The Norwegian health service faces various challenges related to coordination, the transfer of information and undesired variation (1). Poor quality and undesired events can lead to injury or early death (2). The challenges posed by the organization of the care trajectory in the health system (3) mean that more knowledge is needed on quality and safety.

The introduction of 28 care pathways within cancer treatment (4) has once again put a spotlight on the standardization of care pathways as a means of improving the quality of the health service. Internationally, standardized care pathways are increasingly being used as a tool for improving the quality of diagnostics, treatment and follow-up of hospital patients (5).

Confusing terminology

The diverse terminology used in standardized care processes is confusing. ‘ Behandlingsline’ and ‘ strukturert/standardisert pasientforløp’ are used in Norwegian, while English synonyms include ‘care pathways’, ‘clinical pathways’ and ‘critical pathways’ (6-8). In principle, it is important to make a distinction between when a ‘care pathway’ is used as an intervention, i.e. ‘standardization’, aimed at improving the quality of work processes, and when referring to the care trajectory from measure to measure, unit to unit, or between levels in the health service. The aim of standardizing care processes is to improve the quality of treatment processes (8–11).

The European Pathway Association (E-P-A) defines the standardization of care processes into ‘care pathways’ as ‘a methodology for the mutual decision making and organization of care for a well-defined group of patients during a well-defined period’ (12). This method is used to define goals and make decisions on what measures to include in the treatment. The measures included in the treatment should reflect evidence, best practice and the expectations of the patient. Health care personnel must facilitate and coordinate the communication, roles and order of work in the interdisciplinary team. In addition, it is important to document and follow up the improvement work systematically. The perspectives of the user and their family play a key role in the E-P-A’s definition of a standardized care pathway.

Towards a standardized care pathway

A good first step in the standardization of a treatment process is to develop a written procedure or written guidelines (10). However, improving the service requires the personnel working with the relevant patient group to adhere to such written specifications. In the efforts to standardize care processes, the interdisciplinary team (13) takes a targeted and systematic approach to methodology from the field of quality (10, 11, 14, 15). It is shown that this way of improving the organization of processes leads to a better patient outcome, a lower risk of undesired events, better documentation (11, 16-19), a better working environment and a lower risk of burnout (20, 21).

However, the methodology has also been criticized for not having measurable effects for all patient groups, and whether the cost of developing standardized care pathways justifies their use is a matter of debate (19, 22). In Norway, there is still a need for research on the standardization of care processes. Earlier studies in this country have shown that staff find that such interventions change practices, that the cooperation between contributors improves (23), treatment time is reduced (24), the number of operations performed increases (25), and the outcome for patients is better (26, 27).

Objectives of the study

Using the Care Process Self-Evaluation Tool (CPSET), we asked interdisciplinary teams in the specialist health service about their experiences with the organization of the treatment for specific patient groups. The aim of this sub-study was to map the staff’s perceptions of the degree to which the organization was patient focused, how well the treatment for the patient groups was coordinated, how well the communication with patient and family worked, how well the collaboration with primary care worked, and whether the standardization of care processes was followed up. A further goal was to examine whether the staff considered the organization to be better in the care processes that were standardized using a written clinical procedure compared to pathways without such procedures.

Method

Design and participants

In this study, staff took part from a total of six somatic hospitals and six psychiatric units in three of the four health enterprises in Western Norway Regional Health Authority: Førde Hospital Trust, Bergen Hospital Trust and Fonna Hospital Trust. The units included varied considerably in size, and both urban and more rural institutions participated. Participants were recruited at the care process, team and individual level. The goal was to include care processes within a wide range of conditions. Care processes were selected after asking senior managers in the health enterprises if units in their organization could provide data from specific care processes. In consultation with researchers and professionals, the managers selected relevant care processes and designated a contact person for each.

Care processes were defined according to the patient group, and were based on diagnosis or clinical images. Each individual care process should be typical of and represent a large share of the patients in the units, such as a ‘tonsillectomy’ patient in an ear, nose and throat unit. The contact persons knew both the patient group and the staff who were involved in their treatment. These contact persons provided a list of staff who made up the interdisciplinary team responsible for the treatment of patients in the selected care process. The following inclusion criteria were applied to the members of the team:

• All occupation groups that were involved in the treatment of the patient group.
• The respondents should have daily contact with the relevant patient group.

We then sent information about the project and a link to the questionnaire in Corporater Surveyor v.3.3 (Corporater Inc.) in an e-mail to 503 selected health personnel in 27 teams in 2012 and 2013.

At the start of the questionnaire, the patients were instructed on which patient group they should relate their answers to. For example, the respondents in the units where the care process for COPD was to be evaluated were instructed to answer the CPSET questions based on their experiences with the organization of treatment for patients with COPD in their units. A reminder was sent out to those who were invited to take part. The responses received were deidentified. In order to protect the anonymity of respondents, the ‘key’ that linked their identity to the analysis file was stored by Western Norway Regional Health Authority’s ICT service provider, Helse Vest IKT, in line with the regulations. The project was approved by the Norwegian Social Science Data Services, now known as the Norwegian Centre for Research Data (NSD). Table 1 shows the participating care processes:

The CPSET questionnaire

The CPSET is a questionnaire developed by researchers at the Catholic University of Leuven (KU Leuven) in Belgium, and is validated in the Belgian-Dutch Clinical Pathway Network in collaboration with the E-P-A (28-30). Patients, health care managers and a variety of professionals helped to develop the instrument (29). The questionnaire can be useful both for mapping the organization of specific work processes in a team perspective and for evaluating work aimed at improving the quality of processes in hospitals and research.

The form is used in several European countries (30, 31), and is currently being tested in France, Italy, Ireland and Germany. The CPSET measures how well work processes performed by interdisciplinary teams for specific patient groups in hospitals are organized, and asks respondents to give their opinions on 29 statements covering five conceptual areas (29, 30). The areas are represented by the following sub-scales:

• Patient-focused organization (P01–PO6)
• Coordination of the care process (COR1–COR7)
• Communication with patient and family (COM1–COM4)
• Collaboration with primary care (SE1–SE3)
• Monitoring and follow-up of the care process (OP1–OP9)

The health care worker gives a score for each statement using an ordinal scale from 1 to 10, where 1 means ‘totally disagree’ and 10 means ‘totally agree’.

An authorized translation agency translated the CPSET from the original Flemish to Norwegian. As a pilot, we first tested the translated version using ten professionals in the specialist health service (32). These came from various disciplines at a medium-size hospital in Western Norway Regional Health Authority. The feedback from the professionals suggested that the understanding of key terms, such ‘ behandlingsprosess’, ‘ behandlingsline’, ‘ behandlingsforløp’ and ‘ pasientforløp’, which are translations of ‘care process’, ‘care pathway’, and ‘clinical pathway’, varied a lot, while the understanding of ‘written clinical procedure for the care process’ was mostly good.

We therefore chose to translate ‘care pathways’ that referred to interventions aimed at standardizing the treatment process as ‘written clinical procedure for the care process’. In the study, we asked the respondents to answer the following questions: ‘Is there a written clinical procedure for the care process in the daily treatment of patients?’, and ‘If the procedure description/care pathway is being developed or currently in use, how many months has this been the case?’

Statistical approach

Because we had data from a variety of care processes, we chose to show the CPSET scores within each care process descriptively by giving an average, with upper and lower limits for a 95 per cent confidence interval (CI). This enabled us to see the pattern in the CPSET scores without having to conduct statistical tests with many comparisons. We wanted to test the disparities in the CPSET sub-scales and overarching scales between the groups who responded ‘yes’, ‘being developed’ or ‘no’ to the question of whether a written clinical procedure was used in the relevant care process. For this we used the Kruskal-Wallis test, with follow-up tests between sets of two groups. The tests were done in SPSS version 20 and were two-tailed with p-level 0.05.

Results

Response rate and valid care processes

Of the 503 team members who were asked to complete the CPSET form, 293 (58 per cent) responded. This corresponds to 27 care processes for 17 different conditions, representing nine clinical areas (Table 1). Nineteen care processes/teams worked within somatics and eight were in mental health care. We excluded questionnaires that lacked answers to more than three of the 29 statements. For respondents who had answered 27 or more statements, we replaced the missing answers with the average of the scores for the remaining answers.

We excluded five care processes that had fewer than five respondents with valid answers and/or a response rate below 40 per cent. The final analysis file (N = 239) thus consisted of 22 care processes. Of these, 17 related to somatics and five to mental health care. The average valid response rate in the care processes included was 56 per cent. Descriptive statistics for background variables in the valid sample are shown in Table 2.

Health personnel’s perceptions of the organization in the selected care processes

Figure 1 shows the average score with a 95 per cent CI for the 29 CPSET statements, in addition to the five sub-scales and the total scale in the valid sample (N = 239).

Figure 2 shows the average score with a 95 per cent CI for CPSET total scores per valid care process in the field of surgery, medicine and psychiatry. Of all the 22 care processes included, health care personnel in the care pathway ‘In vitro fertilization (IVF)’ gave the highest CPSET total score (9.0). Further examination of the average score with a 95 per cent CI in Figure 2 shows that health care personnel in the three lung-patient care processes gave a significantly poorer total score on the CPSET than most other care processes.

Staff in the care processes for stroke patients gave a significantly higher CPSET total score than those in the other processes. In the field of surgery, none of the processes stood out with a particularly high or low score. In mental health care, two care processes for patients with psychosis had significantly higher CPSET total scores than two of the other pathways in mental health care.

CPSET scores per organizational area

Examination of the 95 per cent CI limits on the five CPSET sub-scales (Figure 1) shows that the staff gave significantly higher scores on the sub-scales ‘Patient-focused organisation’ (PO) and ‘Coordination of the care process’ (COR) than on ‘Collaboration with primary care’ (SE) and ‘Monitoring and follow-up of the care process’ (OP).

Improved organization with written clinical procedures?

Table 2 shows the number of employees in the valid care processes who reported having a written clinical procedure in daily use in the care process. The total scores and sub-scores in the CPSET for employees in a care processes with a written clinical procedure in daily use were significantly higher than in the other two groups without a written clinical procedure in daily use (Table 3).

Figure 3 shows that the CPSET sub-scores range from the lowest scores in the care processes with no written clinical procedure in daily use, to the highest scores in the care pathways with a written clinical procedure in daily use.

Discussion

We found that the health care personnel’s perceptions of the organization of care processes in Western Norway Regional Health Authority vary, but on average they reported the quality of the organization as one point higher on the CPSET total scale than that reported by Belgian and Dutch health care staff in 2013 (30). However, among the Norwegian health care workers, the sub-scales ‘Monitoring and follow-up of the care process’ and ‘Collaboration with primary care’ were below average in relation to the Belgian and Dutch figures (30).

This finding, and the fact that the study sample considered the sub-scales ‘Monitoring and follow-up of the care process’ and ‘Collaboration with primary care’ to be poorer than ‘Patient-focused organization’ and ‘Coordination of the care process’ indicates that there is a need to improve the systematic follow-up of care pathways and the collaboration between primary care and specialist care in Norway.

Clinical procedures are associated with higher scores

Many studies have shown that standardizing care processes has a positive effect on teamwork and process outcomes in the health service (11, 16-21). In line with Vanhaecht et al. (2009) (17), we found that health care personnel considered the organization of care pathways with a written clinical procedure to be better than care processes that did not have such a procedure. In our study, care pathways with a written clinical procedure had the highest average CPSET scores. The staff in the highest scoring care pathways had been working systematically to improve the quality of treatment and follow-up of patients in recent years. The care processes with the lowest scores had either not adopted a written clinical procedure or the respondents were unsure whether such written procedures existed.

Quality, efficiency and the safeguarding of comprehensive and coordinated care pathways are key elements of the regional health authorities’ mandate and of the new national research strategy Health&Care21 (33). A wide range of initiatives have been implemented over the last 20 years aimed at improving the quality of health services in Norway. These initiatives include various ‘Breakthrough’ projects such as the Norwegian Patient Safety Programme: In Safe Hands using Global Trigger Tool (34), and the introduction of checklists (35).

This strong focus on quality and coordination in the Norwegian health service in recent years may be an alternative explanation as to why health care personnel in some care processes give the care process a lower score. Perhaps those who work with these care processes gave lower scores precisely because they set the bar high for themselves and their units when it comes to the organization of the care process.

Varying perceptions of the ‘care pathway’ concept

During the pilot study of CPSET, it emerged that professionals in the specialist health service interpreted the concepts of ‘care process’ and ‘care pathway’ in quite a few different ways. A written document describing necessary treatment measures in a sequential order is essential in most methods for standardizing care processes. However, we do not know of any Norwegian term for a comprehensive written document that corresponds to the English term ‘pathway document’ (10).

In order to make it easier for the respondents to understand what we were looking for, we therefore used the term ‘written clinical procedure in the care process’ in the questionnaire. We do not know whether respondents considered this term to be ambiguous, and using ‘written clinical procedure in the care process’ instead of ‘standardized care process’ or ‘care pathway’ may have made the findings less valid.

Some care processes, where health care personnel and managers had a strong focus on quality improvement, may have been more frequently included than other care processes, since the managers were asked to select care processes. However, the opposite is also conceivable, where managers who saw the need for improving the coordination of the treatment of patient groups in a unit wanted the staff who were responsible for this patient group to answer the CPSET statements.

One other potential source of error is that the parties involved may have had different understandings of the ‘care process’ concept, and if the term was less relevant, it may have made the findings less accurate. On the other hand, it could be argued that the results have a strong ecological validity because the units themselves defined ‘care process’ based on how this term was understood by staff in the Norwegian specialist health service today.

Not all disciplines were included

We believe that because so many different disciplines, occupation groups and units were represented, the findings can be generalized to a greater extent than if only a few occupations, disciplines and care processes had been included. However, some important occupation groups did not respond to the CPSET. For example, radiologists and radiographers, who are key personnel in the processes for stroke patients, were not represented, and doctors were also generally underrepresented. Doctors often initiate treatment measures, and may therefore perceive the organization as better than other occupation groups.

In the deep vein thrombosis (DVT) care pathway, only nurses were asked to participate, despite the fact that the CPSET was developed to measure the organization in an interdisciplinary team perspective. In general, nurses have close contact with the patient, and they can play a central role in the coordination between different occupation groups and units, but in this care pathway as well as others, overrepresentation or underrepresentation of occupation groups can lead to a somewhat skewed result.

We have recently shown that the Norwegian version of the CPSET has acceptable psychometric attributes (convergent validity, reliability) (32). Other translated instruments that measure coordination and communication are the Relational Coordination Survey (RCS) (36, 37) and the Nijmegen Continuity Questionnaire (38).

An important snapshot

Despite the weaknesses of the study mentioned above, we believe that our results provide an important snapshot of care processes in the Norwegian context. Although care processes have been mapped and researched in Norway (23–27, 39–45), we do not know of any other large-scale studies that have used validated measuring instruments and extensive sampling from a wide range of units in the Norwegian health service. We therefore believe that the knowledge this study provides about the organization of care processes is useful for health care personnel and managers who have a strong focus on quality improvement and patient safety.

Future research should link systematic quality work aimed at improving work processes to relevant outcome goals at the system and patient level. These may be related to complications, recovery and resource use. It will be particularly important to include the user perspective in future studies. This will throw light on whether and how the standardization of care processes impacts on the service user’s experiences of how they are approached and treated and whether they think they are given the opportunity to make important decisions about their own treatment and health care within the framework of standardization (46).

Conclusion

The average CPSET total score was higher than the equivalent international measurements. Staff in the specialist health service who were associated with care pathways that had a written clinical procedure reported better coordination of the treatment process than personnel in care processes where there was no such procedure.

The specialist health service should improve the systematic and targeted quality work by standardizing and following up care processes, and the collaboration with primary care should be strengthened. In this work, we believe it is particularly important to protect the user’s perspective, both in relation to treatment experiences and outcomes.

I would like to extend thanks to all staff in Western Norway Regional Health Authority who participated in the survey. Thanks also to Sissel Hauge at Stord Hospital for her linguistic assistance. The project was funded by the liaison committee in Western Norway Regional Health Authority through the Research Network on Integrated Health Care in Western Norway at Fonna Hospital Trust.

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The child health clinic and school health services have a long tradition of carrying out height and weight measurements during health check-ups of children and adolescents. Such check-ups have provided vital information and an overview of Norwegian children’s weight development. In 1998 however, the number of routine measurements of height and weight was reduced, and replaced by measurements undertaken when the public health nurse or doctor felt this was required on medical grounds (1). The reasons for the change in practice include a lack of documentation on the effect and usefulness of screening for height and weight, as well as concern that a focus on weight might trigger eating disorders (2).

More children and adolescents are overweight

The prevalence of overweight and obesity among children and adolescents has increased in recent decades and is described today as one of the greatest challenges in public health work (2–4). In Norway, 15 per cent of boys and 18 per cent of girls aged 4–16 are either overweight or obese (2). This increase places prevalence in Norway on a par with Great Britain and the other Nordic countries. 

Overweight and obesity constitute a complex challenge (5) that can partly be explained by more sedentary lifestyles combined with changed eating habits (6). The increase in weight is found in all social classes but overweight is more prevalent in the lower socioeconomic groups (7). Such groups are associated with less physical activity and a lower intake of fruit and vegetables (8, 9). Based on the weight increase, the Norwegian health authorities have decided to reintroduce systematic measurements of weight and height. They also recommend measures to prevent and treat overweight and obesity (2, 6).

New guidelines

In 2010, the Norwegian Directorate of Health issued national clinical guidelines for the primary health service on the prevention, assessment and treatment of overweight and obesity among children and adolescents (6). The guidelines describe the responsibility of health professionals for health-promoting and preventive measures, assessment and treatment. The measures are categorized based on iso-BMI. BMI stands for Body Mass Index, which is calculated on the basis of weight in kilograms divided by height in metres squared. Iso-BMI is BMI adjusted for age and gender (10). The World Health Organization (WHO) has classified weight in four iso-BMI levels (6, p. 31), as presented in table 1.

An iso-BMI of 25 to 30 is defined as overweight (6), and the national clinical guidelines recommend individual assessment and counselling by the public health nurse for this group. Research shows that it is beneficial to initiate measures as early as possible since this can result in the child ‘outgrowing its overweight’ (6). In 2011, the Norwegian Directorate of Health also issued national clinical guidelines on measuring weight and height at the child health clinic and school health services designating the points in time recommended for measurement (2).

Project to motivate lifestyle changes

A project group from the child health clinic and school health services in a municipality in south-east Norway conducted a project in the 2011/2012 school year. The aim was to encourage overweight children and their parents to change their lifestyle. Based on the point of time recommended for height and weight measurements in the national clinical guidelines (2), the project group focused on children aged 4 and 8-9 (Year 3 of primary school).

One cohort of Year 3 pupils from two schools, and four-year-olds from one cohort linked to a public health nurse at the child health clinic were given the opportunity to participate in the project. The project group made a strategic choice of two primary schools in order to include children from different social classes. The public health nurse at the health centre or at the child’s school informed the parents if weight and height measurements showed an iso-BMI of 25 or above. The children and their parents were invited to participate in one of the two following initiatives:

1. Three counselling sessions with a public health nurse and a physiotherapist at 0, 1 and 6 months after the measurement.
2. Three counselling sessions with a public health nurse and a physiotherapist at 0, 1 and 6 months after the measurement. In addition, the offer of participation in an activity group in the evening, once a week for eight weeks.

The aim of the first counselling session was to map the eating and physical activity habits of the child and the family in order to motivate them to start a change process and help them to set goals (11). The public health nurse and the physiotherapist carried out two more sessions with the aim of providing further counselling as required.

If the family agreed to participate in the second initiative, both the child and the parents were expected to take part in the activity groups, which consisted of different games and physical activity. A physiotherapist was responsible for the groups and conducted them in cooperation with physiotherapy students. As part of the activities offered, there were also two group sessions on the topic of diet. The parents of nine Year 3 pupils agreed to take part in either the counselling sessions (initiative 1) or the counselling sessions plus the activity group (initiative 2), while none of the parents of the four-year-olds wished to take part. 

The study and its purpose

In this study, we examine parents’ experiences with the project described above. In order to elicit parents’ perceptions, thoughts and experiences, we carried out a qualitative study with individual interviews (12). We wanted to acquire knowledge about how parents reacted to being told that their child was overweight, and how they felt about participating in counselling sessions and the activities offered. We applied to the Norwegian Centre for Research Data for permission and received approval to carry out our study.

Method

All nine parents who had participated in the project under the auspices of the child health clinic and school health services were asked to participate in the interview study. Six mothers agreed. Of the six who were interviewed, two participated in initiative 1 and four in initiative 2. Those who did not wish to participate said this was due to time constraints. We carried out the interviews in autumn 2012.

The first author of the article headed the child health clinic during the project period, but had not met the parents prior to the project. She was also project manager and carried out the semi-structured interviews. In order to be able to ask follow-up questions aimed at acquiring a deeper understanding, the interview format was flexible (12). We transcribed the interviews verbatim and analysed them with a view to eliciting the parents’ perceptions. Both authors read the interview texts in their entirety and we collaborated in the further analysis process to elicit further nuances in meaning. We used Giorgi’s method of text condensation and identified key topics in the results (13).

Results

A key finding in this study is that parents who were contacted by the public health nurse on account of the child’s overweight had conflicting emotions. They were concerned about protecting the child from the feeling that he/she was not good enough, whilst also recognizing the need for change in order to counter the further development of overweight. The findings shared common features that are summarized in four main topics: 1) Perception of criticism of the child and oneself, 2) A wish to protect the child, 3) Concern about the child’s experiences, and 4) Raising awareness and support for lifestyle changes.

Feeling that the child and the parents are being criticized

The public health nurse called the parents and informed them that their son or daughter had shown a considerable weight increase since the last measurement performed by the school health services. In our study, all the telephone calls were answered by mothers, and their reactions varied from surprise and anger to gratitude that someone cared. Some of the mothers were single parents, but when the parents lived together, the mother had discussed this communication with the father. Several said that they were unprepared when the public health nurse called, and that they felt ashamed and had a need to defend themselves. They stated that a letter in advance of the telephone call would have prepared them better.

Several felt that the child’s weight gain was not only a criticism of the child but also an indication that they had failed as parents:

‘But it’s like receiving a blow just where you’re most sensitive. And when it’s your child, it always hurts. And we kind of know that we haven’t done our job as parents. And there’s also an element of shame. You try to be positive and all that, but actually these feelings are still smouldering under the surface.’

Several of the parents in the study said that they too struggled with their weight, and that it was difficult to help the child with something they could not deal with themselves:

‘It was actually difficult thinking – now I have to go there (to the public health nurse), and I’m a bit heavy myself, and they might think that I’m not capable of eating sensibly.’

A wish to protect the child

All the parents felt that it was negative to direct too much attention to weight. They were worried that their child might acquire negative feelings about his/her own body, and at worst develop an eating disorder. Therefore, they did not want the child to be present during the sessions with the public health nurse, or that the nurse spoke to him/her alone about the weight development. There were variations in to what extent the parents told the child about their own participation in counselling sessions with the school health services, or why they were participating.

When both the child and the parents took part in the activities offered, several parents wanted to protect the child by saying that the activities were offered to all children. Other parents declined to take part because they were afraid that the child would be associated with ‘those who are overweight’.

‘And throughout the entire process he has never understood what he’s been part of. I don’t want him to go around thinking he’s fat, I don’t like the thought. I think he should have a good self-image, and that he should feel fine just as he is. The last thing I want is for him to find out in any way whatsoever that he’s chubby, or that he’s fat or that there’s something wrong with him, because there isn’t.’

Concern about the child’s experiences

Several parents said that the children perceived themselves as fat, and that they had said they were upset about this. Some of the children were very preoccupied with their weight, and weighed themselves every day. Several had received comments from their peers, and some had been teased by their fellow-pupils:

‘So he said himself that his tummy had grown big, and that he’d received comments in the shower at school that …, and he didn’t like that, so he was very upset about it. And this autumn he started Year 4, and they’ll have swimming so he’s dreading that, because of the girls.’

‘But he notices that when he has physical training, he soon starts sweating. And he thinks that’s uncomfortable. And he gets tired more quickly and lags a bit behind the others – they are faster.’

The mothers were frightened that the child would take it as a criticism if they limited their food intake. This was particularly challenging if the child was the only one in the family who needed such restrictions. Several mothers wanted more attention paid to healthy food in teaching at school – as a topic for all the children regardless of weight. It was difficult, for example, if other children took food to school that their child had been told was ‘off limits’. 

Raising awareness and support for lifestyle changes

Despite feelings of shame and guilt, the mothers said that they wanted information about the child’s weight gain. Some had not been aware that the child had gained so much weight, and the counselling sessions with the school health services had raised their awareness sufficiently to deal with the situation. Others wanted closer follow-up and were very satisfied with both the activity groups and the counselling sessions. 

Taking part in physical activity without pressure to excel was a new and positive experience for the child. The mothers got ideas for different activities they could do together as a family, and that led to happy and satisfied children and positive parents. They received crucial support in their attempts to change the family’s routines, and felt it was positive that people other than the parents provided information about physical activity and a healthy diet. The mothers were aware that the child’s diet was their responsibility, but found it a challenge.

‘It feels good to sit around a table and talk about it, but how will we manage to do this at home, and how can we ensure that the children are happy with what we’re doing, without putting pressure on them in any way?’

Discussion

The interviews reveal that the child’s overweight is a sensitive issue for the parents. Several parents were also unprepared for being told that their child was in the overweight category, as other studies have also demonstrated. Parents are more frequently unprepared in the case of boys, and the younger the child, the more unprepared they are (14–16). Our study shows that it was difficult to involve the parents of four-year-olds; none of them wanted to be followed up by the child health clinic. Perhaps this is related to the fact that many do not think about overweight in connection with a small child (14), and public health nurses are often met with resistance when they point out the increase in a child’s weight.

A new study, however, shows that overweight can be predicted from an early age, and when a small child’s iso-BMI increases, this should be noted (17). Parents feel that their parenting skills are being questioned when health personnel call attention to overweight. This perception is heightened when the parents themselves are overweight (10), as our study also found. Moreover, they feel that criticism is being aimed at a vulnerable and innocent child (18). Several of the parents in our study had unsuccessfully tried to lose weight, and they did not want their child to have the same experience. We see similar findings in another study (14).

Uninformed, judgmental and disrespectful approaches to problems of overweight may lead to reluctance to seek help from health professionals (14, 19). Our study confirms that overweight is stigmatized and reflects norms in contemporary society. This confirms that the public health nurse’s professional attention to the child’s weight development demands both sensitivity and professionalism in the encounter with parents. The public health nurse must speak to the parents about the child’s weight and development, and find out what kind of help and guidance they want. It is vital to take the parents’ feelings of shame and guilt seriously when planning preventive measures (20).

Parents have ambivalent feelings

In our study, as in others (16, 18, 21), parents are afraid that a child will form a negative perception of its own body if attention is drawn to weight. Being the parents of a child with a big body can be perceived as an ambivalent process. On the one hand, the parents will do everything they can to ensure that the child is in good health and does not suffer from overweight. On the other hand, they have an even stronger desire for their child to have a good self-image (18). A longitudinal study of Canadian children aged 10–11 shows the correlation between overweight and the risk of developing low self-esteem and poor mental health later in life (21, 22). Children as young as four–five are preoccupied with their own bodies and what they look like (23), and several of the children in the study themselves thought that they were too fat, and had received comments from their fellow pupils and been teased. 

The public health nurse plays a dual role in that he/she ‘warns’ the parents that the child is too heavy, while also counselling the child and the parents on how to achieve a good self-image. This poses a dilemma. It is vital that health professionals are concerned about the child’s self-esteem and mental health as well as the overweight (16, 19). The session with the parents should focus on the opportunity to safeguard the child’s self-esteem while initiating the necessary measures to stop the overweight. We know that it is better if the child outgrows its overweight as opposed to waiting for the child to put on even more weight, when it is more difficult to treat (17, 24).

Participated in activities

Parents of overweight children have different reasons for declining to take part in interventions against overweight. For example, some people are frightened that the child will be viewed as overweight (16), as was found in our study. It is important to take this challenge seriously so as not to do more harm than good.

Some mothers, nevertheless, chose to participate in the activity groups and found that being together with others with the same challenges was a help. They described how being physically active together with their own children and other parents and their children was a new and positive experience. Children’s sports activities often consist of various kinds of competitions instead of fun and games. Overweight children often feel a sense of defeat when they are not picked for the team, or when they realise that they cannot keep up (21). It is vital that there are alternative arenas where everyone can enjoy being physically active without being pressurized by a performance culture.

In our study, it was the mothers who participated in conversations and the activities offered. They explained that the fathers had no opportunity to participate. A systematic study of the literature shows that the mother often plays a more active role than the father in terms of the family’s diet (25), but in our study it emerged that the mothers may need support in this respect. The fathers can provide such support but research indicates that fathers often do not regard themselves as a target group for the work of the child health clinic (26). This gives pause for thought in terms of efforts to promote health.

The mothers in our study found the activities offered helpful, and they felt that they themselves were an important driver for activity and happy children. These perceptions are backed up by knowledge of the positive correlation between physical activity and self-image (21). Other studies also show that interventions focusing on physical activity and diet can have a positive effect on both weight and physical health (27, 28).

Although our study was small, and the findings cannot be generalized, it nevertheless provides important knowledge about parents’ experience with initiatives at the child health clinic and school health services.

Conclusion

Our study provides fresh knowledge about how parents perceive the encounter with the child health clinic and school health services regarding efforts to prevent overweight and obesity. Parents feel that the child’s weight gain is not only equated with criticism of the child but also criticism that they have failed as parents. Having an overweight child can entail a sense of shame. In order to protect their children, parents do not want to include them in dialogue with the school health services. Public health nurses play an important role in disseminating new information that overweight children can become overweight adults, and that the earlier attempts are made to reverse this adverse development, the better.

Lifestyle interventions can have a positive effect on the child’s weight development and health, and the public health nurse must support the parents in efforts to safeguard the child’s self-esteem in parallel with making changes to the level of activity and the diet. The study reveals that mothers feel that counselling sessions with the school health services are helpful, as is participation in the activities offered where they meet others in the same situation.

A positive feature was that the intervention involved both parents and children, and that the competitive element was replaced by fun and games. However, it is vital to focus more on including the fathers. The parents who did not wish to participate in the activities offered found it problematic that the child might be associated with being overweight. More research is needed on how lifestyle interventions can prevent overweight and safeguard the child’s self-image.

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Elderly home dwelling patients who suffer from multiple diseases, oral or dental problems, or who take multiple drugs may have reduced awareness of hunger and thirst. These problems may be underlying causes of malnutrition (1–3). Social isolation, depression and cognitive failure may also represent underlying risk factors of malnutrition (4–6). Norwegian and international studies have shown that the home-dwelling elderly are at risk of malnutrition (7–13). A number of studies point out that health care personnel have inadequate routines for, and insufficient knowledge of, the systematic recording of patients at risk of malnutrition (8, 14–16).

As early as in 2003, the European Society for Clinical Nutrition (ESPEN) recommended the use of standardised screening tools for assessing nutritional risk (17). In 2009, the Norwegian Directorate of Health recommended the use of such tools in the Norwegian Professional Guidelines for Prevention and Treatment of Malnutrition (18). The guidelines imposed a duty on the primary health service to carry out an assessment of nutritional risk on admission or registration with the service, and monthly thereafter unless there are medical factors that indicate otherwise (18). 

Guidelines may serve as a catalyst

It is often a long and complicated incremental process to implement guidelines based on research-based knowledge in the healthcare services (19, 20). Nurses and managers in the primary health service must be given an opportunity to familiarise themselves with the knowledge base, how the guidelines may be interpreted and how they may benefit patients. They also need to reach agreement on how to incorporate the professional guidelines in the organisation’s local routines. At the same time, it is important that nurses become aware of and can account for their own understanding of what is important and reasonable nutritional practice. They must also have the opportunity to discuss different points of view with patients and their relatives (21).

In other words, this is not a linear or technical process through which synthesised knowledge from research is transferred to practical actions. The guidelines may nevertheless serve as a catalyst that promotes knowledge-based clinical decisions in practice (20). McCormack and McCance (22) therefore maintain that the sharing of experiences is a basic requirement for practice development. Reflective group discussions on a focused theme may also form the starting point for participant and action oriented research collaborations (23–25). This type of research approach lends itself to involving several groups that follow their own discussion process, and then subject the resultant material to an analysis of the same theme (26).

The purpose of this study was to investigate the ways in which community nurses interpret and uphold professionally sound nutritional practice in accordance with the requirements set out in the Norwegian Guidelines for Prevention and Treatment of Malnutrition (18).

Method

The study is based on and analyses qualitative data gathered through two practice development projects in which community nurses were asked to explore their own practices in relation to nutritional care. The study was carried out in two Norwegian municipalities, studies A and B, each with a population of approximately 20 000 (27, 28). The focus theme was the nutritional care provided by the community nurses and their respective interpretations of the requirements set out in the national guidelines for the profession. In study A the exploration of the community nurses’ nutritional practice was particularly focused on their use of a specific screening tool: the Nutrition Journal (Ernæringsjournalen). Data were analysed across the two projects in order to provide new insights, if possible, and involve new concepts (26).

Sample

We asked the managers of the community nursing services in the two municipalities to recruit nurses for participation in the practice development projects. They assisted with recruitment by issuing an information letter to their nurses. The inclusion criterion for study A was a full time work equivalent of 75 per cent. Five nurses gave their consent to participating in study A, while 14 nurses gave their consent to participating in study B. Two of the participants in study B were nursing supervisors. In total, 19 nurses agreed to take part, all of whom worked a full time equivalent of 75 per cent or more.

Data collection

The data collection method in both projects was cyclical, involving experience exchanges, critical reflection and practical problem solving (29). Participants attended a number of meetings to explore a focus theme (26). The researchers in studies A and B made use of thematic interview guides with open-ended questions adapted to the focus theme. Participants were given an opportunity to voice their experiences and to give practical examples of their nutritional work.

The researchers conducting studies A and B encouraged participants to talk and reflect between themselves without exerting control (30). If anything was unclear or required further elaboration, the researchers would ask follow-up questions along the way. By utilizing multiple meetings and an explorative reflective approach, a number of different views, basic values and practice improvement proposals were put forward (25, 26). The third author was the research supervisor for both projects and a participant moderator in study B.

We collected data over a six-month period from three groups of participants: one group of five nurses under study A and two groups under study B – one with nine (B1) and one with five (B2) participant nurses. Each group met on four occasions. The body of data consists of the researchers’ transcribed recordings of twelve group discussions, four from each group. The study A group of participants retained the same members throughout. In study B, the groups were open and new participants joined along the way, challenging the group consensus with questions and alternative views. The researchers drafted a summary note of each meeting. The note was approved by the participants at the start of the next meeting. Themes for further exploration were carried forward to the next theme guide. This procedure strengthens the participants’ involvement with the knowledge process and the studies’ communicative validity (31).

Analysis

This study provides an analysis of the content of the twelve group discussions as well as the researchers’ reflections in retrospect on the possibilities and challenges encountered by the community nurses as they carry out their nutritional work. All authors studied the results of the two earlier projects. The qualitative content analysis was incremental, inspired by Graneheim and Lundman (32). As we identified meaning units, sub-themes and themes, we looked for patterns and categories across the material (table 1). When encoding the material we put emphasis on accommodating the community nurses’ different views (30). Our result chapter includes a number of quotes that highlight the participants’ different experiences.

The last analytic step involved an overall interpretation of the data material seen in the light of the study’s purpose as well as earlier research. This process saw the emergence of new dimensions and understandings of the community nurses’ nutritional work. These factors are presented in our discussion chapter, and they are also illustrated in figure 1 (see below). The discussion chapter further includes a critical assessment of the validity of the analyses.

Ethical considerations

The Data Protection Official for Research (NSD) considered studies A and B separately and gave their approval of both. All participants have given their informed consent in writing. Participation was voluntary and took place during working hours. According to the NSD, this study did not require further consideration and approval.

Results

The results are presented under four themes that were identified through our analyses of all the data: 1) support, 2) familiarity with the patients and their nutritional needs, 3) patient autonomy and the requirements relating to systematic nutritional assessment, and 4) practical challenges in providing nutritional care.

Support

The nurses were agreed that for systematic nutritional screening to be implemented, the support of the local authorities was required, as well as that of the management of the community nursing service. The managers must have an interest in and awareness of the theme: “The management needs to focus on it.” Nutritional screening must be integral to the organisation and routines must be implemented, both for staff who make decisions about the provision of care services in the home, and for the providers of such care, or in the words of the nurses: “It’s easy to let things slide; we need to have routine put in place.”

In study A, the local authority had decided on the Nutrition Journal as their chosen screening tool. In study B, the local authority had yet to choose a specific nutritional screening tool. Participants in this study found it problematic that this indecision prevented them from implementing a nutritional screening tool.

Familiarity with the patients and their nutritional needs

The community nurses described the practical facilitation of meals in various patient situations as being significant. Several of them reported that they talked to their patients about what they had eaten on a daily basis, and about what they had in their fridge. The nurses emphasised that they were well acquainted with the patients and that they intervened as and when required: “We know them so well that we intervene straight away when the home becomes chaotic.” The nurses felt it was most important to prioritise the assessment of nutritional risk in the sickest patients, and in those who had lost considerable weight.

The nurses discussed the definition of “malnutrition”. They said as follows: “We talk to them about not eating very much; we never say that they are malnourished.” A joint read-through of the national professional guidelines gave the nurses new understanding that malnourishment is the mismatch between the patient’s needs and their actual intake: “We knew that nutrition was important, but now we think more broadly.”

The nurses strengthened their professional involvement with nutrition and local knowledge through group discussions. The nurses passed on this local knowledge through reports, in staff meetings and by providing guidance: “When the assistants say: ʻHe’s so skinny’, I explain that this means we need to keep records, you see.”

Patient autonomy and the requirements for systematic nutritional assessment

The nurses stressed their own respect for the home-dwellers’ autonomy. They put particular emphasis on the domestic arena as a private space and on behaving in ways they assumed to be appropriate in the patient’s own home. Some of the nurses felt it was inappropriate to weigh the patient, because this might affect the patient’s dignity and autonomy.

During group reflection sessions it emerged that the patients themselves were reluctant to step onto the scales, and this could influence the nurses so that they skipped the weighing. Others were worried about offending the elderly women’s “pride as a housewife”: “You can’t tell an old housewife that she is unable to look after her own food intake.” During the professional reflective sessions the nurses asked questions such as: “Is it natural for them not to want to eat that much any longer?” and “Should they be allowed to choose for themselves?” 

The nurses felt it was challenging to keep track of the home-dwellers’ actual intake of food and drink. They were particularly concerned about dementia sufferers who forget to eat or drink, and felt it could be difficult to follow up with systematic recording: “We never make use of drink lists, as they might be drinking when we’re not around. They live at home, after all, so there is no point.”

Practical challenges associated with providing nutritional care

The nurses discussed how they could best prepare the patients for the nutritional screening. They felt it was best to provide information about the weighing and screening for nutritional status beforehand, for instance the evening before: “A bit of planning is required. You need to bring a set of scales, forms, measuring tape and such like.” Nurses who agreed a suitable time for the weighing with the patient, were positively received: “He’s been waiting for me with those scales, you know.”

Nurses who suggested and carried out the weight check were surprised by the patients’ positive response: “I think the service users felt it was a positive thing; that it was a sign that we cared.” This motivated the nurses to raise questions about weighing with more patients. They found that systematic nutritional screening could be carried out in connection with other jobs. Relatives expressed that they were grateful for the screening. They were also grateful that professional attention was given to insufficient food intake and weight loss.

Because the nurses found that many had no scales in their own home, the community nursing service purchased several simple sets of scales. If the patient was unable to stand, there were practical challenges involved with conducting the weight check in the home. The nurses would then propose to delay the weighing until the patient was scheduled for a short stay in a nursing home. The nurses found that it could be difficult to measure height: “She is unable to stand upright.” They discussed other ways of measuring height, for example by taking under-arm measurements, but this method was never tested in practice.

Study A made use of the Nutrition Journal screening form. This tool strengthened the nurses’ observations and their interaction with the patients: “We are able to make lots of observations while we are preoccupied with this.” New nutrition-related initiatives were implemented, and they evaluated the effect relative to the patient’s situation. In their evaluation summaries, the nurses pointed out that the nutritional screening did not take up much extra time: “It’s not as time-consuming as you think.”

If the nurses were working under great pressure, some chose to postpone the nutritional screening to another day. A number of nurses in study B pointed to the staffing situation as a constraint that could prevent them from undertaking the nutritional screening. They were also critical of the local authorities’ practice of drawing up time schedules to the minute, which they felt was a professional constraint: “If the job is shower x 1, we will never ask about food before we see it is a problem.”

When the nurses were planning meals for people with a poor appetite, they accentuated the social significance of meals: “Eating together creates a sense of wellbeing.” The nurses felt that for home-dwellers who live alone and whose food intake is low, eating in the company of others would be an important initiative to improve their wellbeing. They considered that co-eating was not feasible within the time constraints imposed on community nurses. They were also critical of the practice of re-heating dinners: “Three minutes of a faint aroma emanating from the microwave will never sharpen anyone’s appetite.”

Discussion

The community nurses considered that the provision of patient-centred, practical nutritional care was important. They felt that it was challenging to meet the requirement for systematic screening of the patient’s nutritional status. In institutions they are able to observe and screen the intake of foods and liquids, but in a domestic setting it can be difficult to undertake such observations and screenings if the home-dwelling patients forget what they eat and drink. They also pointed out that it may be inappropriate to make use of such recording practices in the home.

In an effort to explain the complexity of the nutritional practice in community nursing, this is illustrated through four mutually dependent dimensions (figure 1).

The individual

The first dimension includes the nurses’ knowledge and understanding of the home-dweller’s experience of their own life situation and personal challenges. This is the very core of the nurses’ practice. This person-centred perspective goes beyond the traditional perception of individualized care (33). Person-centred care means that the nurse is familiar with the individual’s values and life story, demonstrates responsiveness and attention and involves the individual in decisions about their own physical and mental care (33). This dimension involves an understanding that the patients’ assessment of their own functional abilities may differ from that of the health care personnel (34). Decisions made by the nurse are therefore the results of negotiations between nurse and patient (35).

In nursing, nutritional person-centred care revolves around making practical arrangements for meals in cooperation with the home-dweller. Furthermore, the studies’ findings showed that the nurses were concerned about the food intake of dementia sufferers who live alone. The challenge for their nutritional practice was to support the home-dwellers autonomy while at the same time identifying the health-related challenges of reduced appetite and weight loss (6, 36).

Some nurses assumed that the patients did not wish to be weighed and were surprised that the home-dwellers and their relatives took a positive attitude to the weight check. Relatives were grateful for the screening and for professional attention being paid to insufficient food intake and weight loss. These findings coincide with earlier research which has shown that relatives are often very concerned when the patient suffers involuntary weight loss (10, 37, 38). The discrepancy between the nurses’ assumptions and the home-dwellers’ experience of being weighed, highlights the importance of ensuring that community nurses are aware of the patient’s values and preferences in their nutritional work.

The home

The next dimension includes the importance of the domestic arena to the provision of nutritional care. The home may be described in positive terms such as security, intimacy, private life and control (39). The findings of our study showed that the nurses attached importance to the home-dwellers’ independence and dignity when referring to the home. This finding matches the traditional values of the community nursing service whose hallmarks include the preservation of domesticity, and ensuring that the home remains the individual patient’s arena (40).

On the other hand, it was a challenge that the home visits were of short duration and gave little opportunity for systematic nursing observations around the clock. When seeking to develop the nutritional care work further, it will therefore be important to ask how the community nurses may strike a balance between what is appropriate in the private space, and the requirement for systematic observations.

Practical arrangements

The third dimension includes practical arrangements, which are often based on the nurses’ local knowledge relating to available time slots and their opportunity to prioritise tasks. The solution-oriented attitude of nurses with respect to practical nutritional interventions coincides with earlier studies of service-provision in the home (41). Within their own scope of action the nurses prioritised the sickest patients with a need for intake of nutrition. This matches reasonable expectations of the right course of action in a medical context (42).

The screening and follow-up of a large number of people would result in greater workloads, and this requires a level of prioritisation beyond what is available to individual nurses within the confines of their shift. The assessment of nutritional risk should therefore be included in decision-making procedures, and screening tools should be included in the documentation system and daily schedules. A number of case studies have shown that the discussion about screening tools may end up with no screening tool being chosen because no agreement is reached about which is the most useful (43). The choice of a screening tool is therefore a necessary first step (43).

Our study showed that in one municipality, the managers were involved with the choice of a screening tool, while no such decision had been made in the other municipality. Inadequately resolute support was considered to be an obstacle to a change of practice. This finding coincides with other studies which point out that managers must be active participants and drivers in the quality development effort (25). The nutritional screening is intended to help ensure that malnutrition is not ignored. According to Juul and Frich (44), “bottom-up” and “top-down” processes are all useful and important for achieving change of practice. A lack of clarity with respect to areas of responsibility may therefore prevent the development of knowledge-based practice (44).

Professional guidelines

The fourth dimension includes the need for general knowledge about nutrition and the need to understand how the professional guidelines may be applied. It is also necessary to understand how malnutrition arises, and what actions must be followed up in order to draw up long-term strategies for change (43).

In their reflective discussions the nurses discussed the requirements set out in the national professional guidelines with respect to assessments of nutritional risk. They voiced their professional appreciation of the need to record food intake and check the patients’ weight when assessing their nutritional risk (18). However, they also questioned whether it was possible to meet the nutritional risk assessment requirements with respect to all patients on registration with the community nursing service, and monthly thereafter.

