to nurses leaving the profession (31). 

Clinical experience and skills enhancement

The study reveals that healthcare personnel experience balancing clinical experience with a lack of skills enhancement. This finding aligns with the study by Rees et al. (32), who claim that insufficient investment in mental health training for staff in emergency medical services is a recurring issue in previous research in the field.

Rees et al. (32) also point out the absence of clear guidelines on how to deal with this patient group. Patients with recurrent suicidal behaviour have more frequent contact with emergency medical services than patients with other mental health problems (11).

The Norwegian government’s Action Plan for Suicide Prevention 2020–2025 (33) states that the emergency medical services are often the first point of contact within the health service for patients at risk of suicide. Healthcare personnel therefore require the right expertise, good communication skills and suitable tools to assess the severity of the situation and determine the appropriate level of care (33). Staff working specifically with this patient group need specialised training and supervision (6). 

Self-efficacy and doubt

The subtheme alternating between self-efficacy and doubt addresses a sensitive and difficult problem. Individuals with recurrent suicidal behaviour often struggle with regulating emotions and impulses. Their reactions can be abrupt and lacking nuance, leading to conflicts and misunderstandings (34).

Patients with recurrent suicidal behaviour can evoke strong emotions in treatment providers (7). Some patients may be idealised, while others are devalued, leaving them feeling unfairly treated, powerless and inadequate (12). Research also shows that admission to in-patient care is often counterproductive for this patient group (12).

Negative emotions projected by the patient can trigger internal and external reactions in the clinician, which are then projected back onto the patient, often unconsciously (13). 

Complex situations

The subtheme assessing complex situations based on limited information reveals that the absence of interoperable medical record systems means that personnel lack important information about treatment trajectory and access to the patient’s crisis plan, where one exists. Patients are often hospitalised even though the treatment plan could have been adjusted and emergency interventions implemented to improve the patient’s long-term prognosis (6).

This can undermine the patient’s autonomy and give the impression that admission is the only appropriate response in the event of an acute crisis (10). A particular challenge for out-of-hours clinic staff is the lack of other available services with which to discuss this patient group. The emergency response team in the geographic area of our study is only available until 9.00pm on weekdays and 6.00pm at weekends, and does not operate at all on public holidays (35).

In summary, the results can be interpreted in light of studies showing a higher rate of burnout among nurses when the moral burden becomes overwhelming (14).

Maslach (15) notes that burnout can manifest as cynicism and a decline in professional efficacy, irritability, withdrawal, inappropriate attitudes, reduced productivity, depletion and exhaustion, low morale and an inability to cope. If left unaddressed, such experiences can have serious consequences for the nurses, the patient group and the health service as a whole. 

Strengths and limitations of the study 

Participants were recruited using purposive sampling and the snowball method. A potential limitation of this approach is that those who choose to participate may be more engaged and possibly more critical than a randomly selected sample. Personal or political motives could also influence the decision to participate, potentially leading to a focus on the challenges of the target patient group.

Only one participant was male, which could also be considered a limitation and reflects the predominance of women in the health and care sector (36). A strength of the study is that participants were recruited from two different out-of-hours clinics. 

Using a digital video platform for the interviews can reduce the level of interaction compared with in-person interviews with an observer present. To avoid variation in responses due to different interview methods, all interviews were conducted via Teams. Video interviews allow the researcher to observe various phenomena, particularly non-verbal communication and body language, which can make it easier to interpret what is being said (37).

All analyses were initiated by the first author and subsequently discussed with the last author in relation to the study’s objectives. This process allowed the results to be validated and critically reviewed (38).

Conclusion

Healthcare personnel find that they navigate between a sense of responsibility and helplessness when dealing with patients with recurrent suicidal behaviour at the out-of-hours clinic. This appears to stem from the need for increased resources at various levels, including suitable facilities where patients can wait for help, interoperable medical record systems, better collaboration between support services and skills enhancement.

The study also highlights the importance of providing this patient group with adequate, long-term treatment to prevent unnecessary contact with the out-of-hours clinic. Training in dealing with patients in suicidal crisis, along with professional supervision for clinic staff, appears to be essential for coping with the considerable demands of the job.

Further studies are needed to explore the implications of the staff’s sense of helplessness. More research is also required on the prevalence of burnout and related experiences when working with this patient group in acute settings.

The authors declare no conflicts of interest.

Open access CC BY 4.0

Introduction

Antibiotic resistance is now one of the greatest challenges for modern medicine and is described by the World Health Organization (WHO) as a threat to global health (1). In Norway, the prevalence of resistant bacteria has traditionally been low compared with many other countries; however, infection outbreaks are an increasing threat in the Norwegian health service (2).

In its report on outbreaks of infectious diseases, the Norwegian Institute of Public Health reported that 23 outbreaks of resistant bacteria were recorded in Norwegian institutions in 2023. The number of actual cases is likely underreported (3).

An outbreak is defined as two or more cases of the same disease suspected to have a common source, or when more cases occur than expected in a specific time period and area (3, p. 6).

When resistant bacteria are detected in hospitals, extensive infection control measures and significant resources are required to limit their spread. This not only puts pressure on the institution’s resources but also affects the daily work of frontline nurses (4, 5).

Since the COVID-19 pandemic, numerous studies have been published on nurses’ management of the epidemic. However, local outbreaks of resistant bacteria differ from larger pandemics in that they are often confined to individual wards or institutions. This creates a different dynamic and particular challenges for the staff (6, 7).

Very little is known about nurses’ experiences during such local outbreaks, despite the fact that these situations are often protracted and challenging. Previous studies have primarily focused on organisational and medical aspects of outbreak management, while healthcare personnel’s experiences and psychosocial burden have received less attention (6, 7).

Low job satisfaction and high staff turnover are currently a challenge. When nurses leave the profession, valuable expertise is lost, which affects patient safety and the quality of health care (8–10).

Particularly demanding work situations, such as protracted outbreaks, can exacerbate these challenges. Given nurses’ central role on the frontline during an outbreak, it is crucial to explore their experiences in order to prepare for and manage future outbreaks. This insight is particularly important for supporting nurses and retaining them in clinical practice.

Objective of the study

The objective of the study was to examine nurses’ experiences of working on a surgical ward during a protracted outbreak of extended-spectrum beta-lactamase (ESBL)–producing Klebsiella pneumoniae (ESBL-Kp). ESBL are enzymes that are resistant to most beta-lactam antibiotics, including penicillin, cephalosporin and the monobactam aztreonam (11).

Transmission occurs through direct or indirect faecal–oral contact (12). Patients admitted to hospitals with ESBL need to be isolated (11). This requires increased resources and has several negative consequences for the carrier of the bacteria, including higher mortality, negative emotions, limited interaction with family, stigmatisation and reduced quality of health care (13–16).

Method

The study aimed to address the following research question: What were nurses’ experiences of working during a protracted outbreak of ESBL-Kp?

To explore different experiences, we used a two-phase approach, starting with a questionnaire survey. The results of this survey formed the basis for an interview guide for qualitative focus group interviews (17). This article presents the results from the focus group interviews.

Context

The study was conducted in a highly specialised surgical ward at a university hospital in Norway. From June 2019 to January 2021, more than 60 patients were infected with ESBL-Kp. Approximately one-third of the patients developed clinical infections, mainly urinary tract infections. Some progressed to sepsis and had prolonged hospital stays.

It took one year from the onset of the outbreak for ESBL-Kp to be identified in the biofilm formed in the drainpipes of toilets, showers and sinks. Ruling out other sources of infection and eradicating ESBL-Kp took approximately two years.

At the time of the interviews, no new cases had been reported in the preceding four months, and a few weeks later the outbreak was considered over. During the data collection period, 51 nurses and 5 administrative nurses were working on the ward.

All six authors of this article are nurses with research competence. The first and second authors worked on the ward as clinical nurses during the outbreak but were not study participants.

Recruitment and enrolment

We recruited participants using convenience sampling and invited all nurses on the ward to participate. Administrative staff were not invited, as their duties differed significantly from the rest of the staff. Prior to the study, the study’s aim, methodology and data protection measures were explained both orally and via individual emails.

A questionnaire and an invitation to participate in focus group interviews were sent in an electronic link via email and SMS. Participants for the focus group interviews contacted the first author, who assigned them to groups based on the duty roster.

The interviews were conducted between day and evening shifts to allow as many nurses as possible to participate. Nurses who participated in their free time were allowed to register this as work hours. Enrolment and data collection took place in May and June 2021.

Development of the interview guide and conducting focus group interviews

Due to the limited literature on healthcare personnel’s experiences during infection outbreaks, we developed a questionnaire to guide the discussion topics in the focus group interviews. The questionnaire was developed based on discussions with the nurses on the ward and among the article’s authors. It covered the themes of working environment, patient care, management’s handling of the outbreak and psychosocial health. There was also the option to provide free-text responses.

Forty-two of the 51 nurses completed the questionnaire. The results were reviewed to select relevant topics for the interview guide. Responses that revealed challenges or disagreement were included in the interview guide. For example, 74% disagreed with the statement, ‘I think it is acceptable that I have been given new tasks due to the ESBL outbreak’. This was therefore included as a topic in the focus group interviews. The interview guide consisted of the same four main themes as the questionnaire (Appendix 1 – only in Norwegian).

We opted for focus group interviews because they are well suited to capturing experiences and attitudes in an environment where many people interact. This method also generates rich and detailed data through discussion (18).

According to Malterud (18), five to eight participants per group creates the best possible dynamic in discussions. Two of the focus groups in the study had five participants, and one had six. Three focus group interviews were conducted at the hospital by external researchers. One was conducted by a single moderator. In the other two, a secretary also participated. The interviews lasted approximately one and a half hours. 

Analysis

The interview data were analysed using Braun and Clarke’s six-step thematic analysis (19). The analysis involved continuous comparison and movement between the entire dataset, the coded data excerpts and the themes that formed the results. To familiarise ourselves with the data, all authors read the transcribed material independently.

The first author carried out the initial coding, which was then discussed by all authors. We subsequently developed broader themes that described the participants’ experiences during the outbreak. The codes and themes were discussed several times in order to reach consensus on the main themes. This ongoing discussion ensured consistency and coherence in the analysis, thereby increasing the trustworthiness of the results (20).

Interview participants were given the opportunity to read and comment on the results and the article. To ensure rigor in both the research process and the reporting of results, we followed the COREQ criteria for reporting qualitative research (21).

Ethics

The study was approved by the hospital’s data protection officer (reference number 21/10569). Participants completed the questionnaire anonymously so that they could not be identified, thus ensuring confidentiality. The questionnaire did not ask for participants’ sex or exact age. Completion of the questionnaire was considered consent to participate.

Because the nurses in the ward knew us, two external researchers conducted the focus group interviews. At the start of each interview, the moderator emphasised that all discussions were confidential and should not be shared outside the group. Participants signed an informed consent form prior to the interviews.

An external secretary, who had no prior knowledge of the nurses or the ward, transcribed the interviews and removed identifiable information, such as dialects and names. All data were stored on the hospital’s secure server for sensitive data. The recordings were deleted after transcription.

Results

Sixteen nurses participated in the three focus group interviews (Table 1).

Five main themes emerged from the analysis of the focus group interviews (Table 2):

1. Lasting feeling of uncertainty and guilt
2. Loss of participation in decision-making and motivation
3. Feeling of stigmatisation and shame
4. Reduced quality of patient care
5. Positive working environment as a protection mechanism

Lasting feeling of uncertainty and guilt

The nurses spent considerable time and effort trying to identify the source of the ESBL outbreak. They discussed various theories about its cause and tried to find commonalities among the patients who tested positive for ESBL-Kp. Their inability to pinpoint the source led to a lasting feeling of uncertainty, which they found extremely challenging:

‘There were so many unanswered questions; we never really got any answers because there simply weren’t any. So you have to kind of live in that ignorance.’ (Interview 2)

The participants were not worried about contracting ESBL-Kp themselves, but they feared transmitting it to patients, i.e. causing rather than preventing infection. When patients tested positive for ESBL-Kp it left the nurses with both a collective and a personal feeling of guilt. Even when some believed they were not the source, they still felt guilty because the patients were infected on their ward:

‘It’s potentially deadly for them, so you sit there thinking, have I passed on something to a patient that could kill them?’ (Interview 3)

In the search for the cause of the outbreak, it was decided that all nurses should be tested for ESBL-Kp. This had not been done previously, and many of the nurses described feeling uncertain about the consequences of testing positive. They were, for example, afraid of losing their jobs or being reassigned elsewhere.

This uncertainty triggered a wide range of emotions. Some expressed anxiety, psychological stress and frustration, while others accepted the testing without letting it affect them emotionally. The prospect of testing positive was troubling as no treatment was available for those who did:

‘There were widely differing opinions on that. Some took it very personally and became upset, you know, anxious. It was a wide range of emotions. And others were like, okay, well, let’s get tested then. But I remember that period [...] it was pretty chaotic. There were a lot of emotions.’ (Interview 2)

For most participants, the lasting feeling of uncertainty had a considerable impact on their working day. Some described it as all-consuming. A few participants also explained how the uncertainty and feeling of guilt affected their everyday lives outside of work.

Loss of participation in decision-making and motivation

As the source of the outbreak was unknown and there was no overarching plan for managing it, a number of new tasks were introduced, both to identify the cause and to prevent the spread of ESBL-Kp. However, none of the measures were effective, resulting in a constant stream of new tasks and an increased workload (Table 3). 

The participants described how they were allowed to suggest new measures but had little influence over the existing ones. Participants in all three focus group interviews discussed how their work was dominated by tasks they felt they were overqualified for, such as serving food and cleaning. This made them feel devalued as nurses. The lack of opportunity to participate in decision-making, coupled with ineffective measures that were mostly unrelated to nursing, left them feeling frustrated and demotivated:

‘Is it our water dispenser? Is it the coffee machine? Where is it coming from? Those were the kinds of thoughts running through our heads, and we became more and more desperate. And so did the infection control team and management, ultimately resorting to a bunch of awful measures and such like, and we just didn’t understand why we couldn’t get the outbreak under control, at all levels.’ (Interview 3)

‘Everyone has times when they’re a bit fed up of their job – that’s normal – but for an entire ward to feel that way at the same time, that’s scary. And that’s what happened. We were all a bit deflated in terms of job satisfaction and everything else, and it wasn’t good.’ (Interview 2)

Feeling of stigmatisation and shame

In all the interviews, the participants described how the nurses felt they were stigmatised by healthcare personnel outside the ward. The efforts to prevent the spread of infection went unnoticed by other wards and the participants feared that outsiders thought they were not doing enough to manage the outbreak.

The participants described encounters with healthcare personnel who questioned their competence as nurses, were suspicious, and levelled indirect accusations at them. This led to feelings of shame and a reduced sense of professional pride:

‘I’ve worked here a long, long time, and I’ve always been so proud of working here! […] But at that point I wasn’t proud to work here. I felt we were seen as a dirty ward. And you could hear it – don’t you nurses up there understand about hygiene? So it changed the way I thought about myself and the ward.’ (Interview 3)

Patients were also stigmatised. The nurses described how healthcare personnel from other wards working alongside them lacked knowledge about how to handle the patients or the staff from the ward:

‘And when we went with the patients for surgery, they just stood there and didn’t even greet the patients.’ (Interview 2)

Seven months into the outbreak, the health service was also hit by the COVID-19 pandemic. The nurses described how the ESBL-Kp outbreak was associated with more shame and stigma than COVID-19. COVID-19 affected everyone, whereas the ESBL-Kp outbreak was only in their ward.

The participants discussed how ESBL-Kp can intensify the stigma, as the bacteria colonise the intestines and are transmitted through faeces. Motivation was also different: COVID-19 was a common enemy, while ESBL-Kp was a problem solely for their ward:

‘It [COVID-19] affected everyone! The whole world! Every ward in the hospital. I think what was so problematic with ESBL was that it was with us, we were the troublesome ward, in a way.’ (Interview 3)

Reduced quality of patient care 

The ESBL-Kp outbreak also had negative consequences for patients and resulted in a reduced quality of care. Outside the ward, all patients were treated under contact precautions, even those who tested negative for ESBL. All patients in the ward were last on the list for operations and examinations. Participants described how, in some cases, patients did not receive postoperative monitoring in the intensive care or postoperative unit because there were insufficient resources to manage contact precautions:

‘So I said, “I’m not taking him back to the ward, at the end of the corridor in an isolation room on a Saturday night.” They said that PO [the postoperative unit] can’t take him because he’s contagious […] It was really unfair to the patient, he should have been in PO. And that’s just one of many cases.’ (Interview 1)

With the source of the outbreak unknown, the nurses found it difficult to provide patients with balanced and sufficient information about the outbreak, the risk of transmission and potential complications of ESBL-Kp. The lack of standardised information was challenging, particularly when patients received different information that they then discussed.