Furthermore, the wording of the guidelines was considered to be academic and far removed from the every-day language used in clinical practice. The nurses also had no experience of using standard tools for assessing nutritional risk. These findings were not unexpected. Earlier research has demonstrated negative attitudes among nursing staff to systematic screening and nutritional assessment (41, 45). The Norwegian Board of Health Supervision have found in their system audits that 80 per cent of all local authorities undertook no systematic risk assessment with respect to nutrition (46). This demonstrates that there is a need for greater knowledge and more systematic nutritional care in community nursing.

The study’s strengths and weaknesses

The focus theme of this study concerned the nutritional care provided by community nurses and the requirements set out in the national professional guidelines. It is a strength that the study is based on and analyses data from three different groups of nurses who had explored their own practice over time. At the same time, it is a challenge that data from these groups stem from two independent projects in which the nurses in study A were more action-oriented than those who took part in study B.

The purpose of this study has therefore been to look for commonalities between the two earlier studies while ensuring that the nurses’ different views were voiced across all groups. While conducting our analyses we have however been aware that a pressure for consensus may be a possible source of error, causing participants to express a shared understanding while they in fact hold different views (26).

In both projects the researchers made use of open-ended questions and invited the nurses to share their experience of providing nutritional care in compliance with the requirements of the professional guidelines. The methodology involving reflective discussions was used in both projects since the third author acted as research supervisor for study A and as participant moderator for study B.

The objective is not to generalise from the results of the qualitative analyses (30). The study shows the nurses’ experiences while the researchers add theoretical knowledge and research methodology beyond their experience-based knowledge. Because there is little research-based knowledge available about the implementation of the Norwegian Guidelines for Prevention and Treatment of Malnutrition (18) in the community nursing service, the results of the study will have validity if they can contribute to continued discussion and inspire further studies.

Conclusion

The nutritional nursing care provided by the community nursing service is characterised by person-centred and practical approaches suitable for the domestic arena. Implementing standardised screening for nutritional risk, which is one of the requirements set out in the national professional guidelines, may therefore be seen as a challenge (18). On the other hand, the national professional guidelines create a shared knowledge base for managers and nurses. The findings of this study show that it is important to ask critical questions about whether the national professional guidelines take sufficient account of the domestic context. The community nurses have limited opportunities to accurately record the intake of food and drink around the clock.

In order to strengthen the nutritional work carried out by community nurses, it is important to continue sharing experiences and to contribute to critical reflection on ways that standardised mapping tools may serve to provide quality assurance of practice. To implement systematic assessments of nutritional risk within the existing framework of resources, it is essential that management and staff within the community nursing service work in closer partnership with patients and their relatives. 

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Clinical supervision is a complex activity that can be difficult to measure in terms of effect, and there are few randomised studies on the benefit of supervision. The studies that do exist show that supervision can be most effective when the focus is aimed at relevant and contextual themes. Due to the complexity of supervision, qualitative studies are best suited to exploring the impact of supervision and its potential transfer value in practice (1).

If supervision is to be successful, it must be anchored locally. The supervisor must recognise the contextually complex challenges experienced by professional practitioners in their work (1). Many decisions in nursing practice are taken intuitively. Nursing supervision can provide an opportunity to reflect on ethical challenges. The supervision can also strengthen the nurses’ awareness when faced with difficult ethical choices (2).

Obligations and ethical considerations

A study on nursing in primary mental health and substance abuse work (3) shows that nurses working within this field are well qualified, with relevant further education and extensive clinical experience in working with pertinent target groups. The study also reveals that nurses possess qualities such as flexibility and pragmatism, and that they give priority to a relational cooperation with the patient.

The binding relational cooperation with patients in different life crises at district psychiatric centres (DPC) entails a variety of ethical and professional requirements. Nurses may be affected by meetings with patients experiencing such life crises (4). The context in which the relational cooperation and the ethical requirement occurs can sometimes prevent nurses from doing what they feel is right for the patient. One such example may be when a nurse is instructed to discontinue an ongoing and unfinished collaboration process with a patient. An ethical awareness of what the nurse considers necessary, but is not allowed to carry through, may be a challenge, but it may also prevent moral stress in the long term (5).

Responsibility versus authority

It is important for professional practitioners to have collaborative relationships in which individuals’ ideas are challenged and safeguarded, and can develop jointly (6). Under the provisions of the Coordination Reform (7), professional practitioners at DPCs are required to collaborate with many different actors and agencies. The purpose of interprofessional, interdisciplinary and interagency collaboration in mental health work is to build a common value basis for the collaboration. Professional practitioners may, however, consider this challenging and complex (8, 9). Feeling a sense of personal responsibility when dealing with patients can sometimes represent an ethical dilemma and create problems (8). Nurses are responsible for their decisions, but they do not always have the authority to act in situations where other collaboration partners are involved. Responsibility and authority can be linked to both individuals and systems (2).

The purpose of the study is to examine how ethical reflection in supervision can help raise awareness and prevent moral stress.

We will elucidate two research questions:

• What can be the theme of a supervision group that specifically raises questions about ethical challenges and collaboration?
• How can supervision contribute to ethical awareness and reflection in interprofessional and interagency collaborations?

Method

Design, data collection and the focus of the supervision

The study has a qualitative approach and a descriptive and exploratory design. We collected data from two 90-minute focus group interviews. The first of these was held in June 2013 prior to holding eight 90-minute supervision group meetings. The second focus group interview was held in August 2014 after the supervision group meetings. Focus group interviews are a suitable interview method for eliciting views and opinions about a specific topic. The group conversation can trigger various reflections and associations that can shed light on practices, thus providing a richer body of data than individual interviews (10). The second author led the focus group interviews. A digital audio recorder was used to record the interviews. The first author, who was also a group supervisor, transcribed the recordings verbatim.

After describing a practice situation and reflections on this, the supervisor asked two specific reflective questions:

• What do you think was the core ethical challenge in the situation that was presented?
• What do you think were the main challenges in the collaboration in this situation?

The keywords noted in a journal by the supervisor following the supervision group meetings also form part of the data source, and are included in the discussion.

Sample

We invited all of the nine psychiatric nurses at a DPC to take part in the study, and they all accepted. The participants were employed at the same workplace and therefore faced many of the same challenges in their daily work. Having a common starting point can be a benefit in the supervision (1). Seven of the participants were affiliated with the centre’s general psychiatric outpatient clinic, and two were affiliated with the substance abuse outpatient clinic. The participants had worked as psychiatric nurses at the centre for more than ten years.

Ethical aspects

The invitation to participate in supervision and a focus group interview was cleared with the participants’ manager. Because the supervision was part of a research project at our college, it was provided free of charge by the first author. All of the participants received written and oral information about the project and gave written consent to participation. We have not recorded personal data relating to the participants, their collaboration partners and/or patients and their families. Only the professional and ethical content of the collaborative situations has been described and analysed. The Norwegian Centre for Research Data (NSD) did not impose a notification requirement on the study.

Analysis

We have used a hermeneutic-phenomenological method to analyse the text with a view to understanding and describing the nurses’ subjective experiences of their working day. As researchers, we have searched for meaning and understanding through an interpretative process: we first read the text whilst remaining as open-minded and non-judgemental as possible. Then we conducted a structural analysis before formulating an overall understanding (11).

On first reading, we endeavoured to maintain an open mind, and were empathic to the content of the text. Repeated readings led us to a structural analysis. The structural analysis was conducted by identifying statements that link the participants’ experiences in four meaningful themes. The overall understanding emanates from the participants’ descriptions of different collaborative situations.

The first and second author carried out the main analysis. The third author was a participant in the focus group interview and the supervision group. She subsequently participated in the research process by reading the texts and giving comments.

Results

Here we present first the researchers’ overall understanding of the ethical challenges described by the study participants. We have summarised the overall understanding in a statement used by several interviewees. The statement is: ‘I feel frustrated on the patient’s behalf’. Then we describe the study results from the structural analysis through four meaningful themes.

The statement reflecting the overall understanding of the study was used by the participants to describe situations where they considered the treatment offered to the patients to be inadequate. They expressed concern that patients did not receive the necessary health care within a reasonable period of time. The statement was also linked to the participants’ perception that the assistance offered to the patients was not good enough. One participant said the following in relation to how it feels when management lacks understanding in such situations:

‘We feel a bit useless sometimes. Patients are suffering. Treatment doesn’t help. When I raise the issue with management, they say, “What do you want me to tell you? Just end the treatment!” All I ask is that we discuss what is beneficial.’

Theme 1: The tension between professional and ethical dilemmas

‘Patient assessment means moving away from ethics – there are an increasing number of assessments and diagnoses.’

This is a quote from a participant who described the sense of tension between professional and moral dilemmas when dealing with patients. On the one hand, participants felt a professional obligation to follow the existing guidelines. On the other hand, they felt a sense of loyalty to protect the patient ethically. One participant made the following comment:

‘Prioritising means rejecting the patient – it leads to a feeling of shame and touches on existential issues.’

The participants spoke about meetings with patients that touched them personally. At the same time, they felt an obligation to take into account the requirements of the treatment system, which they were also part of. One such statement was as follows:

‘I am often touched by a situation, and when I am, I have a good tool to draw on. When I'm not affected; those are the ones I spend the most time on in supervision.’

Emotional experiences such as sadness, loss of confidence, feelings of inadequacy, shame, and being unable to adapt the nursing care to the individual patient were topics discussed. Participants expressed the feeling of being unable to show compassion and having insufficient time to get more involved as ethical and professional dilemmas.

The participants felt they had a solid professional basis for considering what they thought was necessary for the patients they were responsible for. This self-assuredness could present a challenge when they were expected to follow management’s wishes and requirements. The following two statements exemplify this:

‘A bad conscience for not doing what you should.’

‘I despair about the things I don’t have time to do and that I am not allowed to do. Sometimes I do it in secret.’

According to the participants, ethical questions were neither adequately discussed nor prioritised in their daily work. The participants often felt alone when dealing with ethical issues, with one making the following observation:

‘Ethics and ethical issues sound good – like decorations on a cake. But any time I have raised the subject, I haven’t got anywhere.’

Theme 2: The dilemma between patient needs and the treatment system

The participants described how the framework for the help they should give has become narrower. They meet patients with major challenges, but find that the systems in the specialist health service and the first line do not have a holistic approach and are limited in terms of time. One participant described the experience of not being able to accommodate the patient due to a constricted framework as follows:

‘The patient is falling by the wayside. The framework is not fit for purpose.’

The participants put a large emphasis on situations where they had to refer a patient for treatment at a different level when they knew that treatment did not work or did not exist. Expressions like ‘to witness’, ‘end the treatment and then what?’ and ‘to feel shame’ were used in relation to such experiences.

They experienced several ethical dilemmas. One example was the treatment system’s guidelines, which were not adapted to individual patients’ needs for time and pace. Another example was that the treatment should be quick and effective:

‘Challenge the patient at a suitable pace – don’t just thrust her into exposure therapy! That would be unethical.’

The participants used the relationship between professional practitioners and systems to describe ethical reflection in the team collaboration. The participants had varying experiences here; some expressed that there was no ethical reflection in the collaboration, while others commented that ethical reflection was an integral part of the daily collaboration in the team.

Theme 3: The challenges of the collaboration

The participants described ethical challenges related to collaborative situations, where, as nurses, they felt the gap between treatment needs and treatment options was too great. They also told of collaborative situations where they felt that the dignity and autonomy of patients were not adequately protected. They described situations where the duty of confidentiality obstructed therapeutic openness. They discussed the need for fast and seamless interventions instead of slow systems bound by rules. One participant described how rules that are too stringent can mean less flexibility:

‘Being tied down by rules gives fewer opportunities to act.’

Several of the professional groups in the team they belonged to shared this opinion. Ethical issues in different collaborative situations were in evidence irrespective of the profession according to the participants, as reflected in the following statement:

‘The systems are after all made up of people... Rigidity exists in all disciplines.’

The participants described ethically challenging situations when the duty of confidentiality obstructed the necessary therapeutic openness. One such example was a patient who did not want his GP to know that he was receiving treatment for substance abuse at a DPC.

Theme 4: The impact of supervision on ethical awareness and exercising resolve

The participants said that the supervision had positive effects, such as strengthening their resolve and making them more aware of their values. Other examples were that they became more reflective and articulate, particularly when there was a disagreement in the collaboration:

‘Explaining ethical dilemmas can have an effect on the system – the system world. The supervision has strengthened my courage.’

The participants felt that the systematic and specific ethical reflection in the supervision was practical and relevant. It also helped to clarify the values of their professional role and the moral responsibility they had for the patients. Some participants felt a sense of shame when they were unable to act, in terms of their own values, the patients’ needs and the requirements of the treatment system.

Awareness of own values in a collaborative situation is probably also more important than finding clear answers, with one participant making the following observation:

‘A dilemma is by its very nature unsolvable – which makes it hard to come up with good answers! The question that has been asked: What is the core challenge here? I think that’s good. It makes us think. And finding an answer isn’t easy.’

Another theme was that raising issues ‘behind someone’s back’, such as in a supervision group where the other party is not present, could in itself be an area of vulnerability and be perceived as an ethical dilemma.

Discussion

The overall understanding of the study ‘I feel frustrated on the patient’s behalf’ can be interpreted as an expression that the nurses recognise and care about the patients’ unfortunate experiences in their dealings with treatment systems. The participants’ descriptions of their practice confirm that they are expert nurses (12), and as such their work with the patient is based on intuitive clinical judgment and a large degree of flexibility (3). They also describe how these characteristics clash with the restrictive frameworks and guidelines.

The phrase ‘on the patient’s behalf’ can be understood as an expression of values ​​that relate to the nurses’ personal and professional responsibilities and obligations in their dealings with individual patients. General basic values ​​in nursing are linked to the individual’s life and inherent dignity (13). The participants describe how individual adaptation of measures is often ignored in favour of more general measures. One example of individual adaptation was an appropriate timeframe and pace for a young person who needs a certain amount of time to build a relationship of trust with the nurse.

Ethical dilemmas could arise because clinical judgment and desired treatment for the patient are at odds with systems that prevent the nurses from fulfilling the individual patient’s needs. Such individual adaptation can be described as ‘tailored’, while the term ‘ready-made’ could be applied to measures that are appropriate for a group of patients with the same diagnosis (14).

Experiencing moral stress and shame

The nurses in this study reported experiencing moral stress when working in systems that made it difficult for them to act in accordance with their responsibilities and obligations (15). Moral stress differs from other forms of stress, and is manifested when professional obligations and professional integrity are compromised, thus creating a barrier to acting in an ethically appropriate manner (15).

The study participants reported that they were prevented from performing the nursing care they considered necessary and in line with basic care values. This made them feel a sense of shame. Shame is linked to the self or to the person we want to be (16). We may feel shame when we are party to actions that are contrary to the ideals we formed during our education, and which we wish to live by (17). The participants associate shame and existential issues with priorities that led them to reject patients. Loyalty to what is necessary for the patient appears to play a significant role in the participants’ professional and ethical considerations.

One participant claimed that ‘ethical reflection helps prevent the lifeworld from being colonised by the system world’. The statement can be understood as a perceived conflict of values when the practitioner’s values are compromised in interaction situations in which they act on the patient’s behalf. Work on ethical awareness in supervision may have served as a counterweight to structural power that empowers professional practitioners (18). If nurses are to clearly identify problems and find good alternatives for action, both the lifeworld and the system world must be discussed and differentiated in the supervision (19). Although framework conditions may be at odds with a person’s conscience and the professional code of ethics, being aware of the moral responsibility in every situation will make the nurses more attentive and vigilant (20).

Ethical challenges

When the scope to act was too constricted, the participants sometimes dealt with their ethical challenges, or the dilemma they were facing, by keeping actions secret from collaboration partners. This may be a way of taking back power in a context where power structures define the content of a patient’s treatment. Dealing with the ethical challenges in this way can accommodate the patient’s needs and reduce the nurse’s dilemma.

Based on a more comprehensive and societal argument, using this method to deal with ethically challenging situations may undermine important professional and ethical grounds for what patients need. If conversations about ethical challenges, choices and decisions are part of the professional practitioner’s working day, they can become an interdisciplinary and interprofessional collaboration. In the long term, this may benefit more patients (21).

Bad conscience when they are unable to meet their obligation

The phenomena ‘responsibility’ and ‘duty’ appear to represent important care values for the nurses in this study. The way in which they describe their sense of responsibility can be understood as a combination of professional responsibility as enshrined in the legislation (22) and work ethics guidelines (13), and a personally perceived responsibility that can be understood as an individual and existentially substantiated responsibility (20).

When the participants find that they are unable to meet their obligation, they feel a sense of despair and have a bad conscience. They describe it as being witness to something they consider inadequate or wrong for the individual patient. The perceived dilemma can be understood as a gap between what they think is appropriate and correct for a patient and what is actually offered. For the nurses, witnessing something can entail watching something happen without being able to exercise their responsibility and carry out their duty. This can partly explain the bad conscience that participants expressed in several of the supervision group meetings and the focus group interviews.

Collaboration challenges

The study’s other research question asks how supervision can contribute to ethical awareness and reflection in interprofessional and interagency collaborations. The participants consider the opportunity that the supervision provides for focused reflection on ethics and collaboration to be more important than finding clear answers. This concurs with other descriptions of expert nurses’ experiences and needs in supervision (8).

The results from the focus group interviews are consistent with the themes in the supervision group, which are, for the most part, descriptions of challenges related to systems and frameworks as opposed to the participants’ day-to-day collaboration partners. The participants described it as an ethical dilemma ‘to go behind someone’s back’, and did not therefore want to discuss collaborative situations from the interprofessional team they worked with on a daily basis. Supervision teams, made up of various professions working together on treating patients, could generate a wider variety of perspectives (23) than supervision groups composed of just one profession.

Reflection in the supervision

In this study, we sought to delimit our focus on the supervision by using two specific reflective questions for the narratives about practice. One question was aimed at the core of the ethical challenge in situations from practice. This delimitation can make the supervision more targeted and more measurable (1). The opportunity to think about defined themes and in a focused manner was appreciated by the participants.

One participant describes how reflections in supervision related to ethics and collaboration have given them the courage to influence the systems. Courage can be attributed to qualities such as strength, resolve and boldness (24). As such, we suggest that supervision that focuses on reflection on ethical challenges and collaboration can help create a greater scope to act.

Supervision can be described as the ‘space for reflection’, where we consider practice with the benefit of hindsight, and where professional practitioners have the time and opportunity to think slowly (8). Clinical practice, where meetings with patients and collaboration take place, is on the other hand characterised by rapid, instinctive and emotional assessments and decisions (25). We can use the term ‘slow thinking’ about the form of ethical awareness that took place in the supervision in this study (25). The term entails a slower and more reflective process than when in the middle of complex and challenging practice situations. In a supervision group, the supervisor can ensure that professional practitioners review ethically challenging situations from practice at a slow pace. The slow review enables plenty of time for reflection, and can help the practitioner to make more integrated, conscious and moral choices (2), which in turn strengthen courage.

Limitations of the study

This study focuses on describing how nurses can reflect on ethical challenges in the collaboration with the patient and treatment system. Such reflection can lead to greater awareness of ethical values. The results of the study may have been influenced by the fact that the participants were all from the same workplace and the supervisor had a dual role as a researcher and professional. Proximity with the field of research is useful, but may also be a weakness, and requires conscious reflection on preconceptions (26). If the results are to be useful to others, the interpretations in the study must provide recognition and meaning in the reader’s lifeworld. In addition, the results must be used to improve practice.

Conclusion

Collaboration can be described as an interaction in which individuals’ values are under threat from different systems. The system world can be at odds with and affect individual values and norms for good practice, and can represent a source of anguish for professional practitioners. When supervision specifically focuses on reflection on ethical dilemmas in interprofessional and interagency collaborations, it appears that the choice of values faced by professionals becomes clearer. Raising awareness in supervision can help the individual professional practitioner to find the courage to articulate and clarify important ethical care values in practice. The fact that courage can be the result of ethical awareness in supervision is a new and interesting phenomenon to pursue in further research.

References

1.      Dilworth S, Higgins I, Parker V, Kelly B, Turnes J. Finding a way forward: A literature review om current debates around clinical supervision. Contemporary Nurse 2013;45:22–2.

2.      Berggren I, Barbosa da Silva A, Severinsson E. Core ethical issues of nursing supervision. Nursing and Health Sciences 2005;(7):21–8.

3.      Karlsson B, Kim SH. Sykepleie i kommunalt helse- og rusarbeid. Forskningsrapport nr. 16/2015. Senter for psykisk helse og rus: Høgskolen i Buskerud og Vestfold. Available at: https://brage.bibsys.no/xmlui/bitstream/handle/11250/298288/Forskningsrapport%20IFPR%2016-2015.pdf?sequence=1&isAllowed=y(downloaded 30.03.2017).

4.      Nordtvedt P, Grimen H. Sensibilitet og refleksjon. Gyldendal Akademisk, Oslo. 2004.

5.      Hummelvoll JK, Severinsson E. Factors influencing job satisfaction and ethical dilemmas in acute psychiatric care. Nurs Health Sci 2001;3:81–90.

6.      Aasland DG, Eide SB. Samarbeid og etikk: Jeg, vi og den andre. I: Aasland DG, Eide SB, Grelland HH, Kristiansen A, Sævareid HI og Aasland DG. Fordi vi er mennesker; en bok om samarbeidets etikk. Fagbokforlaget, Bergen. 2011.

7.      Samhandlingsreformen. Helse- og omsorgsdepartementet. 2012. Available at: https://www.regjeringen.no/no/tema/helse-og-omsorg/helse--og-omsorgstjenester-i-kommunene/samhandlingsreformen/id680424/(downloaded 19.04.2017).

8.      Vråle GB. Veiledning når det røyner på …. Gyldendal Akademisk, Oslo. 2015.

9.      Just E, Nordentoft HM. Tværfaglig praksis. Hans Reitzels Forlag, Copenhagen. 2012.

10.    Lerdal A, Karlsson B. Bruk av fokusgruppeintervju. Sykepleien Forskning 2008; 3(3):172–5. Available at: https://sykepleien.no/forskning/2009/02/bruk-av-fokusgruppeintervju(downloaded 30.03.2017).

11.    Lindseth A, Nordberg AA. A phenomenological hermeneutical method for researching lived experience. Scand J Caring Sci 2004;145–53.

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In recent years, co-ordination issues have received increased attention in Norwegian health policy (1) and research (2, 3). The national health and care plan for 2011–2015 revealed that many patients still experience discontinuity of treatment. Inadequate continuity of care may give rise to insecurity, provision of incorrect treatment and care, inefficient services and a reduced quality of life for patients and their relatives (4).

In 2013 the Norwegian Directorate of Health issued a circular concerning national objectives and priorities within the health and care services (5). It was pointed out that discontinuity of care and disrupted service provision, as well as inadequate communication, often occurs at the point of transition between hospital and nursing home. Regional health trusts were asked to follow up collaboration agreements and to “facilitate co-operation and dialogue meetings involving the primary health service, the specialised health service and other service providers” (author’s italics) (5, p. 21).

Health care personnel across all disciplines and service sectors must give due attention to information transfer in order to ensure that good and health-promoting relationships are sustained between patients and health professionals throughout the course of the patient’s treatment (4). The exchange of knowledge, information and experiences in connection with the hospital discharge process is of great importance to the continued development of services, the continuity of care and a medically acceptable patient progression.

Co-ordinated collaboration in the mental health services

Serious mental disorders in the elderly are often complex in nature (6). When patients are in the vulnerable phase of being transferred from a psychogeriatric hospital ward to a nursing home, the challenge is to ensure that health care personnel work in partnership in order to avoid discontinuity of interventions, relationships, objectives and treatments (5). Earlier research shows that successful interaction between the different parts of the mental health service can be brought about by influences from the system level, organisational level and interpersonal level (3).

Individual service providers can deliver collaborative interaction if the premise for interdisciplinary collaboration has been established at the organisational level. There are reciprocal influences at work between the education system, the organisation of the healthcare system, government policies, ideologies, structures, resources, shared objectives, and the willingness to co-operate and communicate (7–10).

Co-ordinated collaboration involves more specific commitment than co-operation. The concept involves a commitment to do something together in order to ensure that the work processes are streamlined and that services and measures are co-ordinated (11–13). This requires colleagues to make mutual adjustments to their respective jobs. Collaboration amongst individuals requires “trust, reciprocity and equality” and a shared understanding of the situation (11, p. 257).

Description of the study

This is a qualitative study which forms part of a larger participation-based research project entitled PASSUS (patient-oriented collaboration at the point of discharge into nursing homes) (14), set up to study quality development and actions. The objective of PASSUS is to develop and test a new collaborative model that might improve the discharge process, the continuity of care and the exchange of information between psychogeriatric hospital departments and sheltered or long-stay nursing home units at personal and system levels (14, 15).

One of the improvement measures put forward in the collaborative model was to conduct collaborative meeting across disciplines and service sectors at the nursing home two weeks after discharge (14). The purpose of this sub-study was to examine the experiences of the health care professionals who attended these collaborative meetings. The sub-study was restricted to descriptions submitted by participating health care personnel of their own role and professional contribution to an interactive process. 

Method

The study has a descriptive qualitative design and is based on written notes from twelve collaborative meetings. The meetings were held at the nursing homes approximately two weeks after the patient had been discharged from the psychogeriatric hospital ward. Every collaborative meeting was attended by at least one specialist nurse and one psychiatrist from the hospital, as well as at least one nursing home doctor, primary contact or manager.

The collaborative meetings accommodated a mutual exchange of information concerning the patients’ symptoms and functioning in their new surroundings. The forum was used to discuss how the transfer of information had worked, and whether the measures proposed by the psychogeriatric service had proved effective. After each meeting, all participants would complete a self-reporting form by answering the following open-ended questions:

• What were your contributions to the collaborative meeting?
• What are your thoughts about the collaborative meeting?
• What have you learnt?

The questions had been drawn up in liaison with representatives of the nursing homes involved and the work group that had been set up at the psychogeriatric department as part of the preparations for PASSUS (14).

Sample

We recruited the responsible doctor or psychiatrist from the psychogeriatric department as well as a specialist nurse who was familiar with the relevant patient, and who had been involved with discharging the patient into the nursing home. We further recruited a nursing home doctor, primary contact or manager who had come to know the patient after the transfer to the nursing home. All participants were required to be proficient in writing in Norwegian.

We included 10 participants from the psychogeriatric hospital department and 26 participants from nursing homes. There were 27 females and 9 males, all of them health professionals from a wide range of backgrounds (table 1).

Data collection

We set aside a full hour for each of the collaborative meetings. Data were collected through self-reporting forms that were handed in immediately after each meeting. The full body of data consists of 80 such forms. The participants responded in handwriting on paper, formulating short sentences and keywords. These handwritten responses were transcribed verbatim and transferred to electronic media. The resulting electronic text makes up the study’s 36 pages of data.

Ethical considerations

The study was approved by the health trust’s data protection officer and by senior management at the nursing homes. We obtained written consent from all participants prior to the collaborative meeting. They were informed that participation was voluntary. No-one dropped out before completion. All information that emerged was securely treated in accordance with Norwegian Personal Data Act and the Data Protection Authority’s guidelines (18, 19). This meant that all self-reporting forms containing names were de-identified. There is no code list of names and contact details.

Analysis

We conducted a qualitative content analysis of our material, inspired by Graneheim and Lundman (16, 17). The hallmark of a qualitative content analysis is a process that moves back and forth between the whole material and its parts. The text may be interpreted at a variety of levels; we chose the manifest level of analysis (16). This means that our interpretations were closely linked to that which is explicitly expressed in the material. Each self-reporting form was therefore identified as a unit of analysis.

We conducted the analysis in multiple stages, the first involving a read-through of the electronic data generated by each participant. We also read the whole material for each of the self-reporting questions in order to gain an understanding of the complete body of data. At the next stage we condensed the text. Examples of this process are set out in Table 2. Similar meanings were grouped in sub-categories before being allocated to four main categories. We conducted the analysis several times in order to ensure a uniform process. The sub-categories represent different aspects of a category (16, 17).

Results

From our analysis of the material four categories emerged that summarised the participants’ descriptions: 1) information about individualised care and treatment, 2) knowledge exchange, 3) mutual recognition and affirmation, and 4) improvement measures.

Information about individualised care and treatment

The psychogeriatric nurses reported that they chaired the collaborative meetings and that they provided patient information that complemented the written transfer report: “I have provided more specific details about interventions that had been inadequately described in the nursing summary – such as the administration of medication, the patient’s behaviour and moods.”

Health care personnel from the specialised health service highlighted the exchange of information concerning their experience of working with the patient’s relatives, and activity programmes that had been implemented to good effect. Nurses and occupational therapists alike reported that complex needs made it difficult to summarise the care provided in writing: “This is a patient with many needs which are difficult to describe” (psychogeriatric nurse).

The nursing home staff on the other hand, reported that the transfer information provided by the psychogeriatric department at the time of discharge was good and comprehensive: “I have received good descriptive information about the patient’s condition as well as an action plan that was ready for immediate implementation when the patient arrived here” (nursing home nurse). The health care personnel at the nursing homes also reported that they had followed up on the proposed measures: “I have followed up with specific measures at meal times and when providing personal care, and by creating a sense of calm around the patient. This has worked very well” (auxiliary nurse at nursing home).

The nursing home doctors reported that during the collaborative meetings they had a different focus than other professional groups. They sought supplementary information from the psychiatrist about the background to the diagnosis, the assessment, case history and medical treatment: “I raised questions concerning the medication.” The psychiatrist from the psychogeriatric department reported having provided in-depth information and having given her reasons for her choice of medical treatment: “I have explained the history, the medication and MR findings.” The nursing home doctors described the information provided in the medical discharge summary as good. A number of nursing home doctors reported that they contributed with supplementary information concerning the patient’s case history prior to hospitalisation at the psychogeriatric ward, and that they planned the continued treatment in partnership with the doctor or psychiatrist from the psychogeriatric department.

Knowledge exchange

A number of participants described receiving useful information about the patient through the interdisciplinary knowledge exchange at the collaborative meetings, and that they gained new insight into how it might be possible to interact with the patient in a good way. Particularly the nursing home doctors reported that they acquired more knowledge about psychogeriatric assessment methods and treatments: “I learnt more about the assessment methods.” Another nursing home doctor reported: “I have acquired insight into the treatment of Lewy body dementia: advice about what should be at the back of my mind in special cases. Have received an update.” The psychiatrist from the psychogeriatric department reported that she had acquired new knowledge about available support of significance to the transition into sheltered nursing home accommodation. This individual had also gained greater respect for the working practices at the nursing home.

Recognition and affirmation

The participants described their discussions during the collaborative meetings as frank exchanges conducted on equal terms: “I felt that the discussion was good and frank. Nursing staff were given a good opportunity to describe their observations of the patient. Everyone listens to one another” (nursing home doctor). Both the nurses and the nursing auxiliaries felt it was very useful to review the measures that work, and to give each other credit. They reported as follows: “it feels good to receive recognition for what is being done the right way [in the nursing home], and whether this coincides with your views [in the psychogeriatric department]”.

The psychogeriatric nurses reported that openness surrounding challenges was seen as particularly important. This was confirmed by the nursing homes. One person reported that: “I felt we received affirmation that what we are doing is not wrong, and that our frustrations were met with understanding” (nursing home nurse). A number of participants from both the psychogeriatric department and the nursing homes reported a good atmosphere at the collaborative meetings, and a sense that the participants were engaged. One participant gave a different account of one particular meeting where few people had been in attendance: “I felt it was not particularly motivating because few people contributed to the discussion and we appeared to run out of things to say” (psychogeriatric nurse).

Some described the discussions about challenging situations as being useful and informative, and based on a wish to do their very best for the patient: “The meeting was clarifying and very positive in that this was a patient with great challenges. I felt that the meeting was factual and I am impressed with all the good initiatives that were gradually forthcoming” (psychogeriatric nurse).

Health care personnel from the psychogeriatric department reported that it was good to receive feedback and confirmation that the patient’s needs were being met, and that the measures suggested by their department were being followed up. A number of doctors from the specialised health service reported that they had gained an insight into the work of nursing homes: “[G]ood to learn how the nursing home doctors are thinking with respect to medication and the patient’s condition. Am now better informed with regard to the programmes offered at the nursing home.” Health care personnel working for either service provider reported that they received mutual acknowledgement, irrespective of their occupation.

Improvement measures

The supplementary descriptions of the patient’s situation and the dialogue with health professionals with different experiences, helped to solve problems: “I started getting ideas about how to improve the things we do . It was a real boost for me” (nursing home nurse). It was emphasised that interdisciplinary dialogue can contribute to raising the participants’ competence levels, which might influence the patient’s future care: “[T]his kind of meeting will raise our level of competence, so that we jointly can come up with initiatives designed to maintain the patient’s identity and dignity” (student nurse at nursing home).

Several participants reported that the collaborative meetings constituted an important improvement measure in terms of ensuring the continuity and quality of care for elderly people suffering from mental disorders, and they wanted the practice to continue. Health care personnel from the psychogeriatric department reported that the collaborative meetings had brought to their attention that some of the nursing homes were struggling for too long before patients were admitted to hospital for assessment. They asked whether this could possibly be changed: “In the future I feel it would be wise for nursing home doctors to have an open line of communication to the specialised health service” (psychiatrist at the psychogeriatric department).

Discussion

This study looks at a group of health professionals who attend co-ordinated collaborative meetings. The meetings involved a level of commitment and focused on an exchange of knowledge that may contribute to better continuity of care between psychogeriatric hospital departments and nursing homes. Co-ordinated collaboration between health care personnel in the specialised health service and the primary health service is often taken for granted, and the responsibility for ensuring continuity of care has received growing attention after the introduction of the Coordination Reform (1, 3). A number of studies have also pointed to the need for new approaches (2, 3).

Previously, elderly patients suffering from complex mental disorders and dementia used to be assessed and treated during lengthy periods of hospitalisation in psychogeriatric departments. These days, the requirement is for outpatient services, nursing home adaptations and as few inpatient nights as possible. In compliance with the Coordination Reform, the psychogeriatric hospital services have become more specialised and focused on assessment. This is why there are complex interactions and decision-making processes involved with the transfer of patients from psychogeriatric hospital departments to nursing homes. Furthermore, there is a risk of discontinuity of care (3). Demands for knowledge-based practice ensure that care and treatment are provided on the basis of research-based knowledge and adjusted to the individual patient’s resources and wishes (1).

The study shows that interdisciplinary health care personnel at nursing homes felt they were receiving useful information from the medical discharge summaries and nursing summaries when patients were transferred from the psychogeriatric service. The nursing home doctors nevertheless often asked for assessment details and the reasoning that formed the basis for drug treatment choices. The attention of the nursing staff was to a greater extent directed towards the patient’s basic needs. All professions were able to contribute to the exchange and put forward suggestions from their own viewpoint, and it was useful to exchange knowledge.

Recognition and affirmation are important

Health care personnel from both service sectors reported that the collaborative meetings provided affirmation of their own work. Affirmation arises in the moment and is all about the way we listen, our attitude to other people and how an individual’s overall behaviour appears as they encounter other people. Affirmation relates to our appreciation of another person as an individual and the acceptance and validation of this other person’s experiences (22, 26).

An earlier psychogeriatric study conducted by Brattrud and Granerud (10) shows that it may be challenging for personnel within the primary health service and the specialised health service to see each other as equal partners (10). In our study, the health professionals from the specialised hospital department were described as “experts” by the nursing home staff, which may suggest that there is an informal hierarchy in place. Nevertheless, it appears that the health care personnel saw each other as equal participants. We interpret this to mean that each participant attending the collaborative meetings felt confident about their own background, which matches the findings of earlier research on individual factors that are essential to good co-operation (12, 26).

Another interpretation may be that those who attended the collaborative meetings focused their attention on the patient’s health and treatment. In other words, equality is linked to equality of experience, as all participants had some knowledge of the patient. They felt it was really useful to listen to each other and to meet up face-to-face as interdisciplinary partners. Earlier studies have also shown that meetings are conducive to co-operation and to ensuring a good flow of information (2, 25). It is therefore useful to highlight various aspects of the interactions that may serve to enhance the level of continuity and collaboration, and encourage learning from the experiences.

Exchanging experiences

The interdisciplinary nature of the interaction between health care personnel was an important factor. The collaborative meetings in our study were characterised by exchanges of relevant medical information and in-depth descriptions of the care provided for the individual patients. Our findings show that the exchange of experiences gave participants new knowledge about the patient and an insight into each other’s service areas. Other studies point out that the specialised health service and the primary health service represent different approaches in terms of ideology, culture, resources and competence, and that this may prove to be an obstacle to collaboration (3). Nevertheless, our study showed that the participants included each other on equal terms.

Earlier studies have demonstrated that collaboration is greatly enhanced by regarding each other as “we” rather than “us and them” (9). In their study from the Swedish mental health service, Magnusson and Lützén (9) found that different views and focus in the approach to people with mental health problems may be obstructive to co-operation and interaction. The same applies if the health care personnel involved make use of different concepts, expressions and terminology within the field (9).

The health care personnel who took part in the study reported that one particular collaborative meeting was not considered useful. This may have been caused by disrupted dialogue and misunderstandings (22). Dialogue disruptions may be attributed to attitudes or insufficient engagement, or a poor sense of belonging or community (22). According to Goffman (21) the emotional response among participants is a third significant factor in focused social meetings. Meeting each other in person allows the participants access to a number of social clues in the form of words, facial expressions, gestures and actions. In the light of Goffman (21), our findings may suggest that the participants tried to “build bridges” to one another in the interest of doing their utmost for the patient.

Different resources and different requirements

Earlier studies have pointed out that specialised health services and nursing homes have different resources and different competencies available to them (24). Within the context of a hectic working day at a nursing home, it may be challenging to follow up the residents’ developing needs to ensure that the appropriate measures are put in place (24). Participating health care personnel from either service sector described it as challenging to identify suitable measures for individual patients. During the meetings they exchanged knowledge and provided mutual affirmation of each other as resource persons.

The detailed descriptions provided by participants through the questionnaires, told us that the participants became better acquainted with the physical circumstances, resources and competencies provided at the various nursing homes and in the specialised health service. This type of mutual knowledge exchange helps the health professionals realise when there is reason to seek or provide advice and guidance (10).

In order to be able to provide health care which is medically sound, health care personnel must be able to interact with members of other health care professions (11). Equally, knowing each other’s competence and services will enable mutual understanding and recognition of one another’s differences. Willumsen (12) points out that recognition of differences is a factor that may encourage dynamic collaboration. This requires health care personnel to be flexible and capable of taking advantage of each other’s contributions. Willumsen (12) argues that good interdisciplinary co-operation requires members of different professions to work in partnership on a joint task, with everyone contributing on equal terms. Our study demonstrated that a shared understanding of the patient’s situation helped the health professionals jointly draw up detailed interventions for the patient’s future nursing care.

The study’s limitations and strengths

There are some limitations to the study. It was based on a limited number of written feedback reports from a specific geographic area. The body of data consists of written responses to three questions and the participants’ ability to express themselves clearly in writing differs. The researchers have not had the opportunity to follow up with further questions.

The timing and location of the collaborative meetings may have influenced the results. They were all held after the patient’s discharge from hospital to ensure that both parties would be familiar with the patient and had made their own observations. The meetings were held at the nursing homes in order to boost participation levels. We presumed that it would be difficult for nursing home staff to travel to the hospital, as few staff are assigned to a shift.

It is one of the study’s strengths that six different healthcare professions are represented, and that the questions were drafted in liaison with the target group. The study raises important points, corroborates the need for co-ordinated collaborative meetings and highlights themes of universal significance. A relatively low number of participants, and the data collection method, represent limitations to the study’s transfer value.

Our study does not discuss co-ordinated organisational collaboration, but we have communicated our sub-project findings to the main PASSUS project. This resulted in written guidelines being issued with respect to the collaboration between nursing homes and the psychogeriatric service. Neither patients nor their relatives were included as study participants. In future research, it will be important to include interaction with these key groups.

Conclusion

This study involved meetings between health care personnel who had been responsible for the care of patients in the psychogeriatric department, and those who took over responsibility for the patient in the nursing home. Our analysis of the participants’ self-reported experiences showed that the collaborative meetings contributed to interdisciplinary knowledge exchange, as well as increased understanding and insight into the patient’s situation. It was important for health care personnel at the nursing homes to receive detailed information about the psychogeriatric assessment and the reasoning behind treatment choices, while also receiving affirmation of their work.

The health care personnel in the psychogeriatric department reported that the feedback received from health care personnel at the nursing homes was significant to their practice. The collaborative meetings contributed to mutual respect and the exchange of detailed, patient-oriented knowledge. They are examples of how systematic collaboration can improve the individual’s competence and ensure continuity of care between service sectors.

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In 2009, the Norwegian Directorate of Health issued national professional guidelines for the prevention and treatment of undernutrition. The guidelines stressed that all patients admitted to institutions or registered for community nursing services are to be assessed for nutritional risk (1).

The purpose of the assessment is to detect patients at nutritional risk as early as possible in order to initiate targeted measures. Around 78 000 people in Norway receive help from the community nursing services. Even though figures from Statistics Norway show that the group of younger people who need assistance is increasing, a large number are over the age of 67 (2).

Groups at risk of undernutrition

Elderly people who receive assistance from the community nursing services are either susceptible to undernutrition, at risk of undernutrition or are undernourished (3–9). Patients suffering from a serious or long-term illness are particularly susceptible to undernutrition (10). For example, some types of cancer can lead to metabolic alterations in the body. The patient may develop different levels of stress metabolism and cachexia resulting in weight loss etc. (10). Patients with cognitive failure who live at home are also susceptible to undernutrition (11).

The causes of undernutrition may be multifactorial. A meta-analysis from the Netherlands identified 37 factors that could affect nutritional intake in older people (12. These factors were partly associated with the person in question, the food that was served and the eating environment.

Definition of undernutrition

Undernutrition, or PEM (protein–energy malnutrition) as it is often called, may be defined as a nutritional situation in which a lack of energy, protein and/or other nutrients causes measurable adverse effects on body composition and function, together with a clinical result (1, p. 14).

Undernutrition may affect both physical and mental function. It leads to loss of protein-rich muscle mass (13). Likewise, older people are susceptible to sarcopenia due to changes in body composition with further loss of muscle mass leading to decreased muscle strength and muscle function (14). Poor nutrition and protein deficiency in particular have proved to be one of the main underlying causes of sarcopenia (14).

Undernutrition is associated with a greater risk of falling, impaired immunity and increased mortality (15–17), and may result in longer periods of hospitalisation and increased costs (18–20). Following acute illness, the elderly patient may take longer to recover, and consequently it is better to prevent undernutrition than to treat it (21). Undernutrition may result in concentration difficulties, apathy and depression, which may affect the person’s quality of life (21).

How to measure undernutrition

A number of screening instruments have been developed to measure PEM. The incidence of undernutrition has proved to vary according to which instrument is used (22–23). In one study, elderly people aged from 65 to 96 living at home were asked to map their nutritional status using two different screening instruments: MNA-SF (Mini Nutritional Assessment – Short Form) and NUFFE-NO (Nutritional Form for the Elderly) (22).

The incidence of patients in danger of becoming undernourished varied from 13.5 per cent in one form (MNA-SF) to 22.5 per cent in the other (NUFFE-NO) (22). In its national guidelines, the Norwegian Directorate of Health has recommended the screening instruments that should be used. Its recommendations are linked to whether the person is ill and has been admitted to a hospital or a nursing home, or whether the person is registered with the community nursing services. Some instruments, for example the MNA, are especially adapted to elderly people (1).

Insufficient knowledge

In 2010, the Norwegian Board of Health Supervision carried out supervision of nutritional routines in 21 municipalities in seven counties in Norway (24). The results revealed that the current statutory requirements had been violated in two out of three municipalities. The Board’s conclusion was that many municipalities paid little attention to the nutritional needs of the elderly and had insufficient knowledge about this (24).

Managers are responsible for preparing written procedures and for ensuring that the basic needs of service users are satisfied, including their nutritional needs. Health care personnel are responsible for adhering to the written procedures. There is little research on the assessment of nutritional status in the community nursing services, and we need more studies that present the views of both managers and health care personnel on nutritional routines.

The purpose of this study was to describe and compare what routines managers and health care personnel follow in order to quality assure nutrition efforts. 

Method

The study had a descriptive, cross-sectional design, and consisted of two sub-studies: one among managers in the community nursing services and one among the health care personnel. We gathered data using a questionnaire dealing with nutrition efforts in the community nursing services.

Sample

Sub-study 1: Managers in the community nursing services in all municipalities in Norway were invited to take part in the study, and to answer on behalf of their own municipality.

Sub-study 2: We asked health care personnel working in the community nursing services in 13 municipalities distributed across five health regions to participate in the survey. In each region we chose random municipalities linked to the Centre for Development of Institutional and Home Care Services. We also selected municipalities without such links. In order to calculate the number of respondents that were to participate in each municipality, we gathered information about the number of FTEs for health care personnel from the respective municipalities. Then we selected a proportional stratified random sample of health care personnel from each municipality. The aim was to control the number of respondents per municipality in order to minimise sample error.

Data collection

We collected data using a structured questionnaire. The questions were based on the results of an earlier survey on food and meals in nursing homes (25). We adapted the questions to apply to the community nursing services. In addition, two nutritionists gave feedback on the questionnaire. In order to enhance its validity, we also conducted a pilot study with four respondents chosen from the same population as the sample. The responses from the pilot study are not included in the results. The pilot study did not lead to any changes in the questionnaire.

The questionnaire in sub-study 1 consisted of altogether 61 questions, and there were 67 questions in sub-study 2. The form was structured on the basis of the following main areas: background variables (education and work experience), assessment of food and the routines for nutritional status. Several questions were formulated as questions with the response categories ‘Yes’, ‘No’ or ‘Don’t know’, for example ‘Are there written procedures for assessing nutritional status?’

The form also contained statements with which the respondents could agree or disagree, with response categories ‘Disagree’, ‘Somewhat disagree’, ‘Somewhat agree’ or ‘Completely agree’. The following is an example of such a statement: ‘The food is appetising and tasty.’ Other questions were formulated about the frequency of measures with response categories such as ‘Never’, ‘Almost never’, ‘Almost always’, ‘Always’ or ‘Don’t know’. The following is an example: ‘How often are there service users with a poor nutritional status in the community nursing services where you work?’ In this article, we have focused on questions relating to the assessment of the patients’ nutritional status.

Implementation

We conducted the study in the period from May to June 2011.

Sub-study 1: The target group for sub-study 2 was managers. TNS Gallup was responsible for sending the information letter and the questionnaire to the municipalities. The information letter and invitation were emailed to the municipalities’ postal address. The questionnaires were web-based and were filled in online via a link. The municipalities that had not responded by the deadline were reminded once electronically and once by a telephone call from TNS Gallup.

Sub-study 2: The target group for sub-study 2 was health care personnel. The project manager contacted managers in the community nursing services and managers of the development centres in the municipalities selected. They were given information and were asked if health care personnel in their municipality could participate in the study. The managers appointed a contact person at the place of work. We informed the contact persons in writing that respondents should be selected at random. The contact persons then distributed the questionnaire to those who had been selected to participate in the survey. All municipalities answered by the deadline.

We distributed a total of 758 questionnaires – 460 in sub-study 1 and 298 in sub-study 2.

Analysis of data

We conducted the analyses using SPSS version 23. Descriptive statistics of frequency and percentage were used to describe the sample. We used the same method to describe how the samples assessed nutritional status. In order to test whether there were significant differences between the responses of managers and health care personnel, we used Pearson’s Chi-Square test. The significance level was set at 0.05.

Ethical considerations

Sub-study 1: TNS Gallup, which had responsibility for the practical implementation of sub-study 1, complies with current acts and regulations at all times. The questionnaire contained no personal information, and confidentiality and voluntary participation were safeguarded. Only TNS Gallup had access to the list of municipalities that participated in the survey and answered the questions. The list was only available in connection with reminders, and the researchers received anonymous SPSS files from TNS Gallup.

Sub-study 2: After conferring with the Norwegian Social Science Data Services, we did not submit a notification form for sub-study 2. The reason was that the survey did not include personal information. Moreover, the questionnaire was anonymous. 

Results

Altogether 485 respondents answered the questionnaire on nutrition efforts in the community nursing services. A total of 273 were managers, giving a response rate of 59, and 212 were health care personnel, equivalent to a response rate of 74 (Table 1).

Most of the managers were nurses, while approximately half of the health care personnel were nurses. Four per cent of the health care personnel had no health care training. Fifty-five per cent of the health care personnel were employed in a municipality that was linked to the Centre for Development of Institutional and Home Care Services. Sixty-seven per cent of the managers and 76 per cent of the health care personnel answered that there were always or often service users in a poor nutritional condition at their workplace.

Table 2 shows how health care personnel and managers assess patients’ nutritional status, how this is documented and how they rate their knowledge of nutrition. The results show that there is a difference between how the managers and the health care personnel answer. 

Eighty-eight per cent of the managers and 80 per cent of the health care personnel in the community nursing services wanted to improve their knowledge of nutrition efforts. The managers mainly wanted more knowledge of how to assess service users’ nutritional condition and calculate their energy needs in addition to knowledge about how to give service users nutritional guidance. The health care personnel mainly wanted knowledge about the different nutrients.

In response to the question of how managers felt that the staff assessed the importance of screening and assessing service users’ nutritional condition, altogether 14 per cent answered ‘Very well’. Sixty-six per cent answered ‘Well’, while 18 per cent answered ‘Badly’. Less than one per cent answered ‘Very badly’. Similarly, health care personnel were asked how they thought management assessed the importance of screening and assessing service users’ nutritional status. Fifteen per cent answered ‘Very well’, 58 per cent answered ‘Well’, 26 per cent answered ‘Badly’, and less than one per cent answered ‘Very badly’.

In the case of follow-up of service users’ nutritional condition, 14 per cent of the managers and 8 per cent of the health care personnel answered that this was ‘Very good’. Some 75 per cent and 69 per cent respectively answered ‘Good’, and 17 per cent of the managers and 27 per cent of the health care personnel answered ‘Poor’. Less than one per cent of both the managers and the health care personnel answered ‘Very poor’.

The managers rated knowledge, time and then resources as the three greatest obstacles to the assessment and follow-up of nutritional status. This answer largely correlates with the health care personnel’s answers, but the latter assessed time as the greatest obstacle followed by knowledge and resources. 

Discussion

Nutritional status

This survey showed that service users in poor nutritional condition are common in the community nursing services. Other national and international surveys show that undernutrition may be a problem among users of community nursing services (3–9). Therefore, it is vital that there are good routines for assessing service users’ nutritional condition.

The Norwegian Directorate of Health recommends that a standardised set of diagnostic criteria should be applied in order to identify and document undernutrition in clinical practice (1). Weight, changes in weight over time and body mass index (BMI) are highlighted as the simplest measurements of nutritional status (1).

In this survey, one out of five managers and one out of five health care personnel stated that it was usual to weigh the service user on registration with the community nursing services. Furthermore, 12.5 per cent of the health care personnel answered that they did not know whether it was usual to weigh the service user on registration. If it is not known whether weighing is a routine procedure, this may indicate that the service user is not weighed despite the fact that weighing is one of the most important measurements in revealing and assessing a person’s nutritional condition (1).

The results are poorer than in two Swedish studies in which 31 per cent (26) and 84 per cent (7) respectively of the primary health service staff replied that all service users were weighed on registration. Surveys tend to indicate that the situation could be better at Norwegian nursing homes (25, 27). In order to follow weight alterations over time, the service user must be weighed at fixed intervals. Our study shows that a greater number of health care personnel weighed service users at fixed intervals compared with weighing them at the time of registration. Nevertheless, the results show that weighing the service user is still a challenge in the community nursing services of several municipalities.

In addition to weight, BMI can be used as a measurement of nutritional status. The study showed that calculating service users’ BMI value was not usual either. Weight and height are the two values used to calculate BMI value. The lack of weighing routines may thus be instrumental in the failure to calculate the BMI value.

Our survey showed that just under half of the municipalities have routines for screening and evaluating the nutritional condition of users of the community nursing services. Even fewer have documented this in written procedures. The failure to use written procedures indicates that screening instruments are not used either. In a Scandinavian study on whether evaluating nutritional status was standard procedure in hospitals, Norway had the poorest result (28), even though several different screening instruments are available (1, 3, 22).

Documentation

The results of the survey showed that there is no standard procedure in all municipalities for noting service users’ food habits on registration. Fewer health care personnel than managers answered this question in the affirmative. Such documentation is required by law and the health care personnel are responsible for ensuring that the data are recorded (29).

In order to implement correct nutrition-related measures, it is vital that health care personnel are aware of the individual service user’s food habits. A Swedish study showed that it was usual to include questions related to nutrition in the admission interview for hospitals, separate housing for the elderly, and the community nursing services (26). A Norwegian study on community nurses’ documentation showed that 70 per cent of the reports contained data associated with the nurses’ subjective perceptions rather than the patient’s perceptions (30).

One study showed that one out of four patients discharged from hospital in Norway was at nutritional risk (31). These patients will therefore need further nutritional treatment following discharge. Feldblum et al. (32) showed in a survey that patients who received individual nutritional treatment during and after acute hospitalisation had lower mortality and a moderate improvement in nutritional status. A Swedish survey of community nursing services showed that half of the service users need nutrition-related support (33), and that documentation is thus important. It is therefore alarming that only half of the respondents in our survey answer that nutrition is included as an item in the nursing plan they receive for patients when they are discharged from hospital.

As of 1 January 2016, the authorities require all municipalities in Norway to document service users’ nutritional status in the IPLOS register (34). IPLOS is a statutory health register for municipal health and care services. Nutrition efforts and screening for nutritional status should be highlighted as a key area in nursing, both in respect of data collection during registration with the community nursing services and in further documentation going forward. 

Knowledge

Both health care personnel and managers in our survey were of the opinion that more knowledge about nutrition was needed. The majority wanted to know more about this topic in connection with ‘how to assess service users’ nutritional condition’. The results of the survey correlate with results from Norwegian nursing homes (25, 27) and from an Australian study (35). These showed that there was a need for more knowledge about nutrition. Both managers and health care personnel described a lack of knowledge as the main barrier that had to be removed to enable health care personnel to assess and follow up service users’ nutritional status.

A Scandinavian study among hospital doctors and nurses showed that the lack of knowledge about nutrition was the most common cause of inadequate nutritional practice (36). In our study, a greater number of managers than health care personnel were familiar with the national professional guidelines for the prevention and treatment of undernutrition (1). These guidelines include information about how to screen for nutritional status. Drawing up guidelines and procedures is not sufficient. Staff must also be trained in how to apply the guidelines. Furthermore, the community nursing services must have good routines to ensure that procedures are followed.

In a qualitative survey at a Norwegian hospital, the nurses answered that they lacked adequate knowledge and skills to identify and treat undernourished elderly patients. Moreover, several of the respondents were not aware of the above-mentioned guidelines (37). The health care personnel in our survey mentioned time as being the key obstacle to achieving good routines for assessing nutrition. A qualitative survey showed that nurses in the community nursing services considered that their expertise was not being utilised correctly (38).

One out of five managers in our study answered that they believed that health care personnel did not understand the importance of screening for nutritional status while one out of four health care personnel felt that the managers did not understand the importance of assessing nutritional status. Even though most answered that the nutritional status of community nursing service users was safeguarded, it is alarming that 17 per cent of the managers and 27 per cent of the health care personnel answered that the follow-up of nutritional status was poorly safeguarded. 

Limitations of the study

We collected the data in 2011. However, the literature review indicates that there have been no major changes in routines linked to nutrition in recent years (3–9, 11), even though a qualitative study among community nurses showed that the patients they received from hospitals were ‘sicker’ than was the case prior to the introduction of the Coordination Reform (38). Nevertheless, the results must be interpreted with caution. A total of 59 per cent of the managers in the community nursing services answered the questionnaire. Although this may appear to be a low figure, it includes managers from municipalities throughout Norway. The response rate among the health care personnel included in the survey was 74. The health care personnel were randomly selected and represented all five health regions, thus reinforcing the ability to generalise the results. However, the results must be interpreted with caution because the sample itself is limited.

Conclusion

This study showed that weighing service users in the community nursing services poses a challenge. Awareness of the importance of weighing is vital to ensure that the guidelines are followed. Perhaps systemising weight measurement might help. Such an initiative could be realised by putting in place standardised guidelines and procedures regarding how and when service users should be weighed. Weighing can be introduced, for example, at the same time as providing assistance for showers or baths.

Guidelines exist; more managers than health care personnel are aware of the national professional guidelines for the prevention and treatment of undernutrition. It is still important to publicise the guidelines and ensure that health care personnel are trained in applying them. It is essential that all municipalities put procedures in place to screen and assess service users’ nutritional status. 

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Medically justifiable practice of health care requires collaboration between the health professionals involved. They must have sound professional knowledge and practice in coordination (1, 2). In recent decades, healthcare providers have undergone simulation training in realistic patient situations demanding complex decision making and teamwork. The training was based on experiences with ‘Crew Resource Management’ (CRM) (3-7), as used in civil aviation.

Simulation-based training is described as a measure to improve teamwork, reduce adverse events and improve patient safety (3, 7, 8). Establishing simulation-based team training requires resources for training facilitators (instructors), as well as available room capacity and equipment. The task of facilitators is to facilitate learning (7, 9).

Ziv and collaborators define simulation as ‘any educational activity that utilizes simulation aids to replicate clinical scenarios’ (10), and it is divided into three phases:

• the briefing phase, in which the participants are informed of what will happen, the learning objectives, the patient simulator, the room and available equipment
• the implementation phase, in which the participants implement the scenario and behave as though it were a real patient situation
• the debriefing phase, in which the participants have the opportunity to reflect on their participation in the simulation as compared with the predetermined learning objectives.

Simulation has been shown to enhance knowledge and skills. However, only a small number of studies support its transfer value to clinical practice (11, 12). The educational principles that lead to effective learning are discussed. According to Motola and collaborators, feedback, awareness of practice and integration of theory are key elements (13).

The purpose of the study was to describe how clinical nurse specialists experience their participation in simulation-based team training. We also wished to describe the impact that this training may have on patient care in an emergency situation.

We formulated the following research questions:

• ‘How do you find that simulation-based team training is organised and implemented in your unit?’
• ‘How do you find that participation in simulation-based team training affects your competence in emergency situations?’
• ‘In your opinion, what impact does simulation-based team training have on patient care in an emergency situation?’

Method

The study has a qualitative, inductive and descriptive design based on ten individual, semistructured interviews.

Sample

We invited senior charge nurse at seven hospitals in one selected regional health authority to participate. We included nurse specialists in intensive, paediatric and neonatal care (clinical nurse specialists with between two and ten years of experience from the paediatric units at three hospitals. The participants needed to have undergone simulation-based team training in the previous year, and been involved in a minimum of one emergency situation since then. The sample consisted of nine women and one man, employed in 70–100 per cent positions.

Ethical considerations

We obtained informed consent from the participants, and the study followed guidelines for research ethics (14). The Norwegian Centre for Research Data (NSD) considered that the study was exempted from the obligation to give notification and to obtain a licence. None of the informants withdrew from the study.

Data collection

The interviews were conducted at the informants’ workplace and were undertaken over a period of three months. In the interviews, we needed to strike a balance between seeking answers to the research questions and allowing the informants to speak freely. An interview guide based on the research questions gave structure to the interview, while the follow-up questions encouraged more detailed information. We recorded the interviews on a dictaphone, having obtained the informed consent of the participants.

Analysis

In order to identify meaning units in the text, we analysed the interviews based on Graneheim and Lundman’s qualitative content analysis method (15). We listened continuously and repeatedly to the audio files to ensure verbatim transcription. Meaning units were identified and converted to condensed text, then arranged according to subject matter. A systematic and continuous process of analysis resulted in nine subcategories, three descriptive categories and one latent content.

Methodological considerations

Two of the authors had extensive work experience from paediatric units and had participated in simulation-based team training in their own unit. The third author had experience with simulation used in nurse education. In order to reduce sample-related errors, we excluded our own workplace and took no part in the recruitment of informants.

Results

The results were synthesised into one latent content that expresses the underlying opinion communicated by all the clinical nurse specialists: ‘Realistic training provides quality and confidence in one’s own skills.’ The content includes three descriptive categories (Table 1):

• scheduled, realistic training
• learning and mastery through simulation
• impact on emergency situations

Scheduled, realistic training

The clinical nurse specialists described the various ways in which simulation is planned, organised and implemented. They reflected on role distribution and interdisciplinary collaboration, and described their perception of realism, time pressure and stress during the simulation.

The majority of the clinical nurse specialists had experience of simulation-based team training that was held weekly in the unit. They were uncertain whether they could be freed from their work with patients, as it was only decided on the same morning who would participate. The training was perceived as a non-scheduled activity, and the clinical nurse specialists explained that the simulation training needed to be more systematic.

Three clinical nurse specialists had participated in simulation-based team training at a simulation centre up to three times per year. The unit management’s objective was that all employees should attend, and participation was therefore included in scheduling of rosters. The clinical nurse specialists reported having obtained a good learning outcome from regular training. 

The clinical nurse specialists described the simulation of real patient situations in an interdisciplinary context together with doctors and nurses as very instructive and realistic. They immersed themselves in the scenario, felt the time pressure and could feel their pulses racing. When they were challenged on recognisable elements from practice, such as the role of next of kin, the entire scenario became more realistic. The clinical nurse specialists perceived the scenario and the simulation training as an authentic emergency situation.

Through the training in roles and role distribution, the clinical nurse specialists became more aware of the content of their own role, and also that of other roles in the team. Training in leadership was especially important. One clinical nurse specialist stated the following:

‘I think I got a lot of benefit from it, especially regarding roles. They are very conscious of roles when we are taking part in the simulation.’ 

Learning and mastery through simulation

The clinical nurse specialists described the feeling of mastery they acquired from training in communication, procedures and use of medical equipment. They also described how they learned through reflection.

The clinical nurse specialists found it to be advantageous that the simulation-based team training was undertaken in the same location where emergency situations arise. In a familiar environment, they were able to concentrate on the scenario and find and hook up emergency medical equipment such as a ventilator. Regular training with medical equipment and relevant procedures resulted in better coping For example, simulation training could focus on advanced cardiopulmonary resuscitation. Theoretical teaching often formed part of the preparations and could be linked to cardiopulmonary resuscitation, like the algorithm for resuscitation. In their opinion, having both a theoretical and practical element enhanced their competence. One clinical nurse specialist described the participation as follows:

‘If you manage to forget that it is a training situation, and try to focus on learning, you learn a great deal.’

They highlighted the importance of good communication in the team. The clinical nurse specialists explained that emergency situations could be chaotic, and might give rise to harsh words and aggressive behaviour. They believed that training in communication is necessary and that simulation-based training gives the whole team a unique opportunity to practise crisp and clear communication. This gives them more confidence in themselves and their role in the team.

The interviews revealed that clinical nurse specialists took a positive view of reflecting on what they had participated in, and what they had done well and less well. They indicated that this was important for learning. A facilitator was present in the simulation centre and led the debriefing. The weekly simulation could be conducted with or without a facilitator. Simulation without a facilitator was perceived as unstructured, and the participants did not feel that they were given a systematic review of what had occurred.

For example, they wanted the following type of feedback:

‘You might think about that next time, remember to give a clearer message, and to have it confirmed.’

Impact on emergency situations

The clinical nurse specialists described how they transferred their thought process from simulation to emergency situations. They also spoke of the impact that simulation had on patient care, and the aspects of simulation that affect their actions in an emergency situation.

In emergency situations, they automatically began to allocate roles and responsibilities in the way that they had been trained. They claimed that the time that had elapsed between the simulation and the occurrence of an emergency situation had an impact on how quickly they accessed their knowledge. One clinical nurse specialist described her experience of performing chest compressions on a baby in an emergency situation:

‘The feeling that with a baby, it was enough to use my fingers; I felt I was doing it correctly, in the way that I had been trained.’

The level of stress was reduced when they mastered the tasks and felt confident in emergency situations. All the clinical nurse specialists stated that simulation-based team training has an impact on patient care in emergency situations, and thereby also on patient safety. One clinical nurse specialist illustrated the impact on patient care as follows:

‘When you practise it, you know what to do, and you act more quickly. And this benefits the patient […] yes, you quite simply become more skilled.’

The clinical nurse specialists underlined the need to maintain and ensure necessary skills. In simulation-based team training, the clinical nurse specialists were drilled in realistic patient situations without entailing risk for the patient. They felt that they were able to test themselves, but also that they obtained confirmation of their own competence. At the same time, they claimed that interdisciplinary participation in simulation gave the team members a better understanding of each other, enabling the entire team to function better.

They had found that their managers and colleagues expected clinical nurse specialists to be competent and up-to-date, and to feel comfortable with mastering their tasks when an emergency arises. They were concerned about the lack of training in practice and found that they have little chance to build up experience-based expertise in pediatric units, where centralized patient management led to shorter hospital stays and less complexity.

Discussion

In this study, we wished to describe clinical nurse specialists’ experiences with participating in simulation-based team training in paediatric units. We also wished to examine the impact of this type of training on patient care in an emergency situation.

The importance of good planning and realism in simulation

The clinical nurse specialists claimed that simulation-based team training must be properly scheduled and organised to provide a learning outcome. In units that arranged weekly simulation training, the clinical nurse specialists found the training not to be well planned, with random opportunity for them to participate. However, if simulation-based team training was part of the ward’s objectives and was planned as part of the roster, they were able to participate regularly – up to twice yearly.

There was common agreement that resources must be allocated, and that managers and network administrators must see the need for a scheduled and organised simulation. This view is supported by the literature, which states that effective results are achieved through a systematic approach to incorporating simulation (5, 16). Investment in simulation should be endorsed by the management and included in the unit’s quality management (13, 17).

Realistic simulation important for learning

In order to provide a learning outcome from simulation-based team training, training in realistic patient situations is highlighted. The clinical nurse specialists stated that to achieve this, it is essential for all those healthcare providers that are present in emergency situations to train together. The literature supports the clinical nurse specialists’ opinion that it is essential for learning that the participants feel that the simulation is realistic (18). Scenarios should be designed that are linked to the learning objectives (7, 13). The participants must be prepared for what they are to react to during the scenario, and they should be familiar with the environment, available equipment and patient history (7, 19). Rules and expectations should be clarified in a briefing session, and the environment should be made safe in order for the participants to feel secure (13).

The literature also supports the clinical nurse specialists’ view that the entire team must train together. Østergaard and collaborators describe simulation that includes a complete, interdisciplinary team as a method which improves the quality of teamwork behaviours (9). In emergency situations, so-called ad hoc teams are formed, which may represent a challenge for team collaboration. They have little time to plan and may find it challenging that team members are unfamiliar with each other and each other’s competence (8, 20).

The importance of a good leader

Experience shows that team members also change continuously. Roberts and collaborators claim that even short simulation-based team-training sessions can improve teamwork and communication in ad hoc teams, as they enhance behavioural skills and critical thinking (20). According to Salas and collaborators (2008), ‘patient care is a team sport’ (21), and the composition of the teams who train together is therefore important.

The clinical nurse specialists also communicate the need for a good team leader to improve the progress and quality of patient care in emergency situations. They believe simulation training in leadership is important. Failures of leadership and team collaboration have been shown to be points of vulnerability for adverse events (8, 9, 20). Leading a team includes coordination and planning of the course of events, for which clear communication is absolutely essential. 

Hunt and collaborators point out that a good leader must be capable of giving instructions and ensuring that messages are received, understood and acknowledged (8). Another important quality is to listen to the team members and collect and disseminate the information that emerges (7). Leadership is highly important in emergency situations, which underpins the need for training in this role to improve team collaboration in order to avoid adverse events.

Experience of learning and mastery through simulation

According to the clinical nurse specialists in this study, they both learned and coped by participating in stimulation-based team training. Three of them had participated in a simulation centre, which they found provided them with a considerable learning outcome. The majority of the clinical nurse specialists had experienced that the emergency room in the department was used as a practice area.

They claimed that it was very advantageous that the simulation was conducted in a familiar environment. The clinical nurse specialists described how they introduce elements from the simulation into emergency situations. This may indicate that simulation-based team training is beneficial for clinical practice.

The clinical nurse specialists’ perception that simulation-based training provides them with both learning and mastery may be explained by the fact that simulation as a learning activity builds on key principles of andragogy. The educator Malcolm Knowles claims that safe, familiar surroundings are important to enable adults to learn. He also says that adults learn best when learning provides immediate benefits (22, 23).

In situ training sessions

When healthcare providers train in the established simulation centres, they are given the opportunity to train in everything from simple skills at the individual level to advanced interactions and team-based decision-making (24). Using the emergency room in the department as a practice area, in an environment where emergency situations occur, is referred to in the literature as in situ training (25). The literature supports the need for in situ training in paediatric units, as this can enable healthcare providers to recognise signs of acute illness and therefore provide better treatment (26).

The study by Sørensen and collaborators showed that the participants perceived the situation as more realistic when the training was conducted in situ. It made no difference whether the simulation was conducted in a simulation centre or in situ, in terms of attitude to patient safety, coping with stress or teamwork (27).

The clinical nurse specialists had found that it could be challenging to achieve good communication and dialogue in emergency situations. Communication was set as a learning objective for the simulation training, underlining the importance for the entire team to train in communication. They described it as especially challenging to persuade team members to communicate (9). Good dialogue and communication within the team gives team members the courage to provide valuable input with regard to patient care (8). Based on the principles of CRM, the precise purpose of simulation is for the team members to communicate and cooperate (9). Training in communication skills should therefore be formulated as learning objectives in the simulation.

New knowledge acquired

Other learning objectives and attention with regard to the simulation-based team training were connected to advanced cardiopulmonary resuscitation and medical equipment. The clinical nurse specialists were supplied with new knowledge by participating in the simulation, while also obtaining confirmation of their own competence. They prepared themselves for the simulation by reading up on theory and described this as being useful to bring with them into emergency situations. The practical skills they acquired were also useful.

The concept of the learning circle is used in connection with simulation training. It means that theoretical knowledge is put into practice through training in patient situations before this knowledge is translated into clinical practice and experience is augmented for new learning (28, 29). This may indicate that simulation is a suitable learning activity for experienced clinical nurse specialists, and that it provides learning that can be transferred to emergency situations.

Importance of regularity and feedback

There was variation in the frequency with which clinical nurse specialists had the opportunity to participate in simulation, but those who were able to participate regularly reported having obtained a significant learning outcome from it. This tallies with recommendations from the Norwegian Society of Paediatricians that training in basic and advanced cardiopulmonary resuscitation should be undertaken at least every six months (17). This is also in line with Motola and collaborators, who claim that simulation is most successful when it is an established, regular activity (13). In considering how frequently simulation should be conducted, it is important that it is seen as a learning process, and not as a one-time event (30).

The clinical nurse specialists had positive experiences of debriefing and considered feedback from the facilitator and the participants to be important for learning. If simulation is to be used as an educational tool, reflection on one’s own efforts is essential (31). According to Eppich and Cheng, facilitated debriefing is necessary, as learning from simulation-based training begins after completion of the scenario (3, 32).

Hunt and collaborators furthermore claim that simulation training without reflection and feedback does not lead to effective learning (8). The facilitator directs the debriefing in order to elicit systematic reflection in the participants. The learning effect of reflection is therefore dependent on the supervisory expertise of the facilitator (9, 32). This underlines the importance of facilitator’s role, which is described in the literature as a key component of simulation training (9).

The importance for patient care in an emergency situation

The clinical nurse specialists claimed that they acted more quickly and effectively in emergency situations after having participated in simulation training. They brought with them elements from the training situation, such as distribution of roles and tasks and thinking about dialogue and communication in the team.

They argued that participation in simulation training provides an opportunity to enhance the clinical nurse specialists’ competence to act in emergency situations. All of them agreed that regular simulation-based team training in paediatric units is crucial for improving patient care in these situations. The literature supports the notion that training in communication, leadership and teamwork has an impact on patient safety (9). It also helps to enhance the technical skills of the individual participant as well as the team (33).

Truijens and collaborators claim that the patient-reported quality of health assistance improves when the personnel are trained in the principles of CRM (34). According to Draycott and collaborators, this is the first time that a pedagogical intervention has yielded a clinically important and permanent improvement in perinatal outcomes (35). The clinical nurse specialists take responsibility in this regard when they communicate a need to participate in simulation-based team training, because they wish to maintain their competence and improve patient care in emergency situations.

In order to substantiate the fact that simulation is a learning activity that actually improves patient safety, Schmidt and collaborators claim that there is also a need to identify clear patient safety objectives (33). Ziv and collaborators maintain that if simulation is not used as a learning activity, this constitutes not only a training issue, but also an ethical issue (10). Standardised training and certification through simulation-based team training makes it possible to reduce errors and adverse events, and thus improve patient safety. The establishment of this scheme will, in our opinion, enable the health services to appear more reliable and ethically sound. 

Conclusion

The clinical nurse specialists in this study found that participation in simulation-based team training contributes to quality of patient care and confidence in one’s own skills. They highlight the need to offer simulation-based team training as a well-planned learning activity in paediatric units, with realistic scenarios and including the entire team. The clinical nurse specialists feel that by participating in simulation training they obtain confirmation of their own competence and a basis for further learning, mastery and sense of security. In the interviews, they point to examples from practice, showing that simulation training has had a positive influence on their competence to act in emergency situations.

This study revealed that the organisation and implementation of simulation in individual paediatric units is random and lacking in clear requirements and parameters. There may therefore be a need for a Norwegian standard for simulation-based team training for doctors and nurses in paediatric units to ensure patient safety in emergency situations. 

References

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To better meet the health challenges of the future, many industrialised countries have implemented health reforms during the last decade (1). The challenges have been described as including insufficient coordination of the health services, little focus on prevention and an expected growth in the number of elderly people with chronic illness and need for assistance (1). This is reflected in the Care Coordination Reform, which was introduced in Norway in 2012, with the goal of improving public health and sustainably improving the health and care services (2).

In line with the health reforms in the Nordic countries, the Norwegian coordination reform has been concerned with relocating the responsibility for treatment to places closer to the patient’s home (1). This implies that a larger proportion of the health services will be transferred to municipal health providers, thus to slow down the growth in the use of hospital services. According to Grimsmo and Magnussen (1), the Norwegian coordination reform is distinctive in having been implemented in the specialist and primary health services separately.

One of the instruments in the Norwegian coordination reform has been to establish collaboration agreements between the municipalities and the health enterprises. According to the evaluation of the coordination reform undertaken by the Research Council of Norway (3), the reform has had a limited impact on the way in which the municipal health services perceive this collaboration. The collaboration is described as asymmetrical, since the hospital doctors are authorised to decide when a patient is ready for discharge without having to involve the medical competence in the municipality to any appreciable extent in this decision (3).

Shorter hospitalisation periods after the reform

The fee paid by the municipalities for patients who are deemed to be ready for discharge from hospital is a further key instrument in the Norwegian reform. During the first year after the reform, some hospitals reported a reduction of up to 96 per cent in the number of excess hospitalisation days of patients who were ready for discharge (4). According to the investigation made by the Office of the Auditor General of resource utilisation and quality in the health services after the introduction of the coordination reform (5), more than 80 per cent of the patients who were registered as ready for discharge nationwide in 2014 were received by the municipality on the day when the discharge was announced. Hospitalisation times for the oldest patients have also been reduced.

At the geriatric emergency department of Diakonhjemmet Hospital, the reduction in hospitalisation time after the introduction of the coordination reform was associated with an increase in readmissions in the same period (7). According to the evaluation report for the coordination reform, this is not linked to an increase in readmissions, but an increase in admissions during the same period in which a reduction in hospitalisation periods had been observed (3). Coordination statistics from the Directorate of Health confirm that there is a correlation between shorter hospitalisation periods and readmissions (8). There is a greater risk of readmission among patients who are transferred to the municipality on the same day that the discharge is notified, when compared to patients who remain in hospital beyond this time (8). A large-scale Swedish study found a correlation between shorter hospitalisation periods and reduced survival after discharge among elderly patients with femoral neck fractures (9). 

Flaws in patient transfer

Because of the shorter hospitalisation periods for the oldest patients, we can see an increase in the number of patients being transferred to nursing homes (8). This increase has not resulted in a significant increase in nursing home beds (5). However, more widespread use of double rooms and corridor patients has been registered (10), as well as an increase in short-term stays at the cost of permanent places in nursing homes (11). The transfer of responsibility for treatment from the hospitals to the municipalities entails that the patients being transferred suffer from more serious, complex and treatment-intensive conditions, when compared to the situation before the introduction of the coordination reform (10, 11). Thus, the nursing homes have been charged with more specialised care and treatment, with a concurrent need for more competence. However, the municipalities have not upgraded their competencies to any great extent since the introduction of the coordination reform (5). The nursing homes report having unfulfilled needs for competence and increased time constraints after the coordination reform (9).

When seriously ill patients needing treatment are to be transferred to health services at another level, collaboration between the service levels is essential. Measures including collaboration agreements between the municipalities and the health enterprises have been introduced to reinforce the coordination between the service levels. The municipalities nevertheless report that the collaboration associated with transfer of patients has been weakened since the introduction of the reform (10). This was confirmed by a nationwide inspection, which identified deficiencies in the flow of information when patients were transferred between hospitals and municipalities (5).

We wished to obtain more knowledge about the consequences of the coordination reform for frail elderly patients who are transferred from hospitals to nursing homes. We therefore compared the incidence of deaths, age, sex, hospitalisation days and discharge destination before and after the reform.

Material and method

We undertook a retrospective study in one of the nursing homes in Bergen municipality by retrieving data for the periods from May 2009 to December 2011 and March 2012 to May 2014, i.e. before and after the introduction of the coordination reform respectively (2). The study was undertaken in a 35-bed short-term ward. This ward received patients who could not be discharged to their own homes after emergency hospitalisation. The objectives of their stay in the ward were:

• to complete medical treatment and care that had been initiated in the hospital, and
• to identify care needs and the possibilities for transfer to their own homes.

Through this period (2009–2014), the ward has followed the same procedures, with unchanged staffing. When our study was initiated in 2013, all the patients included had either been discharged from the nursing home or were deceased.

Patients

We included all patients ≥ 70 years who were transferred from Haukeland University Hospital or Haraldsplass Diaconal Hospital to the short-term ward at the nursing home during the period in question. We collected patient characteristics, such as age, sex, hospitalisation days, discharge destination and death, from the municipal patient administration system.

Statistics

We analysed the data with the aid of descriptive statistics. The data were not normally distributed, and we used the Mann-Whitney U-test to compare continuous data and the chi-square test to compare categorical data between two groups. The data were analysed with the aid of the statistics package SPSS, version 20 for Windows.

Ethics

The study was approved by the Regional Committee for Medical and Health Research Ethics (REK Western Norway), which also granted exemption from the requirement for patient consent.

Results

We included a total of 363 patients with a median age of 86 years (range: 70 to 103 years), whereof 59 per cent were women. The patients who were admitted after the introduction of the coordination reform were significantly older (p < 0.001), and more than twice as many died in the nursing home (p = 0.002) (Table 1).

Mortality increased after the introduction of the coordination reform, at six as well as twelve months (p = 0.04 and p = 0.01 respectively) (Table 2).

Fewer patients were transferred to a long-term place in another nursing home (p = 0.001), while a higher proportion of patients were discharged to their homes (p = 0.04). There was no significant difference (p = 0.91) in the number of days the patients remained alive prior to and after the coordination reform (Table 1).

Discussion

This study shows that patients who were transferred from a hospital to a nursing home after the introduction of the coordination reform were older than those transferred before the reform. In addition, a larger proportion of the patients died in the nursing home (Tables 1 and 2). As far as we are aware, this study is the first to have retrieved information on age and death in this patient population.

Unfortunately, we have no variables that may explain the increased mortality that we have found. Despite an increase in survival in hospitals from 2010 to 2014 (12), we have limited information on the correlation between changes in the frequencies of deaths in hospitals and nursing homes. The most likely explanation, which has also been emphasised in previous studies (10, 11), is that the patients who were transferred to nursing homes after the coordination reform suffered from more serious, complex and treatment-intensive conditions than those who were admitted before the reform. Moreover, the patients admitted after the reform were older. The number of diagnoses has been shown to contribute to increased mortality among residents in nursing homes (13, 14).

Weakening of service levels

We found that the number of patients who died in nursing homes doubled after the introduction of the coordination reform (from 13 per cent to 27 per cent; p = 0.002). Nursing, care and treatment of extremely ill and dying patients are especially challenging, in terms of both competence and resources. According to the National Action Plan’s guidelines for palliative cancer care (15), the palliative pathway is characterised by a complex clinical picture with acute conditions such as complications and organ failure, and an increasing need for care. Those who follow up this patient group emphasise close follow-up with appropriate information to the patients and their next of kin (15). Studies show that sufficient time and competence with regard to palliative care as well as communication with the patients and their next of kin are essential for the provision of good end-of-life care (16–19).

To provide seriously ill and terminal patients with appropriate follow-up and care, planning of the transfer of treatment responsibility to another service level is essential. It is therefore a source of concern when nurses in the municipal health services report that the collaboration between the service levels has weakened when it comes to discharge planning in the specialist health services since the introduction of the coordination reform (10). Moreover, it is problematic that medical competence in the municipality is rarely involved in assessments and decisions regarding the transfer of treatment responsibility from the specialist health services.

Weaknesses of the study

One weakness of our study is that we have no data regarding any possible differences in terminal care between nursing homes and hospitals. Nor do we have any data on how the patients or their next of kin perceive the transfer to a nursing home at this stage of life. We are therefore unable to draw any conclusions as to where terminal care can best be provided to this group of patients. When departing from life or losing someone close, security, predictability and a perception of support and competence are essential factors. Whether this can be best ensured close to the patient’s home or where the specialist competence is highest, depends on several factors that are not elucidated in this study. Further research should focus on the treatment needs of patients admitted to nursing homes since the coordination reform. There is a need for knowledge on how patients and their next of kin perceive a transfer from a hospital to a nursing home at this stage of life. User experience is a key element in optimising service provision.

Our results are generated by a small retrospective study undertaken in a single nursing home, and we have no information on morbidity. This is a weakness of this study. It would consequently be interesting to compare our figures with equivalent figures from other short-term wards from the same period and area. No such figures are available, however.

A less favourable situation for the elderly and frail

The results show that fewer patients were transferred to long-term places in other nursing homes, and that a higher proportion of the patients were discharged to their homes (Table 3). Other studies also conclude that a higher number of frail, elderly people are discharged from hospitals to nursing homes. This transfer entails an increase in short-term and rehabilitation places at the cost of permanent places in nursing homes (10).

There is reason to assume that frail elderly patients who are discharged from nursing homes to their own homes constitute a group with a high risk of multiple readmissions. Our argument for this assertion is a general increase in readmissions after the introduction of the coordination reform (8), specifically in the patient population in acute geriatrics (7). Since the coordination reform, there has been a small increase in the number of readmissions from nursing homes to hospitals.

It remains to be seen what role the establishment of municipal emergency day-care units (KAD units) may have for this patient population. The scheme was introduced in the period from 2012 to 2016. Bergen municipality established the scheme in 2016, after the completion of our study. So far, there are indications that very few patients are admitted from nursing homes, while close to 18 per cent of the patients who pass through these units are transferred to nursing homes within a few days (21).

Conclusion

Our results show that patients who have been transferred from hospitals to nursing homes since the coordination reform tend to be older and have shorter survival when compared to the situation before the introduction of the reform. The nursing homes may thus face a higher throughput of patients as well as challenges related to less clarified patient issues when it comes to active treatment versus terminal care.

There is reason to assume that these factors entail consequences for the competence and staffing needs in nursing homes in order to achieve the coordination reform’s objective of sustainably improving public health and the health and care services. To cope with the new situation after the introduction of the coordination reform, the staffing in nursing homes ought to be reviewed in light of their tasks and competence needs. Further research should focus on the treatment needs of patients who have been admitted to nursing homes after the coordination reform.

References

1.       Grimsmo A, Magnussen J. Norsk samhandlingsreform i et internasjonalt perspektiv. 2015.

2.       Helse- og omsorgsdepartementet. Samhandlingsreformen: Rett behandling – på rett sted – til rett tid. Oslo. 2009.

3.       Norges forskningsråd. Evaluering av samhandlingsreformen. Sluttrapport fra styringsgruppen for forskningsbasert følgeevaluering av samhandlingsreformen (EVASAM). 2016.

4.       Otterstad HK, Birkestrand T. Samhandlingsreformen. Færre overliggere i sykehus. Sykepleien 2014;102(2):49–51. Available at: https://sykepleien.no/forskning/2014/02/faerre-overliggere-i-sykehus. (Downloaded 06.02.2017).

5.       Riksrevisjonen. Riksrevisjonens undersøkelse av ressursutnyttelse og kvalitet i helsetjenesten etter innføringen av samhandlingsreformen. Dokument 3:5 (2015–2016). Oslo: Helse- og omsorgsdepartementet. 2016.

6.       Hermansen Å, Grødem AS. Reformeffekt: Redusert liggetid blant de eldste. Sykepleien Forskning 2015;10(1):24–32. Available at: https://sykepleien.no/forskning/2015/02/redusert-liggetid-blant-de-eldste. (Downloaded 06.02.2017). 

7.       Ranhoff A, Alaburic S, Engstad T, Mensen L, Svendsen T. Readmissions after discharge from an acute geriatric unit; an analysis of probable causes. European Geriatric Medicine (EUGMS) September 2014; Rotterdam, Nederland, 2014. p. S207 – S8. Available at: http://www.em-consulte.com/en/article/927637. (Downloaded 12.02.2017).

8.       Helsedirektoratet. Samhandlingsstatistikk 2013–14. Oslo. 2015.

9.       Nordström P, Gustafson Y, Michaëlsson K, Nordström A. Length of hospital stay after hipp fracture and short term risk of death after discharge: a total cohort study in Sweden. BMJ 2015.

10.     Gautun H, Syse A. Samhandlingsreformen. Hvordan tar de kommunale helse -og omsorgstjenestene i mot det økte antallet pasienter som skrives ut fra sykehusene? NOVA. 2013.

11.     Abelsen B, Gaski M, Nødland SI, Stephansen A. Samhandlingsreformens konsekvenser for det kommunale pleie- og omsorgstilbudet. International Research Institute of Stavanger. 2014. Available at: http://www.ks.no/globalassets/vedlegg-til-hvert-fagomrader/helse-og-velferd/samhandlingsreformen/forskning-og-evaluering/iris-2014-382-samhandlingsreformens-konsekvenser.pdf. (Downloaded 12.02.2017).

12.     Lindman AS, Kristoffersen DT, Hansen TM, Tomic O, Helgeland J. Kvalitetsindikatoren 30-dagers overlevelse etter innleggelse i norske sykehus – resultater for året 2014. Oslo: Kunnskapssenteret for helsetjenesten i Folkehelseinstituttet. 2015.

13.     Drageset J, Eide GE, Ranhoff AH. Mortality in nursing home residents without cognitive impairment and its relation to self-reported health-related quality of life, sociodemographic factors, illness variables and cancer diagnosis: a 5-year follow-up study. Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation. 2012.

14.     Barca ML, Engedal K, Laks J, Selbaek G. A 12 months follow-up study of depression among nursing-home patients in Norway. Journal of Affective Disorders 2010;120(1–3):141–8.

15.     Helsedirektoratet. Nasjonalt handlingsprogram med retningslinjer for palliasjon i kreftomsorgen. Oslo. 2010.

16.     Dreyer A, Forde R, Nortvedt P. Autonomy at the end of life: life-prolonging treatment in nursing homes—relatives’ role in the decision-making process. Journal of Medical Ethics 2009;35(11):672–7.

17.     Davies E, Higginson I. Better palliative care for older people. WHO. 2004.

18.     Wille I-L, Nyrønning S. Omsorg og behandling ved livets slutt i sykehjem. Geriatrisk Sykepleie 2012;3.

19.     Husebø B, Husebø S. Sykehjemmene som arena for terminal omsorg – hvordan gjør vi det i praksis? Tidsskr Nor Lægeforen 2005;125(1352):4.

20.     Lovdata. Lov om kommunale helse- og omsorgstjenester m.m. 24.06.2011 [helse- og omsorgstjenesteloven]. Available at: https://lovdata.no/dokument/NL/lov/2011-06-24-30. (Downloaded 06.02.2017).

21.     Skinner MS. Øyeblikkelig hjelp døgnopphold. Oppsummering av kunnskap og erfaringer fra de første fire årene med kommunalt øyeblikkelig hjelp døgnopphold. Rapportserie nr. 13. Gjøvik: Senter for Omsorgsforskning. 2015. Available at: https://brage.bibsys.no/xmlui/bitstream/id/398536/rapport_13_2015_web.pdf. (Downloaded 06.02.2017).

The study described in this article is based on three key facts:

• Heart disease gives increased risk of depression.
• Depression has serious consequences for the sick person.
• The health service is not sufficiently proficient at identifying and implementing measures to combat depression in connection with heart disease.

Background

The prevalence of depression associated with heart disease is estimated at between 15 and 40 per cent (1). There is considerable variation linked to the type of study and whether self-report questionnaires or structured diagnostic interviews are used. Nonetheless, depression is consistently found to occur far more often among those who are medically ill than in the healthy population, with a two to three times higher estimated prevalence (2). Studies at somatic hospitals indicate that 15 to 20 per cent of patients with myocardial infarction have a depressive disorder consistent with diagnostic criteria, but an even greater number have an increased level of symptoms of depression. The same prevalence is reported among patients hospitalised with other kinds of heart disease (3). Outpatients also exhibit a clearly higher prevalence than people who do not have cardiovascular disease. An American study of 30 000 adults found a prevalence of 9.3 per cent among patients with cardiovascular disease over a 12-month period, and 4.8 per cent for those with no concomitant medical disorders (4).

Major negative consequences

Depression can have a profound effect on the course and outcome of heart disease and is associated with non-compliance with treatment and rehabilitation programmes (3). When reviewing approximately 150 000 participants in 54 studies, Nicholson et al. found that depression predicted a cardiovascular event in people who had not previously had heart disease and new events for those who had. Moreover, the risk of major negative consequences was twice as great following a cardiovascular event (5).

The report by Folkehelseinstituttet [Norwegian Institute of Public Health] on mental disorders in Norway from a public health perspective (6) states that depression is as strong a risk factor for death as smoking. This applies in particular to mortality resulting from cardiovascular disease and infectious diseases. The report refers to three correlations between depression and death resulting from cardiovascular disease. Firstly, depressed patients smoke more than the rest of the population. They drink more alcohol, train less and have a poorer diet. Secondly, depression may be a result of the burden of somatic illness. However, the risk of serious illness also increases with depression. Thus, the negative impact has a two-way effect. Thirdly, a negative interaction may arise that in itself leads to increased mortality due to depression and heart disease since depression weakens the body’s powers of resistance.

Greatest impact on working capacity

Patients with cardiovascular disease and concomitant depression demonstrate three times less compliance with recommended medical treatment than patients without depression (7). This entails reduced health and life quality, increased financial expenses and at worst a shorter life expectancy. For the health service, this means more consultations, longer periods of hospitalisation and more readmissions.