One year after the outbreak, all patients were provided with written information prior to admission to hospital. This information was useful, and the nurses found that patients were better prepared for the situation upon arrival at the ward. The participants felt that patients were able to give informed consent to treatment, despite the outbreak:

‘I remember it was a bit uncomfortable in admissions trying to explain it before they had received the [information] sheet, because I didn’t really know what to say. And many asked, “What happens if I get it?”, because they could potentially develop sepsis and become seriously ill, but you can’t really say that. I found that very difficult.’ (Interview 1)

Positive working environment as a protection mechanism 

At the onset of the outbreak, the ward had a team of experienced nurses. As a consequence of the outbreak, followed by COVID-19, several of the nurses considered moving to another workplace. Increasing workload, tedious tasks, fewer patients and greater disparities in patient care affected the nurses’ motivation for their work.

However, certain mechanisms were crucial in helping them cope with the situation. In all three interviews, the participants emphasised the protective role of the positive working environment that had been in place before the outbreak. The nurses valued the opportunity to share experiences, frustrations and concerns, and highlighted the importance of discussing these with colleagues, since friends and family could not understand what they were going through:

‘It was also a place where you could let off steam, because no one at home would understand what you were dealing with. So, it sort of became natural to talk about it there.’ (Interview 2)

Sharing experiences with colleagues fostered a sense of solidarity. This was particularly important when the nurses felt that either they or their patients were being stigmatised. Humour was considered an important coping mechanism that strengthened this sense of solidarity. The participants also described the working environment as non-judgemental and characterised by mutual trust, making it easier to share experiences with colleagues:

‘When she [a nurse from another ward] shouted, “Should you be here?!”, I felt like a pariah, and if I hadn’t been able to return to my ward and receive support from my colleagues, I would have found it very difficult.’ (Interview 3)

Finally, the participants emphasised the importance of having a supportive charge nurse who made it clear that she was on their side and who passed on their frustrations to higher levels within the organisation.

Discussion

In the focus group interviews, the nurses described a workday marked by a lasting feeling of uncertainty and guilt. They experienced loss of autonomy and control over their work and felt stigmatised by colleagues in other wards. The nurses also reported a decline in the quality of patient care. 

These factors combined reduced participants’ motivation and eroded their professional pride. A positive finding, however, was that a supportive working environment served as a protective factor in dealing with these challenges.

Professional authority involves being able to make independent decisions and utilise personal competence in the day-to-day work (22). Professional autonomy fosters nurses’ perception of their role as meaningful (23) and improves the quality of their work (24).

A focus on professional autonomy thus leads to increased patient safety (23), which is important for retaining nurses in the profession (22). According to Pursio et al. (22), four elements are essential for professional autonomy: shared leadership, professional skills, professional collaboration and a healthy working environment. These elements align closely with the findings of this study and are therefore used as a theoretical framework in the discussion.

The nurses felt like they lost control

Shared leadership includes, among other things, the ability of staff to influence their own work situation. The nurses in our study described reduced participation in decision-making, an increased workload and a sense of losing control. The loss of control was particularly evident in connection with the ESBL testing of staff. Although the testing was voluntary, opting out placed nurses in a moral dilemma, as they would remain an unresolved piece of the puzzle. If the nurses chose to be tested, a positive result would create further uncertainty, as the implications of a positive test were not clearly defined.

Several nurses mentioned in the interviews that they would have resigned if they had tested positive. Nevertheless, most of the nurses chose to undergo testing. Although no one tested positive, our data suggest that the ward should have been better prepared, as the testing exposed nurses to considerable uncertainty and stress. 

Support from management, but stigmatisation from other wards

Shared leadership also entails supportive management, which has positive effects on nurses’ professional autonomy (22). The focus group interviews highlighted how a supportive manager was crucial for nurses being able to cope with the protracted outbreak.

Professional skills entail nurses’ knowledge being valued within professional collaborations (22). However, the nurses in this study felt demeaned and not respected in their interactions with professionals from other wards. A key finding of the study was the nurses’ experiences of stigmatisation from colleagues in other wards.

A scoping review of healthcare personnel’s experiences during the COVID-19 pandemic also revealed considerable challenges related to stigmatisation, both from other colleagues and from the general public, which caused psychological stress, anxiety, grief and depression (25). 

The ESBL-Kp outbreak was more stressful than COVID-19

Our study provides important insight into how even local outbreaks of resistant bacteria can lead to stigma similar to that experienced during pandemics. Although COVID-19 was a greater global threat, the nurses found the ESBL-Kp outbreak to be more distressing from a psychosocial perspective. Psychosocial distress should therefore be taken into account in future outbreak management planning.

The findings of this study indicate a need to develop competence across wards for managing resistant bacteria. Zingg et al. (26) emphasise the importance of the organisation taking responsibility for training and multidisciplinary collaboration in outbreak management. 

Better knowledge dissemination may have reduced the stigma experienced by the nurses and strengthened the professional collaboration between wards. It could also have had a positive effect on patient care, which the nurses perceived as diminished due to stigmatisation and a lack of knowledge about infection control.

A positive finding in the study was the significance of the working environment as a protective factor. The participants found support in one another and emphasised the importance of being able to share experiences and frustrations. This form of debriefing was particularly important because the nurses felt that no one else could understand the burden of working during an outbreak.

This finding is consistent with the literature highlighting the importance of social support as a buffer against burnout and turnover among nursing staff (27). Our findings underscore the importance of facilitating this type of support in outbreak situations, for example through structured debriefing sessions and open channels of communication.

Strengths and limitations of the study

Using a questionnaire as the basis for developing the interview guide ensured that the focus group discussions covered topics relevant to the nurses’ experiences during the outbreak. This strengthened the quality of the data and provided richer insights into the nurses’ professional challenges.

The study was conducted shortly after the outbreak ended, which enhances its trustworthiness, as the participants’ experiences were still fresh in their minds. Although the study only included a small number of nurses from a single ward, the results may be relevant for other healthcare workers experiencing various types of infectious outbreaks.

Conclusion

The study illustrates how an outbreak of resistant bacteria in a hospital ward can lead to nurses losing motivation and professional autonomy. The complexity and high level of competence required in the specialist health service highlight the importance of supporting staff during an outbreak.

Identifying nurses’ vulnerabilities in outbreak scenarios is crucial for safeguarding their mental and physical health. Understanding the stressors associated with an outbreak can help prevent nurses from resigning, thereby maintaining the level of expertise necessary to sustain a professional standard.

Lack of knowledge and an absence of outbreak action plans appeared to be key contributors to the negative experiences reported by the nurses. The study highlights the need for strategies that also protect the health and well-being of healthcare personnel in outbreak situations.

Acknowledgements

We would like to thank the nurses who shared their experiences in this study. We would also like to thank Sigrid Cecilie Skøyeneie and Elna Hamilton Larsen, who conducted the focus group interviews, and Sofie Nordby, who transcribed them. 

The authors declare no conflicts of interest.

Open access CC BY 4.0

Introduction

The COVID-19 pandemic in 2020 highlighted the need for increased intensive care capacity and improved preparedness in Norwegian intensive care units (ICUs). The competence of intensive care nurses was also brought into focus (1–3). There is no official register of intensive care nurses in Norway, but Statistics Norway estimated that approximately 2500 were employed in the country in 2019 (4).

The demand for treatment of acutely and critically ill patients is steadily increasing, driven by demographic changes such as an ageing population, longer life expectancy and advances in medical technology that enable new treatment methods and improved access to care (5, 6).

The Health Personnel Commission’s report, ‘Time to Act’, highlights the challenges and conflicts facing healthcare services in light of these demographic shifts and the increasing demand for treatment. The report also outlined the need for greater specialisation in the health service and the challenges of ensuring an adequate and competent workforce (6). 

Both nationally and internationally, efforts have been focussed on identifying measures to prevent future shortages of competence in intensive care nursing (2, 3). Many intensive care nurses do not anticipate working in intensive care until retirement age (7).

Hospitals not only struggle to retain intensive care nurses, but also to recruit new ones (6, 8). However, there is no large reserve of intensive care nurses, as many are already employed in other positions within the health sector, such as professional development and quality assurance (9).

Intensive care nursing is one of the occupational groups in Norwegian hospitals where staffing shortages are often addressed by hiring temporary agency staff, which is extremely costly for the health authorities (6). 

When exploring what motivates employees to remain in the profession, the concept of ‘attendance factors’ is relevant. Attendance factors relate to the personal sense of meaning in the daily work, psychosocial elements that increase the likelihood of staying in a job, and aspects such as relationships with colleagues, interesting tasks and effective leadership (10, 11). Attendance factors contribute to employee retention and reduce absenteeism. The opposite are known as non-attendance factors.

We conducted a systematic literature search prior to the study, which showed that earlier studies have largely focused on the negative aspects of the profession, such as physical strain, stress, burnout and leaving the profession (intention to leave). Only a few studies have examined the factors that promote intensive care nurses’ job satisfaction and encourage them to remain in the profession (intention to stay) (12–20). 

The studies described how the working environment and collaboration among intensive care nurses were important for job satisfaction (13–20). Research has shown that intensive care nurses who feel that their work is valued are more likely to remain in the profession. Being able to apply their own competence and experience in their work was also seen as meaningful (19, 20).

It was also considered important to be available to support people in vulnerable situations (16, 19). Other studies addressed the satisfaction that intensive care nurses derive from skills development (16). One study also showed a higher level of job satisfaction among intensive care nurses with more than ten years of experience compared to those with less experience (15).

None of the studies were conducted in a Scandinavian intensive care context, which is a significant limitation, as the organisation of hospital departments may differ and the role of the intensive care nurse varies. Moreover, the broader working conditions also differ considerably.

In order to maintain a high standard of care in the future, it is essential to retain intensive care nurses in the specialist health service (6).

Objective of the study

The lack of in-depth knowledge about attendance factors prompted us to investigate the factors that help retain experienced intensive care nurses in the profession. We based the study on the following research question:

‘What attendance factors do experienced intensive care nurses consider important for staying in the profession?’

Method 

The study had a qualitative design. We followed the COREQ checklist for reporting qualitative research (21). The first two authors are newly qualified intensive care nurses, the third author is an experienced intensive care nurse and manager, and the last author is a researcher with no intensive care background.

Sample and data collection 

In the period March–May 2023, we conducted nine semi-structured interviews with intensive care nurses from three ICUs at St Olav’s Hospital, Trondheim University Hospital. The inclusion criteria for participating in the study were patient-facing work as an intensive care nurse for at least ten years in a 70–100% position.

The participants had an average of 18.8 years of experience as intensive care nurses. Seven were female and two were male. Participants were recruited through email invitations sent to ICU managers and notices posted in staff rooms. All nurses who responded and wished to participate were included in the study. We first tested the interview guide with a pilot interview of an intensive care nurse who did not meet the inclusion criteria (Appendix 1 – only in Norwegian). 

The interviews were conducted in a suitable room within the department, lasting an average of 28 minutes and were audio-recorded. They were transcribed immediately afterward. Data saturation was reached after eight interviews; however, one additional male participant was included to ensure gender diversity in the sample.

The first two authors conducted the interviews. They were familiar with several of the participants through student placements and work. The participants were therefore assigned such that none of the authors interviewed their own colleagues.

Analysis

We analysed the interviews using systematic text condensation (22). The first authors conducted the analysis together. The data were analysed in four steps, with an additional fifth step added to obtain a comprehensive and refined overview of the categories (Table 1): 

1. We first read through the material to form an overall impression and identify preliminary codes.
2. The preliminary codes were used as a basis when we reviewed the data again to identify meaning units, which were then sorted into code groups.
3. We condensed and sorted the meaning units into subcategories within each code group.
4. The condensed text was compiled into a results section, forming an analytical text. The subcategories were then arranged into categories.
5. Finally, we grouped the categories into overarching themes. 

Ethical considerations

Sikt – the Norwegian Agency for Shared Services in Education and Research was notified of the study (reference number 769705). We also applied to the clinics’ research committees and department heads to recruit participants for the study. The Norwegian University of Science and Technology (NTNU) was responsible for the research in the study. We obtained written consent from all participants.

All data were treated confidentially and stored on a server at NTNU with two-step authentication. Data were anonymised in order to protect participants’ privacy, and we have not therefore given detailed descriptions of the participants. 

Results

The analysis resulted in the following themes: Meaning and variation, A good working environment and Development and professional engagement. 

Meaning and variation

Professional pride

All participants found it meaningful and rewarding to make a difference and to support patients in vulnerable situations, as well as their families. This was also important for job satisfaction. The intensive care nurses found it meaningful not only to see patients improving, but also to help ensure a dignified death when treatment was unsuccessful.

They found working with vulnerable people rewarding and considered their work to be beneficial to society. Participant 9 expressed it as follows: ‘If you find meaning in your work, you will stay.’

Several participants described many challenging situations in their work, but positive feedback on their efforts helped them cope with these situations. This contributed to a sense of professional pride among the intensive care nurses. 

Varied workday

A varied workday was described as a valuable attendance factor. The intensive care nurses found challenges and unforeseen events stimulating. The diversity of patients, the complexity and the unpredictability of their working day were described as important factors for job satisfaction.

Participant 9 described the working days as follows: ‘Two patients can have the same diagnosis but behave in two completely different ways. That’s what makes being an intensive care nurse stimulating, absolutely.’ 

Having varied work tasks was seen as positive. Flexibility and working days that are never the same were considered important. Some participants expressed that working directly with intensive care patients and monitoring postoperative patients was the most stimulating part of the job. Others enjoyed shifts where they had no responsibility for their own patients, allowing them to assist wherever needed. The variation was a key factor in remaining in the profession, and fostered curiosity about the field.

Having control over their working day and the ability to contribute to decisions regarding their tasks was central to job satisfaction. A varied workload was also highlighted as an essential factor. Several participants described busy and demanding working days, but noted that quieter periods balanced out the hectic ones. 

Participant 4 said: ‘It varies from day to day, week to week. Sometimes you have to work really hard, and other times there are slow days.’

Shift work was highlighted as a positive factor associated with a varied working day. It was crucial for the intensive care nurses to have input into their own shift rosters, which made shift work more manageable. Some preferred to avoid night shifts, while for others, aligning the roster with family life was important. 

A good working environment

Like a little family 

All the intensive care nurses highlighted supportive colleagues as one of the most central and valuable factors in their decision to remain in the profession. They described how a positive and supportive working environment contributed to job satisfaction and made working days more enjoyable. It helped them cope with stress during busy periods. They also mentioned a good working environment and a culture of mutual support.

The participants felt that they were good at looking out for each other. There was scope to support one another, both by asking for help and proactively offering to assist. The intensive care nurses also considered collaboration with other occupational groups to be meaningful and crucial for maintaining a good working environment. 

They found it reassuring to have competent colleagues. Participant 4 described the collegial environment as follows: ‘And we have really good colleagues in my department, people work very intensely together, you know. It’s kind of like a family.’

Several participants said that social gatherings outside of work helped strengthen relationships. They felt closer to one another, which in turn improved collaboration at work. Good relationships were seen as crucial for feeling secure at work and helped them have constructive conversations after challenging situations. Participant 7 said: ‘My work colleagues, I really like them, actually.’

Leadership

Having a manager who is reassuring and invests in employees’ well-being at work was crucial for job satisfaction. The intensive care nurses felt it was important for managers to give feedback while also being open to receiving feedback. A manager who motivates staff and encourages them to discuss difficult issues was considered important.

It was essential for the nurses that managers view the employees as individuals and treat them as equals. Participant 7 said: ‘I feel that my line manager acknowledges me, gives me positive feedback, greets me even when busy with other things, and encourages me to come to her if there is anything I want to discuss.’