Depression is a major cause of increased sickness absence in the case of somatic illness (8) and can be the determinant that excludes the person concerned from the labour market (9). An American study of 20 000 employees who were treated for depression showed that depression affected working capacity more negatively than all other illnesses (10). Depression may result in withdrawal from social life and increased irritability and pessimism, which in turn affects relationships with managers and colleagues. Some employees may become less productive due to a decline in energy, poorer concentration and a reduced ability to make decisions (11).

Depression is underdiagnosed and undertreated in patients with concomitant somatic illness. In line with the American Heart Association (3) and a number of European guidelines (12), Helsedirektoratet [Norwegian Directorate of Health] (13) recommends screening routines for depression. How can we make provision for this in a busy hospital everyday setting, and at what point during the treatment should we conduct such screening? The purpose of our study is to test and evaluate a method for systematic screening for depression in patients in cardiac medical wards. Early identification may enable mental health assistance to be provided at an earlier stage.

Method

We conducted the study in cooperation with the cardiac medical ward (professional nurses, head of the unit and senior consultant) and specialists in psychology at the Diakonhjemmet Hospital’s Unit for Mental Health Services in Somatic Care. The specialists in psychology lectured on depression as well as training health personnel on the ward in the use of the screening tools. The specialist nurses on the ward were of key importance in developing specific procedures for when, how and where screening should take place, and they administered the collection of data. A specialist in psychology and a specialist nurse carried out interviews with patients in the further screening of those assessed as possibly depressed (score on Beck’s depression inventory scale (BDI-II) was 14 or more). For practical reasons, we tested the screening over two six-week periods. 

Inclusion and exclusion criteria

We assessed all the patients admitted to the cardiac medical ward with a heart-related diagnosis with a view to their participation in the study. We excluded patients who had been admitted with a myocardial infarction, and who were already included in another research project. The exclusion criteria were language problems, reduced reading ability and inability to complete the questionnaire. In addition, we excluded patients who were too ill, or who were unable to participate for other practical reasons. We asked a total of 154 patients, 48 of whom declined to participate in the survey. Out of 106 participants, just over half were men (58 patients). The reasons for refusal to participate were complex. Some were too tired to complete the questionnaire mapping symptoms of depression (Patient Health Questionnaire-9 (PHQ-9)), some did not wish to participate, whilst others had been discharged before we offered screening. The most common diagnoses on admission were arrhythmia, heart failure and valvular heart disease. The Regional Committee for Medical and Health Research Ethics (REC) has approved the project.

Screening instrument

We asked the patients taking part to fill in PHQ-9 – a questionnaire with nine diagnostic criteria for depression (14) (table 1). Like other well-documented questionnaires, PHQ-9 has fairly high accuracy with a sensitivity of up to 80–90 per cent (15), while some studies have exhibited lower sensitivity (16). It takes 2–5 minutes to complete the form. Each question has four possible responses from 0 to 3 (0 = Not at all, 1 = Several days, 2 = More than half the days and 3 = Nearly every day). A score of 10 or more indicates possible depression and a need for further screening (16).

Further screening

A nurse carried out further screening of the patients with a score of 10 or more on the PHQ-9 questionnaire. The screening was based on Beck’s depression inventory scale (BDI-II), one of the most commonly used self-report scales for level of depression, i.e. degree of symptoms of depression (17). In addition, we asked patients about earlier depression, grief reactions and social support. Patients with symptoms of depression were given the opportunity to meet with a psychologist at the hospital, or were referred to the outpatient clinic for follow-up. We conducted a cluster analysis to explore possible patterns and profiles related to PHQ-9 scores in accordance with the k-means clustering method, whereby the values of a sample of variables are analysed to identify any sub-groups (18).

Results

Of the 106 patients who were screened for depression, 19 (18 per cent) had a PHQ-9 score of 10 or more, and underwent further screening for depression. Seven of these (7 per cent of the total number of screened patients and 37 per cent of the patients with a PHQ-9 score of 10 or more) had a BDI-II score of 14 or more, and had a feedback session with a psychologist. Six of these patients (6 per cent of the total number of screened patients and 32 per cent of the patients with a PHQ-9 score of 10 or more) were diagnosed with depression. The cluster analysis showed that a group of 33 participants had a relatively high mean score on questions about sleeping problems and tiredness. 

Figure 1 shows the distribution of mean scores for women and men for each of the nine questions. All nine questions for both sexes gave 0 as the minimum value and 3 as the maximum value. Women tended to score higher than men on most of the questions but the disparities were not statistically significant for any of the questions. Nor were there any statistically significant gender disparities for the total score on PHQ-9.

Discussion

We were able to implement the screening method we tested in the study in a systematic manner. However, a large number of responses were lacking (48 patients), which may have been due to the fact that it is challenging to carry out screening during the short period of admission to the ward (two days on average). It may be difficult for many patients to answer the questionnaire and questions on their mental health during this acute medical phase. Moreover, since this is a research project, patients had to deal with a written consent form in addition to verbal information about the study.

An alternative to using the questionnaire may be to ask the first two questions in PHQ-9, referred to as PHQ-2, orally, as recommended by Helsedirektoratet [Norwegian Directorate of Health] (13): ‘Over the past two weeks, have you been feeling down, depressed or hopeless?’ and ‘Over the past two weeks, have you often felt little interest or pleasure in doing things?’ If the patient responds affirmatively to these questions, further questions about symptoms of depression can be posed. This method can work just as well as using questionnaires (19). However, using PHQ-2 might have captured a larger number of those who reserved the right to refuse to participate.

Should be examined at a later stage

When we compared prevalence with previous studies, we found fewer patients who satisfied the criteria for depression and concomitant heart disease – only six out of 106. A weakness of our study is that patients with acute myocardial infarction are not included, since this group exhibits a high incidence of depression (20). Another weakness may be that the PHQ-9 screening instrument was not sufficiently sensitive, and we know of no validation studies among patients with heart disease in Norway. Another explanation for the identification of only a few patients with depression may be the time of the screening, since this was undertaken at an acute phase when the patients were tired and distressed with regard to having heart disease or aggravated symptoms, while they were also happy about having survived. The hospital’s self-management courses for patients with cardiovascular diseases and family members reveal that some people only report problems of depression after they have been at home for a period of time. It will be interesting to conduct follow-up Norwegian surveys of screening for symptoms of depression in hospitalised patients at some point after they have been discharged from hospital. We are now in the process of conducting such a study. 

How did patients react to questions about depression? Patients who proved to be depressed expressed their gratitude that this had been detected and that they had been offered follow-up. Meanwhile, several did not wish to participate because they were tired. They said that they had more than enough to think about without also having to fill in a questionnaire on depression.

A number of patients reported symptoms of depression, but did not meet the criteria for clinical depression. A total of 33 patients had considerable problems with sleep and exhaustion, and in some cases other mild symptoms of depression. It is important to also pay attention to mild symptoms because they undermine life quality, reduce functional level and can diminish compliance with recommended measures (15). Moreover, patients who experience considerable tiredness and sleeping problems may be at risk of developing depression at a later stage. Prevention is vital in this respect, for example by informing the patient, family members and GP about the increased risk, and informing them of the measures described in the guidelines of the Helsedirektoratet [Norwegian Directorate of Health] (13).

Conclusion

Screening for symptoms of depression in a cardiac medical ward requires methods that are straightforward and easy to implement because the period of hospitalisation is short and the hospital personnel have a hectic working day. The study shows that it is possible to carry out screening using the PHQ-9 questionnaire in line with the recommendations of professional guidelines. A possible alternative is to ask PHQ-9’s first two questions, also referred to as PHQ-2, orally. Many patients with heart disease report signs of depression after they have been at home for a period of time following discharge, when they are trying to get their lives back on track. It is vital to put in place screening procedures later in the course of the illness.

We are in the process of initiating a new study in which we map symptoms of depression at the outpatient follow-up, using PHQ-2 and another scale for level of depression: the Hospital Anxiety and Depression Scale (HADS). The latter form replaces BDI-II, which we used in this study. HADS gives us the opportunity to establish whether an anxiety disorder is present. Heart disease combined with anxiety is associated with increased risk of aggravation of heart disease (21, 22).

Referanser

1.       Kop WJ, Plumhoff JE. Depression and coronary heart disease: Diagnosis, predictive value, biobehavioral mechanisms, and intervention. In: Allan R, Fisher J (ed.). Heart and mind. The practice of cardiac psychology. Washington DC: American Psychological Association 2012:143–68.

2.       Creed F, Dickens C. Depression in the medically ill. I: Steptoe S (red.). Depression and physical illness. Cambridge University Press 2007:3–18.

3.       Lichtman JH, Bigger JT, Blumenthal JA et al. Recommendations for screening, referral, and treatment: A science advisory from the American Heart Association Prevention Committee of the Council on Cardiovascular Nursing, Council on Clinical Cardiology, Council on Epidemiology and Prevention, and Interdisciplinary Council on Quality of Care and Outcomes Research: Endorsed by the American Psychiatric Association. Circulation 2008;118:1768–75.

4.       Egede LE. Major depression in individuals with chronic medical disorders: prevalence, correlates and association with health resource utilization, lost productivity and functional disability. Gen Hosp Psych 2007;29:409–16.

5.       Nicholson A, Kuper H, Hemingway H. Depression as an aetiologic prognostic factor in coronary heart disease: A meta-analysis of 6362 events among 146,538 participants in 54 observational studies. Eur Heart J 2006;27:2763–74.

6.       Nasjonalt folkehelseinstitutt. Psykiske lidelser i Norge: Et folkehelseperspektiv. Rapport 8:2009. Oslo: Nasjonalt folkehelseinstitutt 2009.

7.       DiMatteo MR, Lepper HS, Croghan TW. Depression is a risk factor for noncompliance with medical treatment: Meta-analysis of the effects of anxiety and depression on patient adherence. Arch Intern Med 2000;160:2101–7.

8.       Soderman E, Lisspers J, Sundin O. Depression as a predictor of return to work in patients with coronary artery disease. Soc Sci Med 2003;56:193–202.

9.       Henderson M, Harvey SB, Øverland S, Mykletun A, Hotopf M. Work and common psychiatric disorders. J R Soc Med 2011;104:198–207.

10.     Kessler R, White LA, Birnbaum H, Qiu Y, Kidolezi Y, Mallett D, Swindle R. Comparative and interactive effects of depression relative to other health problems on work performance in the workforce of a large employer. J Occup Environ Med 2008;50:809–16.

11.     Berge T, Falkum E. Se mulighetene. Psykisk helse og arbeidsliv. Oslo: Gyldendal Akademisk 2013.

12.     Graham I, Atar D, Borch-Johnsen K et al. European guidelines for cardiovascular disease prevention in clinical practice: executive summary. Eur Heart J 2007;28:2375–2414.

13.     Nasjonale retningslinjer for diagnostisering og behandling av voksne med depresjon i primærhelsetjenesten og spesialisthelsetjenesten. Helsedirektoratet 2009.

14.     Kroenke K, Spitzer RL, Williams JB. The PHQ-9: validity of a brief depression severity measure. J Gen Intern Med 2001;16:606–13.

15.     U.S. Preventive Services Task Force. Screening for depression: Recommendations and rationale. Ann Intern Med 2002;136:760–64.

16.     McManus D, Pipkin SS, Whooley MA. Screening for depression in patients with coronary heart disease (data from the Heart and Soul Study). Am J Cardiol 2005;96:1076–81.

17.     Beck AT, Steer RA, Brown GK. Beck Depression Inventory – Second Edition. Harcourt Assessment, Inc., USA. 1996.

18.     SPSS Statistics 22.0.0. K-means Cluster Analysis. Available at: http://www-01.ibm.com/support/knowledgecenter/SSLVMB_22.0.0/com.ibm.spss.statistics.help/spss/base/idh_quic.htm (downloaded 23.03.2016).

19.     Henkel V, Mergl R, Coyne JC, Kohnen R, Moller HJ, Hegerl U. Screening for depression in primary care: will one or two items suffice? Eur Arch Psychiatry Clin Neurosci 2004;254:215–23.

20.     Lichtman JH, Froelicher, ES, Blumenthal JA et al. Depression as a risk factor for poor prognosis among patients with acute coronary syndrome: Systematic review and recommendations. A scientific statement from the American Heart Association. Circulation 2014;129:1350–69.

21.     Janszky I, Ahnve S, Lundberg I et al. Early-onset depression, anxiety and risk of subsequent coronary heart disease. 37-year follow-up of 49,321 young Swedish men. Am J Cardiol 2010;56:31–6.

22.     Roest AM, Martens EJ, de Jone P et al. Anxiety and risk of incident coronary heart disease. A meta-analysis. Am J Cardiol 2010;56,38–46.

Type 2 diabetes is an increasingly prevalent illness (1), and is placing significant demands on patient self-management. In Norway, as in the rest of Europe, the health authorities are investing in group-based self-management programmes to enhance coping skills and improve therapeutic compliance (2). Since 1997, approximately 60 Learning and Mastery Centres have been established in the specialist health services, and these arrange ‘Beginners’ courses’ for patients with type 2 diabetes (3). Since the introduction of the Coordination Reform in 2012, various generic self-management programmes have also been established by local authorities to support recommended health behaviour. In addition, the Norwegian Diabetes Association runs local motivation groups.

Socioeconomic factors

A summary from the Norwegian Knowledge Centre for the Health Services shows that group-based self-management programmes have a positive effect on mental health, coping, relationships and knowledge of one’s disease (4). Long-term studies also indicate improved blood sugar control in persons with type 2 diabetes after group-based programmes (4-6). However, it is uncertain whether group-based self-management programmes are equally attractive for all groups of patients. Studies from other countries show selection bias, and differences are related to socioeconomic factors. Participation in group-based self-management programmes declines with lower economic status and increasing age (7).

A Canadian cross-sectional study of 46 553 patients with diabetes shows significant differences between participants and non-participants in group-based self-management programmes. Among non-participants, there is a preponderance of persons with a low educational level, advanced age, immigrant background, mental illness and comorbidity (8). One study also shows that patients recruited to the group programmes are those who initially exhibit the best health behaviour (9), which indicates that it is difficult to recruit persons who struggle to maintain appropriate health behaviour. Studies also indicate higher participation in group-based self-management programmes by women than by men (10, 11).

Selection bias

The association between patients’ socioeconomic status, gender, health behaviour and participation in group-based self-management programmes has not been investigated in Norway, but less use of health services in groups with a low socioeconomic status can generally be observed (12, 13). There are significant correlations between socioeconomic conditions and health (14-16), with a higher prevalence of obesity (17, 18) and smoking (19, 20), as well as little physical activity and low intake of fruit and vegetables (20, 21) in groups with a low socioeconomic status. With regard to type 2 diabetes, an increased prevalence can be observed in certain immigrant groups (22), in groups with a low educational level (23, 24) and among pensioners in receipt of disability benefit and persons who are not economically active (25).

According to Report No. 20 to the Storting, ‘National strategy to reduce social inequalities in health’ (15), the health services shall contribute to reducing social inequality, and Learning and Mastery Centres are described as an important arena for this (p. 54). Experience from other countries showing that group-based self-management programmes do not attract men or persons with a lower level of education to the same extent as other groups suggests a need to investigate how the current service functions in Norway. The purpose of this study was to investigate a sample of Norwegian patients with type 2 diabetes. We wanted to discover how large a proportion of these had participated in group-based self-management programmes and what characterises participants and non-participants. Are there differences in socioeconomic factors, gender and health behaviour?

Method

Our study is based on Norwegian data from an EU study (EU-WISE) that involves six European countries and is funded under the 7th Framework Programme. The study focuses on social networks and self-management of type 2 diabetes in economically deprived groups (26). Although EU-WISE has the express objective of reaching those who struggle with diabetes, there was no capacity to focus on the particular challenges of immigrant groups. In conformity with the protocol of EU-WISE, each participant country recruited 300 patients with type 2 diabetes in urban and rural areas to a descriptive cross-sectional study (26). Criteria for inclusion were that the patient was diagnosed with type 2 diabetes, was older than 18 years and spoke Norwegian sufficiently well to be able to understand and complete a questionnaire.

We excluded patients with double diabetes, gestational diabetes, severe cognitive impairment, severe psychiatric illness, terminal illness and patients who had recently undergone extensive surgical or medical treatment. We approached outpatient clinics in the specialist health service with the aim of reaching patients who had been referred there by their GP, as such patients very often struggle to cope with the disease and develop long-term complications. Via a total of eight outpatient clinics in health trusts in Eastern Norway, diabetes nurses invited patients who fulfilled the inclusion criteria to participate in the study in the period from August 2013 to February 2014. The study has been approved by the Regional Committees for Medical and Health Research Ethics (REC). Participation was voluntary and the participants signed an informed consent form.

The questionnaire

The questionnaire that was used in EU-WISE was composed of various validated instruments (26). The study participants provided sociodemographic data (gender, age, highest completed education, employment status, number of household members, income level and parents’ country of birth). They were also asked whether they had participated in a group-based self-management programme. Comorbidity was measured using self-reporting, and the participants were asked whether they had been diagnosed with

• hypertension,
• high cholesterol,
• angina,
• heart attack,
• heart failure,
• TIA/ transient ischaemic attack,
• stroke,
• atherosclerosis/intermittent claudication, or
• depression.

They were also asked if they had undergone heart surgery.

The Summary of Diabetes Self-Care Activities (SDSCA) scale was used to measure health behaviour (27). The SDSCA scale asks respondents to indicate the number of days in the previous week that they have followed the recommended diet, been physically active, measured their blood sugar and checked their feet. Smoking is indicated in the yes/no category. SDSCA is internationally validated. In connection with the study, we have followed international principles for translation and adaptation to Norwegian conditions (28), but otherwise the instrument has not been validated in Norwegian. 

Analysis and coding

The dependent variable in the study is participation in group-based self-management programmes. We used sociodemographic data to describe the sample, and compared socioeconomic conditions, comorbidity and smoking in participants and non-participants in group-based self-management programmes. Somatic comorbidity was summarised (varying from zero to nine additional disorders) and categorised as ‘low comorbidity’ (zero to two disorders) or ‘high comorbidity’ (three or more disorders). Depression was analysed as a separate category as a mental health indicator.

In relation to health behaviour in the previous seven days, we divided the continuous data into three strata: those who did not self-monitor their illness (zero days per week), constituted the reference group. Those who self-monitored to some extent, i.e. one to four days per week, constituted one stratum, while those who self-monitored regularly, i.e. five to seven days per week, represented another stratum. In addition, gender was cross-tabulated with socioeconomic variables to obtain an overview of variation and comparability between men and women in the sample. We investigated statistical disparities using the chi-square test and logistic regression analysis. P-value for significance was set at < 0.05. We performed the analyses using IBM SPSS Statistics version 23.

Main result

We asked 362 patients to take part in the study, and 298 gave their consent (response rate 82.4 per cent). The sample is presented in Table 1. The table shows that the average age of the sample was 60 years, with a slight preponderance of men. Somewhat less than half are in full-time or part-time work, while one-quarter are unemployed, disability pensioners or on sick leave. Almost half are only educated to primary/lower secondary level, and two-thirds have an annual income corresponding to, or less than, NOK 350 000. The vast majority have parents born in Norway or another European country.

To the question of participation in group-based self-management programmes, 112 (38 per cent) respond that they have participated, while the remainder have not. With regard to socioeconomic conditions, there are significant differences between participants and non-participants in group-based self-management programmes in terms of gender, educational level and smoking (p <0.05). The proportion of women and those with a higher education is higher, and that of smokers is lower. There is an indication of covariance between low participation in group-based self-management programmes and patients with high comorbidity, but this is uncertain as the difference is not significant (p = 0.055). 

Table 2 compares women and men in the sample with a view to socioeconomic conditions. We find two significant differences between the groups: the men in the study are older than the women, while the women have a lower income. Health behaviour is presented in Table 3, and the results demonstrate that physical activity clearly increases the odds of participating in patient education programmes, where daily physical activity shows an OR equal to 0.4, and physical activity one to four days per week shows an OR equal to 0.32. Foot care (one to four days per week), on the other hand, is associated with an OR equal to 2.6. The findings in Table 3 remain valid when we control for gender.

Discussion

The findings generally indicate a selection bias for group-based self-management programmes, consistent with findings in other countries (7-9). Among those who have not participated in group-based training programmes, we see a tendency towards poorer health behaviour (smoking) and indications of poorer health (more comorbidity). We also see a greater probability that those who participate in training programmes perform some or a significant amount of physical activity. The findings thus support the notion that patients with less appropriate health behaviour participate less, despite the fact that these patients may be said to be those who need help to pursue more health-promoting coping strategies. More women had participated in group-based training, but the fact that the men in the sample are older than the women might partly explain their lower course participation. This accords with findings from other studies (6, 7).   

There is reason to believe that the proportion who have participated in group-based self-management programmes in this study is somewhat high in relation to the entire population with type 2 diabetes. Recruitment to the study was undertaken at diabetes outpatient clinics and the personnel at the outpatient clinics are often co-organisers of self-management courses. It may therefore be assumed that personnel at the outpatient clinics actively recruit their patients to courses. 

More women use the service

Gender selection bias with a preponderance of women among the participants in group-based self-management programmes is consistent with findings from other studies, which show that women with type 2 diabetes have a greater tendency to use socially interactive training programmes than men (11, 29). We argue that this is because men are often less open about the diagnosis and prefer a more ‘private’ approach to the chronic disease, for example through written information and the internet (29). We have little knowledge as to the reason for these different preferences. However, one study shows that participants on group-based self-management programmes compare themselves to each other and find that some participants appear ‘diligent’ while those that struggle feel like the ‘losers’ of the group (30). A Norwegian study shows that position and affiliation to the group can influence participation in coping groups (31).

Findings on group dynamics may explain why few smokers in the study had participated in group-based self-management programmes. Previous studies show that smokers feel that they are stigmatised and receive unwanted attention in group contexts (32, 33). The group setting around group-based self-management programmes may consequently be perceived to be challenging. Diabetes nurses, GPs and medical specialists will therefore fail to reach all patients, even though they have increased the focus on referring exposed patient groups to group-based self-management programmes. In a qualitative Danish study (34) related to patients who do not wish to participate in such programmes, the patients point to four challenges with the courses, which are associated with the following:

• lack of flexibility in course programmes (too intense and a wish for fixed start times and breaks that are not too rigid)
• teaching methods (a wish for easily understood, hands-on teaching, active participation and a clear focus without too many choices)
• groups that are too large (a wish for small groups of six to seven persons)
• lack of respect from health personnel

The study indicates that low participation in group-based programmes is related to factors in the course design rather than in the patients’ personal traits. This again begs the question of whether investment in group-based self-management programmes has the potential to reach all patient groups. It also raises the question of whether the programme we have today is good enough.

Health and social networks

Poor health among economically deprived groups coincides with minimal social networks and few resources in the networks that they have (35). One alternative is therefore to develop interventions to strengthen these networks and the patients’ local community. Attention must shift from the individual and their ability to change and control themselves, to factors beyond the realm of the individual and the individual’s self-control (36). Lifestyle and health are shaped and play out in the social space surrounding the patient. With this understanding, it is possible to look at potential resources in the network and local community as an alternative approach to persons who struggle to cope with type 2 diabetes. Increased social activity beyond the sphere of the health service and the traditional ‘health arenas’ may represent health-promoting interventions for the patient with type 2 diabetes, without the person, the disease and lifestyle changes taking central stage.

As health personnel, we have a responsibility to meet the interests of all groups in the population and test out several approaches in order for health information to reach more people, thereby reducing social inequality in health (37). Investment in patient education in Norway is biased towards group-based self-management programmes, and apparently few objections are raised with regard to the fact that these programmes are not equally suitable for all groups. (38). Our study indicates that there is a need for new and different thinking, and for a focus that extends beyond individual factors in the training programmes.

Broader self-management programmes are suitable for reaching patients who are difficult to recruit to group-based programmes. Moreover, we need more knowledge regarding the wishes of non-participant patient groups. With the increasing prevalence of type 2 diabetes (1), the lack of self-management programmes constitutes a serious problem with regard to health, long-term complications and increased suffering. At a societal level, an inability to cope and inappropriate health behaviour push up treatment and follow-up costs. Awareness and attention to social health disparities is an important priority area for health policy (15), which unfortunately until now has received little attention in nursing science research. 

Methodological assessments

The purpose of the study’s recruitment strategy via outpatient clinics in the specialist health service was to obtain a sample that included patients with a complex disease, who struggle to cope with their type 2 diabetes. In line with the statistics, a poor ability to cope and a complex disease are more frequent in population groups with a low socioeconomic status (24). It is generally difficult to recruit persons with a low economic status to participate in research (39). The picture portrayed by the sample in this study (Table 1) shows that one-quarter are disability pensioners or on sick leave, one-third live alone and have a lower than average income, and one in three report high comorbidity. By way of contrast, the proportion of disability pensioners in the Norwegian population in the age group 18–67 years is 9 per cent (40).

Altogether, 47.7 of study participants reported having a primary/lower secondary education, while the figure is slightly less than 30 per cent of the population among those who are 60 years and over (41). With this comparison, we believe that we can estimate to have obtained a sample that is in line with our intention. However, the representativity of the sample in relation to the total population with type 2 diabetes in Norway is somewhat uncertain. With regard to morbidity, data from the Norwegian Quality Improvement of Laboratory Examinations (NOKLUS) register show that 5.5 per cent have suffered a stroke (42), while the corresponding figure in this study is 5.3 per cent. The NOKLUS register is based on 16 223 Norwegian patients with type 2 diabetes. Other figures are difficult to compare. Although the percentage that has suffered a stroke is approximately the same as the percentage in the NOKLUS population, we cannot guarantee the representativity of the sample. Caution should therefore be exercised in making any generalisations.

The health condition of the informants in the study is based on self-reporting, which may represent a weakness in the study. Holseter and colleagues, however, find that self-reporting yields valid data when presenting health disparities, also when different social groups are compared (43). There are few respondents with an immigrant background in the study, which is probably attributable to the fact that the questionnaire was in Norwegian. The diabetes nurses who did the recruitment for the study confirmed that informants with another cultural background did not manage to complete the questionnaire due to language difficulties. The decision not to translate the questionnaire to minority languages was a joint decision by EU-WISE and was related to finances. We have thereby not included participants with another cultural background, who represent an important and exposed group with regard to type 2 diabetes, socioeconomic status and health behaviour (22). This constitutes a weakness in our study.

Conclusion

The results show that more than half of the informants have not participated in group-based self-management programmes, and that there is a selection bias in patient education programmes among people with type 2 diabetes. Participation is higher among women and persons with a higher education, while smokers and persons with high comorbidity have a lower participation rate. There are also higher odds of participation among patients who are physically active and therefore have better health behaviour. These findings are consistent with those from international studies, which show that certain groups fail to benefit from group-based self-management programmes on which there is a considerable focus today. Our study highlights a need for more knowledge on which programmes may suit those groups of patients who do not find existing ones attractive. The study also indicates a need for more targeted recruitment to existing programmes. In order to help equalise social health disparities, it seems to be important to pursue approaches that go beyond programmes that are clearly oriented towards the individual, thereby reaching more groups in the population.

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Weight measurement is one of the basic indicators of child and adolescent well-being, nutrition and health. Norwegian authorities follow the World Health Organization (WHO)’s recommendations for close follow-up of a child's weight. The authorities’ main goal with weighing and measuring by child health clinics and school health services is to help identify children and adolescents with weight deviations at an early point in time. Another goal is to reduce the negative consequences that deviant weight can have for the individual child (1).

Measuring weight is an important part of the work of a public health nurse, whose duties are guided by a preventive and health promotion perspective. Measuring weight is a primary preventive action whereby all children are routinely weighed from birth to adolescence (2). In order to enable public health nurses to implement appropriate actions, it is essential that the scales that are used provide precise measurements. Earlier studies show that many scales used to measure body weight are imprecise (3, 4). Among other things, inaccurate scales can yield Body Mass Index values (BMIs) that can result in an incorrect assessment of a child's weight status (5, 6).

Recommended tests

To ensure accurate measurements, the national professional guidelines for weighing and measuring by the child health clinic and school health services recommend that scales be tested twice annually, and more often if they are moved around (1). No specifics are given for how the scales are to be tested, nor are there any requirements to use medically approved scales. According to Júlíusson et al. (7) it is important to test a scale with the weight the scale is meant to measure, i.e. baby scales should be tested with weights corresponding to the weight of children under the age of two. Flat scales at child health clinics should be tested with weights corresponding to the weight of children over the age of two.

The tests should be performed with certified weights to ensure accurate measurements (4). Placement of the scale, the surface underneath and type of scale are also significant (3). Norway has a requirement to use medically approved scales for monitoring, diagnosing and medical treatment in medical practice (8). Public health nurses perform health monitoring by following the growth development of the child and adolescent population, which can provide a good basis for preparing targeted preventive measures and evaluating the local and national effect of the measures (1).

Measuring weight is a primary preventive action whereby all children are routinely weighed from birth to adolescence.

Evaluating the extent to which the child health clinics follow evidence-based recommendations necessitates a survey of actual practice compared with what is standard. In this way, any need for improvements can be discovered (9).  

Survey current practice

Clinical audits set criteria and standards for surveying practice. The purpose of this audit was to ascertain whether the scales used at child health clinics and during home visits to newborns measure correctly. We also wanted to map whether current practice is consistent with evidence-based recommendations (1). According to the National Strategy for Quality Improvement in Social and Health Services, a prerequisite for good quality is the probability of reducing errors to a minimum (11). The following questions were the starting point for undertaking a clinical audit:

• Do the scales used at the child health clinics and during home visits measure the correct weight?
• Are there differences in accuracy between medically approved and non-medically approved scales?
• Do the child health clinics follow the recommendations for testing scales a minimum of twice a year with a weight the scale is meant to measure?

Methodology

In the period January to May 2015 we carried out a clinical audit of baby and flat scales used at child health clinics and during home visits.

Criteria and standards

Clinical auditing is a method for systematic evaluation and quality improvement consisting of five steps. First, the area of improvement must be identified, after which criteria and standards are set. Practice is surveyed before practice is compared with criteria and standards. Finally, measures are implemented, and new surveying can be carried out. Criteria are set based on best practice, and shall be predicated on evidence-based recommendations (10).

A standard must be defined if criteria are to be useful. A standard describes the quality level of what one desires to achieve, and is presented as a percentage (12). The criteria set for our project prescribed that baby and flat scales used at child health clinics and during home visits must show the correct weight. They shall also be tested a minimum of twice a year with a weight the scale is meant to measure. To gain an overview of how many of the scales are accurate, we set an ideal standard of 100 per cent correct weight.

Preparation and execution

The reference standard that was used was certified weights loaned by the Outpatient Obesity Clinic at Haukeland University Hospital (HUS) and Teck-Ho Service. The weights were calibrated in advance at Kiwa Teknologisk Institutt. We tested stationary baby scales, portable baby scales for use during home visits, and stationary flat scales. The weights represented the weights the scales were meant to measure. Baby scales are used to weigh children from birth to age two, and these were tested with 2 kg, 5 kg, 7 kg, 10 kg and 15 kg weights. Flat scales used at child health clinics weigh children from age two until they start school. These scales were tested with 10 kg, 15 kg, 20 kg, 30 kg and 40 kg weights. In advance, we received an introduction to and briefing on the calibration of scales at Kiwa Teknologisk Institutt.

The tests should be performed with certified weights to ensure accurate measurements. 

We performed all of the tests at the child health clinics on a flat, hard and stable surface, such as a suitable table, or on the floor. In order to check that the scales measured correctly, we tested the scales’ accuracy, repeatability and stability. We measured accuracy by placing certified weights on the scale. We tested repeatability by repeating the procedure three times. Stability was checked by performing the corner test on the scales. This was done by placing a 10 kg weight on the various points (the middle and all four corners) of the scale. The scales were re-set to zero between each test. We recorded the results of the measurements, information about the scales and the control routines at the child health clinic.

Collection of data

Data were collected from March to May 2015. We included one large city municipality and four rural municipalities in the same hospital trust, with altogether 27 child health clinics. Because midwives from the “Midwife Home Visitor” service at the hospital visit the homes in the city municipality during the first week of a child’s life, we also tested five of their baby scales. The hospital requires the scales to be medically approved and has routines for testing them. In all, we tested 152 scales, of which 102 were baby scales and 50 were flat scales. Prior to collection of the data, we informed senior public health nurses at the various child health clinics about the study by e-mail, and we received approval to come to the clinics at agreed times. We asked the available public health nurse about the control routines at the child health clinic.

Data analysis

We analysed data with the aid of SPSS 22. Coding and entry of data were quality assured by a duplicating check. We used descriptive statistics and average deviation to evaluate the accuracy and average standard deviation per scale to assess repeatability. The chi-square test was performed to examine differences between accuracy on medically approved and non-medically approved scales. The level of significance was set at p <0.05 (13).

Results

Accuracy, repeatability and stability

Of 152 scales, 16 showed 100 per cent correct weight during all control measurements; of these nine were baby scales (n = 102) and seven were flat scales (n = 50). The baby scales that were not correct had deviations ranging from 0.01 kg to 1.65 kg, while the deviations on the flat scales varied from 0.05 kg to 2.00 kg. Accuracy and repeatability declined with increasing weight (Table 1). Scales with stability deviations also had accuracy and repeatability deviations.

Medically approved and non-medically approved scales

Eighty-two of the scales were medically approved, of which 50 were baby scales (n = 102) and 32 were flat scales (n = 50). All of the stationary baby scales were medically approved. Many of the portable baby scales used during home visits were non-medically approved. The medically approved scales were significantly more accurate during most measurements than the non-medically approved scales (Table 2 and Table 3). Half of the non-medically approved flat scales had a deviation of 0.5 kg or more, while only one of the medically approved flat scales had a deviation of 0.5 kg (Table 3). The medically approved scales also did better with regard to repeatability and stability.

Control routines

Three of 27 child health clinics had good routines in accordance with the recommendations, where the baby scales were tested a minimum of twice a year with a 5 kg weight. The “Midwife Home Visitor” service also had good routines, where the scales were regularly checked when serviced. Five child health clinics had routines where they regularly tested the baby scales with weights under 5 kg. For instance, they used weights of 0.5 to 1 kg, toys, large liquid soap containers, loose-leaf binders and packages of butter. The other child health clinics had no regular control routines for baby scales, and none of the child health clinics had routines for testing flat scales. The child health clinics that had good routines and the “Midwife Home Visitor” service had more accurate scales than the child health clinics that had no routines, or had routines where they tested the scales with weights under 5 kg.

Discussion

Our results showed that even though many scales are highly accurate, a scale that is not tested can in principle show any reading. Only 16 of 152 scales showed 100 per cent correct weight. Schlegel-Pratt and Heizer (4) believe that established standards are important for accurate scales. It is conceivable that a standard of 100 per cent correct weight is somewhat strict, but it is difficult to judge acceptable deviations. Two different scales used at the same child health clinic can be imprecise in either direction, and can thus yield a wider discrepancy. This can result in weight loss at one visit and weight gain at another visit, and vice versa. Such weight variations can potentially affect decisions with respect to interventions. A deviation of only 20 grams on a baby scale can produce a discrepancy of 40 grams, and the larger the deviation, the greater the potential consequences.

Consequences for practice

It is very important to assess weight development during the neonatal period because weight reflects nutrition and well-being. Difficulty with breastfeeding is the main reason for large weight loss after birth (14). In newborns, a 10 per cent weight loss limit has been established for implementing interventions (1). We saw scales used for home visits that showed up to 590 grams too little at 5 kg (Table 1), a deviation of more than 10 per cent. It is conceivable that inaccurate scales can trigger interventions on a completely erroneous basis. Such instances require public health nurses to invest time and resources and can also have negative consequences for the family concerned. For example, already well-established breastfeeding may be disrupted if the mother loses confidence in her ability to breastfeed.

A scale that is not tested can in principle show any reading.

We also saw scales that showed up to 140 grams too much at 5 kg (Table 1). Such a deviation can cause serious consequences in cases where a mother is assured that her newborn has gained the normal amount of weight, when in reality this may not be the case. Collection of reliable weight measurements is usually not an isolated act, but must be viewed in the context of an overall assessment of the child (15). The clinical eye must therefore never be underestimated. Looking at clinical signs in conjunction with assessing the child's general condition provides valuable additional information (1). It can be the most important background for the decisions that are taken in cases where the scales do not measure correctly.

After babyhood, the child will be weighed at ages two and four. The measuring point at age four is particularly important for being able to determine early development of child overweight/obesity (1). Public health nurses have a particular responsibility for tracking a child's weight and recognising risk factors for overweight/obesity and metabolic disorders (16). Earlier studies have shown that inaccurate scales can lead to miscalculations of a child's BMI (5, 6). It is essential that the scales measure correctly if public health nurses are to prevent overweight/obesity and implement individual interventions.

Control routines and standards for use

According to the weighing and measuring guidelines for the child health clinic and school health services, growth measurements are the surest method for assessing whether children are growing satisfactorily (1). In view of this we question why the same requirements are not made of the scales used in the public health nurse service, as are made at GP surgeries and hospitals (8). Today, it may appear that random circumstances and finances determine the type of scale that is used. While public health nurses do not diagnose and provide medical treatment, they perform health monitoring at the individual and population level by weighing (1).

Since the results show significant differences in accuracy when medically approved and non-medically approved scales are compared, is it far from sufficient to perform health examinations with scales that are not subject to requirements. A standard should therefore also be introduced for the use of medically approved scales in the child health clinic and school health services. WHO recommends that bathroom scales should not be used in assessing a child's growth since they have often proven to be unreliable (17). This bolsters our recommendations to use medically approved scales.

It is conceivable that inaccurate scales can trigger interventions on a completely erroneous basis.

Control routines at child health clinics vary considerably. Few child health clinics tested the scales in accordance with the guidelines, and no child health clinics had routines for testing flat scales. Minor deviations were found while testing 2 kg, but at 5 kg and above the deviations were considerable. Our results showed reduced precision with increasing weight, particularly for non-medically approved scales. These findings are in line with Stein et al. (3), who also report that the scales show reduced precision with increasing weight, and that control routines are important for accuracy. Testing the scales with, for instance, 0.5 kg will give a false sense of security that the scales are accurate.

Schlegel-Pratt and Heizer (4) recommend regular tests with certified weights. For this reason the child health clinics should at least have 5 and 10 kg weights. In this way, systematic tests of both baby and flat scales can be performed with 5, 10 and 15 kg, and more deviations can be discovered. While procurement of weights may be a question of finances, such an investment is a one-off expense that will contribute to greater quality assurance in the public health nurse service.

Transferability to the school health services

In this clinical audit we tested the scales at child health clinics, but we believe that the results can also be transferred to the school health services. The study conducted by Biehl et al. (5), which was performed on scales at various schools, points out that failure to test the scales will likely lead to miscalculations of overweight and obesity. This finding is supported by Gerner et al. (6), who state that inaccurate scales can lead to miscalculations of children’s BMI. In the school health services, children are weighed in the first, third and eighth grade (2). During 40 kg tests, the maximum weight we tested, there was a discrepancy of three and a half kilograms between the lowest and highest measured weight (Table 1). It is conceivable that the deviation will increase with higher weight. An eighth grader can weigh more than 40 kg. Scales in the school health services should therefore be tested with heavier weights, which can be a challenge in terms of procurement and storage. One possibility is to consider a service agreement with a calibration firm.

Strengths and weaknesses

One advantage of the audit was that all data were collected directly at the child health clinics, with no use of intermediaries. Accuracy was thoroughly tested by checking several weights. We also tested repeatability and stability. We recorded the type of scales that were used and could therefore compare results from medically approved and non-medically approved scales. We found few studies about the accuracy of scales through systematic searches for scientific articles and no studies concerning the accuracy of baby scales. Not recording the year in which the various scales were put into service may constitute a weakness, but it was difficult to obtain this information.

Public health nurses have a particular responsibility for tracking a child's weight and recognising risk factors for overweight/obesity and metabolic disorders.

According to Biehl et al. (5), newly procured scales usually measure the correct weight. However, heavy use, incorrect use, general wear and tear, and wear and tear due to frequent transport affect accuracy. A common misunderstanding is that when a scale has been installed and calibrated, instrument error is insignificant (4). The scales at child health clinics are frequently used and are moved in connection with home visits. Combined with the lack of control routines, these factors entail a risk that the scales used at child health clinics measure inaccurately. The study conducted by Stein et al. (3) showed a level of inaccuracy that was three times higher with worn scales than with scales in perfect condition. 

Going forward

The final step in a clinical audit process involves implementing measures in practice and conducting a new survey. Data collection per se has no impact unless it is followed up (18). All of the child health clinics received verbal or written feedback about the results of their scales. Conducting this clinical audit heightened awareness of the necessity of testing the scales at child health clinics. Routines must be improved before a new survey can be conducted. A good start would be for all child health clinics to begin following the weighing and measuring guidelines for the child health clinic and school health services by testing the scales a minimum of twice a year. Furthermore, the tests must be conducted with a weight the scale is meant to measure.

Conclusion

This audit, which was conducted on scales in use at child health clinics and during home visits, showed that only nine of 102 (8.8 per cent) baby scales and seven of 50 (14 per cent) flat scales were 100 per cent correct. There were also significant differences in accuracy between medically approved and non-medically approved scales. Only three of 27 (11.1 per cent) child health clinics had good control routines for their scales. Our results thus show that there is a discrepancy between practice and evidence-based recommendations.

Measuring weight is a cost-effective and simple way of gathering data about the population, but the validity of the measurements must be critically assessed. Although the importance of weight measurements is well documented, it appears that there may be a lack of awareness about checking whether the scales actually measure accurately. Ensuring good control routines and introducing standards to use medically approved scales can help to quality assure a valid collection of data in the child health clinic and school health services.

Many thanks to all who made it possible to conduct the study: Jörg Aßmus for helpful guidance in statistics, Evelyn Kvamme for briefing us on weight calibration, and Petur Júlíusson and Jan Larsen for lending certified weights.

References

1.         Helsedirektoratet. Nasjonale faglige retningslinjer for veiing og måling i helsestasjons- og skolehelsetjenesten. Oslo: Helsedirektoratet. 2011. Available at: https://helsedirektoratet.no/Lists/Publikasjoner/Attachments/236/Nasjonal-faglig-retningslinje-for-veiing-ogmaling-IS-1736.pdf (downloaded 20.04. 2016)

2.       Sosial- og helsedirektoratet. Kommunens helsefremmende og forebyggende arbeid i helsestasjons- og skolehelsetjenesten. Oslo: Sosial- og helsedirektoratet. 2004. Available at: https://helsedirektoratet.no/Lists/Publikasjoner/Attachments/388/veileder-til-forskrift-kommunens-helsefremmende-og-forebyggende-arbeid-i-helsestasjons--og-skolehelsetj-.pdf (downloaded 20.04. 2016).

3.       Stein RJ, Haddock CK, Poston WS, Catanese D, Spertus JA. Precision in weigting: a comparison of scales found in physician offices, fitness centers, and weight loss centers. Public Health Rep. 2005;120:266–70. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1497726/pdf/16134566.pdf (downloaded 20.04.2016).

4.         Schlegel-Pratt K, Heizer WD. The accuracy of scales used to weigh patients. Nutr Clin Pract. 1990 Des 5(6):254–7.

5.       Biehl, A, Hovengen R, Meyer HE, Hjelmesæth J, Meisfjord J, Grøholt EK et al. Impact of instrument error on the estimated prevalence of overweight and obesity in population-based surveys. BMC Public Health 2013;13:146. Available at:  http://www.biomedcentral.com/1471-2458/13/146 (downloaded 20.04.2016). 

6.       Gerner B, Maccallum Z, Sheehan J, Harris C, Wake M. Are general practitioners equipped to detect child overweight/obesity? Survey and audit. J Pediatr Child Health. 2006;42(4):206–11. 

7.       Júlíusson PB, Vinsjansen S, Nilsen B, Sælensminde H, Vågset R, Eide GE et al. Måling av vekst og vekt: En oversikt over anbefalte teknikker. Pediatrisk Endokrinologi 2005;19:23–9.

8.       Lovdata. Forskrift om krav til ikke-automatiske vekter. 21. desember 2007 nr. 1527. Available at: https://lovdata.no/dokument/SF/forskrift/2007-12-21-1735 (downloaded 20.04.2016).

9.         Kunnskapsbasert praksis. Oslo: Nasjonalt kunnskapssenter for helsetjenesten. 2004. Available at: http://www.kunnskapssenteret.no/kunnskapsbasert-helsetjeneste/kunnskapsbasert-helsetjeneste (downloaded 19.05.2015). 

10.     Nortvedt MW, Jamtvedt G, Graverholt B, Nordheim LV, Reinar LM. Jobb kunnskapsbasert! En arbeidsbok. 2 ed. Oslo: Akribe. 2012.

11.     Helsedirektoratet. Nasjonal strategi for kvalitetsforbedring i sosial- og helsetjenesten … Og bedre skal det bli (2005–2015). Oslo: Helsedirektoratet. 2005. Available at: https://helsedirektoratet.no/Lists/Publikasjoner/Attachments/233/Og-bedre-skal-det-bli-nasjonal-strategi-for-kvalitetsforbedring-i-sosial-og-helsetjenesten-2005-2015-IS-1162-bokmal.pdf (downloaded 20.04. 2016).

12.     Anderson DG. ABC of audit. Tees Valley: Vocational Training Scheme. 2012. Available at: http://www.gp-training.net/training/tutorials/management/audit/audabc.htm (downloaded 19.05.2015).

13.     Polit DF, Beck CT. Nursing research: generating and assessing evidence for nursing practice. 8. ed. Philadelphia: Wolters Kluwer Health. 2014.