Development and professional engagement

Professional development

The intensive care nurses expressed that personal development in their profession was a priority. Several highlighted how the departments make considerable effort to hold professional development days and courses. The participants highlighted the importance of having the opportunity to keep their theoretical knowledge and practical skills up to date, so they can competently use medical-technical equipment and care for critically ill patients.

Participant 6 said: ‘Professional development is important. It helps maintain interest in the field and keeps our skills up to date.’

Several participants mentioned their curiosity and interest for the profession. Sustaining interest in the field and nurturing curiosity made the working day more rewarding and increased job satisfaction. Many also felt that a professional environment with clinical discussions among staff was both necessary and beneficial, and that they could learn a lot from colleagues and students.

Professional confidence

Experience and professional confidence in the field and in working with the patient group made the work less burdensome and was essential for remaining in the job. The intensive care nurses considered experience a contributing factor in achieving a sense of calm in the working day and retaining a sense of control. They described this as ‘coasting on experience’, meaning their accumulated knowledge allowed them to navigate the work more easily.

Their experience could also be used to support colleagues. The intensive care nurses found that supporting less experienced colleagues was both rewarding and motivating. Participant 2 said: ‘I’ve encountered so many different situations, and many people come to me with questions. I’ve had feedback such as, “It’s so helpful that you know this”, “It’s good that you’re here”, and things like that, [it] really boosts your motivation’.

this”, “It’s good that you’re here”, and things like that, [it] really boosts your motivation’.

Discussion

We identified several factors that are crucial for the retention of intensive care nurses in the long term. There was general consensus among the participants on which attendance factors were important. 

Meaning and variation as motivators in the job 

Our study showed that intensive care nurses found meaning and experienced professional pride in their daily work, which had a significant impact on job satisfaction. According to Nytrø (23), content and meaning in the daily work are ranked highly as important working environment factors.

Professional pride can be considered a key attendance factor for intensive care nurses. Several studies indicate that feeling valued by patients enhances nurses’ sense of professional pride and meaning in their work (16, 19, 20).

The findings also showed that having flexible and varied tasks is important. The intensive care nurses viewed shift work in a positive light, as it provided more variety in their daily routines. Our findings thus contrast with previous research, which shows that shift work is largely perceived as a negative aspect of the profession (24). 

However, this positive attitude was contingent on having input into their own shift roster. Shift work can therefore be both an attendance factor and a non-attendance factor. This illustrates that the relationship between attendance factors and non-attendance factors is complicated and can vary between groups and individuals.

The complex interplay between attendance factors and non-attendance factors was also shown in a British study examining the relationship between intention to stay and intention to leave. The study showed that attendance factors did not necessarily prevent healthcare workers from leaving their jobs (25). The determining factor is the balance between non-attendance factors and attendance factors.

The intensive care nurses in our study regarded complex and unpredictable patients as a positive challenge. The tension helped prevent their daily work from becoming routine and boring. This finding aligns with research indicating that people who work with ICU patients enjoy challenging and fast-paced work (18, 20). Studies of attendance factors must therefore consider the characteristics of intensive care nursing. 

Research shows that intensive care nurses are often exposed to stress and burnout, which can result in them leaving their jobs (26). Our findings indicate that intensive care nurses like variation in their workload, but this requires a balance between busy and quiet periods. Task variation contributes to job satisfaction, whereas monotonous tasks lead to boredom and dissatisfaction (27). Thus, variation can be seen as a buffer against occupational stress. 

The importance of a good working environment and social support

Collegiality was highly valued by the intensive care nurses, who regarded fostering a good working environment as a shared responsibility. This finding is consistent with previous studies, which identify social support as one of the main factors for staff retention and job satisfaction (20, 27, 28).

Our study further shows that collegiality is essential for managing everyday work stress. This finding is supported by previous research, which indicates that social support mitigates the impact of high job demands. High turnover and workload pressures can lead to a poorer social environment and, consequently, a lack of social support (28).

Our findings also suggest that building good relationships with colleagues is often easier outside of work. Participation in social activities during leisure time enhances confidence and cohesion in the workplace. It is therefore important to initiate and facilitate such social gatherings. 

Earlier research shows that a good working environment has a significant impact on job satisfaction (14, 20). One study found that colleagues working with critically ill patients experienced a greater degree of peer support than those in departments with less seriously ill patients (20). The participants described the same phenomenon as in our study: colleagues become like a family.

Our findings indicate that a supportive manager who actively involves staff is an important attendance factor for intensive care nurses and contributes to job satisfaction. Previous studies show that intensive care nurses’ relationship with their manager impacts on whether they remain in their jobs. Strong support from their manager is crucial (27, 29, 30). Our findings confirm this and highlight the importance of managers encouraging collaboration and supporting staff in their daily work. 

Intensive care nurses’ professional engagement 

For the participants in our study, professional development and curiosity about the field were essential for remaining in the job. Earlier research shows that opportunities for personal development can reduce perceived work pressure while simultaneously enhancing job satisfaction. This, in turn, improves the ability to manage constantly changing job demands, thereby contributing to staff retention in the profession (27, 28).

A lack of development opportunities is one of the reasons why intensive care nurses choose to resign. ICUs are characterised by rapid technological advances, requiring staff to continuously update and expand their skills (28, 31). This aligns with our findings, where intensive care nurses emphasised that staying abreast of theory and practice is crucial for effectively managing tasks and maintaining control over their work.

Balance between job demands and control

The intensive care nurses regarded extensive work experience as valuable, as it made their work feel less burdensome. Experience builds confidence and can enhance their sense of control in the daily work. Nursing is a profession characterised by high job demands and limited control over the daily work (32, 33). Low perceived control combined with high job demands has been shown to contribute to work-related stress (33).

Experience does not necessarily guarantee better control over the unpredictable nature of the work, but intensive care nurses with extensive experience probably manage it more effectively. A certain degree of flexibility in the work organisation and shift rosters can also enhance perceived control. Our findings are consistent with the principles of the demand–control model, a classical framework in occupational health research (23).

One of the model’s two hypotheses, the ‘buffer hypothesis,’ posits that employees with social support at work and control over their tasks can withstand high job demands. Both the model and our findings can be used to promote attendance factors among intensive care nurses. Our results also align with a recent study, which concluded that remaining in the profession depends on a complex interplay of multiple factors over time (34). 

Strengths and limitations of the study

The study employed a qualitative design, allowing for a deeper exploration than previous questionnaire-based studies. New perspectives emerged, such as the significance of shift work and socialising with colleagues outside of work.

The study had clearly defined inclusion criteria, which enhances its validity. Although participants came from three different ICUs, they reported many of the same experiences. This suggests that the findings may be transferable to other ICUs. It may also have been a strength that we were familiar with some of the participants, as this facilitated recruitment.

Prior to the interviews, we developed an interview guide that was tested in a pilot interview. However, following the interviews, it became apparent that some questions could have been phrased differently to capture greater variation in the data. Another limitation is that the inclusion criteria may have excluded relevant participants who work fewer hours. 

The interview and analysis process may have been influenced by our preunderstanding and interest in the topic, something we were conscious of and discussed both before and during the research process. However, we believe the authors’ different backgrounds and preunderstandings strengthen the credibility of the findings. We analysed and discussed the findings together, which perhaps enabled us to identify more nuances in the data than if we had analysed it individually (22).

The study is based on a thorough, systematic literature search. However, it is possible that we failed to identify relevant ‘grey literature’. We also cannot rule out the possibility that our familiarity with some of the participants led to information being withheld (35). 

Conclusion

The study provides useful insights into attendance factors that may encourage experienced intensive care nurses to remain in the profession. The main findings highlight the importance of a good working environment, with strong relationships among colleagues and with managers. Professional development, extensive experience and a varied daily work routine, where nurses can contribute to decisions about their tasks, are also crucial.

The results can be used by managers and staff to maintain a balance between job demands, competence and control, and may also help improve nurses’ working day. Further research exploring attendance factors in greater depth is needed to develop targeted measures for retaining intensive care nurses in the profession. 

Siw-Cathrin Krybelsrud and Ane Kamsvåg share first authorship.

The auhtors declare no conflicts of interest.

Open access CC BY 4.0

Introduction

The transfer of responsibility and tasks from the specialist health service to the primary health service means that more and more specialised municipal services must be established (1). Ensuring patient safety and quality in ever more complex municipal health services makes high demands of RNs’ clinical assessment and decision-making skills (2, 3). 

Standardised scoring tools for early identification of exacerbation of somatic disorders and assessment of nutritional risk and risk of falls are recommended by health authorities at all levels of the health service, both nationally and internationally (4–7). The aim of the systematic use of scoring tools is to boost patient safety. They help create a common understanding in cooperation on patient care and provide a better basis for clinical decisions (8).

Systematic use of scoring tools in decision-making processes reduces the risk of inadequate assessments in clinical practice (9), helps confirm the intuition of experienced RNs in patient care (3, 10), and promotes accurate communication in cooperation with other health personnel (11). At an early stage, the Early Warning Score (EWS) tool can detect risks of somatic deterioration and death (12, 13). 

The risk of undernutrition can be identified by the systematic use of nutritional risk scoring tools, and undernutrition can be prevented through the early initiation of nutritional treatment (14). Identification of fall risk may make health personnel and patients more alert to this risk, and serious injuries can be reduced by initiating individual and evidence-based interventions (15). 

However, a number of studies emphasise that the use of scoring tools must always be adapted to the context. They must be used in combination with clinical judgement and should never be the sole decision-making basis (11, 16–19).

The objective of the study

The objective of the study was to gain an overview of the use of clinical scoring tools in MIPAC services in Norway. We wanted to examine whether geographical region, organisation, location and structural factors led to differences in the use of scoring tools.

Background

The study sets focus on MIPAC services, an important measure in the Coordination Reform. The aim is to provide 24-hour emergency beds for acutely ill patients in order to reduce unnecessary hospitalisation (20). 

Older patients and patients with chronic disorders and complex health challenges are an important target group. As these patients are in acute need of care, RNs must make rapid, precise and accurate clinical assessments and decisions in diverse situations (2, 3). 

The law allows for MIPAC units to be freely organised in accordance with the local context, infrastructure and available resources in the individual municipality (21–23), leading to considerable variation nationally in the organisation of the services (24, 25). 

Table 1 shows the Norwegian Directorate of Health’s national reporting on the extent, location and patient populations for MIPAC services in 2019 (26). Patient data on sex, age and reason for admission have remained relatively stable since 2017 (27).

Appropriate use of scoring tools challenges and promotes clinical competence (12, 16, 18, 19). Units vary in respect of competence, the proportion of registered nurses and the proportion of nurses with specialised competence, as well as whether there is a contracted, designated doctor. These differences are partly related to structural frameworks and the diverse organisation of the services (21–24). 

Competence is often low in MIPAC units located in long-stay units in nursing homes, particularly in Central and Northern Norway (24). Structural factors that promote competence include a high percentage of RNs on the staff, organisation in short-stay units, intermunicipal cooperation and the establishment of a professional development nurse position (3, 23).

This study explores the use of scoring tools for early identification of exacerbation of somatic disorders. The tools included EWS and the sepsis scoring tools in use at the time of the investigation: qSOFA and SIRS. We also examined the use of scoring tools to assess fall risk and nutritional risk.

The health authorities expect these decision-making support tools to be applied in RNs’ decision-making processes at all levels of primary care. As there was little knowledge of the extent to which these tools were systematically used in MIPAC services, we formulated the following research questions:

1. To what extent are scoring tools used in MIPAC services in Norway?
2. Are there differences in the use of scoring tools countrywide and in the organisational context?
3. Can structural factors explain why the use of scoring tools to support decision-making varies in MIPAC services? 

Method 

Design

To acquire knowledge about the systematic use of scoring tools in Norway’s municipalities, we conducted a cross-sectional study among first-line managers at MIPAC units. An online questionnaire was used in the data collection. We chose first-line managers as respondents because we believed that they were best qualified to answer the questionnaire. 

Sample and recruitment

For information about the location of MIPAC services in Norway, we used an email list from the Norwegian Directorate of Health supplemented with information from the host municipalities. We obtained contact information for the first-line managers from the respective municipalities. We assumed that first-line managers had best knowledge of the units and were therefore best qualified to answer questions on their use of scoring tools. 

A total of 226 units (100 per cent) with MIPAC beds were identified. First-line managers were contacted by telephone and asked to participate after having received oral information about the study. We obtained email addresses from those who wished to participate and sent them an information letter and a link to the digital questionnaire.

Data collection

The questionnaire used in this study (Attachment 1) was developed by the first, second and third authors based on our previous research (3). It was also used in a study to identify nursing competence in MIPAC services (24).

We use the online platform SurveyXact to gather data over a three-month period. The questionnaire was distributed on 6 March 2019 and data collection ended on 6 June 2019. Two reminders were sent. 

Variables

The respondents were asked to state how often the following scoring tools were used: a) EWS, MEWS, NEWS or TILT, b) sepsis scoring tools in use when we gathered the data: SIRS or qSOFA, c) fall risk scoring tools and d) nutritional risk scoring tools. 

The response categories were ranked from 1–4 (1 = not used, 4 = always used). These variables were dichotomised (0 = not used, 1 = used). Geographical location (region) was dichotomised into a) South-Eastern Norway and Western Norway, and b) Central Norway and Northern Norway. This categorisation was based on earlier studies showing that the percentage of RNs on the staff and the percentage of units with standardised competence requirements vary from region to region (24). 

The different types of MIPAC units were classified as: a) MIPAC unit only, b) MIPAC and short-stay unit, c) MIPAC and out-of-hours medical services, d) MIPAC and local medical centre, e) MIPAC, short-stay and long-stay unit, f) MIPAC and long-stay unit dichotomised into short-stay units (a, b, c, d) and long-stay units (e, f).

Respondents were further asked to state the number of RNs, and we calculated the proportion of RNs on the staff (percentage). The respondents were also requested to estimate the full-time equivalent for the professional development nurse position. This was dichotomised into ‘no’ (none) and ‘yes’ (> 1 per cent). Consequently, the unit had to have a professional development nurse working a minimum full-time equivalent of 0.01 for the response to be categorised as ‘yes’. 

We conducted a pilot test of the questionnaire whereby five people from the target group provided feedback on logic, comprehensibility and structure in order to evaluate face validity. Their feedback resulted in some minor changes. 

Ethics

The study was conducted in accordance with the Declaration of Helsinki (28), and was evaluated by the former Norwegian Centre for Research Data (NSD), now Sikt - Norwegian Agency for Shared Services in Education and Research, on 28 January 2019 (reference number 815471) and the Research Ethics Committee at the Faculty of Health and Sport Sciences, University of Agder (reference number MSG1715203). 

The participants were contacted individually and received oral and written information about the study. The written information included a description of their legal rights in respect of participation. They were informed that participation was voluntary, and that responding to the questionnaire was regarded as consent. Anonymity was also guaranteed by the deidentification of individuals in reports and publications. 

Analysis

To describe the sample and the units’ reported use of the various scoring tools, we presented the data as number (n), percentage (%), median and interquartile range (IQR)). We also used the Mann-Whitney test and calculated the effect size (Cohens r) based on Z-statistics (r = z / √N) (29). 

Finally we carried out four multiple logistic regression analyses. Dependent variables are the use of Early Warning Score, sepsis score, fall risk score and nutritional risk score (yes/no). Independent variables are region (South-Eastern/Western Norway and Central/Northern Norway), type of unit (short-stay and long-stay unit), organisation (intermunicipal/municipal), professional development nurse position (yes/no) and the proportion of RNs on the staff (percentage).

The results of the regression analyses are presented as unstandardised regression coefficient (B), 95 per cent confidence interval (CI) for regression coefficient (B) and odds ratio (OR) for B. The strength of the regression model is estimated by calculating the regression coefficients (Cox and Snell r² and Nagelkerke r², giving the lower and upper limits for explained variance. 

The threshold for statistical significance was set at p < 0.05, and all tests were two-tailed. Missing data were excluded from the analysis. We conducted the analyses using IBM SPSS Statistics version 29. 

Results 

The study included 207 MIPAC units, representing 91.6 per cent of the population. A total of 108 units were located in South-Eastern and Western Norway, 42 of which (39 per cent) were intermunicipal MIPAC units. Of the 99 units located in Central and Northern Norway, 22 (25 per cent) were intermunicipal MIPAC units. Some 101 MIPAC units had managers with responsibility for long-stay units and MIPAC beds. 

A total of 64 (63 per cent) were located in Central and Northern Norway. The median percentage of RNs on the unit was 56 (IQR: 38‒ 78), and 109 (55 per cent) of the units had an associated position for a professional development nurse. Some 59 per cent of the MIPAC units located in South-Eastern and Western Norway had a professional development nurse position while in Central and Northern, the percentage was 46 per cent. The number of MIPAC beds in the units varied from 0.2 to 34.

Systematic use of scoring tools in MIPAC services

Some 56 per cent of the MIPAC units in the sample often or always used EWS, while 28 per cent did not use the tool. Furthermore, the results showed that 46 per cent of the units used the current sepsis score often or always for patients when infection was suspected, while 36 per cent did not use sepsis scoring tools.

The results also showed that 45 of the MIPAC units often or always used fall risk scores for at-risk patients while 34 per cent never used this score. Scoring of nutritional risk was often or always used in 55 per cent of MIPAC units in Norway, while 23 per cent did not use such tools (Table 2). 

Differences in systematic use of scoring tools across region and organisation 

The results showed that EWS was used much more often in MIPAC units in South-Eastern and Western Norway than in Central and Northern Norway. EWS was more frequently used in MIPAC units organised under short-stay units than those organised under long-stay units. 

Moreover, we found that EWS was more frequently used in intermunicipal in-patient acute care units than in municipal units, but the differences were smaller. Sepsis scores were used slightly more often in South-Eastern and Western Norway compared with Central and North Norway. They were more often used in intermunicipal in-patient acute care units than in municipal units, and also more often in short-stay units than in long-stay units (Table 3). 

Fall risk scoring tools were more frequently used for fall risk patients at short-stay MIPAC units than long-stay units. There were no significant differences in the use of fall risk scores either regionally or between intermunicipal and municipal units. 

As regards the use of nutritional risk scoring tools, we found that they were more often used in municipal units than in intermunicipal units. There were no differences in their use regionally or between long-stay units and short-stay units. 

Structural factors and variations in use of scoring tools in RNs’ decision-making processes 

The regression model explained between 15 and 22 per cent of the variance in use of EWS, while the explanatory power was lower for sepsis scoring tools (9–13 per cent), fall risk (7–10 per cent) and nutritional risk (7–11 per cent) (Table 4).

The presence of a position for a professional development nurse in the unit was significantly associated with greater use of both EWS and nutritional risk scoring tools, with an odds ratio of 2.56. This means that the probability of using these scoring tools is over 2.5 times greater in units with a professional development nurse than in those that do not. 

Moreover, a higher proportion of RNs on the staff was significantly related to greater use of sepsis scores, but the effect was relatively small (OR 1.02). However, this estimate indicates that if the percentage of RNs on the staff is increased by 10 per cent, in all likelihood the use of sepsis risk scoring tools will increase by 20 per cent. 

In the case of MIPAC beds located in short-stay units and organised as an intermunicipal service, there was a negative association with the use of nutritional risk scoring tools (OR = 0.32). This demonstrates that such scoring tools are more frequently used in MIPAC units that are not part of an intermunicipal service. 

In addition, we identified regional differences whereby the probability of using fall risk scoring tools in MIPAC services in Central and Northern Norway was twice as high as in South-Eastern and Western Norway (OR = 2.04).

Discussion

The main findings in this study show that less than half of the MIPAC units used scoring tools systematically to support RNs’ decision-making in clinical practice. Although EWS is the most frequently used scoring tool, one-third of the MIPAC units do not use it. 

We also detected a geographical variation: EWS is used considerably less in Central and Northern Norway compared with South-Eastern and Western Norway. Fall risk and nutritional risk scoring tools are used systematically in approximately half of the MIPAC units. 

Furthermore, the study revealed that structural framework conditions such as the presence of a professional development nurse play an important role in the use of scoring tools. The probability of using both EWS and nutritional scoring tools was over two and a half times greater in units with a professional development nurse than in units without.

These findings may indicate that there should be greater focus on the value of systematic use of scoring tools in clinical practice.

Use and variation in use of scoring tools in MIPAC services 

The results of this study show that RNs in MIPAC services use scoring tools systematically to some extent or little extent as a decision-making tool in clinical practice. This is not in line with the health authorities’ recommendations (4, 5, 35). It appears that EWS is the most frequently used decision-making support tool of those examined in the study.

Our results indicate that EWS is used systematically in just over half of the Norwegian MIPAC units. National clinical guidance strongly recommends it as a tool for early detection and rapid response with regard to the deterioration of somatic conditions. It is crucial for ensuring patient safety, improving treatment results and reducing the risk of serious complications (5). 

Therefore, the finding that approximately one-third of Norway’s MIPAC units do not appear to use scoring tools to detect early deterioration of somatic conditions is surprising. Infection symptoms are among the most common diagnoses on admission to MIPAC units and are difficult to identify at an early stage solely based on clinical judgement without systematic and objective observations. Many of the older patients admitted have unpredictable and complex health conditions (2, 3, 30). 

Therefore, it is worrying that as many as one-third of the services have not implemented these systems in the municipality’s highest level of care for acutely ill patients. Infections can escalate quickly and develop into serious, life-threatening diseases if the correct medical treatment is not initiated in time (31). 

Scoring tools also help ensure that communication between RNs and doctors is relevant and accurate, so that essential treatment can be initiated as early as possible. Effective and confident decision-making in clinical situations is linked to adequate communication and a common understanding of clinical terminology (5, 32). 

In telephone communication between RNs and doctors, the precise and relevant information represented by EWS and sepsis scores is of decisive importance in ensuring rapid and appropriate medical treatment. In many of the municipal institutions with MIPAC services, a doctor is not always present so that out-of-hours medical services or the emergency medical assistance number 113 must be contacted (25).

The results show that sepsis risk scoring tools are used less than EWS. One explanation may be the finding in a 2016 study that EWS predicts serious illness more precisely than qSOFA. Consequently, the use of more traditional tools such as EWS was recommended (17). The Norwegian Directorate of Health’s current recommendations for sepsis treatment also state that qSOFA is not effective in detecting the development of sepsis and NEWS2 is therefore recommended (33). 

A Norwegian doctoral thesis (30) points out that EWS tools have an important function in the municipal health and care services. They are effective in combination with clinical judgement in predicting clinical response and death (17). However, they are not applied entirely as intended because they are not adapted to the organisational structure or the older patient group (18, 19, 34). 

As in hospitals, the organisational structure of MIPAC services is well adapted to the use of scoring tools to identify the exacerbation of somatic disorders and sepsis. If MIPAC units are to replace hospital treatment or offer as good quality services as hospitals, the use of EWS in 24-hour emergency units such as MIPAC units should be a minimum requirement.

The results showing less use of EWS and sepsis risk scoring tools in Central and Northern Norway as well as in long-stay units may be due to the lower proportion of RNs and doctors at units in these regions (24). Central and Northern Norway have fewer units with professional development nurse positions than South-Eastern and Western Norway. 

However, previous research shows that the patient groups in the various MIPAC units varied considerably. Units with high nursing competence and good doctor coverage admitted a greater number of older patients with complex health conditions. Units with fewer resources had strict inclusion and exclusion criteria, and rejected patients if they could not give them proper care (34). This may explain why smaller MIPAC units find systems such as EWS and scoring tools less relevant.

Nevertheless, older patients with diffuse and subtle symptoms may be admitted to MIPAC units that do not have sufficient competence (3). Conditions that are not perceived as serious on admission can quickly deteriorate. For example, an infection may need to be identified at an early stage to prevent serious outcomes such as sepsis (5, 31). A complex clinical picture in older patients underlines the importance of offering adequate treatment at the correct level of care.

The fact that scoring tools are not used systematically can also be partly explained by how challenging it is to access competence and resources for professional development (23, 24). Moreover, health personnel do not always find the tools useful because they are not sufficiently well-adapted to the context or patient group (17, 19).

Our results show that fall risk and nutritional risk scoring tools were used systematically by approximately half of the MIPAC units. However, the results also demonstrate that a considerable number of units, one-third and one-fourth respectively, do not use these tools. 

One possible explanation is that there may be different understandings of the responsibilities inherent in the mandate of MIPAC services, or that assessment of fall risk and nutritional risk are not regarded as relevant in emergency situations. If so, this is not in line with national clinical guidance on fall prevention in older patients (35) or national clinical guidelines for the prevention and treatment of undernutrition (4), where it is emphasised that early, systematic identification of risk is required.

The importance of structural factors for systematic use of scoring tools 

The results show that structural framework conditions are associated with variation in the use of the scoring tools included in our study. The explanatory value is highest for the use of EWS and somewhat lower for sepsis, nutritional and fall risk scores. An interesting finding, nevertheless, is that the probability of using fall risk scoring tools is twice as great for MIPAC services in Central and Northern Norway. 

This result may be due to the fact that a greater proportion of 24-hour emergency beds are located at long-stay units in Central and Northern Norway than in South-Eastern and Western Norway. This may mean that in long-stay units, the prevention of falls is prioritised and more often practised in long-stay units. 

However, having a professional development nurse position in the unit emerges as the most important factor in our model. The odds of using EWS and nutritional risk score was over two and a half times greater in units with a professional development nurse. The results of the regression model indicate that the differences we found between municipal and intermunicipal in-patient acute care beds can probably be attributed to the fact that intermunicipal services had the advantage of better access to resources since several municipalities bear the costs (21). 

This allows units to have a professional development nurse and more RNs on the staff. Overall, these results indicate that the following are vital for knowledge-based practice in MIPAC services: nursing competence, nurses with specialised education or master’s degree qualifications, and clinical development positions in line with national guidelines and advice. 

Strengths and limitations of the study

A limitation of studies with a cross-sectional design is that they can only describe the actual situation at a particular point in time. Our study was based on data from 2019, and the situation may be different today. Introducing scoring tools means that work processes change, and both resources and time are required to implement changes in clinical practice. Consequently, the study may be relevant for current practice. 

A strength of our study is that all MIPAC units are included in the sample, and the response rate is over 90 per cent. Even though we attempted to include all municipal in-patient acute care units, it was challenging to acquire a total overview because these municipal services constantly changed their location and organisation. Even though we made every attempt to include the whole population, some units may have been overlooked. 

Conclusion

The study shows that the use of scoring tools in MIPAC services varies and that their systematic use in Norway is limited. In many units, the tools do not form part of RNs decision-making basis. The complex, unpredictable health of acutely admitted patients challenges RNs’ assessment and decision-making skills. Appropriate use of scoring tools can supplement nurses’ competence, and support quality and patient safety. 

The target group for MIPAC services indicates that there is a need for scoring tools, both to identify life-threatening conditions at an early stage, and to detect the risk of falls and undernutrition in short- and long-term situations. The fact that these scoring tools are not used systematically in all MIPAC units represents a challenge to patient safety, and indicates that patients are subject to differential treatment depending on where they live. 

Having a position for a professional development nurse can promote greater use of scoring tools in MIPAC services. More research is needed to understand the reasons for the variation in the use of scoring tools, and the possible consequences for patient safety when these are not used systematically. 

The auhtors declare no conflicts of interest.

Open access CC BY 4.0

Introduction

Midwives play an important role in the health service (1, 2). Their well-being and sense of security in the workplace affect the quality of care they provide to pregnant women and their families (3, 4).

Women report a more positive birth experience and a greater sense of security when supported by a midwife throughout the entire birth process. This can influence the use of pain relief (3, 5) and birth outcomes, such as fewer caesarean sections and fewer interventions (3, 6).

However, there is a known shortage of midwives, and the Norwegian Health Personnel Commission has estimated a shortfall of 600 full-time midwife positions by 2040 (7). Moreover, it is not uncommon for midwives to experience traumatic births or other adverse events at work (8, 9), which may help explain why some leave clinical positions.

Some pregnant women have complex health needs. Maternal age is higher than before and an increasing proportion are immigrants, which underscores the need to strengthen midwifery capacity in Norway (1). 

However, the Norwegian Directorate of Health reports that one in five midwives have considered leaving the profession (2). A recent report from the National Audit Office of Norway shows that the capacity of midwifery education programmes in Norway is lower than the demand. Staffing challenges are increasing, and long-term staffing shortages can have serious implications for the service provision (10).

If the health service provides good support for newly qualified midwives, they are more likely to remain in the profession longer. This is important in light of the current shortage of midwives, limited educational capacity and lack of clinical placements (1, 2).

A systematic review examining how adverse events affect midwives and nurses highlights the need for a stronger focus on these occupational groups in order to strengthen their ability to cope with adverse events at work and to regain the professional confidence needed to stay in the profession (9).

Studies from Norway, Sweden and Turkey have shown that one in five or more midwives develop symptoms of burnout (11, 12) and that many midwives and nurses in the field report symptoms of post-traumatic stress following adverse events at work (13–15). 

The findings are supported by a British study, which concluded that midwives who experienced traumatic events at work also reported symptoms of burnout and stress (16).

An Italian study found that midwives are at increased risk of burnout after just five years in the profession (17). It also identified an association between burnout and exposure to stressful events, particularly among midwives who had been involved in stillbirths (17).

A Swedish study also shows that midwives working shifts and with little experience are particularly vulnerable to burnout (18).

A Dutch cross-sectional study investigated the prevalence of potentially traumatic events in the workplace, health-related symptoms and support systems among paediatricians, gynaecologists and orthopaedic surgeons (19).

The study concluded that these groups are frequently exposed to events with a high emotional impact over the course of their career (19). A lack of guidelines for follow-up and support after traumatic events was associated with an increased incidence of post-traumatic stress among employees (19).

The Dutch study did not include midwives (19), an occupational group in Norway that often encounters the same traumatic events described in the study. We based our work on the validated questionnaire used in the Dutch study (19) and conducted a cross-sectional study to examine the characteristics of newly qualified midwives in Norway who experience adverse events at work. 

Objective of the study

The objective of the study was to examine the coping strategies used by newly qualified midwives and their reactions following adverse events at work. We were particularly interested in differences between those who had considered leaving or had already left the profession and those who chose to stay.

The study also mapped the follow-up that newly qualified midwives received and would like to receive from their employer.

Method

This is a cross-sectional study. Participation was open between 13 November and 4 December 2023 via the website nettskjema.no. We used the STROBE checklist for cross-sectional studies to quality assure this article.

Adverse events

It is uncertain how to best define an adverse event in obstetrics and how common it is to experience adverse events at work as a midwife (9). In this study, the participants themselves defined what they considered to be an adverse event at work.

Sample

The sample in our study was recruited through self-selection and snowball sampling (20). The study includes newly qualified midwives in Norway who graduated between 2018 and 2023.

Recruitment

A poster with information about the study was posted in the Facebook group ‘Midwives in Norway’ (Jordmødre i Norge). At the time of recruitment, the group had 3100 members. We also contacted the administrators of 20 Instagram accounts representing various maternity units in Norway.

Additionally, we contacted the Norwegian Midwives Association and the NSF Midwives Union in the hope that they could distribute the survey to their members. The NSF Midwives Union declined the request due to lack of capacity.

One week after starting recruitment, we found that the study had few respondents from certain regions. We therefore posted a new message in the Facebook group ‘Midwives in Norway’, encouraging members to share the survey with midwives from underrepresented areas.

The mailrooms at all health trusts in Norway were also emailed information about the study, with a request to forward the study information to the maternity units in their region.

Devising the questionnaire

The questionnaire used in this study was based on part of a validated questionnaire aimed at gynaecologists in a Dutch cross-sectional study (19). The final questionnaire used in our study consisted of 25 questions (Appendix 1 – only in Norwegian).

The appendix shows which questions were inspired by the Dutch study (n = 17) (19) and the Swedish study (n = 2) (14), and which were specifically developed for our study (n = 6). All questions included were carefully selected based on their relevance to the study's objectives.

The questions from the Dutch study were translated into Norwegian using a four-step process described by Tsang et al. (21). In the first step, the English questionnaire was translated into Norwegian. In the second step, the Norwegian version was translated back into English. 