14.     Dewey KG, Nommsen-Rivers LA, Heinig MJ, Cohen RJ. Risk factors for suboptimal infant breastfeeding behavior, delayed onset of lactation, and excess neonatal weight loss. Pediatrics 2003;112(3 Pt 1):607–19.

15.     Royal college of nursing. Standards for the weighing of infants, children and young people in the acute health care setting. London: The Royal College of Nursing. 2013. Available at: https://www2.rcn.org.uk/__data/assets/pdf_file/0009/351972/003828.pdf (downloaded 20.04.2016).

16.     Helsedirektoratet. Nasjonale faglige retningslinjer for forebygging, utredning og behandling av overvekt og fedme hos barn og unge. Oslo: Helsedirektoratet. 2010. Available at: https://helsedirektoratet.no/Lists/Publikasjoner/Attachments/389/nasjonal-faglig-retningslinje-for-forebygging-utredning-og-behandling-av-overvekt-og-fedme-hos-barn-og-unge.pdf (downloaded 20.04.2016). 

17.     World Health Organization. Training Course on Child Growth Assessment. Geneve: WHO. 2008. Available at: http://www.who.int/childgrowth/training/en (downloaded 20.04.2016).

18.     Benjamin A. Audit: how to do it in practice. BMJ 2008;336:1241–5.

When someone in the family has a substance abuse problem, it affects his or her relationships, roles and ability to function. Each family member and the family as a system experience varying levels of burden (1–4). Next of kin must find ways to cope with the situation and take care of their own health.

Stress, coping and health are closely related (5), and long-term burden and stress can have both physical and psychological health effects (5–7). Alcohol problems are not just an individual problem, but also a significant relational challenge (2). A Japanese study, which included 543 next of kin of substance abusers, showed that over half of the next of kin had poor mental health (4). Next of kin of substance abusers have been shown to have both somatic and psychological problems in Norway as well (8–9). Simultaneous burdens such as worry, unpredictability, insecurity, financial strain, fear, guilt, shame, sorrow, stigma, humiliation, conflicts, consequences of irresponsibility, continually new crises, a feeling of always having to be vigilant, loss of social support, coping dilemmas and uncertainty about the future have been found in next of kin across cultures (10).

Strategies to cope with challenges

Coping strategies are thinking-related, intrapsychic (conscious or unconscious) or concrete behavioural strategies that are used to handle challenges, and are often divided into problem-focused and emotion-focused strategies. Problem-focused strategies include ways of acting in which the individual actively seeks solutions to the problems that are causing stress in order to change the situation. Emotion-focused strategies involve efforts to regulate feelings and reduce inner disturbance and discomfort resulting from the stress (11, 12). Coping theory, as seen in the work of Carver et al. (12), also distinguishes between adaptive and maladaptive coping strategies that cut across problem-focused and emotion-focused strategies. They emphasise that what is perceived to be maladaptive coping in one context may be appropriate and adaptive in another context (12).

According to prominent coping researchers such as Lazarus and Folkman (11), it is beneficial to bring attention to coping strategies as they lend themselves to cognitive and behaviour-oriented interventions and create opportunities for change. If coping strategies are used effectively, they can serve as a buffer against the negative effects that stressful situations can have on the individual (11). Being the next of kin of a substance abuser may be such a situation in which the person experiences a lack of control and lack of coping opportunities, and ineffective coping can cause the person’s health to deteriorate (13, 14). Next of kin often lack support, understanding and offers of assistance, and their own feelings and needs generally come second (14, 15).

Greater focus on next of kin

In recent years, there has been increasing focus on the next of kin’s own needs and adaptive coping in both the somatic and the mental health service (16–18). According to Vifladt et al. (19), the incidence of prolonged, complex health challenges has increased within the general population. Consequently, the focus must shift from the traditional treatment model in which experts ‘cure’ patients over to the patient’s and the next of kin’s own self-understanding, effort and coping. A proposal from the World Health Organization (WHO) to change the definition of health to ‘the ability to cope and self-manage’ also shows that coping is important (20).

Despite extensive research in the stress-coping field, few studies have been conducted on how the next of kin of substance abusers cope with their own life situation. Based on previous research on the associations between prolonged burden and diminished health, the purpose of this quantitative cross-sectional study was to examine the level of burden, the use of coping strategies and mental health in the next of kin of substance abusers, as well as the potential associations between the variables. The hypothesis was that the next of kin experience a high level of burden, that many of them have poor mental health, and that the level of burden and use of coping strategies are associated with perceived mental health.

Methods

Design

We conducted a quantitative cross-sectional study in the autumn of 2014. Next of kin of people with a substance abuse problem responded to standardised questionnaires about burden, mental health and coping. The questionnaires also contained questions about demographics and substance abuse-related variables in the respondent. A cross-sectional design does not produce causal explanations, only potential associations. However, in keeping with the principles of inductive reasoning, correlations support and reinforce a hypothesis (21).

Sample and recruitment

To be included in the study, participants had to be the next of kin (child, parent, stepparent, domestic partner/spouse, grandparent or sibling) of one or more substance abusers. Substance abuse includes the harmful use of illegal drugs, alcohol or non-prescribed medications. The participants had to be over the age of 16. Exclusion criteria were substance abuse in combination with severe mental illness, such as psychosis, or if the next of kin had his or her own serious substance abuse problem.

We invited the next of kin to take part in the study who had been in contact with outpatient clinics in the mental health service and cross-disciplinary, specialised addiction treatment and who had participated in an open meeting place, a counselling centre and a special interest organisation for substance abusers and their families in Telemark in the period from September to December 2014.

Participants received an information sheet, invitation, informed consent, self-reporting questionnaire and a stamped, addressed envelope from therapists and contact persons in the above-mentioned institutions and organisations, which they were asked to return to the researchers.

Ethics and privacy protection

The study was conducted as part of a master’s degree project in mental health care at Oslo and Akershus University College of Applied Sciences and was pre-approved by the Regional Committees for Medical and Health Research Ethics, South-East Norway. All the participants gave their informed written consent. The responses were anonymous and returned to the researchers. The participants were free to withdraw from the study at any time without repercussions.

The questionnaires

Demographic and substance abuse-related variables

We registered gender, civil status, educational level, employment status and income. Regarding the substance abuse-related variables due to the life situation of the next of kin, the questions asked how often the substance abuser and next of kin had contact, whether they lived together with the substance abuser, how they experienced the consequences of the abuse, the assistance they gave to the substance abuser, whether they had grown up in a home with substance abuse, and the type of substance the abuser primarily used.

Burden

The type and extent of burden on the next of kin were measured with the Burden Assessment Schedule (BAS 20) (22). The BAS contains 20 questions distributed across five variables: 1) impact on well-being, 2) whether the care is appreciated, 3) impact on relations with others, 4) perceived severity of the disease and 4) impact on marital relationships. Each variable has four questions with a three-part scale: ‘not at all’ = 1 or 3, ‘to some extent’ = 2 and ‘very much’ = 3 or 1. The total score per variable ranges from 4–12 and the overall score from 20–60. Higher scores indicate a greater or increased burden.

It was also possible to choose the response ‘not applicable’. In this study, the variable ‘impact on marital relationships’ was only relevant for five next of kin and was therefore not included in the calculation of the total BAS score. Thus, the total score in the study consisted of four variables with a total score ranging from 16–48. Only the total score was used in the study. When a variable had one missing response or ‘not applicable’ was selected, the value was replaced with a mean score, known as the ‘case mean substitution technique’ as described by Fox-Wasylyshyn and El-Masri (23). When two or more questions per variable in the BAS had missing responses or ‘not applicable’ was chosen, the respondent’s scores on the relevant variables were excluded. A total of 41 respondents were included in the overall BAS score.

Weimand, who translated the BAS into Norwegian (24), gave us permission to use the instrument. Sell et al. (22) described validity and reliability as acceptable in the original target group.

Mental health status

To measure mental health status, we used the General Health Questionnaire 12 (GHQ 12), a screening instrument for identifying psychological distress and general symptoms of poor mental health (25). GHQ 12 consists of 12 questions. Six of these are worded positively and have the following response choices: 0 = ‘better than usual’, 1 = ‘same as usual’, 2 = ‘less than usual’ and 3 = ‘much less than usual’. The other six questions are worded negatively and have the following response choices: 0 = ‘not at all’, 1 = ‘no more than usual’, 2 = ‘rather more than usual’ and 3 = ‘much more than usual’.

We used two different scoring systems: a) A Likert-type scale with a total score from 0–36, in which a high score indicates diminished well-being, problems and reduced functional capacity to a degree that indicates a potential mental health disorder, and b) As a screening instrument for identifying mental illness, we also used a single scoring method, i.e. the Likert scores were dichotomised as follows: 0 and 1 = 0, whereas 2 and 3 = 1, with a total score from 0–12. In line with previous studies, we chose a score of >4 as the cut-off for caseness (the indication of significant mental illness) (26).

Coping

The Brief Coping Orientation to Problems (Brief COPE) (27) is an abridged version of the COPE Inventory (12) and measures various coping strategies for managing and dealing with stress. Brief COPE consists of 28 questions distributed among 14 scales that measure various coping strategies: active coping, planning, venting, use of instrumental support, use of emotional support, acceptance, positive reframing, denial, behavioural disengagement (giving up), self-distraction, self-blame, humour, religion and substance use. All of these are combined into problem-focused (PF) and emotion-focused (EF) strategies, as well as into adaptive (A) and maladaptive (MA) strategies (12). Each the strategies is measured with two questions in which respondents state how often they use the various strategies to cope with stress – in this case related to being the next of kin of a substance abuser. Each question is scored on a scale from 1–4: 1 = ‘I haven’t been doing this at all’, 2 = ‘I’ve been doing this a little bit,’ 3 = ‘I’ve been doing this a medium amount’ and 4 = ‘I’ve been doing this a lot’. The total score is from 2–8. The higher the total score, the more the respondent used the strategy. The Brief COPE was translated into Norwegian by Kristiansen (28), who gave us permission to use the instrument.

Analysis

Non-parametric tests were used because the data did not have a normal distribution and the sample was relatively small. We used descriptive analyses: frequencies (n) with percentages (%) to present demographic and substance abuse-related variables, median (MD) and quartile differentials (QD) to present the scores on the continuous scales: BAS, the various coping strategies in Brief COPE and GHQ 12.

We performed bivariate correlation analyses between BAS, the strategies in Brief COPE and GHQ 12 using Spearman’s rank correlation coefficient (rho). Cronbach’s alpha was used to measure the internal consistency of the standardised measurement instruments, and showed good values: BAS (0.87), Brief COPE (>0.78 on all scales) and GHQ 12 (0.89). A significance level of <0.05 was used for all the tests. The analyses were performed with SPSS 22.

Results

Of 47 respondents, 44 were women (94 per cent). Twenty-five (53 per cent) were married or cohabiting. The mean age of the sample was 50 years (SD 14), and the mean number of years as the next of kin was 15 years (SD 12). Twenty respondents (43 per cent) were employed or undergoing education, and 27 respondents (57 per cent) did not have permanent, daily employment. Fifty-one per cent had an annual income of less than NOK 450 000. Substance abuse-related variables are presented in Table 1.

The results showed that next of kin are a group that experiences a significance burden and high level of psychological distress. As shown in Table 2, the median value of the total BAS score was 35 (QD 9), the GHQ 12 median value was 12 (QD 11), and 29 respondents (62 per cent) had a GHQ 12 score of >4, i.e. above the case score, which indicates clinical mental illness and a need for assistance.

The median values on the coping scales varied from 2–6. This means that all the coping strategies were used to some extent. The problem-focused strategies of planning, instrumental support and active coping, together with the emotion-focused strategies of self-distraction, emotional support and acceptance, were used the most. Except for self-distraction, these are defined as adaptive strategies. The emotion-focused strategy of humour, which is categorised as an adaptive strategy, was used the least (Table 2).

The correlation analyses showed that a higher level of burden is associated with greater psychological distress (rho = 0.375, p <0.05). Greater use of the coping strategy ‘acceptance’ showed an association with less psychological distress (rho = –0.342, p <0.05), and an increased burden with greater use of the coping strategy ‘planning’ (rho = 0.316, p <0.05) (Table 3).

Discussion

The study showed that next of kin of substance abusers experienced a significant level of burden and major psychological distress. Sixty-two per cent reported psychological distress corresponding with a need for treatment. A higher level of burden showed an association with more psychological symptoms and greater use of the coping strategy ‘planning’. Notably, the problem-focused strategies of planning, instrumental support and active coping, as well as the emotion-focused strategies of self-distraction, emotional support and acceptance, were used the most. Greater use of acceptance showed an association with less psychological distress.

The respondents had a high level of burden, and many reported psychological distress. The results showed an association between the level of burden and psychological distress. The findings confirmed previous research results, as well as the hypothesis that there is an association between prolonged burden and diminished health in the next of kin of substance abusers (2, 4, 8, 9, 29). In the stress-strain-coping-support model, the nature of the burden, the substance abuse and the consequences of the substance abuse are viewed as variables that have a greater impact on next of kin and their mental health over time than the use of coping strategies. Our findings are in line with this. It is also reasonable to assume that mental health disorders such as anxiety and depression can reduce the next of kin’s capacity to cope with the burden caused by the substance abuse. They may therefore perceive the substance abuse as an even greater burden. This may be a reason that the sample has mental health disorders at a rate six times higher than the Norwegian population as a whole (30).

Next of kin’s use of coping strategies

Next of kin of substance abusers face continually new, challenging situations without a means of dealing with them. The advantages and disadvantages of various strategies must be assessed and can contribute to coping dilemmas, as Orford et al. describe in detail (10, 31). The next of kin must make choices, and they must plan how they can best manage the situation at hand. This may explain the increased use of the problem-focused strategy of planning when the burden increases, as reported in the study. In addition to planning and seeking out instrumental support, which involves obtaining information, assistance and guidance, active coping was among the most widely used problem-focused strategies. Active coping includes direct action to try to solve the substance abuse problem or reduce its negative consequences.

Our findings about a behaviour aimed at actively solving the problem are in line with previous research findings emphasising that next of kin use coping strategies that can help to change and improve the situation (3, 8, 10). There were far more female than male respondents in the study, and most of them were parents of a substance abuser. Previous research shows that women involve themselves more in the substance abuse problem than men (8, 10, 32). Research also shows that being the parent of a substance abuser results in an additional sense of responsibility and motivation to take action (33), and may explain the use of problem-focused strategies in this sample.

Next of kin’s acceptance of the situation

The goal of emotion-focused strategies is to manage the mental stress activated by the situation at hand. In coping theory, these strategies are considered to be the most adaptive to use when the individual has little control over the burden (12). Being the parent of a substance abuser is such a situation. Acceptance and use of emotional support are defined as adaptive, emotion-focused strategies as opposed to the maladaptive strategy of self-distraction in which the goal is to avoid thinking about the cause of the perceived stress (12). It is meaningful that these emotion-focused strategies are used a great deal by the group of next of kin. It seems particularly important to use acceptance in situations that are difficult to change (12). The results show that the more the next of kin accept the situation, the less psychological distress they report. This may be related to the observation that next of kin who accept their situation and acknowledge their problems are able to deal more expediently with their situation by using adaptive, problem-focused strategies.

From this perspective, the use of adaptive, problem-focused and emotion-focused strategies are linked together and are in line with previous research (12). Carver et al. (12) note, however, that seeking emotional support may be a double-edged sword. On the one hand, it may be beneficial to promote greater use of problem-focused strategies. However, if the next of kin remains in a position of seeking support without actively using problem-focused strategies, the strategy may be regarded as maladaptive. On the other hand, self-distraction is generally regarded as a maladaptive strategy (12). However, it may also be viewed as adaptive if using the strategy can help individuals to experience periods of rest, joy, restitution and healing, even though they are in a long-term, stressful situation without the possibility of a solution.

Trying to solve unsolvable problems?

Next of kin of substance abusers do not always find that their efforts to cope have the desired outcome (3, 8, 31), nor do they always find that extensive use of problem-focused strategies are the most adaptive in terms of their own mental health when the burden variables are outside of their own control. Thus, a high level of psychological burden can be explained in part by the next of kin’s attempt to change and solve problems they cannot solve, e.g. trying to get the loved one to stop the abusive behaviour. Whether more emotion-focused coping would be more adaptive for this group of next of kin is a question that remains unanswered. However, strategies that may promote a high level of negative stress at a single point in time may nonetheless be best in the long term. This has been asserted in research on people’s resiliency during crises and difficult life situations (34).

Lazarus and Folkman (11) emphasise that it is necessary to use complementary coping strategies, such as problem-focused and emotion-focused strategies. Next of kin of substance abusers use both problem-focused and emotion-focused coping strategies, and the findings are therefore in line with previous research (2, 8, 10, 11).

In accordance with clinical experience and previous research (8, 9, 10, 31, 33), it also appears that the substance abuser’s drug and alcohol use, pattern of abuse, behaviour, and physical and mental health are significant for the next of kin’s mental health. The same is true for their own abilities, learned patterns of reaction, assistance and relief, social expectations, roles and relational interaction between the next of kin, other social circles and the substance abuser. In addition, traditional versus modern familial roles, the family’s material living conditions, gender and cultural norms are significant for mental health.

The findings from the study emphasise the importance of acknowledging the next of kin’s attempt to cope and at the same time offering support, information and assistance so that they can find adaptive coping strategies to maintain and improve their mental health.

Strengths and weaknesses

The study used well-tested measurement tools with good psychometric properties. Internal consistency measured with Cronbach’s alpha showed high reliability. Distribution of most of the continuous scales was unequal, and the sample was relatively small. As a result, non-parametric statistical analyses were performed. Compared with parametric tests, non-parametric tests are somewhat less sensitive to correlations (25). Unequal distribution, a relatively small number of participants (n), and the uncertain number of non-responders reduce external validity. This means that we should be cautious about drawing generalisations from this study. What strengthens the assumption that the findings can be generalised is that they largely correspond with previous research in the field.

The sample was a cluster and convenience sample, but it can be assumed that the respondents represented a diversified group since they had sought out various types of assistance. It can be viewed as a strength that the recruitment of participants was random, which usually reduces the risk of sample bias (36). 

Conclusion

The results show that the next of kin of substance abusers experience a significant burden and have a high risk of mental health problems. The study shows that a higher level of burden is associated with an increased level of mental health problems and the use of the coping strategy ‘planning’. The next of kin used both problem-focused and emotion-focused coping strategies to manage the situation. Acceptance showed a positive association with better mental health. When next of kin come in contact with the support system, the support system should focus on acknowledging their attempts to cope with the situation. The support system should also direct attention towards awareness-raising, support, counselling and assistance to find the most adaptive ways of coping in the individual’s unique situation.

The complementary findings in the study point in the same direction as previous qualitative research results. However, further research is needed. In particular, we know little about men and siblings who are the next of kin of substance abusers. Longitudinal studies can increase knowledge about the coping process in a longer-term perspective. They can also shed light on which causal connections this knowledge has with burden and mental health.

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Medication errors are among the most common adverse events in the health and care services. The need for greater efforts to ensure patient safety has been documented in national guidelines (1, 2, 3) and in the Official Norwegian Report 2015:11 (4). This highlights the considerable need to develop systems and cultures in order to learn from errors. Furthermore, managers must be more aware of risk and must ensure that internal controls are performed in fulfilment of the municipality’s duty to do so (5).

In 2011, the Ministry of Health and Care Services launched the national patient safety campaign ‘In Safe Hands 24/7’ as a national programme in which correct use of medication in nursing homes is one of the prioritised areas (2). This programme is carried forward in 2014–2018. The Coordination Reform entails that nursing homes have greater responsibility for treatment and not only responsibility for nursing and care. Care for patients in a nursing home is demanding and requires that the nurses have wide-ranging competence (6). Because nursing home residents use many medications at the same time, this increases the risk of interactions between drugs, side effects and incorrect medication (7).

The need to develop medication competence

In order to prevent medication errors, a variety of safety measures are often implemented, for example training, and control of the prepared drugs by two members of staff. Nevertheless, a report from the Norwegian Board of Health Supervision in 2010 reveals serious deficiencies in medication management in 51 out of 67 nursing homes that were investigated (8). Pressure of time, poor coordination between work tasks, staffing and competence as well as inadequate training are common, while following the introduction of the Coordination Reform, the complexity of nursing tasks has grown (9). Despite this, a survey showed that tasks such as cleaning and preparing food as well as poor ICT solutions stole time and attention from the care of patients (10).

The nurses state that they need better knowledge of pharmacology and age-related physiological changes (11). Alteren (12) found that student nurses lacked knowledge and experience of handling medication. Another study (13) showed that by assuming responsibility for a nursing home ward, third-year students gained experience of handling medication. Brenden et al. found that although the working environment in nursing homes provided a solid basis for learning, there was a lack of formal structures to enhance competence (14).

Need for better guidelines

International studies show that medication errors represent a considerable problem (15–18). However, we must question how effective current systems are in dealing with non-conformance, particularly in terms of whether error reporting systems and organisational measures promote learning and improvement (19). Research has revealed that there are conspicuous organisational barriers in the case of adverse events (16, 20). Interruptions when preparing medicines, a lack of knowledge and few opportunities to follow up the effects and side effects are factors that influence medication error (18, 20).

A survey of four American nursing homes on limiting medication error showed that the reporting systems were difficult to access. There was no information about medication error reporting forms and the follow-up of reported non-conformances was poor (21). Guidelines and standard procedures that could reduce incorrect use of medication often did not exist in nursing homes (22). An international study found that lack of time and training as well as a punitive culture were reasons for the failure of health personnel to report medication error. The study also showed that a culture of learning and fairness helped to increase reporting (17).

Patient safety in nursing homes

In order to analyse patient safety, we have employed Donabedian’s framework with its concepts of structure, process and result (23, 24). Procedures, guidelines and training are safety measures that are encompassed in the structural aspect of patient safety. According to Hjort (25), errors in the health service are mainly the result of systems errors such as time pressure, lack of guidelines, poor routines and the working environment. The systems approach entails analysing underlying causes and establishing systems that detect adverse events before they have serious consequences (26). Improvement based on learning from adverse events can be studied using Argyris and Schön’s concepts of single loop and double loop learning. While single loop learning involves adjusting behaviour within the same mind-set, double loop learning questions the basic perceptions underlying actions (27).

Good safety provided that the work on preparing medications is not interrupted.

Patient safety in terms of medication is an area that has not been adequately researched in Norwegian nursing homes. The purpose of this study is to shed light on how different safety measures function with regard to preventing medication errors. Safety measures are understood as interventions at the structural and processual level ensuring correct handling of medicines.

Method

The study has a qualitative design with focus group interviews as the main method of data collection. The focus group interview is a quick and non-resource-intensive method that can provide an insight into how nurses think and act to safeguard patient safety, and thus gives a deeper understanding of medication use in nursing homes. Using targeted group discussions, the participants can exchange perceptions and experiences (28). Individual learning logs are included as additional data. Learning logs are a tool used in programmes of professional study, and students use them to log their experiences of their clinical practice (29). 

We started collecting data by means of focus group interviews with nurses in 2012, the same year as the Coordination Reform was initiated. With the implementation of the reform, students, teachers and the field of practice paid considerable attention to challenges associated with handling medication. This was particularly the case in a teaching project at Sør-Trøndelag University College, in which third-year students assumed responsibility for a nursing home ward in order to undergo training in professional management and the transition process from student to nurse (13). According to Morgan (28), there should be a sufficiently large number of focus groups to provide adequate data to shed light on the research question. We acquired data on the Coordination Reform’s impact on medication in nursing homes over time by including the students who assumed responsibility for the nursing home ward in the data collected. We conducted therefore two focus group interviews with students in 2013 and 2014 in addition to collecting the learning logs. 

Sample

All informants received information in writing about voluntary participation, and we obtained written consent. The Norwegian Centre for Research Data approved the project. We obtained permission to conduct the study at two nursing homes. One was a large urban nursing home with over 100 places distributed among three large wards. The other was situated in a rural municipality and had approximately 60 places distributed among five small wards. The focus groups of nurses and a social educator were randomly made up of the staff on duty the day we carried out the interviews and who had the same formal competence in handling medication. We wanted to ensure that factors related to position levels did not affect the interaction (30).

Hereinafter, we will refer to the special educator as part of the group of nurses for reasons of anonymity. The seniority of the participants varied from 6 months to 24 years of practice. We carried out two focus group interviews at the large nursing home and one at the small nursing home, and two focus group interviews with students at the same nursing homes. The focus group material incorporates the experiences of 16 nurses and 13 student nurses. The learning logs also come from the same nursing homes in addition to a third nursing home that took part in the teaching project. Altogether 18 out of 69 learning logs included the handling of medication as a self-chosen topic.

Data collection

We compiled an interview guide using Donabedian’s triad as a theoretical framework, based on a previous hospital project (23, 31). The interview guide had three main themes:

• Risk factors and safety measures
• Cooperation with others
• Reactions to medication errors, risk perception and risk assessment

This article is limited to structural factors with special focus on safety measures (table 1). The article’s first and second authors conducted the interviews, which were recorded on tape and transcribed. 

Data analysis

A previous data collection conducted at a hospital in connection with a related topic of research used the same methods and a similar interview guide, and resulted in relevant data generation. In the nursing home project, some of the discussions were limited and were more akin to a group interview (30). When we compared the data, the nursing home interviews provided considerable information about structural factors, but less information about relational conditions and culture. The content of the learning logs varied. Some gave detailed information about the handling of medication while others contained more superficial descriptions.

In five focus groups, the participants discussed the same topic guided by questions in a semi-structured interview guide. In the analysis of the discussion, key topics largely paralleled the topics in the interview guide. The first and second authors reviewed and discussed the interview texts before analysing them using Kvale’s method of coding and categorising meaning (32). By coding pieces of text, the general topics of discussion emerged. Categorisation took place by further condensing the data material through unifying several codes under one topic (see table 2). Those interviewed are regarded as informants or witnesses who provide reliable information (32). The learning logs are treated as individual interview data. They were coded and categorised in the same way as the focus group interviews, and supplemented the data material.

Ethical reflections and discussion of methods

We complied with the Helsinki Declaration’s guidelines on anonymity and confidentiality. Since information about medication error may be sensitive, it was vital to be aware of ethical aspects in connection with the project (32). When researching patient safety, a conflict of interests may arise. On the one hand, confidentiality must be safeguarded and a relationship of trust with the interviewees upheld. On the other hand, it is incumbent on us to warn of any risk to patient safety or treatment that is not professionally sound (32, 33). The interviews did not give rise to any such ethical dilemmas.

Several nursing homes in the region were asked to participate but only two of them found it possible to allow several nurses to leave the ward at the same time to participate in an interview. This restricted the breadth of the data. The students who took part assumed responsibility for a nursing home ward for two weeks. They had the same functional area as the nurses, apart from the handling of drugs, which was always checked by a nurse. The students had less experience than the nurses but their strength was their critical external gaze and their attention to theory. When we read through the body of material, it emerged that the nurses and students had similar experiences. For this reason, the data analysis does not distinguish between the nurses’ and the students’ experiences. Both groups are defined as health personnel, and in light of the principle of responsible conduct, prior learning and work experience is decisive for what tasks they can perform in connection with the handling of medication (33).

Results

Experiences of how safety measures functioned with regard to medication management in nursing homes were divided into three main topics (table 2):

• Safety procedures
• Training and medication competence as safety measures
• Organisation of work and allocation of tasks

Incomplete safety procedures

Verification by two members of staff was a well-established safety procedure. Two nurses checked the selection or preparation of medicines. If only one nurse was on duty, a practitioner (for example, a care worker or a nursing assistant) could help to check. The medicines were placed in a pill dispenser one week in advance, and were most often distributed by a nursing assistant. Two nurses mixed the drugs used in the infusion pump, but only one changed the pump. The informants said that after a near-accident, the staff had discussed whether there should also be two present when changing the pump.

At one of the nursing homes, there was a computer-controlled medicine cabinet with inbuilt control of the withdrawal and selection of medication. Secure practice relied on there being no interruptions to the work on preparing the medication. It was pointed out that the cabinet was too cramped, it was difficult to get a full overview and it quickly became very untidy.

Time pressure and interruptions characterised work on managing medication. 

Written regulations on medication management were well implemented. However, according to the informants, there were many examples of non-compliance with the safety procedures. Due to time pressures, sometimes they skipped a step in the documentation routine. For example, they might forget to sign for the medicines administered, or they might sign for medicines that had not been handed out. A detailed example of a forgotten signing-off of a blood-thinning drug was described in a learning log. In the evenings or at the weekends, the dispensing of medicine often took place by telephone. Sometimes it took a long time to get the doctor’s signature, or it might be forgotten. A nurse also gave an example where a patient was given the wrong type of antibiotics because no information was noted about the patient’s allergy to this type of antibiotics.

A lack of case histories and non-conformance with procedures

The informants spoke of many episodes where case histories were lacking, or an outdated case history accompanied the patient when he/she was discharged from hospital. The last-mentioned incident was discovered when the nursing home ward received the new case history in the post some days later. If the nursing home asked the hospital about a missing case history, they might be told to use the list of medications, but as one nurse said, ‘That’s just a mess because it’s written by hand, so you don’t understand a thing.’ Such inaccuracies may result in deficient or incorrect treatment of patients. Nor did the nursing documentation and the case history always correspond. Considerable time was wasted in calling the hospital to try to obtain the case history or calling the doctor who had written it.

A topic addressed in several learning logs was non-conformance with procedures by failing to administer medicine at the correct time, or forgetting to do so at all. Nurses in several focus groups related that they were often too busy to write error reports. Time pressure and a shortage of nurses meant that they had to prioritise nursing tasks that involved giving immediate help. They also gave lower priority to writing error reports because they felt it was a waste of time. One nurse said ‘One summer I wrote all the error reports I possibly could (not only those related to medication) to map how much time I required to do this properly. Sometimes I was there one or two hours longer than the ordinary day shift on a completely voluntary basis and without being paid overtime for it.’

Another nurse claimed that only serious and obvious errors were documented. Even though it did not take long to describe the event, answering the point ‘Suggested improvements’ was time-consuming. The error reports were reviewed on a weekly basis in all nursing home wards but practice differed regarding feedback to the staff. 

Training and medication competence as safety measures

The informants said that they were constantly being introduced to new drugs, generic drugs and new ways of administering them. Even experienced doctors expressed the view that there was a huge number of new things. Two manufacturers might produce the same drug but under different names. A less experienced nurse could easily select the wrong drug. Although the chemist published lists of all generic drugs, nurses did not always have time to consult the list. In answer to questions about training related to new drugs, new methods of administration and observation of the effects and side effects, one group answered as follows:

‘I have never taken part in anything like that (training in new medications).’

‘In connection with the use of a new pain-relieving nasal spray, a nurse from the hospital came along to show us a smart way to hold it. We have to read up on the effects and side effects of medicines ourselves.’ Several of the others nodded in agreement, saying things like: 

‘… and we learn from each other…’

‘… so we read the package information leaflet …’

‘We have a duty to keep updated at all times.’

The informants stated that training in medication management was ‘ad hoc’ and poorly organised. The training consisted of information sheets, package information leaflets, the app of the Norwegian Pharmaceutical Products Compendium on private mobile phones, self-study and exchange of experience. No one had been offered any training by the pharmaceutical companies.

Work organisation and allocation of tasks

The organisation of work and allocation of tasks among health personnel in connection with handling medication was part of the safety measures. Patients were prescribed medication by various actors such as their GP, the nursing home physician and doctors from various hospital departments. At the nursing homes, there were doctor’s visits once a week (twice a week in some short stay wards) with a routine review of medicines. At one of the nursing homes, the doctors had a strong focus on unnecessary medication.

At the other nursing home, in contrast, both the nurses and the doctors paid less attention to polypharmacy. A group of student nurses discussed how easy it was to resort to laxatives and tranquillisers to save time instead of focusing on diet and activity. One student nurse wrote a detailed learning log about a patient who appeared to be considerably overmedicated with analgesics and psycho-pharmaceuticals. The patient was very overweight, and the side effects of several of the medications included drowsiness, an increased need for sleep and weight increase. The patient was hospitalised for reasons of mobilisation, but sat in the lounge and slept the whole day. The student attempted several times to take this up during the pre-visit consultation, but to no avail since it was said to be non-acute. Two more learning logs also dealt with patients who were overmedicated. 

There was a lack of systematic competence building. 

In the short stay wards, the patients on occasion administered their medicines themselves, often without having the necessary overview. One nurse said ‘They come along with a whole box filled with medicines that they’ve collected and saved up for several years. They ask if they have to use it, because no one has told them to stop.’ If attempts were made to gradually reduce their medication, family members might protest because they wanted active treatment for their loved ones. One of the nursing homes arranged scheduled meetings with family members twice a year, opening for a discussion of medication regimes.

In all nursing home wards, nurses usually prepared the medication, but they were often administered by a nursing assistant who had undergone a six to twelve-hour course of internal training. Each shift had few nurses on duty. Several of the interviews and learning logs provided examples showing that considerable time was spent on tidying, washing and serving food – tasks that do not require nursing competence. Many simultaneous, complicated nursing tasks gave the nurses little opportunity to work in a concentrated manner without interruption. At one of the nursing homes, medication selection was allocated to different days of the week in order to shield the nurses who handled medication. 

Discussion

This study has revealed that documentation as a safety procedure was a risk factor because it was unreliable. Weaknesses in patient record systems have previously been documented at 56 Norwegian nursing homes (8). Another study shows that errors in medication information was one of the most common adverse events when patients are transferred between different levels of the health service (34). Nor do error reports function satisfactorily as safety measures. The nursing homes employ error reports, double-checking and documentation when there is enough time, but the participants described many situations when time pressure made it impossible to follow safety procedures. This finding concurs with international research (17, 21, 22) and shows that there is a long way to go to fulfil the principles of double loop learning (27). This study is also in line with Lipsky (35), who as early as 1980 described how ‘street-level bureaucrats’ were forced ‘to take short cuts’ in situations with difficult priorities.

Descriptions of inaccurate documentation and a lack of error reports recurred during the data collection period of almost three years. This indicates a failure to improve safety measures, which in turn indicates poor follow-up of internal control (5). The responsible manager has the formal responsibility for medication management and risk assessment (36). A 2015 survey also described time pressure as the reason that the writing of error reports was not given priority, and that error reporting systems seldom resulted in improvements (37). This is a grave situation since the Coordination Reform entails greater and more complex medication being administered by the primary health service (3, 9).

If safety procedures that cannot be realised in practice are retained, this can undermine staff’s understanding of the importance of routines for patient safety. Exact documentation of prescribed drugs is essential to prevent medication errors. Since substantial resources are used both for documentation and error reports, we need further research to evaluate the use of resources in order to improve patient safety in the nursing home.

Must build up competence systematically

Our study showed that time pressure and interruptions characterised work on medication management, while at the same time considerable time was spent on tasks that did not require nursing skills. Other surveys and studies also point this out (10, 18, 38), which can be interpreted as indicating that training and the development of medication competence is not being taken sufficiently seriously. Brenden et al. showed that updating knowledge in nursing homes was carried out informally with a lack of formal management strategies to map competence and competence enhancement (14). This finding confirms that there is a lack of systematic competence building. The attending doctor is responsible for medication management but is reliant on nurses’ reports on observations of the effects and side effects. Such reports require that the nurses have time to write them and professional knowledge (7).

The study presents examples in which student nurses point to procedural errors and overmedication. This indicates that the nurses have competence that can be exploited in improving the medication regime in nursing homes, so that competence building can be in line with the principles of double loop learning (27). Further research is necessary to examine why nurses give less priority to safety measures that can improve patient safety, and instead are carrying out tasks with considerably lower risk and need for competence such as serving food, tidying and cleaning.  

Professional identity must be enhanced and the nurse’s role shielded from tasks that do not require nursing skills.

The Coordination Reform entails that the municipality has a much greater degree of responsibility for treatment and no longer merely has responsibility for nursing and care. This change increases the need to build up medication competence systematically. When new health reforms are introduced, there is little assessment of what the consequence will be for patient safety (39). Our study indicated that an overly high risk is associated with medication management in nursing homes. Nurses are present twenty-four hours a day in nursing home wards and represent a professional group with formal medication competence.

This study has shed light on the great need that nurses and student nurses have for medication competence, but implies that there must be realistic framework conditions to apply and develop such competence. In addition, the study shows that patients possibly need training. A high rate of polypharmacy has been revealed as being an underlying cause of falls in connection with patients hospitalised in the specialist health service (40). If patients and their family members have better information and knowledge about drugs, this can reduce unnecessary medication use.  

Implications for education and practice

The education of nurses must emphasise organisational competence in order to increase understanding of the correlation between safety measures and patient safety (24–26, 41). Professional identity must be boosted, and the role of the nurse shielded from tasks that do not require nursing competence (6). Internal control in nursing homes must be improved. Nursing home management must pay more attention to risk in connection with medication use and make provision for systematic training and development of medication competence, which must take place in relation to double loop learning, including reflection and time to assess underlying causes (27). Management must also facilitate training for patients and family members.

The survey is based on experiences from a limited number of nursing home wards, and must be interpreted with care to avoid generalisation. However, the results correlate well with Norwegian and international studies on patient safety, medication use and competence needs in nursing homes (6, 8, 11, 15, 16, 18, 20–22).

Conclusion

The results of this study describe safety procedures that are not always feasible or reliable in practice. The training was deficient and there was poor correlation between medication competence, work tasks and staffing.

The Coordination Reform has resulted in greater and more complex medication use in nursing homes, increasing the need for a systematic enhancement of medication competence. The results of this study concur with several similar studies and therefore raise the question of why nursing competence is not better utilised to ensure patient safety. Considerable resources are used on structural measures such as documentation and error reports without this having the optimal impact. Further research should be carried out on how increased nursing staff levels and the development of medication competence can improve patient safety in nursing homes. 

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The clinical picture in Norway like other European countries is characterised by non-infectious diseases and long-term health challenges, for example cardiovascular disease, type 2 diabetes, overweight or obesity, chronic obstructive pulmonary disease (COPD) and cancer (1). The increase in the number of people living with such challenges is due to medical progress, new lifestyle habits and longer life expectancy. Patients with chronic illnesses, service users and next of kin must learn to cope with health problems, symptoms and treatment in their everyday lives. These challenges cannot be solved by therapy, short hospital stays and outpatient contact with the specialist health service.

Self-management programmes have a different goal than treatment in that they are intended to boost the self-management abilities of the individual patient or next of kin. Norwegian health authorities stress that self-management programmes in both the specialist and municipal health services are of decisive importance in learning to cope with long-term health problems (2). Here self-management programmes are understood as programmes or initiatives that provide support and guidance in order to strengthen the individual’s ability to live with long-term health challenges (3). In this systematic review, we focus on group-based programmes in which user involvement is integrated.

A number of international literature reviews systematise research on the impact of self-management programmes in respect of biological, psychological and behavioural outcome goals (4, 5). In Norway, the Knowledge Centre for the Health Service has published literature overviews and reviews of available research. The overviews show that the quality of the studies of group-based self-management programmes and initiatives with user involvement varies, but that nevertheless such programmes and initiatives may have positive impacts (3, 6, 7).

As yet, there is little research documenting what kind of competence is important to boost self-management, and in what way.

Self-management programmes require health education competence (8–10). In Norway, self-management centres in the specialist health service support health education training programmes for health professionals and service user representatives who offer such services (11). However, health education is a relatively new discipline, and as yet, there is little research documenting what kind of competence is important in boosting self-management, and in what way. In contrast to research in the nursing, medicine and psychology professions (12–14), there is a lack of studies on the practitioner’s impact on self-management programmes, i.e. studies of the role the personal qualities of health professionals play in determining the outcome of such programmes. There are also few studies of the health professionals’ key competencies (9, 15).

Purpose

To establish what competence health personnel should possess in order to boost self-management among users, we have therefore conducted a systematic review of the research literature. Here we present research literature referring to the competence health personnel must have to be able to provide good group-based self-management programmes.

Method

A key aim of this study is to acquire an overview of what kind of studies can be found on the topic. Since research on this is limited and little reported, we chose to include both quantitative and qualitative studies. In order to be included, the studies had to discuss the importance of the health professions’ competence in respect of implementation of group-based self-management programmes where service user involvement is an important element. These were international articles written in English and with a study population in age group 18+.

We also included systematic literature reviews. In cooperation with a research librarian, we have conducted systematic literature searches in the databases Medline (Ovid), Embase (Ovid), PsychInfo (Ovid) and Cinahl (Ebsco) in the period from 1 January 2005 to 1 February 2015. We carried out the searches using the following key words in different combinations: chronic illness, patient education, professional competence, patient experience or satisfaction, group processes and patient participation.

The first author carried out a preliminary sorting of titles and abstracts. Then the first author and co-author conducted a new and independent review of 103 titles and abstracts in accordance with the inclusion and exclusion criteria. We solved any disagreements through discussion. After that, the first author obtained full text versions of 80 studies. Altogether 63 studies were excluded, mainly because they did not specify competence as a topic. The first author then derived the following data from the 17 studies that were provisionally included: author, aim, design, sample and competence.

Subsequently the authors independently assessed the quality of the studies included. Based on the handbook of Kunnskapssenteret [Knowledge Centre for the Health Service] (16), the studies were assessed against checklists specific to studies with different designs. Altogether 16 studies satisfied the inclusion and quality criteria and were included in the review (Figure 1).

The research literature incorporates a variety of concepts and different understandings of professional competence and knowledge (17). This systematic review is based on a broad understanding of the concept of competence, including theoretical knowledge, vocational skills and attitudes as well as personal competence (18). By personal competence, we mean attitudes, values, experiences and manners that characterise the individual, for example the ability to establish relationships, to be mindfully attentive and to show empathy (18). This broad understanding is stressed in health and social education and professional work practice, as well as in literature on instructing patients and next of kin, and self-management (19, 20).

A quantitative and qualitative content analysis of the studies’ descriptions of competence was conducted (21). This entailed recording and enumerating the competencies that the studies explicitly describe. It also involved a process of coding whereby we noted, categorised and systematised the semantic content of sentences and paragraphs that more indirectly describe competence, in overarching categories. We have chosen to present the results of the literature review based on key topics derived from this content analysis. The analysis indicates what forms of competence are highlighted in the literature, cutting across study design and research question. To provide a clearer and uniform presentation, we have grouped the studies by study design in addition to author, purpose, sample, competence and quality assessment (Table 1).

Result

Most studies included deal with the perceptions held by health professionals (15, 22–27) and patients (28–34) of key competencies in health professionals offering self-management programmes. One study deals with both groups (33). The studies of patient perceptions refer to a total of 398 patients. The patients have type 2-diabetes (34), chronic pain (25, 28), cancer (31), COPD (29, 33), irritable bowel syndrome (32) and hypertension (30). Altogether 252 healthcare professionals are mentioned in the studies on how competence is perceived. The professions most often described in these studies are doctors, nurses, physiotherapists, ergonomists and nutritionists.

The majority of the studies are qualitative empirical studies (22–28, 31–34). One study is a systematic review of qualitative studies (29), and three have a mixed method-design (15, 30, 36). Using quantitative data, two studies examine the impact of health education training programmes on the acquisition of knowledge, skills and attitudes by those who are planning to provide instruction, and self-management programmes (35, 36). The 16 studies included shed light on competence from different angles. The research issues in the studies did not all focus on competence as a topic, but included it when presenting the results of the study. 

Competence areas

The content analysis of the 16 studies show that there are six competence areas that are considered to be of key importance for health professionals. These areas are highlighted across the various study designs and research issues. The six competence areas are as follows:

• Group management
• Medical expertise on diagnosis and treatment
• Communication
• Coping and coping strategies
• Education
• Personal qualities and attitudes

Group management

Altogether twelve out of the 16 studies stress the importance of being able to manage groups of patients and service users in order to make adequate provision for self-management (15, 22, 24, 25, 27–34, 36). For the most part the studies describe two dimensions of group management. The first concerns the ability of health professionals to create safe and supportive environments for group participants in self-management programmes. One example is encouraging participation and making patients feel welcome, recognised and heard (15, 24).

The second dimension applies to health professionals’ ability to inspire active group participation, learning and exchange of experience using various tools and methods. For example, this might include questions and comments that encourage the individual and the group as a whole to share thoughts and feelings linked to their own life situation. Several studies of patient experiences confirm the importance of active group discussions. A diabetes patient said: ‘Being able to hear how they [other diabetes patients] experience their disease, the tricks and solutions they have for food and exercise, it is so important’ (34). Meanwhile several studies point out that health professionals find that they lack competence in managing this type of group processes in a proficient manner.

Professional expertise

Eight studies underlined that it is vital that health professionals have professional medical knowledge. They must also be updated regarding research and knowledge of specific diagnoses, treatment and self-treatment for people with long-term health challenges (15, 24–27, 29, 31, 32, 35). The main reason given in the studies for claiming that professional knowledge plays an important role is that patients, service users and next of kin should be able to acquire basic knowledge about their own illness. One nurse describes it as follows: ‘Of course the patients need medical knowledge. Knowledge they can hopefully use as a driver in the process of getting a healthier lifestyle’ (24). At the same time, several health professionals in the studies report challenges adapting the language they use and the professional knowledge level they communicate to a variety of patient groups with different backgrounds and needs. 

Knowledge about communication

Eight studies mentioned knowledge and skills in communication as an important area of competence (15, 23, 26, 30, 32, 33, 35, 36). The studies describe general communication skills that are often employed in interaction between health workers and patients, such as active listening and speaking in an understandable manner. In addition, they describe skills that are more closely linked to initiating, directing and concluding group discussions among patients or service users. Examples of this can be how to communicate verbally to create a secure atmosphere and safe surroundings, how to enable people to reflect on and discuss habits and thought patterns, and how to handle negative group dynamics. In this respect, there is a close association between knowledge and skills in communication and group management.