In the third step, the questionnaire was adapted to midwifery. We also contacted the first author of a research article based on a Swedish study in which the authors had investigated post-traumatic stress reactions in midwives and gynaecologists (14).

The authors of this study received the validated questionnaire from the Swedish study by post. We included two of the questions from the Swedish questionnaire in order to better address the aims of our study (14).

Finally, we formulated six questions that were unique to this study. We conducted a pilot study as part of the fourth and final step in the quality assurance of the final questionnaire (21).

We then pilot-tested the survey with 14 midwives and midwifery students who did not meet the study’s inclusion criteria. Feedback from the pilot study regarding the response options was taken into account in the final version of the questionnaire.

Collected data

This study included the following background characteristics: age group (24–34 years, 35–44 years, 45 years and older), region (Northern Norway, Trøndelag, Western Norway, Eastern Norway, Southern Norway), workplace (primary health service, specialist health service, non-clinical, private practice, non-midwifery work, other, free text), change of department or duties after adverse events (yes, no), and adopting a more cautious approach (agree/strongly agree, disagree/strongly disagree).

We collected data on whether the midwives in the study had considered leaving the profession (yes, no, already left). We also collected their descriptions of what they defined as adverse events (critical situations involving risk to life, deaths of pregnant women, women in labour, postpartum women, or newborns, overlooked risk factors, inability to help patients, uncertainty about whether you made the right decision, feelings of guilt, negative reactions from parents, being left to their own devices, other, free text). 

Reasons given for quitting or considering quitting their job were also collected (pressure of work, adverse events, low pay, lack of autonomy, understaffing, medicalisation, the burden of shift work, non-work-related challenges, other, free text), as well as reasons for staying in the profession (job satisfaction, working environment, variety, other).

We also collected information about the midwives’ coping strategies following adverse events (not applicable, continuing as before, seeking professional help, going home as soon as possible, drinking more alcohol, smoking more cigarettes or using more snus, taking medications or drugs, finding a distraction, religious activities, formal case review, debriefing, working out or doing a hobby, talking to friends or family, sick leave, quitting, other).

Physical reactions were also mapped (burnout symptoms, thoughts about personal suitability, stress reactions, feelings of guilt).

In addition, we collected data on perceived support (lack of support from manager, colleagues, friends or partner, negative debriefing, feeling of being talked about behind one’s back), follow-up guidelines (yes, no, don’t know), follow-up after the event (debriefing by management, informal conversations with manager), and desired changes in practice (access to a psychologist, occupational health service for debriefing, temporary accommodations, cautious discussion in group sessions, one-on-one conversation with manager, more management involvement).

Free-text responses from the survey are attached (Appendix 2 – only in Norwegian).

Analysis

Based on concerns about a growing shortage of midwives in Norway, the material in the study was divided into two groups: those who had left or were considering leaving the profession as a midwife (n = 50), and those who were not considering leaving the profession (n = 69).

This division made it possible to identify risk factors, resources and coping strategies that may be effective in supporting newly qualified midwives early in their careers.

The results are presented as absolute numbers, percentages and p-values. The variables in this study are categorical. To assess differences between the groups, we used Pearson’s chi-square test. The null hypothesis (H0) was that there were no significant differences between the groups studied, while the alternative hypothesis (Ha) indicated a possible difference.

P-values were reported to evaluate the validity of H0 (22). In line with common practice in studies calculating p-values, the significance level was set at p < 0.05. By comparing midwives who had either left or were considering leaving with those who were not considering it, the aim was to identify any differences between the groups.

We analysed the data using IBM SPSS Statistics 29.0.0.0 and Microsoft Excel version 2307.

Ethical considerations

This study was conducted in accordance with the Declaration of Helsinki (23) and was deemed not subject to review by the Regional Committee for Medical and Health Research Ethics (REK), in accordance with section 2 of the Health Research Act (reference number 674038, REK North).

The data in the project were stored and handled in accordance with UiT The Arctic University of Norway’s guidelines for secure storage, collection and processing (24). The information and consent form were prepared using a template from Sikt – the Norwegian Agency for Shared Services in Education and Research.

The survey was anonymous, and respondents could withdraw at any time before submitting the questionnaire.

Results

Table 1 shows the characteristics of the respondents. Of the 119 newly qualified midwives included in the study, 42.0% reported that they had either left (n = 3) or were considering leaving (n = 47) the midwife profession.

Among those who were not considering leaving, a greater proportion were aged 35 or over (p-value < 0.04) compared to the group of midwives who had left or were considering leaving. Regardless of whether the midwives were considering leaving or not, the largest group of respondents were from Eastern Norway, followed by Western Norway and Northern Norway.

The midwives had the option to select more than one current workplace from the categories ‘primary health service’, ‘specialist health service’ and ‘other’.

Table 1 shows that the majority of newly qualified midwives worked in the specialist health service. Among those who had left or were considering leaving, 84.0% worked in the specialist health service. All those who were not considering leaving worked in the specialist health service. 

The group of midwives who had quit or were considering quitting their job changed departments or duties more frequently (p-value < 0.001) compared to the group who were not considering quitting.

A considerable proportion agreed or strongly agreed with the question of whether they had adopted a more cautious approach to their work: of those who had quit or were considering quitting, 86.0% agreed. In the group not considering quitting, 75.4% agreed.

Figure 1 shows the types of events that the newly qualified midwives defined as adverse events related to their work. Maternal and perinatal deaths or situations where lives were at risk were the most commonly reported types of adverse events identified by participants in relation to their work.

In addition to predefined categories, the midwives provided the following free-text responses (n = 6) when asked what they would describe as an adverse event in relation to their work:

‘When the person on duty/responsible midwife seems dissatisfied with my work’, ‘Negative comments from more experienced midwives’, ‘When I am sent around different departments without training in those departments’, ‘Not being able to meet patients’ needs due to staffing or budget constraints; closed delivery rooms’, and ‘Neonatal asphyxia, leading to the baby requiring therapeutic hypothermia’.

Figure 2 shows the reasons midwives gave for not quitting the profession (A), or for quitting or considering quitting the profession (B). Job satisfaction (n = 66) was the most common main reason for staying in the profession. The dominant reasons midwives gave for considering quitting their job included pressure of work or workload (n = 42), the burden of shift work (n = 37) and low staffing levels (n = 35). 

After experiencing adverse events at work (Figure 3), the majority in both groups requested debriefing with colleagues (n = 58 and n = 35), followed by talking to friends or family (n = 29 and n = 30), and working out or doing a hobby (n = 16 and n = 13).

Table 2 presents the physical reactions of those who had quit or were considering quitting, compared with those who were not considering quitting. Midwives who had quit or were considering quitting experienced symptoms of burnout to a greater extent (p-value < 0.001) and were more likely to question their suitability for the job (p-value < 0.001) than those who were not considering quitting.

Midwives who had quit or were considering quitting (68.0%) as well as those who were not considering quitting (68.1%) reported experiencing physical stress reactions when reminded of adverse events they had faced.

When asked about feelings of guilt after adverse events, 86.0% of those who had quit or were considering quitting and 71.0% of those who were not considering quitting said they had felt this way.

In connection with adverse events, it emerged that the midwives who had quit or were considering quitting the profession had experienced a lack of support from their manager (50.0%) and a feeling that others had been discussing the incident behind their back (50.0%).

Several in the group who were not considering quitting experienced neither of these (50.7%) (Table 3).

Overall, 46.2% of the newly qualified midwives (48.0% in the group who had quit or were considering quitting, 44.9% in the group who were not considering quitting) reported that their workplace had guidelines for follow-up related to adverse events. Such follow-up mainly consisted of debriefing organised by management (75.0% in the group who had quit or were considering quitting, 90.3% in the group who were not considering quitting).

A greater proportion of those who had quite or were considering quitting agreed or strongly agreed that follow-up after adverse events at the workplace should be improved, compared to those not considering quitting (p = 0.003). 

The midwives who had quit or were considering quitting responded that the following factors were important for improving follow-up: greater understanding from management of the midwife’s responsibilities and the impact of the job on midwives (76.7%), increased engagement from management regarding long-term processing (74.4%), and caution when discussing incidents in group sessions (67.4%).

The group who were not considering quitting highlighted the offer of a one-on-one conversation with their manager (61.9%) and greater engagement from management regarding long-term processing (61.9%) as the most important measures for improving follow-up, followed by greater understanding from management of the midwives’ responsibilities and the impact of the job on them (59.5%).

Discussion 

The findings of this study show that good working conditions and a positive working environment are important for newly qualified midwives who wish to continue in the profession. A large proportion (42%) of the newly qualified midwives in our study had left or were considering leaving the profession.

Reasons for wanting to leave the profession included high workload, demanding shift work and low staffing levels. More of those who had either quit or were considering quitting reported having changed department or duties, increased burnout and feelings of inadequacy than those who were not considering quitting.

Regardless of whether the midwives were considering quitting or not, nearly 70% reported experiencing physical stress reactions when reminded of adverse events they had faced. 

Coping strategies after adverse events at work included debriefing with colleagues and conversations with friends and family.

Furthermore, this study shows that over 40% of respondents were uncertain about existing guidelines for follow-up after adverse events in the workplace, while over 70% expressed a desire for changes in how such events were handled.

Good working conditions and a positive working environment were identified as important factors for newly qualified midwives wanting to remain in the profession. This finding aligns with results from other studies (25–27).

Nearly half of the newly qualified midwives in our study were considering leaving the profession or had already left. Common reasons included high workload, demanding shift work and low staffing levels. Newly qualified midwives should have a long career ahead of them (2).

However, studies show that young midwives are overrepresented among those considering leaving the profession (25, 28). A recent exploratory review highlights that midwives often leave the profession due to factors such as job-related stress, the burden of shift work and lack of support from management or colleagues (25). 

An Australian study shows that midwives tend to stay in the profession if they have good relationships with colleagues and are passionate about their work (26). A review article, which also includes the Australian study, adds that midwives are likely to remain in the profession if they enjoy their job, have professional pride, satisfactory pay and flexibility regarding voluntary part-time working (27).

Furthermore, studies from Norway, Sweden and the United Kingdom show that young midwives with little work experience appear to have a particularly high risk of work-related stress and burnout compared to their older colleagues (12, 18, 29).

To retain newly qualified midwives in the profession, it is important to examine the reasons why they might want to leave. The reasons highlighted in this study align with findings from a study in Australia (30) and a report from the National Audit Office of Norway which showed that high workload is a typical reason why midwives and nurses work part time (31). 

High workload can partly be explained by the fact that an increasing number of pregnant women have complex health needs. Reasons include older maternal age and an increasing proportion of immigrants (1, 32, 33), which affect both staffing and financing (1).

Our study shares many similarities with other Norwegian studies (34, 35). It shows that there is a need to implement measures to reduce workload and involuntary part-time working, evaluate shift rotas and improve baseline staffing to retain midwives in the profession.

A Norwegian study adds that opportunities for professional development and good relationships with other occupational groups are important factors for staying in the profession (34). Intervention studies are needed to test the effect of the various measures.

Debriefing is a coping strategy

One of the findings of this study was that coping strategies after adverse events included debriefing with colleagues and talking to friends or family. This finding is consistent with a 2020 systematic review, which shows that midwives and nurses seek support from colleagues, management, family and friends after experiencing adverse events at work (9).

Debriefing with those closest to them, both at work and in their personal lives, has been identified as an important factor in processing complex and difficult events. The systematic review further shows that the absence of formal debriefing following an adverse event can have a negative impact on professional confidence and contribute to staff leaving their jobs (9). 

Many want better follow-up in the workplace

In 2024, the Norwegian Directorate of Health published a guide for the follow-up of patients, their families and employees after adverse events. The aim is to promote a culture of support, openness and learning in the health service (36). The guide emphasises how a systematic approach and peer support are key elements in the follow-up of employees after adverse events (36).

An exploratory review article from 2023 found that midwives often consider leaving the profession due to lack of support and dissatisfaction with the working environment (25). Experiences from various peer support arrangements were also compiled in a report published the same year (37).

A large proportion of the newly qualified midwives in our study reported that they did not know whether guidelines for follow-up existed in their workplace. More than one in three midwives said they wanted changes in how follow-up after adverse events at work is handled.

The systematic review article mentioned above also showed that follow-up after adverse events varied across workplaces, and the arrangements in place were described as ranging from satisfactory to completely non-existent (9).

Strengths and limitations of the study

This study is small, and the results should be interpreted with caution. Respondents (n = 6) who had not experienced adverse events at work were excluded due to potential selection bias, as the wording of the invitation may have appealed more to those who had had such experiences.

However, the six excluded respondents would have represented 5.0% of the sample, which corresponds to the proportion reported in an Israeli study, where 94.3% of midwives had been present at a traumatic birth (8).

To minimise the risk of information bias, we based our study on validated questionnaires. However, some of the original response options were changed from a gynaecology context to a midwifery context, and we added questions of our own. 

One limitation of the study is the variations in the definitions and understandings of the terms ‘adverse events’ and ‘traumatic births’ (9).

In our study, the term ‘adverse events’ covers a broad range, from life-threatening situations to negative reactions and emotions. Future studies should consider specifying the types of adverse events being investigated to make it easier to compare results across studies.

Conclusion

The results of the study show that newly qualified midwives experience physical reactions and consider leaving the profession after adverse events at work.

The findings also highlight the need for employers to familiarise themselves with national guidelines and work closely with midwives in developing local protocols for follow-up after such events.

Further research is needed to explore the reasons why midwives consider leaving the profession. Intervention studies are also needed to assess the effectiveness of guidelines and various support measures aimed at ensuring that newly qualified midwives receive the support they need to remain in the profession throughout their career, even after experiencing adverse events at work.

Acknowledgements

We would like to thank the newly qualified midwives who took part in this study. We would also like to thank Ingvild Hersoug Nedberg, associate professor, for her valuable input.

Alise Tamara Bergland and Camilla Molden share first authorship.

The authors declare no conflicts of interest.

Open access CC BY 4.0

Introduction 

The Norwegian Institute of Public Health (NIPH) points out that the competency requirement for managing younger patient groups with psychiatric, somatic or neurological illnesses has changed (1). The Health and Care Services Act determines the framework and content of these services (2).

The Coordination Reform (3) and the Quality Reform for Older Patients (4) have led to a change in local authorities’ scope of responsibility in the health and care service. The primary care service is now responsible for prevention, early intervention, treatment and rehabilitation (3).

The National Audit Office of Norway’s report from 2016 highlighted how patients are discharged earlier from hospitals following the Coordination Reform. Patients receiving home nursing care are more seriously ill than before. There is a lack of competence in the health and care service, and quality targets are not being met (5). The specialist health service expects patients ready for discharge to receive advanced medical care in their own homes (6, 7). 

Home care nurses encounter patients with complex needs of all ages, often with multimorbidity (8–10). Multimorbidity leads to reduced quality of life, functional impairment, polypharmacy, increased mortality, longer treatment times and more frequent unplanned medical care (9, 11).

Studies show that higher demands are being placed on home care nurses’ professional competence (12–14). Studies also highlight the growing responsibilities of managers in home nursing care (15), including for prioritising resources (16) and ensuring that nurses have the necessary competence to provide the required standard of medical care to this patient group (15, 17–19).

In our understanding of the concept of competence, we have drawn on Lai (20), who states that competence is the sum of knowledge, skills and attitudes. According to Benner (21), it can take two to three years for a nurse to become a competent and skilled practitioner.

By 2030, an increased demand for advanced medical competence in primary care is expected (10). Today’s nurses must be able to provide advanced medical care such as home dialysis, respiratory therapy, intravenous treatment and pain relief, as well as carry out advanced health assessments and palliative care in patients’ homes (22–24). As early as 2018, researchers found that nurses are often faced with tasks for which they are insufficiently trained (24).

Managers are responsible for safeguarding standards in the health and care service. This means they must ensure that nurses have the necessary competence, resources and tools to manage the challenges they will face. 

Objective of the study

The objective of the study was to identify the competencies that managers in the health and care service believe nurses need in order to provide care and support to patients living at home with complex needs.

Method

The study has a qualitative design. Qualitative methods are well-suited for obtaining in-depth knowledge about participants’ experiences with and perceptions of a specific topic (25).

We conducted five focus group interviews with managers and middle managers in three urban municipalities in Northern Norway. Our preunderstanding was that these local authorities organise their home nursing services in a similar way and may have the same competency needs. Focus group interviews are an effective method for fostering dialogue among participants, shedding light on different experiences and revealing areas of agreement and disagreement (25).

Recruitment and selection 

We recruited health and care managers from three urban municipalities in Northern Norway. A and B are medium-sized municipalities and C is a large municipality. In the article, the senior managers responsible for health services in home nursing care are referred to as ‘managers’. Unit managers and departmental managers are referred to as ‘middle managers’.

The managers of the home nursing service were contacted and informed about the project by the last author, who was the project manager. These managers provided names of managers and middle managers that the project manager could contact via email. Information letters and consent forms were attached to the email. Three managers declined and 24 agreed to take part in the focus group interviews.

Two focus group interviews (A1 and A2) were held in municipality A, one (B1) was held in municipality B and two (C1 and C2) in municipality C. Most of the interviewees were nurses. The focus group interviews were conducted in the autumn of 2022 and the spring of 2023. 

Focus group interviews

We used a voice recorder app and informed the participants about this in advance. The interviews lasted between 60 and 90 minutes. The last author acted as moderator and guided the participants’ conversation, while the other authors served as secretaries, taking field notes and observing the interaction between participants. The moderator used a semi-structured interview guide inspired by Krueger and Casey (26).

We developed the interview guide ourselves. It was not followed in chronological order but served as a starting point and a background for the interviews.

Analysis

The analysis of the focus group interviews is based on Malterud’s systematic text condensation (27), a method for cross-case thematic analysis of qualitative data, in which the analysis process can be divided into four steps (Table 1).

In the first step, we read the transcribed material individually and then together to gain an overall impression and identify preliminary themes. In the second step, meaning units were identified and grouped into codes, with the content reduced into condensates that included ‘golden quotes’ from the data material. In the third step, we developed code groups by transforming the meaning units from step two into categories. In the fourth and final step, we summarised the findings based on the categories, which resulted in three main themes. 

Research ethics considerations

The study was reported to Sikt – the Norwegian Agency for Shared Services in Education and Research (reference number 552291). The informants received an information letter and consent form. We obtained written informed consent prior to the focus group interviews.

Participants were informed of their right to withdraw their consent at any time during the study without giving a reason and without any repercussions. The managers had various job titles but are referred to in the article as ‘managers’ and ‘middle managers’ in order to protect their anonymity. 

Results

We identified three main themes: 1) Caring for seriously ill patients of all ages living at home increases the need for advanced nursing competence, 2) Nurses need more than just general clinical competence, and 3) A greater need for responsibility and task allocation in home nursing care.

Caring for seriously ill patients of all ages living at home increases the need for advanced nursing competence

Participants found that home care nurses are having to manage and provide care for more seriously ill patients in all age groups and that they lack competence in many areas. The patient group ranges from small infants to older individuals with complex needs, requiring nurses to have medical-technical competence. A manager in a medium-sized municipality stated the following:

‘There are little babies with home ventilators, teenagers with ME, extensive functional impairments, the sick and frail elderly […] Complexity is a defining feature of the entire home nursing service, it’s almost like its DNA. Developing the right competence is difficult when there is so much variation.’ (B1)

Participants emphasised the importance of understanding what individual patients with physical and mental illnesses need in terms of comprehensive care. A middle manager in a medium-sized municipality expressed it as follows: 

‘In mental health care, you need to understand the whole picture for each patient, not get caught up in diagnoses and procedures, as often happens in somatic care.’ (A2)

Managers in the medium-sized municipalities expressed concern that a growing patient group with serious somatic and mental health problems of all age groups is not receiving comprehensive care and support. One manager said the following:

‘We encounter all these patients with different challenges, including in mental health, so what can we do, because everyone deserves good health care.’ (A1)

Some of the participants focussed on the importance of nurses having the competence to assess what the individual patient needs in terms of physical and mental health support.

A middle manager in a large municipality explained it as follows:

‘Patients are forced to care for themselves, a hidden challenge that isn’t talked about much. These are the major long-term challenges we face.’ (C2)

When nurses lack the competence to carry out a comprehensive assessment of the patient’s situation, this also represents a challenge for the managers.    

Nurses need more than just general clinical competence

Many of the managers and middle managers pointed out that nurses need skills beyond general clinical competence if they are to provide healthcare services for patients with complex medical conditions. This requires a higher level of education than a bachelor’s degree. A manager in a large municipality explained it as follows:

‘We’re generalists, but we’re also expected to have specialised knowledge in certain cases. We can’t claim to be particularly good at treating stroke or ALS, but we have to deal with both, and more. No one asks whether we have the competence; we’re just expected to get on with it.’ (C1)

The participants found that it takes time for newly qualified nurses to develop clinical judgement and to be able to take responsibility for patients with complex needs. The managers in the largest municipality emphasised the importance of the Advanced Clinical Practice (ACP) qualification. One manager said the following:

‘Observation skills, especially for patients with dementia and in palliative care, require more than just taking measurements. It’s about identifying the tools you need to make the right observations. The ACP training has its advantages, we learn how to carry out a full patient assessment and piece it all together into a holistic picture. I don’t know if you can do that as a novice. You need experience and an in-depth understanding.’ (C2)

The interviews revealed that patients discharged from hospital with complex wounds and seriously ill cancer patients need palliative care and support. There was a shortage of oncology nurses and nurses with expertise in palliative care. The managers with an ACP qualification in the large municipality highlighted the benefits of both them and the nurses having this advanced training.

A greater need for responsibility and task allocation in home nursing care

The managers and middle managers in all the municipalities were concerned that they were placing too much responsibility on newly qualified nurses in terms of patient follow-up. A manager in a medium-sized municipality said the following:

‘The nurse in charge has considerable responsibility; you need to know what to do if you’re assigned that role. We’ve faced some challenges with our own staff, particularly the newly qualified nurses, in terms of taking ownership of this role.’ (A1)

The managers in the medium-sized municipalities in particular found that the health service lacked resources and nursing expertise. A middle manager expressed it as follows: 

‘We see that we lack competence and are challenged [by] the distribution of tasks between nurses, nursing associates and support staff. We need to use the resources we have effectively.’ (B1)

The transfer of responsibilities from the specialist health service to primary care has increased the demand for expertise, which takes time to acquire. One of the managers in a medium-sized municipality stated the following:

‘We lack the competence to take patients from the specialist health service. Nurses are worried about not being able to cope with […] the medical follow-up [...] Multimorbidity and complex needs are being shifted from the specialist health service to primary care. They should stay in hospital longer.’ (A2)

The participants all agreed that patients with complex needs are discharged too early from the specialist health service to their homes and before completing their treatment. The unmet demand for competence means that nurses are faced with a huge responsibility to provide the required standard of care for this patient group. The managers in the largest municipality were concerned about the responsibility they place on nurses:

‘More responsibility for nurses; there’s no end to what they have to deal with, from ventilators, pain pumps, home deaths and complex illnesses. It’s an enormous responsibility on the few nurses working in the service.’ (C1)

Several managers emphasised their responsibility to coordinate and assess the patient’s complex needs for care, and that this also requires managers to have the experience and competence to allocate tasks effectively.

A manager in a large municipality stated: ‘As a manager, you also need to have the ability to see things from a coordination perspective, to identify and possess the expertise to assess the complexity. You need to be good at a lot of things in the home nursing service.’ (C2)

Since the Coordination Reform, several informants have found that the responsibility for ensuring that the required standard of care is provided in their municipality has become greater. The pressure on nursing resources is considerable, and more specialised nursing competence is needed. The managers therefore believe it is necessary to redistribute responsibilities and tasks. In the largest municipality, the managers had taken more decisive steps and reorganised the home nursing service and the division of tasks. This made it easier to recruit and retain nurses.

Discussion

The objective of this article was to examine the experiences of managers and middle managers in home nursing care regarding the need for nursing competence. Following implementation of the Coordination Reform, patients are now discharged earlier and have more extensive care needs (1).

In line with government white papers (3) and other studies (12, 18, 28, 29), our study shows that home care nurses are required to care for not only older and multimorbid patients, but also younger patients in various life situations and with a wide range of diagnoses, all receiving care in their own homes. 

Nurses need expertise in multiple specialist areas to care for patients with complex medical needs

In addition to our study, several other studies (8, 19, 28, 29) show that home care nurses lack medical and nursing competence. Several managers and middle managers in our study were concerned that the necessary expertise was lacking in many specialist areas.

The managers were aware that they are not only financially responsible for running the home nursing service, but also for ensuring that patients receive the care they need. This includes making sure that nurses have the necessary competence to provide the required standard of care.

The specialist health service expects home care nurses to handle complex medical challenges and advanced medical-technical tasks after patients are discharged from hospital (6). Participants in our study found that nurses can feel unsure when required to perform unfamiliar and advanced medical procedures, and this is also reflected in other studies (22–24, 31). 

Our study also revealed that nurses had problems dealing with advanced medical-technical equipment, such as home ventilators. Several middle managers pointed out that nurses with more clinical experience in home nursing care are better equipped to handle such challenges, which aligns with Benner’s (21) description of the five stages of clinical competence.

As in our study, other studies (12–14, 18, 22) have also noted that nurses must have the expertise to provide comprehensive care in areas such as psychiatry, palliative care, geriatric care and care for individuals with intellectual disabilities. Our study also highlighted a need for competence in caring for the youngest patient groups with complex needs.

The managers and middle managers believed it was challenging for nurses to take a comprehensive view of the patient’s needs and assess what each patient requires in terms of physical and mental support. When patients do not receive the medical care they need, they are forced to take responsibility for their own health and illness.  

The managers and middle managers believe that the nurses need skills beyond general clinical competence

The bachelor’s degree in nursing gives nurses general clinical competence (32). In the study, we asked managers and middle managers what type of nursing competence they believe is needed in home nursing care. Other studies (15, 17) have also identified a need for a higher level of competence in recognising patient deterioration and assessing nursing interventions for patients living at home.

The participants in our study pointed out that specialised nursing skills are needed to carry out systematic clinical examinations and assessments, make decisions and implement nursing interventions for patients with complex needs. Our findings show that home care nurses need more advanced knowledge than that provided by a bachelor’s degree in nursing (21, 32). Newly qualified nurses have little clinical experience. 

Having responsibility for patients with complex needs is challenging in a home nursing context, where nurses are often alone in bearing that responsibility. Previous studies (23, 33, 34) highlight the need for home care nurses to have an Advanced Clinical Practice (ACP) qualification. As part of their training, ACP nurses develop advanced clinical expertise and strong decision-making skills, enabling them to deliver the required standard of care for different patient groups in all age groups facing a wide range of health challenges (7).

According to Lai (20) and Benner et al. (21), changes in the condition of patients with complex needs require expert-level knowledge, skills and personal qualities in order for nurses to deliver comprehensive care – and these take time to develop. 

A surprise finding in our study was that managers with an ACP qualification – all from the largest urban municipality – reported that their advanced training had given them a deeper understanding of the areas where nurses may lack competence. They had also become more aware of their responsibility as managers for building competence and organising health services, as outlined in the regulations on leadership and quality improvement in the health and care service (30).

We observed a change in the managers during the focus group interviews, from being primarily concerned with finances to focussing on their responsibility for ensuring that the required standard of care is provided. They recognised the need for nurses to have the opportunity to study for an advanced qualification and specialist education across a range of medical and nursing fields.

Advanced nursing competence can also make it easier to assess complexity and implement the necessary nursing interventions for patients with complex needs. Maintaining and acquiring new competence may also help retain nurses in home nursing care. Insufficient competence can pose a threat to patient safety – something the managers in our study were concerned about.

The responsibilities and division of tasks in home nursing care are changing

As part of the Coordination Reform, nurses were assigned greater responsibility (3) for patients of all ages with somatic and psychosomatic conditions. This means that managers and middle managers, who have overall clinical responsibility, must ensure an effective distribution of tasks (30) and adapt to changes in the health service (15–17). Our study shows a need for a more specialised division of responsibilities and tasks in home care services, where nurses are assigned nursing duties that match their qualifications and cannot be delegated.

As with our study, other studies (14) also show that home care nurses often have sole responsibility for a wide range of tasks in patients’ homes. These nurses must have wide-ranging clinical competence, enabling them to provide care regardless of diagnosis or context. Other studies (35) point to a gap between what older patients with complex needs require and what the health and care service can provide. 

In our study, participants expressed concern about whether they will be able to coordinate and provide home-based patients with complex needs the care they require when there is lack of nursing competence. This issue was more pronounced in the medium-sized municipalities. The managers further pointed out that the problem goes beyond a mere lack of resources; healthcare personnel and resources must be deployed effectively, in the right place at the right time. This requires a redistribution of responsibilities and tasks and a reorganisation of the service.

In another study (2), nurses reported that they were not using their expertise and were instead assigned tasks that less qualified healthcare personnel could carry out. Our study found that recruiting and retaining nurses is a challenge, although it appears to be easier in the largest municipality. 

The managers in our study did not have specific suggestions for how the division of tasks could be addressed, and more research is needed on this. However, several of the managers and middle managers felt there was a need to reorganise the home nursing service. The largest municipality was more focussed on digital solutions to address the resource challenges in the service.

Nurses are needed who have a higher level of education than a bachelor’s degree. They must be offered advanced training to enhance their skills in providing health and care services for patients with complex needs.

Raising competence levels in home nursing care will be an expense in local authorities’ health and care budget. However, in the longer term, operating costs for health and care services for home-based patient groups will likely decrease when nurses have attained the necessary medical and nursing expertise. 

Strengths and limitations of the study

When focus groups include managers and middle managers from different levels, participants can be reluctant to discuss difficult or controversial issues. In our study, the dialogue was good between the different management groups. However, after one of the interviews, one of the middle managers disagreed with the managers’ solutions to the nursing competence challenges, something they had not expressed during the focus group interview.

Participants found it beneficial to meet and discuss the competence needs in home nursing care. Conducting focus group interviews with management groups who had responsibility for the health and care service in three Northern Norwegian municipalities was a strength of the study. We believe that a group of participants with a management perspective can reveal different insights into the need for advanced nursing competence than a group of home care nurses. 

Another strength of the study is that managers and middle managers participated in the same focus group to discuss the competencies nurses need to care for patients living at home with complex needs. We have extensive experience in primary care and in research in this field. We have therefore been careful to ensure that our own preunderstanding did not influence the study. The limitation of the study is that we did not interview the home care nurses.

Conclusion

In managers’ and middle managers’ experience, patients of all ages with complex and multifaceted conditions require more advanced medical-technical assistance and care in their own homes. When nursing resources are scarce and nurses lack clinical experience and advanced training, patients may not receive the medical care they need. The managers recognise the benefit of a nurse having an ACP qualification when conducting a needs assessment and allocating tasks in the home nursing service.

During the focus group interviews, the management groups became aware of the need to strengthen nursing resources and competencies. They also need to ensure that home care nurses have the opportunity to enhance their competencies in several medical and nursing fields. Patient safety can be comprised when nurses do not have the necessary competence. 

Further research involving managers, middle managers and nurses in the home nursing service in other urban municipalities in Norway is needed to explore competency needs and how other local authorities organise their home nursing service.

Acknowledgements

We would like to thank UiT The Arctic University of Norway and the management of the Department of Health and Care Sciences at UiT (IHO) for their financial support and the opportunity to conduct the study. We would also like to extend our thanks to the managers and middle managers who participated in the focus group interviews. 

The authors declare no conflicts of interest.

Open access CC BY 4.0

Introduction 

Malnutrition and undernutrition frequently occur in patients who are hospitalised in somatic hospital departments, where one in three patients is at risk of undernutrition. The corresponding risk in ICUs can be over 70 per cent (1). Moreover, it has been demonstrated that the nutrition prescribed and administered to patients during their ICU stay is less than their estimated needs (2, 3). Malnutrition in ICU patients is associated with increased risk of infections, prolonged time on ventilator, longer length of stay, and increased mortality (4–6).

The term ‘malnutrition’ can refer to both overnutrition and undernutrition. The Norwegian Directorate of Health uses it as a collective term for conditions where there is an imbalance in the intake and/or uptake of nutrients (7). Critical illness, trauma and intensive care affect the ICU patient’s metabolism, nutritional status and nutritional needs (6). 