Knowledge of coping resources

Eight studies refer to knowledge of coping and coping processes as of key importance in ensuring that patients and service users benefit from participating in self-management programmes (15, 23, 25, 30, 31, 35, 36). The studies discuss the benefits arising from health professionals’ and course leaders’ dissemination of practical knowledge about coping, coping strategies, and how to solve every-day practical challenges. In addition, they point to the importance of course leaders being able to apply methods and techniques that initiate and support changes in mind-set and behaviour patterns among patients and service users. Examples are building and acknowledging group participants’ own coping resources, or creating reflection and discussion among the participants. One cancer patient commented on how important this was: ‘I don’t think the outcome would have been the same if we had just sat and talked with each other [without nurses] … That would have been more of a self-pitying group’ (31).

Educational competence

Six of the studies point out that educational competence and skills are a basic area of competence for health professionals who offer self-management programmes (15, 24, 26, 35–37). The studies emphasise two main dimensions of such knowledge and skills. Firstly, we need knowledge about learning as a phenomenon and about how to apply theoretical knowledge in self-management programmes. We also need to know how to adapt and adjust teaching or learning activities to the knowledge and teaching needs of the participants. Moreover, several stress that it is necessary to have basic practical knowledge and skills in planning, organising, implementing and evaluating courses and programmes for patients and service users.

Personal qualities and attitudes

Patients, health professionals and researchers indicate that the personal qualities, attitudes and values of health personnel are important for how patients and service users perceive participation in self-management programmes, whether in a positive or negative light. This is discussed by two studies (26, 35). The patients in these studies describe such qualities as prerequisites for the way health personnel act and meet them. Patients and users stress health personnel’s ability to show care, empathy, interest, and respect and to exhibit non-judgmental attitudes towards people with long-term health challenges. These qualities are described as important for several reasons. They have a positive influence on the relations established between the health worker and the patient, patients’ motivation to take part in such programmes and their feeling of receiving support and understanding in terms of their health-related challenges. 

Discussion

Educational institutions, health professionals, service user representatives and patients have long emphasised that competence and the personal qualities of health professionals who provide self-management programmes are of prime importance for the quality of such programmes (39). Nevertheless, it has been unclear what competence is most relevant in facilitating the best possible outcome from participation in such a programme.

Based on systematic searches of the literature, in this review we have described the literature available in respect of the competence deemed most important for health professionals who provide self-management programmes to patients and service users with long-term health challenges. In the literature, the health professionals, the patients and service users all stress that certain features are decisive for a positive outcome from training and self-management programmes. The quality deemed most essential in health professionals is the ability to manage and contribute to good group processes. Moreover, it is vital to have professional and updated medical knowledge about diagnoses and treatment, communication skills, coping skills and educational skills. Personal qualities and attitudes are also important (see fact box).

The results naturally reflect nursing, medical and psychological literature on patient–therapist communication but also reveal knowledge that is easy to overlook. A good example is research in psychotherapy and therapeutic methods. Several decades of research have shown that differences between the personal qualities of therapists are more important for the outcome in terms of the mental health of clients or patients than differences between the methods therapists use (12–14). Research with and without an experimental design supports this. This problem was long disregarded by a professional field dominated by impact studies, and which largely concealed underlying variables (14).

The quality deemed most essential in health professionals is the ability to manage and contribute to good group processes.

However, there is a lack of studies on the significance of health professionals’ personal qualities for the outcome of participation in self-management programmes (user impacts). Moreover, studies that indirectly thematise the practitioner impact factor by examining health professionals’ key competencies have not attracted much attention (9). In this systematic review, we found 16 studies that satisfied the inclusion criteria and described different areas of competence. Some of these did not focus on competence as a research question but instead raised the topic when discussing the results. The review further shows that most are qualitative studies. One limitation of these is that the findings cannot be generalised to other populations. The authors of the articles also discuss this. 

Moreover, most of the studies we have described were based on qualitative interviews. Such data are little suited to elucidating how knowledge, skills and attitudes are specifically put into practice by those providing self-management programmes. Nor do the data give any information about how various types of competence are combined and integrated in the individual programmes, and what impact competence has on the different outcome goals (26). There is a need for more ethnographic studies and impact studies with an experimental design to shed light on these questions. Moreover, most of the studies we assessed were of moderate quality. We assessed twelve of the 16 studies as being of moderate quality, three studies were of high quality, and one was of poor quality. The Knowledge Centre for the Health Service defines ‘moderate quality’ as meaning that there is little likelihood that the conclusion of the study is affected by deficiencies in the study, but that we must nevertheless be cautious about drawing clear conclusions.

Implications

The results of this study describe key competence areas for health professionals who provide self-management programmes. To our knowledge, no systematic search of such literature has previously been undertaken.

However, the literature review shows that more research on the topic is needed. We need more types of qualitative studies in order to increase understanding of how competence areas relate to each other and are linked in specific self-management programmes. In addition, quantitative studies are required in order to understand how the competence of health professionals affects different patient outcomes. We also need to undertake studies of important knowledge, skills and attitudes in service user representatives, who are often co-providers of self-management programmes. Such studies are necessary to enhance the relevance of the research in a Norwegian context. The competence of service user representatives will overlap that of health professionals in some areas, especially regarding the skills necessary for good cooperation with patients and service users (39).

The studies included also show that health professionals are uncertain about their own competence.

A better insight into the competence areas required in training and self-management programmes can provide key input to those responsible for courses in health education for professionals in the specialist health service and the municipal health and care services. This would also give vital input to the health professionals and service user representatives who offer self-management programmes for patients and service users (26).

The studies included also show that health professionals are uncertain about their own competence (15, 24). Several therefore underline the importance of improving health education programmes. The purpose of such programmes is to provide health professionals and service user representatives offering self-management programmes with knowledge of how to make provision for self-management in patients, service users and next of kin (39).

Methodological criticism

The self-management programmes on which the studies are based are offered by health professionals. Thus the studies do not necessarily describe competence linked to making provision for real service user involvement, or for cooperation with service user representatives in the planning, implementation and evaluation of measures or initiatives. In a Norwegian context, this cooperation model constitutes a key framework for self-management programmes (39).

In addition, the studies describe a fairly limited number of diagnosis groups. It is reasonable to assume that the competence required will vary among different initiatives and diagnosis groups (26). The studies are based on various types of self-management programmes for different diagnosis groups, and elucidate the question of competence from various angles. Nevertheless, to a considerable degree they highlight the same competence areas.

One of the advantages of a systematic literature study is that it applies a systematic, and accurately described procedure to identify and give an overview of relevant research. A weakness of the studies we have summarised is that most are qualitative studies with a limited number of patients and diagnoses. Furthermore, they vary in quality. Nor do all the studies examine competence as their primary research objective. An important goal in this systematic review has, however, been to gain an overview of what kind of studies do exist within this area of scant research.

The review also shows that a number of joint competence areas are highlighted across study design, diagnosis groups and interventions, indicating that the areas described may constitute the basic components of health education competence. A weakness of the literature review is that only one person – the first author – reviewed and excluded potentially relevant articles in full text in addition to extracting information from the 17 studies that were included at the start. Since the selection process and the procurement of data were not conducted by at least two persons independently of each other, the likelihood of bias increases. This may therefore have impacted on the interpretation of the results. 

Conclusion

Our literature review indicates that health personnel need knowledge and skills in group management, diagnoses, coping skills and education as well as appropriate personal qualities and attitudes in order to provide good group-based self-management programmes. There are relatively few studies of the competence held by health professionals who provide training and self-management programmes, and there has been a lack of systematic literature reviews. Our study should therefore make this knowledge more accessible.

Nonetheless, the results should be applied with caution. Most of the studies discussed are of moderate quality, which indicates that it is not very likely that the conclusions of the studies have been affected by their deficiencies. However, we must be cautious about drawing clear conclusions. We need a greater number of high-quality studies of the topic with a larger sample and with an experimental design. We also need to boost the quality of health education training measures and the education of students, health professionals and service user representatives.

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Research shows that intensive care patients frequently suffer from undertreatment of pain (1–5). Undertreatment of pain can have serious physical and psychological consequences (6–8). The golden standard for pain assessment is the patient’s own description of pain (9, 10). However, the intensive care patient’s impaired ability to communicate entails that the patient may experience pain without being able to express it in a way that health care personnel comprehend (4, 7, 11). Patients’ inability to self-report pain hinders effective pain management.

Systematic pain assessment with valid tools has proven essential to good pain treatment and may be used as a quality indicator of clinical practice (12, 13). There are several tools for assessing pain in adult intensive care patients, but according to international clinical guidelines (14), The Behavior Pain Scale (BPS) (15) and The Critical-Care Pain Observational Tool (CPOT) (16, 17) have the highest validity and reliability. Rijkenberg et al. compared the CPOT and the BPS and concluded with a preference for the CPOT, due to better discriminant validity, meaning the tool measures pain better when the intensive care patient is assumed to have pain (19). 

In the international clinical guidelines, Barr et al. refer to the testing of the two tools’ psychometric characteristics (measurement characteristics, user friendliness, the tool’s validity and reliability, etc.). The CPOT appeared to be somewhat better, but both the CPOT and the BPS are equally recommended (14). The guidelines recommend that the CPOT and the BPS be translated and validated into more languages (14). The BPS is translated into Norwegian and tested for reliability by Olsen and Rustøen (18). Translating the CPOT into Norwegian and testing it for validity and reliability will thus be an advantage. The aim of the study was to translate and investigate the validity and reliability of the Norwegian version of the CPOT in a general intensive care unit.

Method

The study had a descriptive quantitative design. The pain assessment tool CPOT was translated into Norwegian and examined for discriminant validity and interrater reliability. Discriminant validity refers to whether the CPOT measures pain when pain is present and does not measure pain when pain is not present. Interrater reliability measures the degree of agreement between two intensive care nurses’ CPOT scores.

Study setting and sample

The study was performed in a general intensive care unit at a Norwegian university hospital from April to September 2014. The majority of the unit’s patients were mechanically ventilated, received continuous analgesia (pain medication) and sedation (tranquilisers/sleep medication), and had impaired ability to communicate. Of a total 100 nurses in the unit, 95 were intensive care nurses.

The nurses daily assess the intensive care unit patients’ level of consciousness using the Richmond Agitation and Sedation Scale (RASS) (14, 20). The RASS measures agitation and sedation level, the score ranging from +4 to –5, where a score of 0 indicates an awake and adequate patient. Scores from –1 to –5 indicate an increasingly sedated patient, and scores from +1 to +4 indicate an increasingly irritable and agitated patient.

The inclusion criteria for the patients in the study were a stay in the intensive care unit of >24 hours, ≥18 years, and being mechanically ventilated. Patients given muscle relaxants were excluded from the study. Muscle relaxants effectively stop all grimacing and peripheral muscle movements, and the CPOT cannot be used in pain assessments of patients when such medication is administered. One of the authors and one intensive care nurse not directly involved in patient care included patients as they were admitted to the unit. A total of 18 patients were included in the study: seven men and eleven women aged 31–84 years, with a median age of 51 years. The patients were divided into three diagnosis categories:

• thoracic surgical and cardiovascular patients
• gastrosurgical and gastromedical patients
• neurosurgical and neurological patients

The inclusion criteria for the nurses were being experienced intensive care nurses with a minimum of five years seniority, who had worked some shifts together, and were willing to participate in the study. The six nurses consenting to participation had between five and 23 years of experience as intensive care nurses, with a median of 16 years. The nurses, in pairs, performed 91 CPOT scorings of the 18 included patients.

Translation of the CPOT

The English original version of the CPOT (16) and accompanying instructions were translated into Norwegian in accordance with an internationally recommended translation process, in which both cultural and linguistic adaptations are emphasised (22). The translation process contains ten steps: preparation, forward translation, reconciliation, back translation, review, harmonization, cognitive debriefing, review of cognitive debriefing results and finalisation, proofreading and final report.

Patients unable to self-report pain constitute a challenge to effective pain relief.

In step one, preparation, the CPOT copyright holder, Céline Gélinas, gave written permission for a Norwegian translation on certain conditions. The translation should build on the English original version, and source and references should be included in all CPOT documents. Two intensive care nurses with good knowledge of Norwegian and English, and one of the authors, translated the CPOT independently. After several adaptations they agreed on a translation. A professional translator back translated the Norwegian version into English. This version of the CPOT was reviewed by the three initial translators and sent to Gélinas, who approved the version without comments.

We compared the English translation with the Norwegian version to ensure that the translation harmonized with the original text, i.e. had the same content as the original tool. Five experienced intensive care nurses unfamiliar with the CPOT tested the Norwegian version. The feedback was that it was understandable and practicable in use, and consequently, we did not change anything after the review. The final version of the CPOT was proofread several times by persons with good knowledge of Norwegian. Each step of the process was described in a table that constituted the final report for the translation work.

The Critical-Care Pain Observation Tool (CPOT)

The pain assessment tool, CPOT is based on four domains: the patient’s facial expressions, body movements, compliance with ventilator (or voice use for non-intubated patients), and muscle tension (16). Each domain has a possible score of 0 to 2. The total score can vary between 0 and 8, where 0 indicates no pain behaviour and 8 indicates clear signs of pain behaviour (Figure 1).

The intensive care nurses were given a one-hour training session in the use of the CPOT. The training included a thorough presentation of the tool, how to score the behavioural components in CPOT, and how to fill in the registration form. The training session also included a practical exercise in which the nurses scored CPOT based on four “patient situations”, presented in an instruction video. 

Data collection

The six intensive care nurses assessed, in pairs and simultaneously, the pain expression of a patient during a turning procedure. We chose the procedure of turning the patient as this constitutes a painful procedure for intensive care patients (2). The patient was first observed for one minute at rest in accordance with the written instructions. The nurses next observed the patient being turned. Each nurse filled in the CPOT form independently, giving the patient a score for each of the four behavioural domains both at rest and during turning (16).

We used the nurses’ CPOT score to analyse differences between the score at rest and during turning (discriminant validity), and to analyse agreement between the scores of the nurse pairs (interrater reliability).

The six intensive care nurses performed a total of 182 CPOT scorings (91 paired scores) for the 18 patients included. Each patient was scored with the CPOT between one and 17 times with a median of three, dependent on length of stay in the intensive care unit. The six nurses scored between eight and 55 times with a median of 29. To reduce the possibility of the nurses becoming familiar with the patient’s pain behaviour, a patient was never scored more than four times by the same pair of nurses.

The nurses documented the patients’ RASS level at each CPOT scoring in order to assess the included patients’ level of sedation. The majority of the patients had a RASS score indicating that they were moderately to deeply sedated, with a median RASS score of –3 (+1 to –5). 

Analysis

Data were analysed using the statistics programmes IBM Statistical Package for the Social Sciences (SPSS) version 18 and the computer programme Vassar Stats (23). We used similar analysis as in earlier studies in order to compare the results (16, 24, 25). The CPOT can be regarded as having both categorical and continuous data, which is significant for the choice of analysis method (26). We used the median for categorical data at the ordinal level, while estimating mean values for continuous data (27).

Discriminant validity for the CPOT was analysed for differences in CPOT scores at rest and during turning within all domains: facial expressions, body movements, compliance with ventilator, and muscle tension. These categorical data were analysed at the ordinal level with Wilcoxon signed-rank test. To estimate discriminant validity of continuous data at the interval level, we compared the mean total score at rest with mean total score during turning by using paired t-test. For both analyses, the level of significance was set at p >0.05.

Two different methods of analysis were used to measure interrater reliability (IRR) for the CPOT: weighted kappa for categorical data and intraclass correlation coefficient (ICC) for continuous data. Nurses assessing the same patient with equal CPOT scores yielded a perfect IRR. Weighted kappa values at 0.81–1.0 indicate excellent agreement, 0.61–0.80 good agreement, 0.41–0.60 moderate agreement, 0.21–0.40 slight agreement and £0.21 poor agreement (28). ICC greater than 0.75 indicates fair agreement, 0.50­­–0.75 moderate agreement, and <0.5 poor agreement (29). For both ICC and weighted kappa 1.0 indicates perfect agreement, while 0 indicates no agreement.

Ethical considerations

We have followed the ethical guidelines of the Declaration of Helsinki (30). We deemed the study subject to approval by the Regional Committees for Medical and Health Research Ethics (REC), as we wished to register patient data and assess patients’ pain experiences using a new pain assessment tool. The study was approved by REC (2014/464), and we gained permission from the unit leader at the unit in question to perform the study. The majority of the included intensive care patients lacked competence to consent as a result of their health condition. The patients’ families were thus informed and asked to consent, orally and in writing. In one case the patient consented following oral and written information. The six intensive care nurses were also informed, asked to participate, and gave their written 

Results

First we present the results of discriminant validity and next, the results of interrater reliability of the CPOT. Discriminant validity was investigated by comparing the nurses’ CPOT scores at rest with the CPOT scores during turning. Table 1 shows mean values, standard deviation and the results of the Wilcoxon signed rank test analysis at the domain level. There were statistically significant differences in the scores between rest and turning within facial expression, compliance with the ventilator, and muscle tension, but not within the domain body movement.

The mean value of the CPOT total score was 0.35 (SD 0.95) at rest and 1.50 (SD 1.20) during turning. There was a statistically significant difference between rest and turning (paired t-test = 7.945, d.f. = 90 and p value <0.001). The difference indicates that the CPOT measures pain when pain is present.

The CPOT interrater reliability was investigated by analysing agreement between scores at rest and during turning for each pair of nurses for each domain. The data were analysed with weighted kappa. The results showed that weighted kappa varied from 0.41 to 0.82, i.e. from moderate to excellent agreement (Table 2).

Agreement for the CPOT total mean score was analysed with intraclass correlation coefficient (ICC). The result showed good agreement at rest with an ICC at 0.80 and confidence interval (CI) of 0.71–0.86, and moderate agreement during turning with an ICC at 0.68 and CI of 0.54–0.77.

Discussion

The result of the study showed a significant difference between total CPOT mean score at rest and during turning. This difference indicates that the CPOT measures pain when pain is present. The result indicates that the Norwegian version of the CPOT has good discriminant validity, which corresponds with results from previous studies (16, 24, 25, 31, 32). Furthermore, the analysis of CPOT scores within each domain at rest and during turning showed significant differences within all domains, with the exception of the domain body movement. This exception may be explained by that patients in this study were relatively deeply sedated; they were given both analgesics and sedatives and were not very mobile.

Facial expression seems to be the most important domain for identifying pain, and also the domain with the lowest reliability.

The analysis of ICC, used to measure interrater reliability, showed excellent agreement between the nurses’ total CPOT mean score at rest and moderate agreement during turning. The results are in accordance with results from similar studies (31, 33). That the agreement between the nurses’ scores was better at rest than during turning, may, in our study, be explained by the patients being sedated. The most frequent CPOT score at rest was 0, while there was more variation in the patient’s pain behaviour during turning, which caused greater variation in the CPOT score.

Another explanation for the moderate agreement may be the variation that arises when as many as six nurses assessed the patients. This may reflect reality better than studies that show somewhat better agreement but have only two nurses performing all the assessments (16, 24). Stilma et al. report a lower agreement than our study (34). She explained the results partly by that many nurses performed the assessments, but she also pointed to the transferability of an intensive care practice that represents reality.

Assessment training useful

Polit and Beck claim that the most efficient way to increase reliability in this kind of study is to train the participants that perform the assessments (21). This is in line with recommendations from similar studies that emphasise that training the nurses is crucial to the tool’s reliability and validity in practice (25, 33). The six nurses in the study had identical training in the use of the tool. In connection with the instruction video the nurses were able to score patient situations and have a discussion in order to arrive at a common understanding of the various domains. More practice in scoring the tool and a better common understanding may have resulted in improved agreement in the scores also during turning.

We have not found any earlier comparable studies that have investigated agreement (interrater reliability) between the nurses’ CPOT score in each domain (16, 24, 25, 31, 32). The analysis of weighted kappa at domain level showed moderate to excellent agreement. Facial expression was the domain with the lowest agreement level between the nurses’ score at rest, with weighted kappa value of 0.41. A possible explanation is that the three response alternatives for facial expressions may be hard to distinguish. In the instructions accompanying the CPOT scale, “tense” (CPOT score 1) and “grimacing” (CPOT score 2) are accompanied by descriptions that may be hard to reach a common understanding on. 

Facial expression most important for assessment of pain

Another study investigated interrater reliability at the domain level of the Behavioral Pain Scale (BPS) (18). Also in this study, facial expression showed the lowest agreement at rest as well as during turning. All known pain scales based on behaviour include facial expression as one of the domains, and the patient’s facial expression is considered the most important component (35). Rahu and colleagues claim that facial expression may be a valid alternative to self-report of pain in intensive care patients (36).

Facial expression seems to be the most important domain for identifying pain, at the same time as it is the domain with the lowest reliability. Gélinas, Arbor and Keane have all questioned whether the domain facial expression in the CPOT should be developed to be more sensitive to minimize the risk for underestimating the patient’s pain (25, 35). The need for further development of the domain facial expression is supported by the results from this study. The domain muscle tension showed excellent agreement with a weighted kappa of 0.82. An explanation for this may be that the domain muscle tension in the CPOT has a brief description, and that the patient’s muscular resistance in passive movements is relatively easy to notice when turning a patient.

The intensive care nurse should always have in mind that pain is frequently present in intensive care patients.

In most of the CPOT assessments the patients were estimated with low scores with a total CPOT mean score of 0.35 at rest and 1.5 during turning. The low CPOT scores may be explained by the patients generally being sedated to a sedation level that entails movement in response to being addressed, but without establishing eye contact (RASS = –3). Gélinas and Arbor suggested that sedated patients have a significantly lower CPOT score both at rest and during procedures compared to conscious patients (35). In earlier studies with more awake patients, the CPOT has proved to be more in line with the patient’s self-reported pain with a total CPOT mean score between 2 to 3 (31, 32, 33).

Study limitations

One limitation of the study is that the criterion validity, i.e. a comparison of the nurse’s CPOT score and the patient’s own assessment of pain, was not investigated. However, very few patients were able to use Numeric Rating Scale (NRS), and as a result we decided not to investigate the criterion validity in this study. The decision was also justified by referring to the studies by Keane and Nürnberg Damström et al., in which only a few patients were able to communicate their pain, and consequently the criteria validity could not be evaluated properly due to insufficient data collection (24, 25). In other studies with more awake patients the CPOT has turned out to have high criterion validity in relation to the patients’ self-report of pain (16, 37).

Another limitation of the study was the repeated assessment of the patients due to the limited number of patients included. However, the patient’s sedation level may have varied at the various incidences of assessment and thereby have created a natural variation in pain and pain behaviour in the same patient. The choice to assess patients several times may also be defended with that the nurses’ scores are the basis for the analysis. A further limitation of the study is that it is performed in only one intensive care unit, and that all assessments were performed by intensive care nurses. The generalizability of the study may be limited as many intensive care units have other patient categories and fewer intensive care nurses.

Conclusion

The Norwegian version of the CPOT seems to be a valid and reliable pain assessment tool for mechanically ventilated intensive care patients. The CPOT can be implemented in intensive care units to systematically assess, document and evaluate intensive care patients’ pain. Through several studies the CPOT proves to be a well validated and reliability tested tool. Nevertheless there is a need for further research on the Norwegian version of CPOT on other groups of intensive care patients. Further research should also be directed towards investigating whether the four domains in CPOT may be made more sensitive to pain particularly concerning the domain facial expression.

The intensive care nurse should be aware of the frequent presence of pain in the intensive care patient, especially in connection with procedures. A low score on pain behaviour in a deeply sedated patient does not necessarily indicate that the patient is not in pain (38, 39). If CPOT could give an indication of whether an intensive care patient has pain or not, the tool contributes to increasing the quality of the patient treatment, despite its limitations.

Thanks to the management and colleagues at General intensive care unit 1, Rikshospitalet, Oslo University Hospital (RH OUS), who made it possible to carry out this study.

We also want to thank Helene Berntzen, intensive care nurse and PhD student at the Postoperative and intensive care unit, OUS, and Hilde Wøien, intensive care nurse PhD at the General intensive care unit 1, for reading the manuscript and contributing with good suggestions.

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In the words of Socrates, ‘who knows what is right, will do what is right’, but regrettably this is not always the case. In the literature, we identify two challenges associated with the introduction of new knowledge into nursing practice. In an early phase of nursing research, inadequate access (comprehensibility, applicability etc.) to research findings was given attention. This inadequacy was described as a gap between science and practice (1, 2). Today, researchers are keen to highlight specific, practical implications when research findings are presented, and nurses are trained to read and consider research results. However, the attention has now moved to another challenge: Even if new research is made accessible to practitioners in the field, this does not necessarily result in the implementation of new practice.

Research shows that many effective initiatives are never put into practice, and that health professionals continue to use measures that have little or no impact (2). Even initiatives whose effectiveness is well documented, have taken between one and two decades to be implemented (3). The international literature refers to this challenge as ‘the second translational gap’ (2) or ‘the knowledge-action gap’ (3). The demand for research-based nursing has been accompanied by an increasing interest in the development and evaluation of new initiatives. Research shows that the ‘translational gap’ (4) is particularly prevalent in the primary health service. Despite documented positive results, many research and development projects end up as so-called one-off projects. Why is it that initiatives with documented good efficacy never become part of new practice? The answer to this question suggests that we need tools to help us identify the ‘survival potential’ of interventions.

The purpose of this article is to present such a process evaluation tool: Normalisation Process Theory (NPT) (4–6). We will present the theory and provide examples of its application by describing our experience of testing a new intervention in the primary health service.

Normalisation Process Theory as an evaluation toolkit

The literature suggests that process evaluation is important (4). While evaluation of the intervention focuses on its efficacy, process evaluations focus on what factors are important for the intervention to be implemented as new practice. Theories that focus on the process are therefore important, and a number of different process theories have been developed (4, 5).

NPT is based on recognition that the implementation of complex interventions requires attention to the social processes that are needed for the initiative to be established as part of everyday practice (7). All individuals will act in accordance with their own context. Action is understood as a social process in which the people involved accept the new initiative depending on how well it fits in with their perceptions. Furthermore, a new practice must be capable of adjustment to and implementation within an existing framework and daily schedule (table 1). According to May et al., NPT focuses on:

‘… the work that actors do as they engage with some ensemble of activities (that may include new or changed ways of thinking, acting, and organising) and by which means it becomes routinely embedded in the matrices of already existing, socially patterned, knowledge and practices’ (7).

Intervention toolkit

Based on Normalisation Process Theory, British scholars have developed a toolkit (8) for investigating aspects of new interventions. In particular, the toolkit focuses on how new practice may be ‘normalised’ within an organisation or within a profession, and not least accepted by the target group (the patients). NPT is thus an appropriate model for complex interventions which involve several actors (and organisations).

The core questions in NPT are associated with the actors (nurses as well as patients, as service users), the intervention itself, and the organisation. The model is prospective and helps us look ahead, towards factors that may obstruct or facilitate the implementation of new practice. The theory focuses on four elements that have proved key to either facilitating or obstructing the implementation of new practice (4, 6):

• Relational integrationis associated with the actors’ perception of the new intervention and establishes by means of questions whether all actors share an understanding of the intervention and what is to be done.
• Interactional workabilityfocuses on how much the new practice is considered to differ from former practice. Attention is directed to the scope of the change, and whether the change represents an entirely new way to look at something or perceive something.
• Skill-set workabilityis associated with the question of whether the new intervention requires new knowledge and/or who is responsible for what needs to be done.
• Contextual integrationinvestigates the workability of the change within its intended setting. Is everything in place for the new practice to be implemented in the current context, or will it require major organisational and/or resource-related change?

It is important to note that NPT can, and should, be applied in connection with the development of a new intervention as well as in the evaluation of this intervention when tested (9).

Evaluation of interventions

The following presents an evaluation of an intervention which used NPT as a framework for obtaining the respondents’ experiences. The study presents findings from a pilot study of patients’ experiences with a network-centred practice designed to facilitate self-management of type 2 diabetes. The pilot study forms part of a major international project: EU-WISE, funded under EU’s seventh framework programme. The project is a four-year collaborative programme involving six European countries and is intended to develop good community initiatives for helping patients to cope with chronic or long-term disease. The number of patients with type 2 diabetes is large and rising (10), and the disease puts great demands on the patient’s self-management skills (11, 12). This is why these patients were chosen as the target group for the EU-WISE project.

Intervention developed as a supplement

Existing initiatives to stimulate self-management of type 2 diabetes are intended to stimulate the behaviour of individuals through knowledge and motivation (13). This is helpful for some (14), while other patients drop out for various reasons (15, 16), which suggests a need for a range of different approaches. There is clear connection between a limited social network and poor self-management of chronic disease (17, 18). In this context, ‘social network’ refers to family, friends, colleagues, interest organisations etc. with which a person is associated.

Patients who never considered the diagnosis to be serious, were not interested in the initiative.

Based on trials (19) and literature compilations (11, 20, 21) the EU-WISE project has developed the European Generating Engagement in Networks Involvement (EUGENIE) intervention. The EUGENIE intervention was tested as a supplement to existing programmes in a pilot study conducted in the period from August to November 2014 in a Norwegian municipality. The purpose of the pilot study was to contribute to the development of the intervention with a view to assessing its suitability for further use on a larger scale in Norway. We chose NPT because we wanted our approach to allow us to assess whether this intervention might be implemented as part of normal practice, and what might need to be adjusted before testing the intervention on a larger scale.

The objective of this part study is thus to investigate whether the use of NPT gives us a good insight into how service users, in this case the patients and nurses, assess the quality of the EUGENIE toolkit and therefore its viability.

Method

Recruitment and sample

A nursing clinic run by the municipal health service agreed to test the EUGENIE intervention. The nursing clinic is part of a recently established medical centre located in Eastern Norway. The municipality provides out-patient training programmes, follow-up and self-management support for patients with chronic or long-term afflictions. The nurses at the nursing clinic and the doctors at the regional hospital’s out-patients’ clinic gave eligible patients verbal information about the EUGENIE study and invited them to take part in the pilot study. A total of 16 patients took part, which complies with the protocol established for the main project.

The inclusion criteria for participation were type 2 diabetes diagnosis in patients aged 18 or above, and sufficient fluency in Norwegian to be able to take part in a qualitative interview without an interpreter. Exclusion criteria were patients with a combination of type 2 and type 1 diabetes, and pregnancy-related diabetes. We also interviewed one of the two nurses who conducted the intervention.

We started by informing the patient about the background and purpose of the intervention. We also obtained the patient’s written informed consent to take part in the study. The study was approved by the Regional Committees for Medical and Health Research Ethics (REK South-East). Furthermore, we obtained the consent of the institution’s management.

The intervention

The EUGENIE intervention focuses on strengthening the personal networks of people with chronic diseases like type 2 diabetes. The intervention involves a conversation between a nurse and a patient within the framework provided by the EUGENIE toolkit. Figure 1 shows the four stages of EUGENIE.

The nurses who took part in the intervention received training which introduced them to the background for the intervention and taught them how to use the EUGENIE toolkit. The nurses already had an overview of activities available within the local community, such as local walking groups, diet and nutrition courses, senior dancing groups etc.

Material and data collection

The researcher asked the patients’ permission to observe their session with the nurse, and it was agreed that the researcher would then conduct an interview with the patient immediately following the intervention. The interview was conducted in a different room to where the intervention took place. The research interviews started by inviting the patients to share their thoughts about their conversation with the nurse, what it had felt like to answer the EUGENIE toolkit questions, and what they thought about the invitation to increase their involvement with various networks. In addition to the open-ended introductory questions, we followed up the interview with more structured questions based on NPT (table 1) and earlier evaluations of similar interventions (22).

The nurses who took part in the intervention discussed their experiences between themselves and found that they were very similar. One of the two nurses who had taken part in the intervention was interviewed after the project had ended. This interview was also structured in accordance with the NPT elements (table 1).

The duration of the interviews varied between ten and 28 minutes, and they were recorded on a digital sound recorder. We transcribed all the interviews consecutively; the nurse was interviewed after the project had been completed. This interview lasted longer (50 minutes) and was open-ended, but the interviewer ensured that all parts of the intervention were discussed.

Data analysis

Our content analysis is inspired by Kvale and Brinkmann’s (23) description of theoretically driven analysis of interviews. First, we close-read the complete interviews. In this phase, we put emphasis on the respondents’ answers to the first open-ended question of the interview because we assumed that this would reflect the respondents’ immediate thoughts about what was important to them. At the same time, the application of normalisation process theory remained at the heart of the analysis process throughout, as we made use of a reflection form. The NPT-based reflection form (table 1) worked as a tool for the analysis in that overarching themes as well as the associated questions helped to direct attention to the elements that are key to NPT.

After reviewing the data material several times, we organised the themes according to their corresponding reflection form components. This suggests a relatively theory-led analysis, even if the material was analysed ‘both ways’: open-ended based on the introductory questions and theory-driven via the reflection form. During the analysis process, we reviewed the data material in its entirety on several occasions in order to check that no meaningful items were missed.

Findings

Because patients were recruited via the specialist out-patient service, many of our respondents were suffering late complications and struggled a great deal with their diabetes. Despite the fact that the respondents were positively inclined to take part in the interview, many of them gave relatively brief answers. In the following, we will present the intervention experiences as recounted by respondents and nurses. The presentation is structured according to the main elements of NPT. However, skill-set workability and the potential for contextual integration have been merged to form a single item because responses appeared to be overlapping.

Relational and contextual integration

The respondents’ immediate reflections on the intervention varied. Some patients understood the purpose of the first part of the intervention, the mapping, within the framework of a medical survey-finding mission, and thus saw the exercise as a requirement to meet the needs of the health service. Consequently, in these instances the patient and the nurse do not have a shared understanding of the purpose served by the mapping of networks. Other patients quickly grasped ‘the idea’ and expressed enthusiasm for the focus on networks. Like many of the patients, the nurses reflected that the focus on networks was unfamiliar, but very rewarding. 

It may seem that both nurse and patients considered the mapping of networks to be potentially difficult. Having a small network may be considered to carry a stigma, and some patients expressed embarrassment.

Interactional workability

All patients completed the EUGENIE instrument used during their session with the nurse and made arrangements for a further appointment. Most of the patients were actively involved with identifying activities that would be appropriate for themselves. Some patients asked for particular activities, while others awaited suggestions from the nurse. Several patients felt that the intervention could contribute to a more active lifestyle.

Any change that differs significantly from earlier practice will put great demands on the people involved. The patients as well as the nurse considered the intervention’s focus on networks to be a novel idea. Some patients said that they started to reflect on their own network in a new way and thereby discovered resources they had previously not been aware of. The nurse also pointed out that the approach gave new access to initiatives that could be integrated into the patient’s everyday life in a positive way. The patients as well as the nurse were of the opinion that time is needed for reflection and adjustment before the network approach can be integrated as a natural part of the nurse’s appraisal of the patient, or the patient’s self-understanding.

Skill-sets and the potential for contextual integration

Many patients pointed out that it is important to partner up with someone to get active. A number of patients wanted the nurse to contact the organisers of the activities on their behalf to agree when and where to attend. The nurses pointed out that the new intervention required significant effort in order to obtain and maintain an overview of all the community programmes on offer at any given time.

Several patients wished to recommend the intervention to others. The pilot study suggested that it was the elderly patients who were the keenest to talk about possible resources within their network. They also talked about what they could do to make better use of these resources or to expand their networks. Several elderly women also talked about care responsibilities which made it difficult for them to take part in activities. For these women, practical facilitation was an important initiative.

Discussion

We made use of NPT as an approach by which to explore whether the EUGENIE intervention is acceptable and workable in the eyes of our sample of patients with type 2 diabetes and their nurse. The pilot study is small and the participants are monitored over a very short period of time. Our findings will therefore have to be considered in the light of the study’s limitations.

Most respondents were open to a network-style approach. The mapping of patient networks is a sensitive topic which will require a considerate approach by health personnel who wish to make use of network mapping as a tool. A large proportion of the patients became more aware of resources within their own networks and wanted to take part in new activities. Like other initiatives that aim to stimulate the behaviour of individuals through knowledge and motivation, a network-oriented approach will not help the self-management of every patient. Patients who did not consider their diagnosis to be serious, were not interested in the initiative. This experience is supported by earlier research (19) and indicates that the EUGENIE intervention, like other interventions, will not appeal to all patients diagnosed with type 2 diabetes.

Any change that differs significantly from earlier practice will put great demands on the people involved.

Most respondents felt it was challenging to cope with the demands of their disease. The nurse as well as the patients expressed the view that the network approach was new and unfamiliar to them. The fact that the respondents saw the intervention as a new idea, did not generally appear to engender scepticism towards the intervention, as described in earlier research (24, 25). Although most of the respondents were active and interested in finding appropriate activities, their statements suggest that new concepts need time and perhaps repeated sessions to become established.

Given the above reservations, we draw some tentative conclusions. The intervention appeared to potentially provide an important supplement to existing practice. A pre-existing plan of all activity programmes on offer is a prerequisite, to ensure that health professionals need not spend time on compiling and maintaining such listings. Patients as well as health personnel consider it important that enough time and preferably more than one session, is set aside to ensure that patients are able to assimilate the new way of thinking. The nurse also needs time and training to conduct the intervention. It is important to ensure that such training of health personnel gives due attention to the ethical sensitivity required in connection with the mapping of patients’ network.

Some patients considered the network mapping exercise to form part of the data collection procedure required for the health professionals to satisfy the need for patient information. This perception suggests that the relational integration of the intervention was not always successful, and this may have had an obstructive effect. However, the nurse and patients appeared to take a positive attitude to the changes involved with the new approach, and they considered them to be workable within the context of the patient’s day-to-day life as well as within the nursing framework. If the local authorities have no comprehensive schedule of existing activity programmes, the intervention becomes more demanding since a listing of all existing programmes needs to be compiled first.

Conclusion

The purpose of health care interventions is to make people better. In order to meet this objective, researchers need to ensure that the interventions they develop can be implemented. NPT provides a toolkit to this end. It is rare for anyone to examine the prerequisites for a new intervention to be implemented as new practice, and this may well form part of the reason for the ‘translational gap’ that we described in the introduction.

This article has presented a tried and tested conceptual model as a tool to evaluate the process of implementing a clinical intervention. We have wanted to clarify the theory by allowing its various elements to structure our analysis as well as our presentation of findings and discussion. We have demonstrated how the model may be used by presenting, by way of an example, an intervention involving adult patients diagnosed with type 2 diabetes. It is important to point out that the process evaluation must be pre-planned and form part of the intervention from the very beginning of the project.

The EUGENIE intervention appeared to be a new and engaging approach to the self-management of disease, from the patient’s as well as the nurses’ perspective. The study’s findings are important for the continued development of the intervention. By using NPT as a framework, we were able to focus not only on values and thought processes, but also on specific and practical every-day challenges in the lives of patients and nurses. We were able to expose obstructing as well as facilitating factors that may affect the degree to which a network approach can be established as one of the support programmes offered to patients with chronic illness so that they can cope with everyday life.

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Although many older people remain in good health, increasing age is related to degree of morbidity (1, 2). One of the most frequently occurring bacterial infections among the elderly is urinary tract infection (UTI) (3). In 2014 59.3 percent of recipients of home care services were above retirement age (4), which suggests that among the users of home care services a number will contract UTI.

Diagnosing urinary tract infection

Typical symptoms of UTI are painful urination, frequent urination and fever; in older patients, however, vaguer symptoms such as confusion, dizziness and increased tendency to fall may also indicate UTI (2, 3, 5). When health personnel register symptoms of UTI in elderly home dwelling patients, they will frequently respond by taking a urine dipstick test.

If the urine dipstick shows positive for nitrite and/or leukocytes, health personnel will generally contact a physician (6) by telephone, e-mail or in person, and antibiotics will be prescribed (7). Although UTI is the most common type of bacterial infection, elderly patients are frequently overdiagnosed and overtreated due to vagueness of symptoms and high incidence of asymptomatic bacteriuria (ASB) (5, 8-10), which shall not be treated according to clinical guidelines (11-14).

A frequently used assessment method is using a urine dipstick; there are, however, several sources of error related to the use and interpretation of the urine dipsticks in relation to the various parameters such as leukocytes, nitrite and others (5, 10, 15). Much suggests that urine dipsticks are inappropriate for diagnosing UTI in the elderly, as the method is not very reliable. Urine dipsticks cannot distinguish between UTI and ASB (9, 10, 16).

In addition to using urine dipsticks, a urine sample is often collected for culture. To ensure a reliable test result it is essential that the urine sample is properly handled during collection, transportation, storage, analysis and reporting (5, 15). There are currently no guidelines for urine sample collection in the home care services, whereas a gold standard exists for hospitals (17).

Routines for urine sample collection leave sources of error

Current routines for urine sample collection in the home care services appear to have several sources of error. Collecting a urine sample from urine incontinent patients that use urine absorbent products is especially difficult. The way the home care services are organised often result in the nurses having to drive long distances, alone and with many patients to serve before returning to the home care services offices. This can make following correct procedures for storing urine samples and sending them to microbiological testing difficult (18).

Health personnel are uncertain of whether they have read the urine dipstick correctly due to difficulties in distinguishing the colour nuances on the stick.

The symptoms of UTI are often atypical (2), and the reliability of urine dipsticks and urine samples is uncertain. That is why many emphasise the importance of a holistic nursing approach, in which the mapping of vital signals such as pulse, temperature and blood pressure is essential (9, 10). From this follows that health personnel must have sufficient knowledge to recognise symptoms and act adequately, so that patients receive the help they need. After searching several databases we have not found any research addressing health personnel’s knowledge on UTI or how urine dipsticks and urine samples are applied and collected, treated and read in the home care services in Norway. We want measures that will contribute to quick and secure diagnosis, which would also hinder overtreatment of UTI.

The study’s research question

It is not clear which knowledge health personnel in the home care services have on UTI and how they perform the necessary tests in connection with UTI. We therefore designed a survey to identify points of possible improvement of practice. The survey had the following research questions:

1. What knowledge do health personnel have on symptoms of UTI?
2. How are urine dipsticks used and urine samples collected and treated in the home care services?
3. How do health personnel experience the utility and the reading of the urine dipstick parameters?

Method

Design

The survey is designed as a cross sectional study. We developed a questionnaire to map knowledge on UTI, use of urine dipsticks, and urine sample collection. The questionnaire contained 16 questions, of which 11 were multiple-choice questions. Two were open questions, and three were demographic questions (profession, number of years in the work place, and position). To the majority of the questions more than one answer was possible. The authors developed the questionnaire in collaboration with a professional development nurse and a leader for the relevant unit in a Norwegian municipality. The questionnaire was twice tested for content validity with typical respondents, a total of six employees in the home care services. These respondents gave their opinions on whether the questionnaire was acceptable, understandable, relevant for the setting, and free of ambiguities (19).

Data collection

We invited six municipalities in South East Norway, and they were all willing to participate in the study. The questionnaire was administered electronically via Questback survey. The inclusion criterion for participation in the survey was employment in the home care services, either as a permanent employee, a nursing student or a substitute. All employees in the home care services in the six municipalities were invited and encouraged to participate. Those invited received a letter with information on the study with a link or QR code to the questionnaire, or an e-mail with information and link to the questionnaire.

Analysis

We analysed differences between the groups by using chi square test and analysis of variance (ANOVA) where 1000 bootstrap samples were chosen, as a normal distribution could not be ascribed to all variables. The analyses were performed using SPSS version 22. A strict level of statistical significance was set at p£0.01 to avoid the multiple comparisons problem. We did a principal factor analysis of question 13 to reduce the many response alternatives to a manageable size. We extracted factors with value ³1 and used oblique rotation (direct oblimin) as we expected the factors to correlate (20).

Result

The questionnaire was sent to 209 employees in the home care services, including registered nurses, assistant nurses, nursing students and assistants (health personnel without formal nursing education), in six Norwegian municipalities. A total of 141 persons responded (response rate 67.5 percent). Of the respondents 49 percent were registered nurses, 21 percent assistant nurses, 7 percent assistants, 3 percent department leaders and 20 percent nursing students. The registered nurses had worked on average 4.7 years in the home care services and 70 percent of the registered nurses had a permanent position.

What knowledge on symptoms of UTI do health personnel possess?

Question 2 in the questionnaire asks: “What symptoms do you consider to be the most important signs of UTI?” All health personnel groups agreed that confusion is an important symptom of UTI while apathy and anorexia are not. Table 1 shows what health personnel in the home care services consider to be the most important symptoms of UTI in their patients. The symptoms are here ranked by what the nurses considered to be the most important compared to what the other professions considered the most important signs of UTI. For instance, 90 percent of the registered nurses considered confusion to be an important symptom of UTI, while 70 percent of the nursing students said the same. The analysis shows that there was a statistically significant difference between the groups on “deteriorating general condition”, “burning pain when urinating” and “bad-smelling urine”. This shows that there was disagreement or different levels of knowledge as to how important these symptoms were.

Question 4, “What do you do when you notice that a patient has symptoms of UTI?” is intended to map whether health personnel are able to act adequately on symptoms of UTI. The results from question 4 (see table 1) show that the great majority consider UTI to be their area of responsibility, and assistant nurses (34 percent), students (38 percent) and assistants (90 percent) contact a registered nurse and ask for assistance or advice as to how to proceed. Half of the registered nurses state that they contact a physician, while the great majority (excepting 40 percent of the assistants) use a urine dipstick when they see signs of UTI in a patient.

The number of personnel who collect a urine sample varies among personnel groups, but 67 percent of registered nurses say they collect a urine sample at symptoms of UTI. Relatively few within all groups check temperature and pulse (from 0 – 26 percent), whereas 64 percent of registered nurses assess the patient’s general condition at symptoms of UTI.

How are urine dipsticks and urine samples used and treated?

Question 5 maps practice for urine sample collection in the home care services. The results show that for all groups it is most common to let the patient urinate in a bedpan, plastic urine bag or urine container under supervision (from 94 – 100 percent) (table 1). Some ask the patient to collect the urine; 41 percent of the registered nurses do this. The purpose of question 12 is to map practice for urine dipstick use. The results show that the majority of health personnel use the dipstick in the patient’s home or at the office, base or the zone in which they work (from 76 to 20 percent) (table 1).

Question 13 asks: “If you collect a urine sample for culture (to send to physician/laboratory), which of the suggested alternatives do you recognise from your work day?” The factor analysis of the answers to this question yielded four factors that we have given the following names: “no routines”, “random storage”, “knowledge-based routines” and “unsystematic practice”. Table 2 shows the results from the factor analysis (20). Analyses of the differences between the personnel groups on the four factors for urine sample handling showed that the registered nurses scored the highest on factor 1 (no routines) and factor 4 (unsystematic practice) (statistically significant).

Assistants scored the highest on factor 2 (random storage) (not significant), and assistant nurses scored the highest on factor 3 (knowledge-based routines)(not significant). Figure 1 gives a graphical presentation of the registered nurses’ share of maximum score on the four factor variables – that is, how high the registered nurses score on average on the factors in relation to what was the highest possible score. The figure shows that the registered nurses score the highest on knowledge-based routines.

How do health personnel judge the utility of or problems related to urine dipsticks?

Question 6 asked: “If you use a urine dipstick to check for the presence of UTI, what reactions on the urine dipstick do you look at?” 81 percent of the registered nurses answered that they looked at leukocytes. 97 percent of the registered nurses looked at nitrite, while 48 percent of nurses also looked at blood. The result of question 7 showed that the registered nurses considered glucose (74 percent) and protein (62 percent) to be useful clinical indicators. The result of question 8 supports that the indicators are considered useful and that few registered nurses think that they should be removed (glucose 34 percent, leukocytes 0 percent, nitrite 5 percent, protein 45 percent and blood 5 percent).

To the question “Are you ever in doubt whether you have read the urine dipstick correctly?” 41 percent of the registered nurses, 37 percent of the assistant nurses, 100 percent of the assistants, and 89 percent of the students answered “yes”. The main reason for the uncertainty surrounding the reading of the urine dipstick is difficulties in distinguishing the colour nuances on the test strip (from 30 – 80 percent) (table 1).

Discussion

Knowledge on UTI

With regard to knowledge on important symptoms of UTI, the results from the questionnaire show that health personnel in the home care services have knowledge of the cardinal symptoms of UTI in the elderly. Such cardinal symptoms include confusion, deterioration of general condition, painful urination, bad-smelling urine and frequent urination (3). Our study suggests that the level of knowledge varies among the personnel groups, especially when it comes to assessment of important symptoms such as deterioration of general condition, painful urination and bad-smelling urine.

The results also show that symptoms that may be considered vague, such as delirium, poor appetite, pain localised over the symphysis, apathy and anorexia are not considered important signs of UTI, even though they are considered possible symptoms of UTI in the elderly (3, 21). For older patients signs of disease are typically vague and unclear (2, 3, 5). It is thus important that health personnel know that, for instance, poor appetite and apathy may also signal a somatic disease such as UTI.

We believe that these results may indicate that health personnel in the home care services do not have enough knowledge that diffuse geriatric symptoms may be a sign of disease and functional decline. If this is the case it is cause for worry, especially as we know that health personnel in the home care services are frequently alone with the patients. They may be the only visitor to the patient that day. The patients depend on all personnel having basic competence to act adequately to give sufficient and appropriate help (22-24).

Elderly patients are often overdiagnosed and overtreated due to vague symptoms and high prevalence of asymptomatic bacteriuria.

When it comes to acting adequately on symptoms of UTI, the results show that the majority of health personnel do react and act – either by contacting the nurse for help or by contacting physician, using urine dipsticks and/or collecting a urine sample. At the suspicion of UTI among older patients urine dipsticks are widely used (3), which the results in our study also support.

A Canadian study found that urine dipsticks are used when health personnel suspect UTI based on the typical symptoms of UTI, but also when the patient’s condition changes and at more vague symptoms such as weeping and increased anxiety (6). This seems to be the case for Norway as well, as the results show that the majority of the skilled health personnel use urine dipsticks at any sign of UTI. The same Canadian study showed that registered nurses observe the patient’s symptoms, prescribe urine cultures, use urine dipsticks and influence the initiation of antibiotics when they contact physician (6). They thus have a central role in the diagnosing of UTI in the elderly.

We have reason to believe that registered nurses in the home care services in Norway may also influence whether or not patients are diagnosed with UTI. The registered nurses are responsible for the nursing professional areas of treatment when they are on duty. Our questionnaire also shows that other health personnel act by contacting and consulting with registered nurses at the suspicion of UTI.

We thus see how important it is that all health personnel, and especially the registered nurses, have knowledge on explicit and vague symptoms of UTI in the elderly, in order to make the correct assessments and act accordingly. It is therefore unfortunate that the minority in our sample check vital signs like temperature and pulse. It is also worrisome that a relatively small number evaluate the patient’s general condition as part of a systematic assessment of the health of patients with possible UTI (5, 9, 10).

Practice for use and treatment of urine dipsticks and urine samples

When it comes to practice regarding the collection of urine samples in the home care services, the survey showed that the most common approach is to let patients urinate in bedpans, urine bags or urine containers under supervision, and that a small number ask the patients to collect the urine. It is an advantage to have health personnel present when patients urinate as it makes it possible to check whether the urine collection is done hygienically correct, to avoid contamination of the urine. As far as we know, there are no national guidelines for collecting urine samples in the home care services the way there are for hospitals (17).

We recommend such guidelines due to the varied context of “home care services”. The hygienic conditions and equipment available in hospitals are often lacking in the home care services (25). The hygiene principles in the procedure for collecting urine samples in hospital will necessarily also have to be followed in the home care services to avoid contaminated samples. It is important that health personnel make sure that urine is collected midstream. When collecting urine midstream the foreskin must be pulled back or the labia held apart. The genital area should be cleansed when the patient is urine incontinent (15, 17, 26).

Today there are no guidelines for collecting urine samples in the home care services.

The survey shows that health personnel use a urine dipstick in the patient’s home, in the office, base or zone where they work. By using the urine dipstick in the patient’s home, given that the urine is fresh, the urine is safeguarded against further bacterial growth caused by long storage, such as in the car. With guidance from competent personnel, using the urine dipstick in the office, base or zone would be more hygienic. However, the time of storage in room temperature from the sample has been collected till it has been tested, must not exceed two hours (18).

The factor analysis showed that the answer alternatives for the handling of urine samples (question 13) grouped around four factors, of which three factors measure inappropriate practice and one factor measures knowledge-based practice (17, 18). As figure 1 shows, the registered nurses are closer to maximum score on knowledge-based routines. There is, however, a way to go before all registered nurses attain full score on what is best practice:

• The urine sample must be stored in a cool place immediately upon the nurse’s arrival at the office or base
• The nurse must use urine from the same sample as tested with the urine dipstick in the urine sample sent for culture
• The nurses must have a set routine as to how to send urine samples
• The urine sample must be accompanied by information on the patient’s health condition
• After sending the sample the nurse must document the patient’s health condition, reactions on the dipstick, and when the sample was sent

Being as no national guidelines exist for urine sample collection procedure in the home care services, we recommend that such guidelines be developed. This may secure a more responsible, systematic and knowledge-based care to patients with UTI in the home care services.

The utility of and problems with urine dipsticks

A recently published literature review showed that for the elderly nitrite or leukocytes alone, or in combination, are useful urine dipstick indicators of bacteria in the urine (16). It is thus reassuring that the registered nurses in this survey mainly look at leukocytes and nitrite as indicators of UTI on urine dipsticks. The other indicators, glucose, protein and blood were considered useful indicators of other conditions, which is in line with urine dipsticks not being used as a diagnostic tool for UTI alone.

With regard to potential problems with urine dipsticks, all the assistants expressed uncertainty as to how to read the urine dipstick. Several of the assistant nurses and the registered nurses were similarly uncertain about such reading. In the main, health personnel are uncertain as to whether they have read the urine dipstick correctly as they cannot distinguish the colour nuances on the dipsticks.

Being as no national guidelines exist for urine sample collection procedure in the home care services, we recommend that such guidelines be developed.

The literature review mentioned above shows that there are great weaknesses related to using urine dipsticks as diagnostic tools for UTI in the elderly (16). Urine dipsticks give many false positives, and do not distinguish between actual bacteriuria and ASB, which shall not be treated (11). The literature review shows that in spite of these weaknesses we have no better diagnostic tool available.

In addition to the diagnostic weaknesses of urine dipsticks, this survey shows that there is great uncertainty associated with whether health personnel read the urine dipstick correctly. So it seems that a urine dipstick is not a reliable tool in the home care services. Supported by other research (27), this emphasises the need for a more reliable tool for diagnosing UTI. A new tool must compensate for the diagnostic weaknesses of urine dipsticks, but also for the uncertainty associated with subjective variations in reading and interpretation.

Conclusion

The purpose of this study was to map knowledge on UTI in health personnel in the home care services. We also wanted to find out how urine dipsticks and urine samples are used and collected, treated or read in the home care services. The purpose of the study was to identify points for possible improvement of practice. The survey suggests that practice may be improved on several issues: Health personnel in the home care services need more knowledge on the range of symptoms in older patients that may be related to UTI, so that more cases can be discovered and diagnosed earlier. At the same time it is important to think holistically as signs of disease in elderly patients may be both vague and diffuse, and signal other diseases than just UTI. Systematic, clinical observations are necessary for following the development of the patient’s health condition.

The collection of urine samples may be improved with regard to possible contamination of urine, routines for secure transportation, and documentation of necessary and sufficient information on the patient’s health condition. Problem areas for urine dipsticks seem to be the reading, but also a lack of knowledge regarding what reactions to look at, how much is enough urine, what are sources of contamination, and how long and how the urine may be stored. On the basis of these findings we recommend the development of national guidelines for the procedure for urine sample collection and use of urine dipsticks in the home care services in Norway. We also recommend research on and development of more reliable and patient friendly diagnostic tools for UTI adapted to the older patient groups, especially for patients who use urine absorbent products where collecting urine samples is difficult.

References

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2.           Beckett CL, Harbarth S, Huttner B. Special considerations of antibiotic prescription in the geriatric population. Clinical Microbiology and Infection 2015;21(1):3–9.

3.           Wyller TB. Geriatri : en medisinsk lærebok. Oslo: Gyldendal Akademisk. 2015.

4.           Statistisk Sentralbyrå. Kommunale helse- og omsorgstjenester 2014 Statistikk om tjenester og tjenestemottakere Rapporter 2015/42. Available at: http://ssb.no/helse/artikler-og-publikasjoner/kommunale-helse-og-omsorgstjenester-2014. (Downloaded 15.10.2015).

5.           Nazarko L. Treating the patient or the labstick? Urinary infections in older people. British Journal of Healthcare Assistants 2008;2(7):323–26.

6.           Walker S, McGeer A, Simor A, Armstrong- Evans M, Loeb M. Why are antibiotics prescribed for asymtomatic bactiuria in institutionalized elderly people? A qualitative study of physicians' and nurses' perceptions. Canadian Medical Association Journal 2000;163(3):273–7.

7.           Pettersson E, Vernby A, Molstad S, Lundborg CS. Infections and antibiotic prescribing in Swedish nursing homes: a cross-sectional study. Scand J Infect Dis. 2008;40(5):393–8.

8.           Bevridge LA, Davey PG, Phillips G, McMurdo ME. Optimal management of urinary tract infections in older people. Clinical Interventions in Aging 2001;6:173–80.

9.           McNulty C. Managing asymptomatic bacteriuria in the elderly. Practice Nursing 2014;25(1):11–5.

10.       Nazarko L. Recurrent urinary tract infection in older women. Nurse Prescribing 2014;12(12):608–13.

11.         Helsedirektoratet. Nasjonale faglige retningslinjer for antibiotikabruk i primærhelsetjenesten. Available at: https://helsedirektoratet.no/retningslinjer/nasjonal-faglig-retningslinje-for-antibiotikabruk-i-primerhelsetjenesten. (Downloaded 08.11.2016).

12.       High K, Schmader KE, Sokol HN. Evaluation of infection in the older adult. Available at: http://www.uptodate.com/contents/evaluation-of-infection-in-the-older-adult?source=search_result&amp;search=infection+elderly&amp;selectedTitle=1%7E13#H1498008. (Downloaded 14.04.2016).

13.       Fekete T, Hooton TM, Calderwood SB, Bloom A. Approach to the adult with asymptomatic bacteriuria. Available at: http://www.uptodate.com/contents/approach-to-the-adult-with-asymptomatic-bacteriuria. (Downloaded 01.05.2015).

14.       Scottish Intercollegiate Guidelines Network. Management of suspected bacterial urinary tract infection in adults SIGN guideline 88. Available at: http://www.sign.ac.uk/guidelines/fulltext/88/recommendations.html. (Downloaded 20.04.2016).

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Testicular cancer is the most common form of cancer among young men aged 15 to 40 years (1, 2). The prevalence of this type of cancer has doubled over the past 50 years (3). Norway has one of the highest prevalences of the disease. Around 300 new cases occur each year (2).

There are two different types of testicular cancer: seminomatous, arising at median age 35 years, and non-seminomatous, arising before 30 years of age and metastasising more frequently. The development of the disease is divided into four stages: In stage I a limited tumour has been located in the patient’s testicle. In stage II the patient has lymph node metastases in the abdomen, while in stage III lymph node metastases occur outside the abdomen. In stage IV there are distant metastases to the lungs and/or the brain. The most common symptom is a lump in the testicle with tenderness and pain (2).

Diagnosis and treatment are a great strain

The patients go through a standardised treatment programme in accordance with THE SWENOTECA- collaboration (Swedish Norwegian Testicular Cancer Group), where the treatment programme is determined based on the type of cancer and the stage of the disease. The first choice of treatment is surgery, removing the testicle and the tumour. The tumour is examined histologically before the patient is referred to further follow-up and treatment.

In stage I the treatment is only surgical but the patient is followed up on a regular basis for up to ten years. Patients in stages II – IV also undergo chemotherapy. In stage IV the distant metastases are surgically removed where this is possible. Total survival is 97 percent, but this depends on when the patient receives the diagnosis. For patients in stage IV survival is 41 percent (2).

Earlier studies show that receiving the diagnosis and undergoing treatment for testicular cancer are a great strain (4, 5, 6, 7, 8). The patients are frequently young, and the diagnosis comes as a shock to many (4, 5, 6). Treatment with chemotherapy can be an ordeal, as it may have tough side effects such as hair loss, nausea, weakened immune system, fatigue and infertility (5, 6, 8, 9). Studies also show that living with the fear of recurrence after treatment is completed can be difficult (4, 5).

Important to learn coping strategies

In order to experience the best possible health and wellbeing in such a difficult situation, coping strategies are important (4, 5, 7, 19). According to Antonovsky, health is not absence of disease, but we move along a continuum of degrees of health. To cope is to handle challenges that are experienced as a threat to health, or that do not have any immediate solution. The concept ”sense of coherence (SOC)” is central to strengthening coping and health. SOC consists of three components:

• comprehensibility
• manageability
• meaningfulness

Coping resources are important to strengthen SOC and may consist of internal as well as external resources. Examples of internal resources are ego identity, values and knowledge. External resources may be social support and material values (11).

Support, physical activity and hope help improve coping, health and wellbeing.

With regard to coping resources during diagnosis and treatment of testicular cancer, an earlier study has found that social support from close ones was important, but that health personnel were also central in giving support (4). A more recent study shows that in addition to support from partner and health personnel, religious faith and knowledge may be of help (5). We have found few studies that address patients’ experiences in connection with diagnosis and treatment of testicular cancer. We also have found few studies on what sustains the ability to cope. There is thus a need for more knowledge. The purpose of this study is thus as follows:

• explore the patients’ experiences with being diagnosed with and treated for testicular cancer
• explore which coping resources are important in strengthening the patients’ ability to cope

Method and sample

The study has a qualitative design with individual interviews.

The unit leader at a local hospital distributed letters with requests for participation to 22 men who had undergone testicular cancer surgery during the past four years, and who had completed treatment. Of these, five wished to participate in the study.

The informants were 32-51 years of age when the interview took place. The level of education varied from primary school to college, four were in a relationship, three had children, and they had all returned to work.

The informants had had surgical treatment at the local hospital and had received further follow-up and/or treatment at a regional hospital. One informant was followed up with regular check-ups, two had had one chemotherapy cycle, one had had three chemotherapy cycles, while one had had five chemotherapy cycles.

Data collection

First author carried out the interviews in December 2013 and January 2014. In order to get answers to our questions we used a semi-structured interview guide (Table 1). We had received permission to use an audio recorder during the interviews. The interviews took place in the homes of the informants or in the office of the first author. Each interview lasted 45–60 minutes.

During the interviews it was important to let the informants talk freely about their experiences (12). They had to be able to express their sentiments in their own words and in their own way (13). The informants said that to them it felt right to share their story and they talked openly and trustingly about the time of assessment and treatment. The interviewer presented follow-up questions to gain depth and understanding of the challenges the informants had been through. She also asked the informants what they felt had helped them cope with the challenges they had encountered.

Ethical considerations

The study was carried out in accordance with the Declaration of Helsinki. The informants received written information on the study and signed a written consent statement. Prior to the interview the informants received oral information on the purpose of the study. They also received information that participation was voluntary, and that they were free to withdraw at any time (14). The study was also approved by the hospital administration and Norwegian Center for Research Data (project no 34726).

Analysis

We analysed the printout from the interviews by using systematic text condensation (15). The analysis followed four steps:

1. a thorough reading of the printouts from the transcribed interviews to gain an impression of the totality
2. identification and coding of units of meaning
3. comparison in all interviews of the units of meaning from step two
4. condensation and abstraction of the coded units from each category

Findings

The informants yielded good knowledge on the challenges involved in being a patient with testicular cancer and going through receiving a diagnosis and undergoing treatment. Even if testicular cancer is a diagnosis from which the majority recover, it was a great strain to receive the diagnosis and go through the treatment. Below we present the most important themes that emerged in the analysis:

• the diagnosis
• the time from confirmation of diagnosis until information and treatment
• chemotherapy was an ordeal, physically and psychologically
• coping resources that sustained coping

The diagnosis

The theme “diagnosis” comprised two subthemes: “not taking symptoms seriously” and “confirmation of the diagnosis”. The theme “the time from confirmation of diagnosis to information and treatment” had one subtheme: “information”. The theme “coping resources that sustained coping” contained three subthemes: “social support”, “physical activity” and “hope”.

Not taking symptoms seriously

One informant put off seeing a doctor for a long time despite suspecting testicular cancer: “And then I felt, well, a year or so ago, that something happened. And of course I didn’t go see the doctor all that fast, you know. I just sort of thought that this will probably pass.”

Another informant did not at first think that the symptoms were signs of anything serious, while others found that their doctor did not take the symptoms seriously: “And then when I got to the doctor he said he didn’t think it was anything to worry about.” This resulted in it taking a bit longer before the diagnosis could be confirmed.

Confirmation of the diagnosis

Having a cancer diagnosis confirmed was a great shock: “Right away when he said you have cancer. Then I got … just like they had hit me with a shovel. Even if I knew it … it was like … well, then I it was confirmed.”

The time from confirmation of the diagnosis till information and treatment – information

The time between confirmation of diagnosis till information on treatment was the most challenging.

But when the informants received adequate information from a doctor they had come to trust, anxiety was replaced by calm and a belief that all would be well: “And then I was given the prognosis, and I calmed down quite a bit … if you are going to have cancer it is pretty nice to have a kind they have control of.”

It also emerged that medical information, given in a proper manner, should not be underrated: “It was pretty good to get information about … You do wonder how the rest of your body will work after something like that. When you have lost a testicle I mean. How your sex life will work and all that, afterwards, but all that has been just normal.” “They said it was more or less a 50-50 … could become sterile too, and don’t really know that yet. So you froze … had an offer of that. So I did that before starting on the chemo.”

The information is related to knowledge and safety and is important for trust in the health services. Informants who experienced a shortage of information or who had to keep asking for such information related that to the hospital not having enough knowledge on diagnosis and treatment.

Chemotherapy was an ordeal – physically and psychologically

All informants found the surgery uncomplicated and simple. Undergoing chemotherapy on the other hand was a great strain both physically and psychologically. The informants had felt fairly healthy until the chemotherapy, but the moment they were given chemotherapy, they had issues that made them feel really ill. Nausea and vomiting and a feeling of physical and mental fatigue were challenging: “Was totally in the basement after these treatments.” Those who had the most cycles emphasised this strain the most, but also those who had only one cycle of chemotherapy experienced it as a physical and psychological ordeal. The informant who did not undergo chemotherapy, found the thought of doing so very frightening.

Coping resources that contributed to coping – social support

It emerged in the analysis that a spouse or partner was the most important support during the period of illness, and this was seen as a determining factor for getting through the challenges in an adequate way. Also own parents, adult children and understanding from employer and colleagues were emphasised. The informants described it as an advantage to not have to work and to be on sick leave with a good conscience. Also feeling safe and cared for in the health services was central to coping with the challenges throughout the cancer treatment: “A pure success story I think. Impressed by the control the regional hospital had.”

All informants had been open about their disease and had had positive experiences with being so. They emphasised that in being open it was easier to get support. Openness would also hinder speculation and get the patient help to work through his own thoughts and feelings: “It is better to be able to talk about it than have people just sit and wonder, and then make up their own thoughts and opinions. Being open has been a help. The more people who know what you suffer from, the greater is the chance of getting the help you need.”

Coping resources that contributed to coping – physical activity

Several informants emphasised that physical activity was important for coping. Doing something physical signalled that the body functioned, and one could think of other things. Through physical activity they saw progress, and they felt that they did something to move forward: “The best way to get on was when I started to exercise. That felt good, I felt things were working.”

Coping resources that contributed to coping – hope

The informants further emphasised the importance of being positive and have hope that all would be well. The informants gave the doctor and nurses at the regional hospital much of the credit for this hope: “I guess I hoped I would be among those percentages, I don’t remember, it was some 95 percent or whatever she said. Then I thought, oh well, I do think this is going to go well … and then I did relax a bit more.” “When I heard the possibilities or prognoses then I thought that this, this is probably going to turn out really well.” Believing that it would be all right made it easier to grit your teeth and go through the treatment. In addition professionalism, care and cheerfulness from the health personnel were emphasised as important.

Discussion

This study shows that the men find it demanding to be a patient, receive the testicular cancer diagnosis and go through the treatment. Various coping resources such as social support, physical activity and hope may help patients cope with the difficult life situation.

The findings show that some do not see a doctor despite suspecting that they may have cancer. Some put off seeing a doctor because they do not think the symptoms signal anything serious. Earlier studies show that putting off seeing a doctor in the case of cancer may be due to uncertainty regarding whether the symptoms are serious enough. Some also deny the fact that the symptoms may signal a serious disease (4, 6, 7, 16).

To many the diagnosis comes as a shock.

The informants emphasised how difficult the time was before they received proper information on the diagnosis. The difficulty of going through a time of medical assessment has also emerged in other studies (4, 10, 16). This points to the importance of attending to the patients when they have received the diagnosis. A study on patients with breast cancer shows that early information on a specific treatment plan gives them a feeling of control. They also feel they belong to a trustworthy health service (10). It is important that patients experience predictability and knowledge so that they may more easily manage the challenges the disease brings (5, 10, 11) and feel that the treatment is meaningful, something necessary for full recovery (5, 10, 11). The informants also pointed out that having hope is important for coping during the difficult time that accompanies confirmation of diagnosis and treatment. Hope may give a feeling that there is a way out or the difficulties and that challenges can be managed (10, 17).

The doctor's communication is significant

Several informants emphasised the first doctor who gave them faith that the treatments would succeed. The informants had a clear memory of this conversation, both regarding the words used by the doctor and the emotions they induced. Studies show that the personal interest a doctor shows when communicating a diagnosis is a factor that determines whether the patient will trust or mistrust the doctor (4, 8, 18). Earlier studies also point out how significant trust is, as the disease strengthens the need to trust others (4, 5, 19, 20, 21, 22).

A central finding is that some informants found the information they received in the local hospital to be out-dated. Such incidents weaken the trust in the health services. When the informants felt their lives were under threat when they developed cancer, it became even harder when they experienced that some health professionals did not merit their trust. Earlier studies also show that some health personnel may greatly influence how the patients cope with challenges when ill (4, 8, 10, 23). Health personnel must be aware of this when encountering patients with testicular cancer.

Support from close ones is important for coping

The informants felt that support from family, friends, colleagues and health services was the most important reason for their ability to cope with the illness. This is also in line with earlier studies of patients with testicular cancer (4, 5, 6, 7, 24). The positive effect of social support on health is relatively well documented (25) and that help and support from health personnel is invaluable (10, 19). Having at least one confidant enables resistance and strength and helps give meaning to life (26). This is important for the ability to cope and for the improvement of health and wellbeing (11).

In addition to support from family and health personnel there is much one can do to regain health, according to the informants. Health is not what we are subjected to in life, but our ability to use our coping resources in such a way that one copes with the challenges (11). Focusing on the patients’ coping resources, such as social support, knowledge and hope, thus becomes important. The patient thus gets help to keep his or her place along the continuum between health and non-health, or to move towards better health. By supporting the patient and advising him to use his coping resources, he can more easily manage the situation.

Physical activity yields many benefits

The informants emphasised that how the body functioned was important for their mental health. By using the body physically they had a feeling of being in recovery and on the way back to a better health and existence. The days they felt physically low, they also became psychologically broken down. This is in line with an earlier study that shows that physical activity and being preoccupied with other things may be of help in coping with daily life (4). An earlier review article on cancer patients also suggests that physical activity during treatment may lead to a higher survival rate and an improved quality of life (27).

An interesting finding is that the informants pointed out that openness was an important help for support and coping. This finding is not in line with earlier studies that show that a male approach is to be independent and manage problems alone (6, 7). They also show that it is difficult to talk about one’s own illness (5, 6), and that silence keeps any difficult emotions at bay (28). Our findings are thus an important contribution to research, as they show that openness may lead to more support from others. Such support may also contribute to increased understanding and manageability. According to Antonovsky, comprehensibility and manageability are important in strengthening SOC, which again will improve coping, health and wellbeing (11).

The study's strength

Interviewer had long clinical experience with cancer patients, both from hospital and municipal health services. This experience provides a solid basis for understanding the challenges the informants have had in connection with cancer diagnosis and treatment. Interviewer can ask informed follow-up questions, and the men feel safe when speaking openly of their experiences in the difficult situation (12).

The study's weakness

The study has a small number of informants, and all participants emphasised being open about their illness. It is possible that some of those who did not participate would not have been equally open. Interviewer’s preunderstanding may result in preconceived notions, which may influence the questions asked in the interview and the result of the analysis (14). Interviewer was aware of these issues and attempted to make sure that her own knowledge, experiences and events should not influence the result.

Conclusion

Receiving the testicular cancer diagnosis and chemotherapy was a physical and psychological ordeal for the informants. The stages from suspecting testicular cancer to seeing a doctor, receiving the diagnosis and the treatment were marked by challenges that put life at risk and tested the ability to cope with the challenges. The analysis shows that support, physical activity and hope contribute to improved coping, health and wellbeing. It is also important to be open about the disease so that the network may give support. Early and up to date information was also important, as having one’s life threatened feels even harder when the trust in health personnel is weakened.

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26. Reitan AM. Krise og mestring. In: Reitan AM, Schjølberg T.K. (ed.). Kreftsykepleie – pasient, utfordring, handling. Akribe forlag, Oslo. 2010.

27. Galvâo DA, Newton RU. Review of exercise intervention studies in cancer patients. Journal of Clinical Oncology 2005;23(4):899–909.

28. Lien MI. Syke menn skyr moderlig omsorg. Available at: http://www.sykepleien.no/nyhet/1197229/syke-menn-skyr-moderlig-omsorg(Downloaded 29.04.2013.)

Postnatal care has gradually changed over recent years. Previously, the mother and child would spend five or six days in the maternity ward after a normal birth. Now, they generally go home after one or two days, depending on the woman’s health condition (1). The programme for follow-up in the early postnatal period has not been organised to keep pace with these changes. Most pregnant women are followed up by a midwife and doctor in the municipality throughout the pregnancy and give birth in a hospital with the assistance of a midwife employed at the hospital. The woman then moves to a maternity hotel or ward, where she meets other midwives whom she does not know from before.

The health visitor is usually the first person to establish contact with the woman after her return home, seven to fourteen days after the birth. The postnatal period is a vulnerable time of reorientation and new experiences, during which most women may feel a need for information and support. As a result of the pregnancy and birth, the bodily, mental and social changes may represent challenges for the women concerned (2, 3).

Guidelines for postnatal care

The national professional guidelines for postnatal care were published in 2014 to help ensure appropriate and predictable postnatal care. The municipalities provide maternity services that vary in scope and content, and the Board of Health Supervision has pointed out that the time elapsing from the women’s discharge from hospital until they contact the public health centre represents a critical period (1). The Coordination Reform provides instructions for more effort in health promotion and disease prevention. The reform proposes to bestow a key role on the municipal midwife services in the follow-up of mother and child during the first days after birth (4).

The objective of postnatal care is to help the woman establish a better sense of coping and enable her to take charge of her new life situation to the greatest possible extent, in the best interests of herself and her family (1). The midwife and the health visitor possess different skills, but in their follow-up in the early postnatal period their focus in overlapping. The national professional guidelines for postnatal care recommend that both of them undertake home visits (1).

Before the publication of the national professional guidelines for postnatal care, only very few women were visited at home by the midwife immediately after giving birth, since home visits were not included in the tasks of municipal midwives. At the time of writing, only a few municipalities have made provisions for early home visits by a midwife, and there are few studies available of postnatal care practices in Norway (1, 5).

The importance of home visits

Searches for previous research on this topic show that some studies investigate postnatal care in hospitals, while others focus on women and post-partum depression. A number of studies conclude that home visits by a midwife are important. These conclusions are based on investigations of the differences between provision of postnatal care in hospitals and in the home (6, 7), women’s experience of early discharge (8) and parents’ perception of relational continuity when midwifery students provided follow-up during the antenatal, perinatal and postnatal period (9). This study details women’s perceptions and experiences with home visits by a municipal midwife immediately after being discharged following childbirth.

Our research questions are the following:

1. What could be the importance of early visits by a midwife with regard to the woman’s perception of coping in her new life situation?
2. How can the midwife help in accommodating the woman’s needs in the context of home visits?
3. What significance does it have for the woman that the home visit is undertaken by a midwife?

The study is based on theories of empowerment, in the sense of having as much control as possible over issues that may affect personal health. The study emphasised co-determination, redistribution of power and recognition of the woman’s competence in relation to herself (11). The correlation between relational work, perception of coping and autonomy can be regarded as fundamental for health promotion.

Method 

The research design is descriptive, with some explorative elements. We chose to use a qualitative methodology to elucidate the research question (12, 13).

We conducted nine semi-structured individual interviews. The interview guide focused on the woman’s perception of her new life situation, the experience of coping in the early postnatal period, perceptions and experiences associated with the home visit by a midwife and the relationship to the midwife.

Regional committees for medical and health research ethics (REC) have determined that the study falls outside of their mandate (reference number 2013/1140 A). The study has been reported to the Norwegian Centre for Research Data (NSD) (project number 34872) and has been implemented in compliance with guidelines for research ethics (14).

Participants

Since the first author was familiar with the field, she contacted the director of the health services and midwives in the three municipalities that conducted projects on early home visits by a midwife. Most of the visits were undertaken by the same midwife. The women were recruited through convenience sampling (15). The first author requested the municipal midwives to recruit participants consecutively after having undertaken the visit, in order to avoid selective recruitment. All the women who were asked consented to participate in the study.

The inclusion criteria were the following: a healthy child born at full term, home visit by a midwife from one to six days after birth, Norwegian-speaking, and the participation should not represent an undue burden. The participants included six primiparous and three multiparous women. The home visits were undertaken by four different midwives.

Data collection

The first author, who had no previous knowledge of the women involved, was responsible for the collection of data. She interviewed the women in their homes in the period from November 2013 to January 2014. Only the mother and child were present during the interviews, which lasted for an average of one hour. The interviews were recorded on an audio device and transcribed verbatim.

Analysis

We analysed the data with inspiration from hermeneutic content interpretation and systematic text condensation (12, 16). The systematic procedure for text condensation helped achieve an appropriate handling of the large amount of text. In addition, the principles for hermeneutic content interpretation helped elicit valid interpretations in a hermeneutic perspective. This perspective implies that any interpretation depends on the prior understanding on which it is based (12).

Table 1 shows the four stages of the analysis process.

The first author repeatedly read through the entire material. She made notes of reflections and ideas along the way, before writing down the general impression. The condensation took place in an iterative process that involved all the authors, back and forth between the research questions, general impressions and units of meaning. The abstracting took place in the same way. Research questions, general impressions and sub-categories were assessed in light of each other until the categorisation became meaningful on the basis of findings and research questions. During the analysis process we focused on being aware of our preconceptions, using notes and discussions as an aid, in order to ensure valid interpretations.

Results

Table 2 shows the categories that emerged during the analysis.

The perception of being in control

The women felt that the home visit helped provide security and calm in a hectic postnatal period. Many of them told us that they looked forward to the midwife’s visit. The women were aware of what the midwife could provide, and that the visit was voluntary and agreed beforehand. The women thus felt that they were prepared for the visit and in control of the situation:

‘When you come home, it’s much calmer than being in the hospital, it’s easier to think through the things that you wonder about or questions to be asked.’

‘It was very good that we were prepared ... that way, the entire process becomes natural and informal.’

The women felt more secure when receiving support and confirmation from the midwife.

Prior to the home visit, many of the women had believed that the visit would entail checking or assessment of the home and of them as parents. One of the mothers described it as ‘scary’. All the women described the sense of security and the advantage of receiving help based on their own needs as the key element of the home visit:

‘The impression that I had beforehand, what I learned from others, was that they come to check that everything is in order in the house and all that, but certainly also because it was the midwife, it felt just like having a friend visiting, a friend who also has the knowledge.’

The women described various experiences of coping associated with matters being as expected, and that they were able to cope with new roles and tasks. One woman had a strong perception of coping in the context of the birth itself. She described it as important for her to share this experience with the midwife during the home visit:

‘So that was really great, because now I can finally do it, and had the confirmation that I can’ (breastfeeding).

‘We did everything ourselves ... I really felt that sense of coping.’

The need for knowledge and support

During the home visit, it is crucial that the women receive answers to their questions, advice and guidance. The participants described the conversation with the midwife about the pregnancy and birth as essential for their understanding and confirmation:

‘We had prepared ourselves ... made notes of questions and such, so that we could ask about what we were unsure of.’

‘Then we talked a lot about the birth ... I really needed that – that it was her I told what I felt about or what my hopes were before the birth ... because she had been involved all the way, even though she hadn’t been present during the birth itself.’

The partner’s role in the home visit was underscored as essential, because the partner could support the woman. The partner’s questions and experiences were considered:

‘It was good that he could be there too, then we receive the same information, and he also had some questions.’

Many reported that preparing adequately for the postnatal period was difficult, and that manoeuvring through the available information could present problems:

‘No matter how well one prepares, one can never prepare enough, because one cannot know what lies ahead.’

The women’s need for counselling and guidance varied from simple advice and confirmation of normality to more comprehensive guidance regarding matters such as breastfeeding, the birth or how to cope with overwhelming emotions. The women reported feeling safer in their new role after having been provided with support and confirmation by the midwife:

‘I feel quite a lot more trust in the midwife, it’s because I know that she’s a midwife, she knows about me too, not just the baby.’

‘It’s important to hear when one is so uncertain and emotional and very fearful of doing something wrong’ (about confirmation).

Perception of continuity and the relationship to the midwife

The home visit was described as meaningful and informal. The continuity in the relationship between the woman and the midwife emerged when the woman reported that the midwife was familiar with her condition during pregnancy and that the conversation ‘flowed’ immediately. Many described how they continued the conversation with the midwife during the consultations at the public health centre:

‘With the midwife it’s like: “Hello, how did the birth go?” and then we just start chatting.’

‘After all, the midwife knows how things have gone from day one, that makes it a different conversation.’

Many of the women reported that they felt confident in discussing their emotions and experiences. The relationship to the midwife was important and appeared to help reinforce the woman’s sense of coping. One of the women was previously unfamiliar with the midwife, but described how she felt the visit was useful because of the help and support that it provided to her:

‘It wouldn’t have been as easy to sit there and be open about emotions and the birth experience with someone who does not know you a little from before.’

‘When we were talking and I was telling her about it all, I could breathe, I felt relieved.’

Discussion

The women felt confident about their early discharge from the maternity ward when knowing that the midwife would come in a couple of days. Because information about the visit was provided beforehand, the woman could take control of the situation and choose whether or not to make use of this option. We interpret this to mean that predictability was important to the women. A Norwegian study confirms that being able to choose for oneself inspires confidence (17). Pursuant to the Patients’ and Users’ Rights Act, the woman is entitled to choose whether or not to accept a home visit (18).

The fact that the women believed that the visit involved being checked, can be seen as indicating that the women were in a vulnerable situation in their new role. The asymmetry of the situation, in which the woman was in need of the midwife’s help, may also have had an effect. Ruyter and collaborators claim that autonomy is not a constant, but varies in light of the condition and situation of the individual (19). The postpartum woman is in a vulnerable situation, and it may therefore be said that her autonomy may be limited. Establishing a good relationship may help the party involved in the relationship reinforce and regain her autonomy (20, 21). After the visit, none of the women felt that it had constituted a control measure. This might be associated with the fact that the relationship between the woman and the midwife was known, and that the midwife was skilled in building relationships.

All the women felt a need to discuss issues associated with the child’s weight and breastfeeding.

Other research shows that women who have received home visits are more satisfied than those who have been in a maternity ward. This is most likely due to the busy environment at the hospital and the perceived importance of continuity and relational interaction between the midwife and the woman (7, 8). When the woman feels accommodated and trusts the midwife and her skills, she can work to enhance her own insight and self-confidence through this relationship. Thereby, she obtains a better opportunity to make correct and autonomous decisions for herself and her child. This is crucial in the formation of a secure basis for the ties between mother and child, as well as for the child’s health in later life (20).

The need for knowledge and support

At the stage when breastfeeding had barely started, guidance in breastfeeding and feeding was essential. Breastfeeding is appropriate both in terms of child nutrition and bonding. Guidance on breastfeeding in the early postnatal period, combined with home visits, may help sustain breastfeeding over time (22, 23). All the women felt the need to discuss issues associated with the child’s weight and breastfeeding. Other important topics included how to understand the child’s signals, sleep balance and the woman’s own health.

This study shows that the ability to accommodate the child’s needs may help the women to feel a sense of coping. Other studies confirm that the child’s health and well-being are crucial for the mothers’ feeling of confidence (6, 24, 25). Seemingly, when the women felt confident about the condition of the child, they could start thinking of themselves and their own needs. Talking about the birth was important to the women. We interpret this to mean that a discussion of expectations and actual experiences could help enhance the understanding of the birth process. Most of the women described it as appropriate and natural to have this conversation with the midwife, whom they knew from before. However, one woman described it as rewarding despite her not having previous acquaintance with the midwife.

The women felt confident in talking to a midwife they knew from their pregnancy period.

Aune et al. found that during the home visit, attention was focused on perceptions and experiences from pregnancy and birth, more than on future events (9). These findings may confirm that the perception of coherence and understanding of the process are important to the women. This may corroborate the argument that midwifery skills are crucial in the early postnatal period. The women expressed difficulty in preparing adequately for the postnatal period, and felt secure when the midwife could contribute her knowledge and skills. Women may need support to take care of themselves during the first week of the postnatal period (26, 10).

The objective of the guidance is to support the woman and to provide her with better knowledge and skills to enhance her self-confidence and self-efficacy. She can thus better address her new life situation and have power, influence and control of the situation (27, 28). The study appears to show that attention to individual needs and the ability to cope helped promote empowerment in the woman, which is consistent with other studies (8, 9, 29).

Having their partner present during the home visit was important for the majority of the women. Giving both of them the opportunity to discuss their questions and thoughts may help bolster the chances of a positive and equal collaboration in their new family setting (30, 31). If the woman is provided with information to be shared later with her partner, this may result in an asymmetric relationship (19, 20).

Perception of continuity and the relationship with the midwife

The study shows that the women felt confident in speaking with a midwife they knew from their pregnancy period and who had competence with regard to the newborn child as well to them as women. The continuity in the relationship is claimed to help bolster the women’s trust in the midwife’s expertise, advice and guidance, and in addition, the midwife can reinforce the women’s trust in their own resources (9, 32).

Many of the women described how they were overwhelmed by the initial period. The postnatal period is a vulnerable time for the woman because of the major changes that occur in her life (20, 33, 34). The midwife’s skills in communication and relationship-building appear to have an impact on the benefits that the woman derives from the home visit. Razurel et al. emphasise that emotional and social support is more crucial than practical knowledge during the early postnatal period (35). Whether the women were facing challenges or a normal process appeared to have little bearing on the need to obtain support or confirmation from the midwife. The support and confirmation that the midwife gave regarding the women’s choices or understanding of the situation could provide them with confidence, self-efficacy and a sense of coping. These are the main elements of empowerment thinking and can thus be interpreted as evidence that the midwife may help promote empowerment in the woman (11, 28).

The midwife may use her skills and previous relationship with the mother to accommodate her individual needs (32, 36). This could be an opportunity for continuity, even if the woman and the midwife are not known to each other from the pregnancy period. The midwife’s professional skills may help the woman perceive consistency and continuity in her understanding of the process. Studies show that women are greatly satisfied with the information and guidance provided by the midwife during the home visit (7, 8).

Whether the women were facing challenges or a normal process appeared to have little bearing on the need to obtain support or confirmation from the midwife.

The tasks of the midwife and the health visitor overlap during the home visit; for example, both may provide guidance on breastfeeding. They both focus on health promotion and include the family, the woman and the newborn child, but they possess different skills. The midwife’s skills include maternal health, pregnancy, birth and the postnatal period (37). She makes a home visit one to six days after the woman’s discharge from hospital, when she mainly focuses on the woman and the newborn child. The midwife may, for example, help strengthen the woman in her new life situation, which may assist in developing her skills as a mother. The health visitor has competence with regard to children, adolescents and their families (38). She makes a home visit six days to two weeks after discharge, focusing on the child’s health and development within the family. The health visitor may, for example, help in establishing positive bonding and good family relationships.

Better collaboration and understanding between health visitors and midwives during home visits may help better adapt the follow-up options for the early postnatal period to the woman, the child and the individual needs of the family. Moreover, it is likely that better interdisciplinary collaboration and familiarity with each other’s competencies may help ensure a better utilisation of resources and competencies.

Validity of the study

The study elucidates the perceptions and experiences of women from home visits by a municipal midwife in the early postnatal period. This topic has not previously been highlighted in Norwegian studies. The first author is a midwife with experience from community midwifery services. She is familiar with the conditions related to the topic that the study seeks to explore. This knowledge may help lend considerable relevance to the questions in the interview guide, but may also entail the risk that certain elements are overlooked or underestimated. We attempted to reduce this risk by clarifying our preconceptions throughout the research process (12, 16, 39).

The fact that the first author is a midwife may have influenced the women, causing them not to report any negative aspects out of fear of appearing unfriendly. To reduce the risk of such an effect, the first author informed the participants about her role as a researcher prior to the interview. No questions related to midwifery were brought up during or after the interview. Reflections were noted immediately after the interview and used for purposes of validation during the analysis. We believe that undertaking the interviews in the woman’s home environment helps reinforce the validity and credibility of the study (40). The women were recruited by locally employed midwives on the basis of availability, which may have had an effect, in that the women’s attitude to home visits by a midwife was known in advance (15). Efforts were made to reduce this effect by recruiting the women consecutively after the home visits had been undertaken. This may help enhance the validity of the study.

Conclusion

The study shows that a community midwife may help establish a perception of consistency and continuity by maintaining regular contact with the woman throughout the pregnancy until the home visit. The visit may provide an opportunity to accommodate the women’s individual needs, in light of the previously established relationship and the midwife’s competence in maternal health, pregnancy, birth and the postnatal period. When the woman feels that she is regarded as ‘an expert on her own situation’, is permitted to participate in the process of identifying the best solutions and thus remain in control of her own life situation, this may help reinforce her empowerment.

Home visits by a midwife may thus help advance the woman’s perception of coping and reinforce her empowerment, which will promote the health of the woman, the child and the family. The midwife and the health visitor possess different skills, and home visits by both may be appropriate in terms of health promotion. Interdisciplinary collaboration is important, and more research on how best to make use of resources and skills is needed.

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Health authorities work, nationally as well as internationally, to lower the frequency of adverse incidents in the health services (1 – 3). One measure is the establishment of systems for reporting such incidents. The reports will be used to prevent the repetition of unwanted incidents, and the emphasis is on the reports’ contribution to learning. A precondition for learning from adverse incidents is awareness of the existing incidents. 

Research shows that such incidents are underreported, and that the health services lack knowledge on why health professionals fail to report incidents as they happen. Nurses are central actors in the health services. Knowledge of their attitudes to, and experiences of, reporting incidents is thus important when the health services shall meet government expectations to a system and culture for learning from errors (4).