The guidelines of the European Society of Clinical Nutrition and Metabolism (ESPEN) primarily recommend oral nutritional delivery during the ICU stay (6). If the ICU patient is unable to ingest adequate nutrients, enteral nutrition (EN) is recommended rather than parenteral delivery. 

Some studies find that early enteral nutrition leads to reduced hospitalisation, duration of mechanical ventilation, morbidity and mortality (8). Enteral nutrition can be started despite abnormal bowel function, for example when bowel sounds or flatus are absent (6). 

The initiation of enteral nutrition should be delayed in the case of haemodynamic instability, but can be started for patients who are stabilised with a low dose of catecholamines and/or infusions (6). It has been demonstrated that quality improvement projects and implementation of nutritional procedures can promote an increase in the use of enteral nutrition (9).

Cahill et al. developed and validated a questionnaire to map the barriers to enteral nutrition. They found an inverse correlation between the prevalence of reported barriers and the delivery of enteral nutrition (10, 11). 

Since then, the questionnaire has been used in a number of international studies, indicating that these barriers exist in different countries and cultures (12–14). It is recommended that barriers are mapped for the relevant population or organisation where improvement is desired with the aim of tailoring measures to overcome the main barriers (15).

From a national perspective, there is a lack of knowledge about the prevalence of barriers to enteral nutrition in ICU patients in Norway. The objective of this study is to map these factors. We compared reported barriers at group level with the aim of generating hypotheses. 

The groups that were compared were: 1) staff at local/regional hospitals and university hospitals; 2) RNs with short-, medium- and long-term work experience; and 3) RNs with or without advanced clinical education.

Method

Study design

We conducted a cross-sectional study with a quantitative descriptive design. The participants were RNs and specialist nurses from ICUs in Norway who primarily treat ICU patients over the age of 18 years. The nurses had at least six months experience in the ICU in which they were working during the study. Staff on leave or sick leave were not included. Data were collected from April to July, 2023. 

The questionnaire was answered and digital consent given on the online portal eFORSK (16). The study was submitted to the former Norwegian Centre for Research Data, now Sikt – Norwegian Agency for Shared Services in Education and Research (Reference number 517858). The study was approved by the data protection officer at the Norwegian University of Science and Technology (NTNU), as well as the local data protection officers at the participating hospitals. De-identified raw data were used in the analysis.

Our aim was to include as broad a sample of the population as possible. All ICUs in Norway were therefore contacted, and 24 of 59 units consented to participate. Contact persons in the units distributed the questionnaire to relevant participants. A reminder was sent after four weeks, which increased the response rate by four per cent. 

A total of 129 (11 per cent) of 1,213 possible respondents answered the questionnaire. In the case of the 35 units that did not participate, either the health trust or the unit did not wish to participate (n = 5), there was no response to our request (n = 29) or feedback arrived after the conclusion of the data collection period (n = 1). 

No collected data were excluded. Experience and clinical specialty were evenly distributed between local/regional hospitals and university hospitals, but recruitment in relation to the various health trusts was skewed (Table 1). 

Barriers to delivery of nutrition in critically ill patients 

We used a Norwegian version of Cahill’s Barriers Questionnaire (10). The questionnaire was translated into Norwegian in connection with a quality improvement project at Oslo University Hospital in 2016. The original author was involved in a ten-step process with translation and cultural adaptation. The Norwegian translation is freely available on the Critical Care Nutrition website (Barrierer for ernæring av kritisk syke pasienter )(17). 

The questionnaire was distributed to a pilot group so that they could give feedback on the instrument prior to further distribution. The feedback from the pilot group did not indicate any need to adjust the questionnaire. The pilot group’s responses were not included in the dataset. 

The questionnaire consisted of three parts. Part A contained 21 statements about barriers to feeding ICU patients enterally. Items 1–7 are combined under the theme ‘Delivery of enteral nutrition to the patient’, items 8–11 under ‘Dietician support’, items 12–13 under ‘ICU resources’ and items 14–21 under ‘The attitudes and behaviour of ICU personnel’. 

Each statement was rated on a seven-point Likert scale. The respondents were asked to describe the degree to which each statement was perceived as a barrier in their ICU, from 0 ‘not at all’ to 6 ‘an extreme amount’. The response alternatives ‘a lot’, ‘a great deal’ and ‘an extreme amount’ were combined as in earlier studies (10–13, 18), and are referred to as ‘barriers’ from here on.

Part B contained demographic questions while in Part C, respondents could give free text comments on the questionnaire. The respondents were required to answer all questions in Parts A and B before submitting the questionnaire.

In the original version, Part B contained four categories relating to seniority and experience: 0–5, 6–10, 11–15 and > 15 years’ experience. In our study, the last two categories were combined because the group with more than 15 years’ experience was small. The 6–10 years’ group was smaller than the other two, but we retained it because we found it interesting to compare relatively inexperienced ICU nurses with two groups with longer seniority and experience.

The data in Part A had a normal distribution with the exception of items 9 and 10. In Part C, several respondents also gave free-text comments indicating that these two items were difficult to understand. A test of the instrument’s internal consistency using Cronbach’s alpha showed that this increased from 0.797 to 0.813 after the exclusion of items 9 and 10. Following an overall assessment of these factors, we decided to exclude these items from the ten most commonly reported barriers. However, they will be reported and discussed separately.

We compared categorical demographic variables using Pearson’s chi-square test or Fisher’s test. To compare the rating of barriers between variables with two categories, we used the independent t-test. For three categories we used the one-way ANOVA-test with Tukey’s honest significant difference (HSD) post-hoc analysis. The analyses were conducted using SPSS version 29, while R version 4.3 was used for the figures. Two-sided p-value < 0.05 was regarded as statistically significant. 

Results 

The most commonly reported barriers were item 19 ‘Enteral nutrition halted before procedures or operations’ (69/129, 53 per cent), item 6 ‘In critically ill patients, other aspects of patient care still take priority over nutrition’ (60/129, 47 per cent), item 5 ‘Delays and difficulties in obtaining small bowel access in patients not tolerating enteral nutrition (e.g. ventricle retention)’ (47/129, 36 per cent) and item 11 ‘Not enough time dedicated to education and training on how to optimally feed patients’ (44/129, 34 per cent).

Moreover, the most commonly reported barriers from four to ten are also given. These were reported with declining frequency by 44 to 20 of 129 respondents (34 and 16 per cent respectively). Figure 1 shows the ten most commonly reported barriers in descending order from greatest to smallest. 

The most common barriers were item 9 ‘Dietician not routinely present on weekday patient rounds’ (71/129, 55 per cent), and item 10 ‘No or not enough dietician coverage during evenings, weekends and holidays’ (77/129, 60 per cent). These items are omitted from Figure 1 because we received feedback that they were difficult to understand and that the instrument attained a somewhat higher Cronbach’s alpha without them.

Table 2 compares different subgroups. When we compared the rating of the ten most commonly reported barriers at university and local/regional hospitals, we found that barriers 11, 4, 7 and 15 were evaluated as greater (p < 0.05) at the university hospitals. 

The barrier ‘In critically ill patients, other aspects of patient care still take priority over nutrition’, was rated lower (p < 0.05) by nurses with over 10 years’ experience compared with groups with 5–10 and 0.5–10 years’ experience. 

Nurses in the group with 0.5–5 years’ experience reported the item ‘Enteral nutrition halted for procedures such as physiotherapy, turning a patient in bed and administering medications’ as a greater challenge compared with nurses with more than ten years’ experience.

We found no significant differences in the ratings of the ten most commonly reported barriers among nurses with advanced clinical education compared with those without.

Discussion

The respondents in this study reported a high prevalence of several known barriers to the delivery of enteral nutrition at ICUs in Norwegian hospitals. The barriers most commonly reported are linked to fasting prior to procedures, prioritisation of other areas of patient care, challenges in establishing a jejunostomy tube, and a lack of time for education and training.

Enteral nutrition halted before procedures or operations 

ICU patients are often subject to procedures or operations that may entail fasting. This was the most commonly reported barrier in the study, and 53 per cent of the respondents stated that it hindered them in the delivery of enteral nutrition. A systematic review article by Ros et al. identifies fasting as one of the most common reasons for interruption of the delivery of nutrition (4). 

In a retrospective cohort study from the United States, nutrition delivery was halted for 4.8 hours daily on average between days two and six of the ICU stay. The main reasons for these pauses were presumed to be extubation, fasting before procedures, loss of enteral access, ventricle retention, and radiology suite procedures (2).

Nurses with more than ten years’ experience rate fasting in connection with procedures as less of a barrier (p < 0.05) compared with colleagues with less than five years’ experience. ICU nurses have a complex area of responsibility in a stressful working environment (19–21). Studies show that the learning environment in ICU nursing is challenging. Much has to be learned in a short period of time, while good time management and the ability to prioritise are also expected (20, 21).

The ability to establish good routines, optimalise time management and improve prioritisation skills is developed over time. Less experienced nurses have a greater need for mentors or guidelines in connection with complex treatment (22). The lack of procedures and standardised time intervals for fasting in the case of intubated ICU patients is an issue that has been discussed earlier (14, 15, 20). We were unable to find national guidelines or procedures for fasting in the case of intubated ICU patients.

In critically ill patients, other aspects of patient care still take priority over nutrition

The next most common barrier in our study was that enteral nutrition was given lower priority than other issues in critically ill ICU patients. According to the available literature, ICU personnel recognise the importance of enteral nutrition, but state that it is given lower priority in a number of situations (23). However, earlier studies have shown that it is possible to influence several of the factors that delay delivery, and a number of nurses pointed out the importance of prioritising nutrition (24). 

Nurses with more than ten years’ experience also rated this barrier as lower. It is conceivable that nurses with longer experience are more familiar with ways of optimalising nutrition while also attending to procedures and taking care of the patient’s other needs.

It is important to note that the content of this item in the questionnaire differs somewhat from the original. There it was emphasised that the prioritisation of other procedures applies to haemodynamically stable patients, who, according to guidelines, might be candidates for enteral nutrition. This may mean that the barrier reported in this study is potentially overestimated. 

This study did not explore the situations in which nutrition is given lower priority or the reasons for this. A lack of knowledge about correct nutrition and the significance of hard outcomes may also result in lower prioritisation. Not devoting enough time to education and training on how to optimally feed patients is the fourth most common barrier in the study. This was also found to be more prevalent at university hospitals. 

A lack of education and training may be the result of a busy workday with increasing demands as to productivity and efficiency (25, 26). More focus on and training in enteral nutrition can optimalise its administration (3, 27).

Delays and difficulties in obtaining small bowel access in patients not tolerating enteral nutrition (e.g. ventricle retention) 

Delayed jejunal access was the third most commonly reported barrier to delivery of enteral nutrition in ICU patients. Enteral feeding intolerance and ventricle retention are regarded as some of the most common reasons for the interruption of delivery of enteral nutrition (4). In patients with ventricle retention where medication has been given without effect, the establishment of jejunal access is subject to delays (6). 

The insertion of a jejunostomy tube requires special competence, and the lack of personnel can thus be a limiting factor. Nonetheless, reports on this barrier did not vary between university and local/regional hospitals where the availability of personnel with such skills might be expected to differ. 

On the other hand, nurses at university hospitals reported that the failure to discuss nutrition therapy on patient care rounds was a greater barrier (p < 0.05). A number of studies highlight the advantages of using a daily goals checklist during rounds in order to optimalise delivery of nutrition, among other things (28–30). 

If nutrition is not discussed during the round, it is likely that the detection of ventricle retention and the initiation of motility agents will be delayed, or that the failure to comply with nutrition protocols will not be discovered. Using a nutrition protocol can ensure that more ICU patients achieve their nutritional goals (31).

It is uncertain why university hospital nurses rate the four barriers as greater (p < 0.05) when compared with local/regional hospitals. A possible reason may be differences in patient conditions, where university hospitals treat different patient groups than local/regional hospitals and offer intensive monitoring and interventions that cannot be carried out at local/regional hospitals. This may entail that nutrition delivery is given lower priority in favour of other treatment. Another explanation may be that dissimilar recruitment from different regions and hospital size can have impacted on the results. 

There is little literature available on differences in the barriers to enteral nutrition at local or university hospitals, but a Chinese study (13), in which a locally adapted version of Cahill et al.’s questionnaire was used, found greater barriers at local hospitals. The authors discussed whether the differences could be attributed to a lack of resources at smaller hospitals, but these results can probably not be compared directly with Norwegian conditions. 

Nurses with and without advanced clinical education

We did not find any differences between the responses of respondents with advanced clinical education compared to those without. However, there was a considerable bias in relation to respondents, as 88 per cent of the responses were from personnel with such education. Bloomer et al. (24) found no differences in the extent to which nutrition was given priority in patient treatment when comparing health personnel with different educational backgrounds. 

Support of a dietician

Items 9 and 10, relating to the availability and support of a dietician during patient rounds and nursing shifts, were not included amongst the ten most commonly occurring barriers due to skewed data and feedback that the statements were difficult to understand. Some respondents saw the lack of availability of a dietician in the unit or hospital as a barrier, but were uncertain which question to use to report this. Future studies should therefore include a question on whether the hospital has a dietician or not. 

Providing the correct nutrition to an ICU patient can be challenging because of the patient’s altered metabolism in connection with acute illness or injury. Enteral nutrition must be specifically adapted to the patient’s condition because both over- and underfeeding can result in a number of complications (32). A multidisciplinary approach including support from a dietician can give better outcomes for ICU patients, as well as shorter ICU stays (33).

It is likely that all the barriers mentioned above vary from hospital to hospital and among the various ICUs in line with available resources, local guidelines and culture. This highlights the value of mapping barriers at the local level in the institution seeking improvement.

Strengths and limitations

This study is the first national mapping of barriers to the delivery of enteral nutrition in ICU patients. The use of an internationally recognised and validated questionnaire developed to map barriers to enteral nutrition in ICUs is a strength. The questionnaire was systematically translated into Norwegian earlier, in cooperation with the original author (17). 

Cronbach’s alpha shows that the questionnaire has a high internal consistency. Free-text comments in response to items 9 and 10 indicated that the statements could be misunderstood. We also note that item 6 deviates somewhat from the original questionnaire, as pointed out above. This was not discovered when we pilot tested the questionnaire, but the wording of these items should be evaluated prior to further use of the Norwegian version and should be adapted to local conditions if appropriate. 

We wanted to include as many informants as possible and invited all ICUs in Norway to participate. However, the respondents come from only three of the four health regions, with some bias in the subgroups as shown in Table 1. The low response rate and the total number of responses mean that we cannot generalise the findings to apply to all nurses at Norwegian ICUs, but must interpret the results with caution (34). 

However, the study does provide some insight into the barriers that can occur in Norwegian ICUs because it includes respondents from 24 different ICUs. Our findings on the most common barriers concur with findings in comparable international studies (10, 12, 14, 18), and this strengthens our results.

Web-based questionnaires are known to have a lower response rate (35). The requirement to log in using a recognised form of electronic ID may have raised the threshold for participating in the study. These factors combined may have led to data bias in that only the nurses who were most interested in nutrition responded (34). A different form of distribution should be evaluated for future surveys or there should be stronger local focus to ensure that the results can be generalised. 

Our study may encourage ICU personnel to pay more attention to the barriers to the delivery of enteral nutrition in ICU patients. These can be reduced by mapping them and becoming more aware of them. To obtain an overview of the barriers that exist at the individual ICU, the questionnaire used in this study can be utilised in local quality improvement projects. 

Conclusion

This study reports the barriers to enteral nutrition in Norwegian ICUs for the first time. The barriers most commonly reported are that nutrition is halted in connection with procedures, nutrition is given lower priority in relation to other procedures and that jejunal access is delayed in patients with ventricle retention.

Nurses with over ten years’ experience evaluated the prioritisation of nutrition and fasting in connection with procedures as less of a barrier than colleagues with shorter experience. The questionnaire used to map the barriers is freely available and may be useful in further research and quality improvement projects. 

Espen Løver Thu and Stian Voldsund share first authorship.

The authors declare no conflicts of interest.

Open access CC BY 4.0

Introduction

The number of adolescents and young adults (AYAs) who are diagnosed with cancer annually on an international basis is approximately 1.2 million, which corresponds to roughly 5% of all cancer cases worldwide (1). While the number is growing each year, it is nevertheless an understudied patient group (2–5).

Internationally, the term AYA includes people aged from 15 to 39 (2, 6). In Norway, different definitions apply when the term AYA is used. Patient organisations use the definition to describe patients up to 35 years of age (7). In our data, AYA is defined as patients aged between 16 and 30. 

Sarcoma represents roughly one percent of all cancer cases and is an umbrella term for cancer in bones and connective tissues (8). The disease is more frequent among children and adolescents, and it makes up approximately 10–15% of all cancer cases that emerge in childhood and adolescence. In Norway, about 550 new sarcoma cases are diagnosed annually. Of these, 20 to 25 belong to the subgroup of osteosarcoma, which most frequently affects AYAs (9). 

The treatment patients receive is lengthy and consists of chemotherapy and surgery (10, 11), which entail spending a great deal of time in hospital (4). AYAs are a vulnerable group. Many of these young people can be lacking in the life experience and coping skills necessary to be able to manage a serious illness, and they require extra attention from the health service (12). 

To minimise the effect that cancer and its treatment have on AYAs, it is recommended that health personnel support them so that they can live as normally as possible (13, 14–17). The provision of home-based chemotherapy (HBC) could form a part of this, as well as helping patients to feel they have greater control over the situation (14). 

HBC is a service that has been offered to AYA sarcoma patients since 2020. The service allows patients to receive part of their treatment at home (Appendix 1 and Appendix 2, in Norwegian only). Chemotherapy or intravenous fluid is administered to the patient via an infusion pump placed in a special backpack (Appendix 3, in Norwegian only). 

Before being offered HBC, all patients must have completed at least one round of treatment in hospital. Patients attend hospital on a daily basis, or every other day, for blood tests and other health checks, as well as to record observations made at home.

International research on HBC has shown promising results, with fewer chemotherapy-related side effects such as nausea, reduced appetite and fatigue (5, 17). In addition, the treatment method may be considered both feasible and safe as there have been no reported serious complications (2, 3, 16, 17). Studies also show that patients were satisfied and that they were able to maintain their daily routines and social lives to a greater degree (4, 18, 19). 

Previous research on HBC on a global basis has either focused on children or adults (2–5, 16–19). Studies also indicate that AYAs have special needs, and that research should focus on this patient group as well (6, 12, 20, 21). 

There are calls for more research on this patient group’s perceptions of HBC, both the benefits and the challenges associated with treatment (14, 21). We used Antonovsky’s theory as a theoretical basis for our work. As health personnel, we should focus on promoting the patient’s ability to cope and their health (22).

Objective of the study

The objective of our study was to increase knowledge concerning the perceptions of AYA sarcoma patients aged between 16 to 30 regarding HBC. The research question was as follows: ‘What are the perceptions of adolescent and young adult sarcoma patients regarding home-based chemotherapy?’

Method

Design

We used a qualitative research design and semi-structured individual interviews to obtain detailed descriptions from the informants (23).

Sample and recruitment

We carried out strategic selection to increase knowledge about a specific phenomenon and illuminate the research question in the best way possible (23, 24). 

The inclusion criteria were that informants must have been diagnosed with sarcoma, have completed at least one round of treatment at home and be aged between 16 and 30. The patients were recruited at the outpatient clinic and ward of a university hospital in Norway. All of the patients who met the inclusion criteria were given an information letter with a request to participate. Eleven patients were asked, of whom two declined. Nine patients were subsequently included (Table 1). 

Implementation and data collection

Data were collected in the period from June to October 2023. We used an interview guide (Table 2) with open questions based on previous studies that had been conducted on the same topic, to ensure that our perceptions did not influence the questions and answers provided by the study (4). The interviews were carried out by the last author, who does not have a clinical position and was therefore unacquainted with the informants (26). We recorded the interviews on audiotape and transcribed them.

Analysis

The data were analysed in six steps according to Braun and Clarke’s reflexive thematic analysis model (25). The model’s flexibility was important because the informants differed, both in terms of age and level of maturity. Furthermore, they had different perceptions and experiences of treatment. 

Both authors carried out the analysis, individually and in collaboration, to gain familiarity with the data. Meaning units were extracted from the transcribed data and converted into codes, which then resulted in themes (Table 3). 

During the analysis process, informants were assigned a letter of the alphabet to prevent them from being identified. The letter is used with the quotations so that no one can be recognised by diagnosis or age in this small patient group. We took an open-minded approach to interpreting the text, and the terms that are used are those of the informants themselves. In the analysis process, we attempted to put aside our own experiences as far as possible. Nevertheless, we are aware that preconceptions are of significance in our interpretation and analysis of the text (24, 26), particularly in discussions in which we actively used our experiences to compare findings with other research and clinical practice.

Ethical considerations

The study is part of a larger research project on HBC that is being carried out at a university hospital in Norway. The main project was submitted to the Regional Committee for Medical and Health Research Ethics (REK), reference number 498856, which concluded that the project was not subject to notification as the objective was not to obtain new knowledge on disease and health. The project was approved by the data protection officer at the university hospital, case number 22/22156. 

The informants received an information letter and consent form which had to be signed before the interview took place. All of the informants were informed that they could withdraw at any time without providing a reason.

The data were stored on a research server at the university hospital to ensure confidentiality and anonymity. The audio recordings were deleted after analysis of the data was complete. 

Results

The informants had different perceptions of HBC. They experienced various psychological effects, and this emerged as the most central finding. It was positive for all informants to maintain social ties and enhance their physical well-being, and their descriptions of the themes corresponded. The themes influenced each other to a large extent.

Positive and negative psychological effects of HBC

The informants experienced different mental stresses. For some, carrying out treatment at home was positive, while others felt it was challenging to have responsibility for their own treatment.

The sense of freedom reduced the mental stress of undergoing cancer treatment: ‘It’s important for my mental health that I can be at home as much as possible, because then, in a way, I feel better in myself and the others at home perhaps feel a little better’ (E). Many of the informants found that HBC made it possible to relax in a different way than in hospital. The informants pointed out that they experienced less disturbance at home.

Several of them felt confident about the method of treatment and described the feeling of being ‘more normal’ (F) with HBC. They saw the importance of being able to spend more time at home. There was less feeling of being sick compared to being in hospital. Other advantages of HBC were as follows: ‘The good thing about the backpack is that I can hide a little bit, people don’t automatically see that you’re getting chemotherapy’ (D).

Other informants were affected negatively when they were given HBC. They perceived that home was different and therefore felt heightened stress: ‘You take hospital home with you’ (I). They pointed out that the sound from the infusion pump was a negative factor because it was unfamiliar at home. 

Some felt a greater sense of responsibility and said that it was frightening not to have health personnel close by. The sense of security was not the same at home as in hospital: ‘It was a bit more demanding than I expected. When you’re at home, you have to think and do everything yourself. When you’re in hospital, the nurses do it’ (I). 

Some also felt that their relationship to the health personnel changed because of HBC. They perceived that they did not have the same sense of belonging at the hospital and did not feel prioritised: ‘I felt like I was just left sitting and waiting, and that I was at the back of the queue’ (C). Others experienced the opposite, that health personnel had allocated time for them when they were at the hospital and that they had better contact.

The distance to the hospital may have influenced perceptions of HBC. Those who had a long way to travel found HBC more stressful and the journey tired them. At the same time, they pointed out that there was less disturbance at home and that they saw the value of having the flexibility to be able to choose to go home: ‘It’s a really good service and it’s nice to have the opportunity, if you want to do it’ (C). 

Some of the informants who had undergone many rounds of treatment at home found that they gradually became less worried as they became more confident in using the equipment. They explained that what was frightening the first few times, such as the fear of something going wrong, gradually became less frightening. Others found that the stress persisted, and they alternated between being at home and getting treatment at the hospital throughout the course of treatment.

Maintenance of social ties with HBC

The informants believed that it was easier to carry out HBC because it helped to maintain social ties.

All of the informants said that it was essential to maintain social ties while they underwent cancer treatment. They pointed out the benefits of being together with their family and participating in daily activities just like they did when they were well, for example, lying on the sofa watching a film. ‘You have a bit more social contact, it makes it all a bit more positive. It’s easier to get an energy boost than if you’re just in hospital, both physically and mentally, actually’ (E). 

Some of them felt lonely when they were in hospital and could not be together with others. For this reason, they considered HBC as valuable in a prolonged course of treatment. The special backpack gave them a sense of freedom, and several experienced an energy boost by socialising with friends and family.

Adolescents of school age and students pointed out that it was important to be able to participate in class to maintain social ties and for learning: ‘I think it’s fun to be able to go to school and learn things, it’s fun to be able to do things, and to be able to do things you have to learn things’ (B). Being able to participate at school some of the time made them feel a part of the classroom community and that they had a natural meeting point with friends. 

Enhanced physical well-being with HBC

The informants pointed out that their physical well-being was enhanced when they were given HBC. They experienced fewer side effects of treatment at home compared with hospital treatment.

All of the informants slept better when they were able to sleep in their own beds: ‘Nothing is better than sleeping in your own bed’ (C). Several of them explained further that it was important for them to be able to relax, and that they got an energy boost by being at home. In addition, the informants said that they had a better appetite and less nausea. They ate more when they were able to eat the food they liked, together with others. 

When they compared being hooked up to a traditional drip stand, the informants said that it was better to have a backpack and be able to move around freely: ‘It gives me the freedom to do whatever I want’ (G). All of the informants described having freedom of movement as positive, so that they could participate in everyday activities when they were at home. 

Discussion

The study’s informants experienced different psychological effects as a result of HBC and possibly more negative effects than previous publications have reported. In previous studies, most of the patients were content with being able to spend time at home. The same applied to the parents of children who received HBC (2–5, 16–19). At the same time, our informants felt that it was positive to be able to maintain social ties and physical well-being with HBC. 

Adolescents and young adults receiving cancer treatment at home – the advantages and disadvantages

The informants perceived that the psychological effects varied. Some of them found HBC stressful and regarded it as a heavy responsibility. Measuring diuresis, using the infusion pump and administering medication were stressful. However, several informants said that this improved when they felt more confident and had been through this at home a number of times. Previous research also shows that confidence increases with experience (5, 17). 

Only a minority in our sample did not want HBC due to this responsibility, but some chose to undergo some rounds of treatment in hospital to avoid the responsibility and stress. Others found, however, that they were able to relax and were subject to less disturbance when they were at home and therefore chose HBC as often as they could. Some of the informants felt that the pump made a lot of noise and that the sound was more prominent at home. 

Another important aspect to take into consideration is how the informants perceived bringing the hospital home with them. For some, this meant that their home, which was their sanctuary, became filled with illness and treatment, which felt invasive and therefore created a barrier to accepting HBC. This finding corresponds with previous research, which shows that patients had similar challenges with HBC (18). 

Other research conflicted with this, finding that it was easier for patients to adapt to the situation if they received treatment in their own home (4). Our findings and previous research show both similarities and contradictory results. These aspects should be subject to focus in further work on HBC.

The psychological effects informants experienced may create barriers to HBC, so measures such as more training and patient involvement prior to discharge should be a priority. The same findings emerged in previous studies (4, 12, 16, 17, 19).

Our experience indicates that a good relationship with health personnel can be an important resource for AYAs undergoing cancer treatment. This relationship would probably be affected if they were not at the hospital. In our data there are different perceptions of this. 

Some informants found that time had been allocated for them when they were at the hospital, while one informant felt that patients receiving HBC came last in the queue. This informant said that there was no time allocated for HBC patients and that follow-up at the hospital was random. It is important to be aware of this when improving HBC, so that everyone who receives this treatment feels that they are being looked after.

The distance between the informants’ homes and the hospital emerges as a relevant factor in our study. Those with farthest to travel had the greatest level of stress. This finding is important for determining a limit on how far away the patient can be from a clinic when they are undergoing chemotherapy at home. In other words, the research indicates that it is necessary to set a maximum distance to enable HBC to be carried out safely and effectively. Even though some of the informants lived close to the hospital, they still felt that the journey was a strain.

There are many advantages with HBC for AYAs. If health personnel can remove the barriers to this treatment, the provision of HBC could benefit more patients in the future. 

The social needs of AYA sarcoma patients are looked after

The informants in the study lived with their parents or partners. They received good support from their families and considered social contact with them to be important. Several of them explained that socialising gave them an energy boost. Social ties and choices while undergoing treatment are important for coping with cancer treatment (6, 12, 19–21, 27). 

The findings in our study suggest that HBC contributes to less social isolation for AYAs while undergoing treatment. Our findings and previous research indicate that HBC is positive because it allows AYAs to be at home more often and participate in normal daily life with family and friends, as well as the social circle of their peers. 

For AYAs, a meaningful daily life is essential, and the maintenance of normality was a key reason to choose HBC. Normality seems to revolve around two different aspects: living with family and friends and avoiding being different. Both aspects are easier with HBC. Previous research shows that it is crucial to socialise with friends, attend school and maintain family contact (3, 6, 12, 17, 19–21). By supporting AYA cancer patients to live as normally as possible, the effects of cancer treatment on their psychosocial well-being can be reduced (14).

The suicide rate among AYAs undergoing cancer treatment is higher than in the general population. One reason for this may be the greater mental stress caused by treatment. Sarcoma patients are included among those at greatest risk of suicide (28). HBC can help to reduce the mental stress by reducing the extent to which patients feel alienated.

Managing chemotherapy-related side effects

The informants had a better appetite with HBC than when they were in hospital. Adequate food intake increases the likelihood of the patient being able to carry out cancer treatment and can therefore affect survival. Undernutrition is a known negative prognosis factor in cancer treatment that can result in dosage reductions, more side effects and complications (29). 

The informants reported having less nausea, which can reduce the level of feeling sick and have a positive effect on appetite. Nausea is described as one of the most unpleasant side effects associated with chemotherapy (30). It would be beneficial if AYAs could avoid this during their course of treatment. Being able to cope with side effects can have a positive effect on life quality, nutrition and the total burden of the illness and treatment.

Increased activity and freedom of movement were also positive for the informants. This is another advantage of HBC, as patients that stayed active had fewer side effects during treatment. The benefits of physical activity while undergoing cancer treatment may include increased energy, a better self-image, limited muscle loss and reduced nausea, stress and anxiety.

Another important finding that has been little referred to in previous research was that informants believed that there was a big difference between sleeping in their own bed and in a hospital bed. They slept much better at home. The stress that many patients experience can affect their sleep, and the fact that this can be ameliorated by HBC was one of the advantages perceived by the study’s informants. 

The informants felt that they were more content and had a better quality of life, which emerges as an important finding although the data is limited. Previous studies on HBC have also attempted to address well-being and quality of life, but have failed to find clear correlations (2, 12, 16).

Strengths and weaknesses of the study

The informants had different treatment goals and there was a wide spread of ages, which enriched the data. The basis for comparison was unique because all of the informants had received some treatment at the hospital. 

Our preconceptions can be seen as both a strength and a weakness of the work. Familiarity with the field of research makes it possible to develop questions for the interview guide that are relevant to the research question. At the same time, proximity to the field could affect analysis of the data. For example, something that is obvious to us might not be expressed as a finding. We were conscious of this during the analysis and used meaning units to ensure that what the informants told us is what is presented in the findings. This approach was also discussed at the master’s seminar and with the supervisor to increase the study’s reliability.

The fact that we only recruited informants from one hospital is a weakness (24). We could not include a broader selection because no other hospital in Norway offers HBC to AYA sarcoma patients. 

Conclusion

The study’s findings indicate that HBC has advantages and disadvantages for AYAs. The psychological effects differed. Some experienced increased stress and responsibility, while others had a sense of freedom and were better off mentally when they spent more time at home. One important finding was that multiple rounds of treatment at home increased the informants’ confidence. 

For those who received HBC, it was vital to maintain their social ties. They were able to be with their friends and family, which gave them an energy boost. Enhanced physical well-being, which entailed better sleep, less nausea and a better appetite, was an advantage experienced by all informants.

The study suggests that HBC is advantageous, but that the method of treatment itself can be further developed and improved. There is a need for more research in the field to optimise the method of treatment, so that it can benefit more patients. 

The authors declare no conflicts of interest.

Open access CC BY 4.0