Attention to patient safety

The Norwegian Specialist Health Service Act § 3 – 3, § 3-3a and §4 (5), and The Internal Control Regulations (6) require that the specialist health services have a reporting system and routines for following up incidents. They are also required to give the supervisory authorities (The Knowledge Centre and Norwegian Board of Health Supervision) information on events that have or may have endangered patient safety (5, 6). In line with this nurses are motivated by education and professional ethical guidelines to pay close attention to patient safety.  Point 5.4 in the Code of Ethics for Nurses states: “The nurse reports or gives notification of any situation where patients are exposed to blameworthy or unjustifiable conditions. Loyalty to the workplace shall not prevent this” (7).

Although patient safety has been a priority for several decades, the research field is relatively new. Proper concepts and definitions are being developed. This is one definition of patient safety: “Patients shall not be subjected to unnecessary harm or risk as a result of the health services’ efforts or lack of such” (8, p 6).

It is difficult to report adverse incidents caused by a colleague.

The concepts of “unwanted incident”, “adverse event”, “error”, “reprehensible actions” and “negligent” or “irresponsible” practice are used for incidents in which the patient is in danger or being harmed or is harmed (8). Words like “whistle blowing”, “report” and “incident-reporting” are used about actions that lead to the uncovering of such incidents. 

In this article, we use the concept “incident” in such a way that it encompasses harm and danger for harming the patient. We use the concept “reporting incidents” about reporting such incidents to someone with the authority to do something about it.

Prior research

Research shows that nurses are continuously and actively involved in patient safety work. They expect, from themselves and from others, to be the patient’s advocate and report adverse incidents (9-11). However, reporting such incidents appears to result in formal and/or informal sanctions such as retribution, workplace ostracism, silencing and loss of advancement possibilities or change in employment terms (12 – 18).  There are reports that both formal and informal sanctions have led to physical, psychological and /or social stress, with subsequent reduction in health and work capacity (14 – 18).

The choice between reporting and not reporting is influenced by conditions at both the individual and system level. There may for instance be a lack of familiarity with reporting routines, low consensus on what to report, experience that reporting does not result in anything being done, and a lack of support from the work environment (14 – 17, 19). Research on the psychosocial consequences for those that cause incidents and conditions that encourage and discourage reporting (16-19) is wanted. The purpose of this project was to describe factors that influence midwives’ and mental health nurses’ reporting of adverse incidents.

Method

This study is part of a research project carried out in collaboration with nursing researchers at the Molde University College and James Cook University in Australia. We used both quantitative and qualitative methods (20). We here present the result from the Norwegian quantitative questionnaire.

Sample and recruitment

The inclusion criteria were valid authorisation or accreditation as mental health nurse or midwife. These two groups were specialist nurses the research team had knowledge about. We also assessed the two groups as having comparable professional functions and independence in their professional work in both Norway and Australia.

We recruited the informants from the specialist health services, from maternity/neonatal units and psychiatric units at ten hospitals widely distributed in Norway. The leader of the organisations informed employees of the study and handed out information and questionnaires. The employees were free to choose to respond to the questionnaire online through a web address or on a paper version with an addressed and stamped response envelope enclosed. For reasons of practicability in carrying out the survey, we did not collect data on the number of nurses who were invited to participate. We have therefore not calculated response percentage.

Data collection

The researchers from Norway and Australia collaborated on developing the questionnaire. We also gained permission to use parts of a questionnaire we had used earlier, developed by Firth-Cozens, Firth and Booth (20-21). Through discussion, researchers with long clinical experience arrived at themes important to explore, and agreed on the questions’ central concepts and content. The questions were worded in parallel in Australian English and Norwegian. We used the concepts of “clinical practice” and “unethical practice” to distinguish between incidents related to clinical treatment, such as errors in medication, and incidents related to unethical actions.

Before reporting, one fourth would consider the risk of losing the job.

We first tried out the questionnaire in a pilot study before modifying it for use in the main study. The questionnaire had 31 questions with a total 62 variables and several types of response alternatives. Ten questions were answerable by “yes”, “no” or “don’t know”. One had a Likert scale with the response alternatives “very difficult”, “difficult”, “neutral”, “easy” and “very easy”. Two questions had the response alternatives “very important”, “important”, “unimportant” or “very unimportant”.  For one question the respondents were to range the response alternatives from first to fifth priority. Missing data did not exceed 8 per cent on any question.

Ethical considerations

The researchers recognise the potentially sensitive character of the data, and confidentiality and anonymity became ruling principles in the study. We used an anonymous questionnaire with no coding and no reminder possibilities. The raw data did not contain names of participants or workplace. We assumed that no participant would get into trouble as a result of participation in the study, but should this happen, the participants were given names of members of the research group who would be available. The researchers were not employed and did not have work colleagues in the hospitals from which the participants were recruited. The information pamphlet emphasised that participation in the study was voluntary.  Those choosing to participate consented by returning the completed questionnaire. The study is approved by The Norwegian Centre for Research Data.

Data analysis

Data were analysed using IBM SPSS Statistics version 22 (Boston, USA). We used descriptive statistics with frequency analyses, cross tabulation and comparisons of mean, central tendency and data spread to gain an overview and describe sociodemographic data. Inferential statistics with chi-square test were used to study relationships between midwives and mental health nurses, and between those who reported incidents and those who did not. Independent variables were made dichotomous. We set the significance level at p < 0.05.

Result

53 per cent (70) mental health nurses and 47 per cent (63) midwives responded. All respondents worked in the specialist health services and were 23 years of age or older (n=133).  The midwives had from two to 34 years of work experience (median 12.8 years), and the mental health nurses from one to 40 years (median 10.6 years). There was no significant relationship between profession and years of work experience. As only 18 men participated, we do not distinguish between genders in the presentation of the results. We use the collective designation “specialist nurse “ for midwives and mental health nurses.

Experience with incident reporting

11.9 per cent (15) of respondents stated that they had given the wrong medication at least once during the past 12 months, while 4.0 per cent (5) responded that they had given a wrong treatment to a patient during the same time period (n=126). Of those who had given the wrong medication, 20.0 per cent (3) stated that they had not reported the incident. All who had given a wrong treatment had reported the incident.

65.4 per cent (87) of the respondents had at least once witnessed an adverse unwanted incident caused by others.  There was no significant relationship between experience with such incidents and profession. 50.6 per cent (44) reported the incident, and 44.8 per cent (39) did not. Of the ones that did not report the incident, 76.9 per cent (30) stated that they should have done so, while 11.4 per cent (5) of those who had reported the incident would not have done so again.  Significantly more mental health nurses, 37.3 per cent (31), than midwives, 15.7 per cent (13), had reported incidents  (p=0.003) (n=83).

Awareness of procedures for reporting incidents

With regard to awareness of reporting routines for clinical errors, 13.1 per cent (17) stated that the workplace did not have, or that they were unaware whether the workplace had, procedures for this. There was no significant relationship between awareness of such procedures and profession. There was, however, a significant difference between the professions with regard to awareness of procedure for reporting unethical practice. Of those that answered that they were not aware of any such procedures, 37.0 per cent (48) were midwives and 25.4 per cent (33) were mental health nurses (p=0.001) (n=130).

The reporting process

The respondents stated that it was difficult to report an incident caused by a colleague. As many as 67.7 per cent (90) found it difficult to report an incident when the colleague in question is a nurse. 63.2 per cent (84) stated that it was difficult to report an incident when the colleague is not a nurse.

The question on why it is important to report adverse incidents did not distinguish between incidents caused by the respondent and incidents caused by others. “Improve practice/minimise harm” scored the highest on the ranking of reasons for reporting incidents, but more mental health nurses, 7.8 per cent (10), than midwives, 1.6 per cent (2), ranked this as less important (table 1).

The informants ranked five factors in response to what matters should be attended to for reporting to be an option (table 2). All respondents, 100 per cent (130), said it was important to “focus on what had happened”. 94.6 per cent (123) responded that it was important that the “guidelines be investigated”. 93.8 per cent (122) responded that “the situation first be discussed with the person it concerns” and 93.1 per cent (121) that it was important “ to not assume an attitude of blame”.  The lowest score was related to placing the blame for the incident: 81.4 per cent (105) stated it was important to place responsibility, while 18.0 per cent (23) responded that it was important that “those involved be punished”.  There was no significant relationship between the professions and the given factors (n=130). Table 2 shows the distribution of those who reported, and those who had considered reporting, but did not.

The informants considered 14 statements and responded to their level of importance in whether they reported incidents or not. Figure 1 shows the distribution of the total number of informants. There were no significant relationships between profession and the individual statement. When we compared answers from those who reported incidents with those who did not we found two significant relationships. 23.5 per cent (19) assessed “did not want to cause any trouble” as important and did not report, and 13.6 per cent (11) assessed the statement as important and did report (p=0.023)(n=81). The other significant relationship was the following: Of those considering “not having anyone to discuss the matter with” as important, 32.1 per cent (26) had reported and 39.5 per cent (32) had not reported (p=0.018)(n=81).

Discussion

The purpose of the study was to illuminate factors that influence the midwives’ and mental health nurses’ reporting of incidents. The result shows that many informants have been in situations where they had considered reporting incidents, but that they on some occasions had chosen not to.  The informants responded that it was first and foremost important to avoid harm to patients, but that they also considered their own and colleagues’ situation as well as issues in their work environment before reporting incidents.

Clinical errors in patient safety work

“Improve practice/minimise harm to patient” was the most important ethical justification for reporting incidents – this is seen as in line with national patient safety work, regulations and professional ethical guidelines for nurses (4,5,7). At the same time one may ask whether events that result in obvious harm have highest priority in the patient safety effort. More than half of the informants were unfamiliar with guidelines for reporting unethical practice. That suggests that reporting clinical errors is considered as superior to reporting unethical practice. This is supported by the qualitative part of the study, where the informants expressed a wish for more attention to ethical issues and reporting of unethical practice (17).

There were more mental health nurses than midwives who reported incidents they had witnessed, and knew procedures for reporting unethical practice. More mental health nurses than midwives also ranked “improve practice/minimise harm to patient” lowest. A possible explanation to this is different attitudes in the two professional groups. Attitude is one factor that influences action (23). On the other hand, the decision to report an incident is influenced by more issues than attitude (15, 22 – 26).

Unclear guidelines lead to less reporting

A Dutch study found that awareness raising training in patient safety work led to increased attention to adverse incidents and greater competence in identifying and reporting such incidents. This was, however, not enough to fill the gap between intending to report and in fact doing so (26).  Another explanation may be that the mental health nurses have clearer guidelines and more attention to reporting unethical actions, for instance in relation to the use of coercion.  This supposition is supported by studies that show that unclear guidelines may lead to less reporting (22, 24, 25).

Perceived risk of sanctions may influence the decision to report incidents.

Patient autonomy – self-determination - was given high priority. One may ask why autonomy is emphasised and given priority, while preserving patient integrity and mutual respect, possibly a consequence of autonomy, has lower priority. The reason may partly be that the nurses had to rank several response alternatives, but it is nevertheless interesting that this was given such low priority. Being met with respect is important in clinical treatment. Official reports point out that the users to a greater extent shall be involved and have influence when receiving health services. An absence of respect and co-determination may threaten the right to participation (27).

Consider consequences before reporting

Despite high priority of “improving practice/minimising harm to patient” the specialist nurses assess the work environment situation before reporting adverse incidents.  Almost all respondents stated that it is difficult to report incidents caused by a colleague and that they before such reporting will assess conditions that concern the relationship with work colleagues (Table 2). They made a priority of following recognised procedures such as “talking to those involved” and ensuring that “an attitude of blame was not assumed” to those involved. The informants are in line with the health authorities on these issues. The purpose of reporting incidents is not to point to scapegoats and place blame, but to increase patient safety (4, 17, 28).

We do, however, see a tendency that the specialist nurses are not quite convinced that the attention to patient safety and learning from errors is sustained in practice. Before reporting, nearly all informants would consider issues that concern any colleagues involved, whereas one fourth would consider “the risk of retribution” and “the risk of losing one’s job” (Figure 1). That this risk is real is supported by other research (12, 13, 18).

Placing the responsibility with the individual

A study carried out by The Norwegian Nurses Organisation found that 19 per cent of the nurses knew of negative consequences of reporting adverse incidents in own workplace, and that 13 per cent had experienced negative reactions from management or colleagues following an incident report (30). This is in line with the tendency in this study. Perceived risk of sanctions may influence the decision to report incidents. Based on this finding one may ask whether the responsibility for adverse incidents and reporting such incidents to a too great extent is placed with the individual nurse, while less attention is paid to complicated causal relations and problems caused by system failure. If this is the case, this may help explain why the specialist nurses so strongly emphasised concern for the individuals involved, and that they expressed empathy with their colleagues and pointed out that “it could have been me”. This may also help explain why three fourths of those that did not report incidents, responded that they ought to have done so, and that one in ten of those who had reported, would not do so again.

Do not want to be overly dramatic

The tendency is supported by studies that show that nurses, who have been involved in adverse incidents, have experienced a lack of support from their work environment. The studies also found that the nurses were alone in deciding whether or not to report adverse incidents. Nurses also reported having been subjected to formal or informal sanctions from management or work environment (24, 26, 28). It seems as if the informants were caught in a conflict of loyalties if concerns for the patient, the colleagues and the nurse conflicted.

Prioritising between the various concerns seemed to be a difficult balancing act. This supposition is strengthened by the finding that more nurses who had not reported, than nurses who had reported, responded that they “did not want to cause any trouble”. The supposition is also strengthened by that three fourths of the informants answered that it is important “not to overdramatise the incident”. The statement that scored the highest as a factor that may hinder reporting was “having no one to discuss the case with” (Figure 1). This suggests that the decision to report an adverse incident is based on complex deliberations and that the choice is difficult. One may ask whether there is too little talk about experiences of incident reporting, and whether there is a lack of openness to and acceptance of the fact that incidents do occur.

The decision to report an adverse incident is based on complex deliberations.

Despite increased attention to the development of patient safety cultures (1 ,4) the results from this study are still relevant. There are a limited number of studies from a Norwegian context in which the researchers try to understand why health personnel do not report adverse incidents. It is important to explore what kind of influence psychosocial aspects have on such reporting, what influence reporting systems and guidelines have on the reporting frequency, and what types of incidents that are reported. These factors may all contribute to increased understanding of how such reporting is related to individual concerns, work environment contexts, adverse incident reporting systems and management.

Methodology critique

The questionnaire was partly self-developed and not pre-validated, and questions may have been misunderstood or responses misinterpreted. One strength of the study is that several questions were tried out in a pilot study, and that the questionnaire was modified based on this pilot study. We tried to avoid ambiguities around concepts through the information that accompanied the questionnaire, and an explanatory paragraph to introduce the questions. Small spread in the material and few missing data may indicate that the informants have comprehended the questions and that the issues questioned were familiar.

Self-reporting of a phenomenon does not necessarily make the whole picture emerge. The respondent may have “forgotten” situations or does not wish to reveal certain things. For instance, the desire for a positive presentation of own profession may influence the informants to respond in accordance with recognised attitudes. Adverse incidents and reporting thereof are sensitive subjects and although the demand for anonymity was upheld, some may nevertheless have refrained from responding to some questions. In order for the study to be practically possible to carry out, we did the study on a selective sample. We did not collect data on how many were invited to participate.

The sample consists of informants from ten different health service institutions, and there are similarities between the sample and the professions in the way they are composed in professional life. There are more women than men, more mental health nurses than midwives, and more male mental health nurses than male midwives. It is possible that the responding specialist nurses have a greater interest in, or more experience from, reporting adverse incidents.

The findings must be interpreted as saying something about these specialist nurses’ priorities and not necessarily as valid for all nurses in general, or for the groups of specialist nurses in the sample.

Conclusion

The study shows that the participants gave the patient’s right not to be harmed high priority when deliberating whether to report an adverse incident. They based the decision of reporting or not reporting on complex considerations and were to a great extent influenced by cultural and organisational issues. A culture of openness to adverse incidents and reporting is important, as is support for those involved without placing blame or risking sanctions. In working with increasing the reporting frequency, the management’s task is to promote a work culture that accepts that errors are made, that welcomes reports, and that focuses on complex causal factors.  More knowledge on what encourages and what discourages reporting is needed. Discussing the direction of the patient safety effort and establishing consensus as to what to report and what should be solved in other ways, are important. Those who report incidents should find that the report is useful and leads to changes and improvement for the patients.

We thank professor Øyvind Kirkevold for good ideas and help with the statistical analyses.

References

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The urine dipstick is a tool much used in diagnosing urinary tract infection (UTI) among older adult patients in nursing homes and home care services, but is it reliable? In this literature study we try to answer this question and discuss alternative approaches.

UTI is the most common infection in the elderly population, with the highest prevalence in nursing homes (1). UTI is a collective term for infection in the urinary tracts, and the patient has usually been infected by his or her own colonic bacterial flora. UTI is frequently accompanied by painful symptoms and, in the most serious cases, leads to sepsis and death (2). To initiate treatment of UTI among adult women and men, a medical history is usually sufficient. The most important tool in diagnosing UTI is the examination of a urine sample, but that may be skipped if the symptoms are clear and recognised by the patient based on earlier experience (3).  

Difficult to diagnose

The urine sample collection method must be knowledge based and requires special attention in the case of patients who use incontinence products or urinary catheter (4,5). In the elderly the diagnosis UTI may be difficult to arrive at, as the usual symptoms are not always present. The high proportion of patients with asymptomatic bacteriuria (ASB) (2) further complicates such diagnostics. The prevalence of ASB in nursing homes is estimated at 25-50 per cent for women and 15-40 per cent for men (6). The difference between UTI and ASB is presented in Table 1 (2, 7-10). As opposed to UTI, ASB shall not be treated with antibiotics. Medication side effects are more common among older than younger adults (11), and proper use of antibiotics is therefore necessary to avoid unnecessary side effects, avoid developing antibiotic resistance and to reduce costs (12).

In the care for the elderly today, urine dipsticks are often used when UTI is suspected (2). A urine dipstick is a strip of paper with chemicals added, to be immersed in the urine.  The strip will change colour if the urine contains bacteria, blood or sugar (13). Figure 1 describes briefly the significance of various urine strip reactions (4, 14-16). Urine dipstick tests are used at the suspicion of UTI based on the typical UTI symptoms. Urine dipsticks are also commonly used at any change in the condition of the elderly, anything from weeping to increased distress (17). 

The urine dipstick was developed to diagnose a.o. UTI. It is easy to use, it is inexpensive, and a tool that yields quick results. Urine dipsticks have been on the market for 25 years and many studies have assessed its accuracy in discovering UTI and bacteriuria in various populations and age groups (18). A urine dipstick can tell us whether there are leukocytes or nitrite in the urine, but it cannot distinguish between UTI and ASB.  When we know that ASB is very common among the elderly, using only the urine dipstick to arrive at a diagnosis probably leads to much overtreatment.

Are urine dipsticks reliable?

The literature supports that overtreatment of UTI is a known problem (19). A study showed that when doctors used only the urine dipstick test to diagnose classical lower urinary tract symptoms, 47 per cent of the patients received unnecessary antibiotics, while 11 per cent did not receive proper treatment (20). Most studies on urine dipsticks are, however, done on other population groups than the elderly. When we know that there is a high prevalence of both UTI and ASB in the elderly population, and that it is important to distinguish between the two, it is interesting to study the reliability of urine dipstick tests for elderly patients. The research question for this study was thus the following:

Is the urine dipstick a reliable tool for diagnosing UTI in elderly patients in nursing homes and home care services?

Method

This literature review is based on quantitative primary studies that assess the urine dipstick as a tool in diagnosing urinary tract infection in elderly patients in nursing homes or home care services. The inclusion criteria chosen for the study were that the articles be primary studies, the sample populations patients over 65 years of age, the articles written in English or a Scandinavian language, and the studies addressing the reliability of the urine dipstick as a tool in diagnosing UTI. We did not set any limitations with regard to the articles’ year of publication, as it was important to find all research done on this subject. We performed systematic searches in the databases PubMed, Cinahl, Embase and Cochrane in January 2015. The following search words were used: “urinary tract infection*”, UTI, reagent strip, urine dipstick, dipstick urinalysis, Urine* adj stick* TW, combined with “residential facilities, nursing homes, long term care, homes of the aged, primary care”. 

The searches were somewhat different in the different databases due to the different construction of the databases. A filter was finally added so that the articles dealt only with persons over 65 years. We found a total of 100 articles in the various databases, and at a review of the articles 20 duplicates were removed. The remaining 80 articles were screened by reading headings and abstracts. A total of 65 articles were excluded as they turned out not to be research articles, not about the elderly, not about urine dipsticks, not about UTI or were about urine dipstick testing of incontinence products or urinary catheters. A total of 15 articles were read in full, but of these 11 were excluded, as they did not deal with urine dipstick testing, dealt with other tools or did not deal with the elderly population. We went through the reference lists of the articles found, and included another two articles in the study. The flow chart in figure 2 illustrates the search and selection process. 

We included six articles in our literature review. We analysed the articles by entering them in a literature matrix (21-26) and assessing them according to the PRISMA criteria (27). We categorised the findings according to the country in which the study was performed, type of urine dipstick used, number of participants, study design, the purpose of the studies and the results of the studies.

Results

The systematic literature search resulted in a review of six articles addressing the reliability of urine dipsticks in diagnosing urinary tract infection in elderly patients. The included studies compare urine dipstick test results and urine culture results for elderly patients. The urine culture is used as a gold standard to assess the accuracy of urine dipsticks. The results from the six included studies are presented in table 2 as a literature matrix of the included studies. The studies look at leukocytes and nitrite as indicators of bacteriuria and assess the urine dipstick’s sensitivity, specificity, positive predictive value (PPV) and negative predictive value (NPV). Diagnostic sensitivity and specificity indicate the test’s ability to identify healthy and sick individuals in a group, while PPV and NPV indicate the chance of the patient being ill when the test is positive and the chance of the patient not being ill when the test is negative, respectively. The results are presented in per cent so that an error free urine dipstick would show a sensitivity, specificity, PPV and NPV of 100 per cent. Table 3 is a compilation of the results for sensitivity, specificity, PPV and NPV in the included studies (21 – 26).

Sensitivity and specificity

Sensitivity indicates the urine dipstick’s ability to discover whether the patient has bacteriuria. Sensitivity varied considerably in the included studies. Juthani-Mehta et al. (23) reported that a urine dipstick that showed presence of nitrite or leukocytes or both, had a sensitivity of 100 per cent. On the other hand, Arinzon et al. (22) reported a sensitivity of 72 per cent. All studies do not report on the sensitivity to nitrite and leukocytes alone, but in the studies that do, the results vary from 69 – 98 per cent on leukocytes and from 54 – 83 per cent on nitrite.

As opposed to sensitivity, specificity is used to describe the urine dipstick’s ability to uncover whether the patient does not have bacteriuria. The specificity varies in the various studies. Juthani-Metha et al. (23) looked at cases where the urine dipstick is positive for leukocytes and nitrite, or for either one. The specificity is then 20 per cent.   Ducharme et al.’s Canadian study (26), however, reports a specificity of 70 per cent. When only leukocytes are examined, the specificity is 26 – 81 per cent. Nitrite, on the other hand, has a specificity of 48 – 100 per cent.

Positive predictive value and negative predictive value

Positive predictive value (PPV) and negative predictive value (NPV) tell us about the probability of the urine dipstick giving a correct result. All the studies, except Evans et al. (25), say something about PPV and NPV when both leukocytes and nitrite are present, or when leukocytes or nitrite alone is indicated on the urine dipstick. PPV shows a percentage from 31 – 93 in the various studies, whereas NPV varies from 49 to 100 per cent.

Other relevant findings

All six studies included, except Evans et al. (25), looked at both leukocytes and nitrite as reagents. This indicates that either nitrite or leukocytes were present, or that the urine dipstick reacted to both variables. Several studies also looked at whether there were indications of proteins and blood. With respect to protein and blood, none of the studies showed that these reagents have any significance in establishing bacteriuria if this is indicated on the urine dipstick.  Indications of protein and blood are thus not reliable indicators of UTI. Further, Sundvall et al. also compare manual reading of urine dipsticks with an automatic analyzer of the type Clinitek 50. The study shows that the test method does not make a difference, the results are equally good or bad with manual as with automatic reading.

Little research on the subject

UTI is one of the most common bacterial infections in the older population. Nevertheless, UTI is often overdiagnosed and overtreated among the elderly based on unspecific clinical indications and symptoms and a high prevalence among the elderly of ASB (5) that should not be treated, according to clinical guidelines (7, 9, 28). Although a urine dipstick is unable to distinguish between an ASB and a UTI, urine dipsticks are commonly used to diagnose UTI in elderly patients. Urine dipsticks are frequently used in the clinic, and antibiotic treatment may be initiated based on a positive urine dipstick test until a urine culture result is available (26). As urine dipsticks appear to be much used in the clinic and the results of urine dipstick tests have a crucial role in diagnosing UTI in the elderly, it is interesting to see how reliable urine dipsticks are. The purpose of this literature study was to assess the reliability of urine dipsticks in diagnosing UTI in elderly patients in nursing homes and home care services. In spite of extensive and systematic literature search, we found only six research articles dealing with this subject. This low number makes one wonder, considering the widespread use of urine dipsticks.

Much research is done on urine dipsticks in other populations such as children, working adults and predominantly on women.  These studies give various results depending on age group and patient criteria (21). Much research is done on pregnant women as a group, and in this population urine dipsticks are recommended used to discover bacteriuria (18). There is, however, not much research on the combination of elderly and the use of urine dipsticks; this is supported by Bevridge et al. (5). This literature study is therefore an important contribution to knowledge on the use of urine dipsticks in a population much plagued with UTI, but with a high prevalence of ASB.

Using urine dipsticks in the clinic

When the general condition or behaviour of an elderly patient changes today, UTI is generally the first suspect. A urine dipstick is a simple, inexpensive and non-invasive tool for confirming or excluding whether a patient has UTI, and is therefore frequently used. If a urine dipstick proves positive for nitrite and leukocytes, common practice is to contact a physician (17), oftentimes by telephone, and antibiotics are prescribed (29).

The widespread use of urine dipstick tests in Norway is not surprising. Norwegian guidelines for prescription of antibiotics in the primary health services (7) state that testing for leukocytes and nitrite on a urine test strip may help establish whether an infection is present. The guidelines also state that microscopy of the urine will not yield any additional information to the use of urine dipsticks, that leukocytes have good test value (sensitivity and specificity are around 85 per cent), and that a positive nitrite test corresponds with gram-negative strings when the urine has remained four hours in the urine bladder (specificity 96 per cent) (7). In other words, Norwegian guidelines have great faith in urine dipsticks as a diagnostic tool.

Nurses have a central role

One study shows that doctors often choose to prescribe antibiotics on the basis of a positive urine dipstick test until a culture is available (30). This approach has, however, turned out to have a margin of error of 20 to 40 per cent. Such erroneous diagnoses are very unfortunate as treating older adults with antibiotics may lead to the development of resistance and unwanted side effects. In worst case it may keep one from discovering other, underlying, causes of the patients’ symptoms (2, 10).

The nurse has proved to have a central role in diagnosing UTI in the elderly. The nurse observes the patients’ condition and symptoms on a daily basis, prescribes the urine culture, uses the urine dipstick and influences the initiation of antibiotics (17). That is why it is important that nurses have knowledge on UTI in the elderly, so that they may make the correct assessments. Part of this assessment is to be able to interpret and know the limitations of the urine dipstick.

Is the urine dipstick a reliable tool?

The more recent studies included in this literature review (21 – 23, 26) emphasise that the urine dipstick is not a good enough tool in confirming bacteriuria in elderly patients.  The studies point to results with many false positives and with low sensitivity and specificity, i.e. urine dipsticks are not reliable in distinguishing between health and illness with regard to UTI. Duchrame et al. (26) found that 61 per cent of patients with a positive urine dipstick test did not have bacteriuria according to the urine culture. Sundvall et al. (21) showed that with a positive urine dipstick test the probability of bacteriuria is just 51 – 73 per cent.

Deville et al. (31) have done a meta-analysis where they conclude that urine dipsticks alone may be useful in all populations to exclude the presence of infection when there are no positive findings of nitrite or leukocytes. Even if this meta-analysis is based on a small number of articles on the elderly, the findings correspond well with the findings in the articles included in our literature review. The studies included have a NPV from 88-100 per cent with the exception of the Arinzon et al. study (22), which has a NPV of 49 per cent.  This indicates that the urine dipstick is not a very reliable tool for establishing UTI, but that it is more reliable for excluding UTI in elderly patients.

No better tools

Even if the urine dipstick is not very reliable in diagnosing UTI in the elderly, we have not so far found a better tool. A series of studies have been done to assess the reliability of other tools in diagnosing UTI. The McGeer criteria and the Loeb criteria are both short check lists for diagnosing UTI with the help of clinical signs such as rising temperature, burning pain at urination, frequent urination, suprapubic pain, change of character of urine, throbbing tenderness over kidneys, visible blood in the urine, urine incontinence and deterioration of mental condition (8, 32). Juthani-Mehta et al. did a study in 2007 where they assessed whether nursing home patients with suspected UTI met the Loeb or McGeer criteria, and whether they were in line with the laboratory results (33). Here the McGeer criteria turned out to have a sensitivity of 30 per cent, specificity of 82 per cent, PPV of 57 per cent and NPV of 61 per cent. The Loeb criteria showed almost the same results – that is, not very high reliability in diagnosing UTI.

Juthani-Mehta et al. (34) did a study where they identified clinical signs in connection with bacteriuria and pyuria (white blood cells in the urine) in nursing home patients with suspected UTI. They showed that dysuria (painful urination), change in character of urine and change in mental condition were related to bacteriuria combined with pyuria, but this study gave no better results than diagnosis with urine dipsticks.

Sundvall et al. (35) studied whether higher concentration of Interleukin-6 in the urine could indicate whether the patient had UTI with non-specific symptoms. Interleukin-6 is a mediator for infection and plays an important role in the regulation of the immune system. The substance can be examined with a urine analysis. This study showed that neither increased concentration of Interleukin-6 in the urine or the use of urine dipsticks is suitable as indicator of unspecific symptoms and bacteria in the urine in the elderly population.

Implications for practice

As mentioned, the urine dipstick is a quick, non-invasive and inexpensive tool, but apparently not very reliable. As we do not seem to have any other, better, tool, it may be appropriate to continue using the urine dipstick, given that the method is used properly and interpreted correctly. The nurse must know the limitations of the urine dipstick.

In Figure 3 (4, 7-10, 13-16, 36) we attempt to give an overview of the urine dipstick’s limitations with regard to the factors that may give false positives and false negative answers. Such knowledge will be of great value to the nurse in assessing the reliability of a urine dipstick result.  Figure 3 may also be used as a clinical guide for when to use urine dipsticks and how to proceed after having collected the urine sample.

Strengths and weaknesses

This literature review’s greatest weakness is that it is based on merely six articles as little research has been done on elderly patients and the reliability of urine dipsticks. It is therefore difficult to draw any major conclusions. All studies included are published in large and acknowledged peer-reviewed journals that vouch for the quality of the research. We will, however, note that in the oldest study included the description of its methodological process was rather weak.

One strength of our study is that the included studies use only two types of urine dipsticks: the brands Multistix from Bayer or Chemstrip from Roche. The studies are further uniform in that they have used urine culture results as the gold standard, and all have used the same limit of > 105 bacteria/ml urine as significant bacteriuria. This strengthens the comparisons made in this literature review. The findings of the various studies can very likely be transferred to Norwegian conditions. The studies are performed in six different countries. The largest study is done in Sweden, a country we may compare ourselves with regarding the structure of the care for the elderly and the older population. In all the studies reviewed, the urine samples were cultured. There it was established that the bacteria findings were similar and corresponded with the literature in the field.

Conclusion

The urine dipstick does not appear to be an appropriate tool for diagnosing UTI in the elderly as it is not very reliable and cannot distinguish between a UTI and an ASB. We do not, however, seem to have any other better tool. Nurses have proved to have an important role in urine sample administration, use of urine dipsticks and initiation of antibiotic treatment for UTI in elderly patients. It is therefore important that nurses know the limitations of a urine dipstick test and indications for use.  They also need to know how to interpret the urine dipstick.  Urinary tract infection is very common among elderly in nursing homes and home care services, but due to difficulties in diagnosing this population group, there is great overtreatment with antibiotics. Such overtreatment is unwanted, as it leads to development of resistance, unwanted side effects and increased costs. Further research on differential diagnostics between UTI and ASB will be crucial in the future.

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Cardiac arrest is defined as cases where ”patients without vital signs … are either treated with defibrillation of a lethal arrhythmia or need cardiopulmonary resuscitation to survive” (1). Cardiac arrest is feared among patients in hospital, also in intensive care units. Due to comorbidity and organ failure (2), patients in intensive care wards are already more prone to cardiac arrest and have poor prognosis in spite of performed cardiopulmonary resuscitation (CPR). Intensive care patients are continually monitored and surrounded by high level medical and nursing expertise. Cardiac arrest can thus be discovered and treated quickly (3). International research shows that the prevalence of CPR among intensive care patients varies between 0.6 – 8 per cent per hospital admission (4-7), while survival following CPR varies between 0-79 per cent (4). There are no studies of prevalence and survival following cardiac arrest in Norwegian intensive care patients.

Important with complete registering

Quality registries are tools for evaluating activity and for planning and implementing quality improvement. The establishment of internal quality registries and collection of data for such registries are authorised by The Health Personnel Act § 26 (8). The Norwegian Cardiac Arrest Registry serves under the Norwegian Cardiovascular Disease Registry, a national quality registry with its own regulations (The Health Registry Act §§ 8, 11) (9). Cardiac arrest is thus a condition for which nominal reporting to a registry is mandatory in line with cancer and births. An internal quality registry is a prerequisite for the reporting of data to the national registry. The internal quality registry for cardiac arrest in hospitals opened January 1 2013 and followed upon earlier local initiatives in the hospitals that now make up Oslo University Hospital (OUS). 

For the registries to fulfil their function, the registering of cardiac arrest must be complete. The comprehensiveness of the reporting must be controlled to establish whether the registries fulfil this function. A Swedish study of 103 quality registries points to that recent implementation of a registry may give incomplete reporting (10). Knowledge of the quality of and the level of reporting in registries is important to nurses who want to use the registries for evaluation, development and improvement of practice. The purpose of the study was thus to take a closer look at prevalence and registration practice of cardiac arrest in the intensive care units at OUS in order to validate and improve the registry. We wanted to contribute with knowledge of the usefulness of carrying out this type of audit of a quality registry.

Research questions and method

We formulated three research questions to respond to the purpose of the study:

1. What is the prevalence of CPR?
2. How many patients survive cardiac arrest in the intensive care wards?
3. To what extent is performed CPR registered in the intensive care units’ patient journals, patient administrative coding and the internal cardiac arrest registry?

The study had a cross-sectional design and we examined data for all of 2013 at the 14 intensive care units at OUS that offer ventilator treatment to investigate the prevalence of cardiac arrest. We collected data from wards at all four somatic OUS localisations: Aker Hospital, The Norwegian Radium Hospital, Rikshospitalet and Ullevål Hospital. The intensive care units all serve local, regional and national functions and cover medical and surgical conditions. The study also includes both paediatric and adult intensive care units with no limitation in age or cause of admission. There were too few children to isolate this as a separate subgroup and they differed markedly from the rest of the study sample with regard to survival. They are therefore not included in the analyses of patient characteristics, survival and length of stay. Patients from neonatal intensive care units are not included in the study.

The study sample was made by a triangulation of diagnoses and procedure codes taken from the patient administrative systems PasDoc and SPISS (Figure 1) (11). We then examined identified patients’ journals, both doctors’ and nurses’ notes. Patients with cardiac arrest or CPR not documented in their journal were excluded. We compared the findings with the patients in The Cardiac Arrest Registry. Patients from the registry that were not already identified were added to the study sample (Figure 2).

Inclusion criteria

The Cardiac Arrest Registry’s criteria for inclusion comprise patients that are lifeless and treated with either chest compressions for more than 30 seconds or attempts at defibrillation (12). Repeated cases of cardiac arrest treated with > 1.5 hours intervals qualified for separate registrations.  Patients with cardiac arrest at several occasions are included only once in the registry, but the number of CPR is registered.  Induced cardiac arrest as part of procedure, such as ventricular fibrillations at the introduction of a heart starter, is not included. We used the same criteria for inclusion in this study.

Data collection

We collected data for the variables age, gender, ward, time of admission, CPR and discharge, location for CPR, survival to discharge from intensive care ward and hospital, as well as to where the patient was discharged. Data were collected from patient journals. We registered whether cardiac arrest or CPR was documented in the doctors’ and nurses’ notes, whether the incident was coded with diagnosis and procedure code in the patient administrative system, and registered in The Cardiac Arrest Registry. Documentation of the patient in all five systems was considered a complete registration. Time for CPR is given in whole days, as there were few exact times given for CPR in the patient journals.

Ethics

The concerned heads of clinics and the data protection official at OUS have approved the study (2013/18062). The Regional Committee for Medical and Health Research Ethics (REK) assessed the project as not needing need approval from REK as it qualified as quality assurance of the health services, case number 2014/1017. Data were anonymised prior to analyses.

Results

In 2013 the 14 intensive care units reported 15 101 admissions distributed on 25 909 bed days. Fifty eight per cent of the hospitalised patients were men. The prevalence of treated cardiac arrest was 0.8 per cent per admission, or 4.5 per 1000 bed days.

The CPR episodes were found at 12 of the 14 wards. The majority of the patients had only one CPR episode, and ten patients experienced two or more episodes of CPR. The age of the patients with cardiac arrest varied between 0 – 91 years. Of the 99 patients we studied, eight were less than 18 years. These children were given CPR at two intensive care units. The majority of the 91 adult patients were men.  There was no difference in age between the genders (Table 1).

Length of stay and CPR

The majority of patients were given CPR during the two first days in the intensive care unit. A greater number of men than women suffered cardiac arrest within two days, but this difference was not significant (Table 1). For patients who died, time from admittance to CPR was somewhat longer compared to those who survived to discharge from hospital (Table 2).

Time from CPR to discharge or death was significantly shorter for women than for men (Table 1). Those who died had significantly shorter time from CPR to discharge than the survivors (Table 2).

The majority of cases of CPR, 93 per cent, were performed in the intensive care ward. The remaining 7 per cent of the cases were performed during transport to radiological examinations or shorter surgical procedures performed outside the ward. These patients were also admitted to the intensive care unit.

Survival

Around half of the adult patients survived to discharge from intensive care unit and hospital. Significantly more men survived to discharge from both intensive care unit and hospital (Figure 3).

Following discharge from intensive care units where CPR was performed, surviving patients were most often moved to another intensive care unit, either within the hospital or to another hospital. A minority of the patients were moved to a bed ward following cardiac arrest (Table 3).

Registrations

We found 836 diagnosis codes and 140 procedure codes related to cardiac arrest and CPR. A great number were repeated registrations without repeated cases of CPR or cardiac arrest prior to arrival at the intensive care unit. Some cases were excluded as the diagnosis was impossible to confirm in the patient journal. Some of the diagnoses for ventricular arrhythmia were excluded as the patient had had e.g. VF introduced as part of the procedure. The Cardiac Arrest Registry had 96 patients in the study period. Sixty-five of these were not intensive care patients. Of the remaining 31 patients there were nine cases of CPR that had not been identified by diagnosis or procedure codes. These were also included in the study sample (Figure 2).

We expected to find registrations in all five systems for all the 99 patients with cardiac arrest, but found only 326 of 495 expected registrations (66 per cent). The greatest omissions were found in The Cardiac Arrest Registry and in the diagnosis and procedure codes. But also the doctors’ and nurses’ notes contained significant omissions with regard to registration. Only eight of the 99 patients had registrations for all the five registration possibilities mentioned above (Figure 4).

Discussion

This study has surveyed the prevalence and registration of  CPR, and survival, among intensive care patients in OUS. In 2013 99 children and adults were registered as having received CPR distributed on 117 cases. Forty-eight per cent of the adult patients survived to discharge from hospital.

The population in this study is comparable in age and gender to other similar studies (2, 3, 13 – 19). Prevalence of cardiac arrest varied in other studies between 0.6 – 8 per cent per admission (4 – 7). In our study we found a prevalence of 0.8 per cent. In spite of an extensive mapping process to find CPR at the intensive care units it is uncertain whether all cases of treated cardiac arrest at the intensive care units are in fact included.

Gender differences

Three quarters of the patients in our data had cardiac arrest during the two first days following admission to the intensive care unit. In a study by Rozen et al., two thirds of the patients received CPR during the two first days (1). If most cases of cardiac arrest are caused by cardiovascular disease, this is in keeping with the usual trajectory after acute heart attack and reperfusion. More men than women had cardiac arrest during the first two days. This difference may reflect that women and men have cardiac arrest for different causes, and may also explain some of the gender difference in survival. 

A systematic study by Hasan et al., including studies of a half million cases of cardiac arrest independent of location, showed that men have higher prevalence of cardiac arrest when the cause is cardiovascular disease (20). The cause of each individual cardiac arrest was not part of our study. The cause of the cardiac arrest is registered in our internal quality registries, but is coded only as “presumed cardiac” or “other”. The codes are based on best estimates from the treatment team and are rarely reassessed. In a study of cardiac arrest at St. Olav’s Hospital they found that systematic work after-the-fact to clarify cause resulted in a reassessment of the cause of cardiac arrest in one third of the cases (21).

We found that the patients in this study who died following cardiac arrest had significantly shorter time from CPR to discharge. This may be attributed to many patients dying in connection with the CPR procedure or that they later deteriorate to the point where treatment is discontinued.

Higher survival for men

In this study survival to discharge from hospital was 48 per cent. In a systematic literature review by Efendijev, four of 18 studies had similar results with a survival of 47 – 79 per cent. The remaining 14 studies reported a survival rate of 0 – 27 per cent (4). In our study we found that survival to discharge from hospital varied significantly between the genders. This significant difference is also found in Tian et al. who reported a 16.4 per cent survival for men compared to women’s 15.3 per cent (14). Other similar studies do not report survival by gender (2 – 4, 6, 15 – 19, 22 – 26).

Low occurrence of registering

Only 32 per cent of the study sample was registered in The Cardiac Arrest Registry. Quality registries will frequently have a certain degree of underreporting, and analyses of the extent of reporting must be performed to ensure the validity of the data. We used registered diagnoses and procedures in our survey, but there were significant omissions in the documentation in these sources as well. The written journal turned out to be the most reliable registration, but journal searches were limited for technical reasons. It was thus not possible to use patient journals as a primary source for identifying patients. The Swedish National Registry for Cardiac Arrest outside of hospital did a manual search of a sample of ambulance journals and found that 75 per cent of the cases of cardiac arrest were registered. The registry had then been up and running and well known for more than 18 years (27).

We performed our study in The Cardiac Arrest Registry’s first year of operation, but it is nevertheless surprising that only one in three patients were registered. Maybe information on such mandatory registration is easily overlooked in acute care settings with constant changes in treatment methods, equipment and routines. Another reason may be that such registration is simply forgotten in the aftermath of treating patients.

Codes were overreported

This study found a significant overreporting of codes, mostly as a result of repeated registration of the same case of CPR.  There were examples of patients with 10 – 15 repeated diagnoses for the same cardiac arrest. This overreporting gives a false image of the hospitals’ activities and weakens the foundation for administrative decisions and resource use based on the coding. The great discrepancies in a review of one single, but nevertheless dramatic and resource intensive event, suggest a need for a review of the coding practice at the hospital.

In addition to overreporting there was also a significant underreporting of cardiac arrest in the patient journal, procedures and diagnosis coding. In most cases we found documentation in the patient journal from doctors and nurses. But when 13 of 99 patient journals are missing documentation from either doctors or nurses on CPR performed during the intensive care stay, this shows that documentation of CPR is incomplete even in the patient journal. According to the Health Personnel Act § 40, documentation of necessary and relevant information in the patient journal is a requirement (8). A potentially life-threatening situation and treatment, such as cardiac arrest and CPR, clearly fall within this category. Any omission of relevant information undermines the patient journal as a source of information and may constitute a threat to patient safety.  Just like overreporting, underreporting of codes gives an incorrect picture of reality. Using codes as documentation of activity, e.g. as a basis for this study, becomes difficult.

Underreporting may have financial consequences

Diagnosis and procedure code were given in 46 per cent and 66 per cent of the patients respectively. This underreporting of activity may also have financial consequences for the unit in the estimation of diagnosis related groups (DRG) and activity based financing. We found nothing indicating systematic differences in who was registered and who was not registered in the various systems (based on age, gender and ward).

The findings of both over- and underreporting of diagnosis and procedure codes show that there is a potential for improving documentation of conditions and treatment. Missing documentation in The Cardiac Arrest Registry, patient journal and diagnosis and procedure codes signalises a need to review and improve documentation practice for CPR. Having good quality figures on the incidence of cases of cardiac arrest is crucial for allocating sufficient resources to treat these patients.  Cardiac arrest is a serious complication for intensive care patients. The prevalence of cardiac arrest in intensive care units is low. Nevertheless, the potential for a good result is so high that it is important to practice advanced cardiopulmonary resuscitation regularly to maintain knowledge and skills on the subject.

Limitations of this study

This study has several limitations. The study’s framework gave us no possibility to follow up final survival among the patients. Due to the great number of omissions in all registration systems it is still possible that the study sample is not complete, in spite of triangulation. The study’s retrospective design and moderate sample also constitute limitations. We were dependent on reported diagnoses and procedure codes, which turned out to correspond poorly, to identify the sample. The results of this study show the importance of validating quality registries so that they may fulfil their purpose. This study has shown that the internal cardiac arrest registry, after one year of operation, has a preliminary weakness in registrations to map prevalence of cardiac arrest. Organising a good system for registration is a learning experience.

Health registries and data from patient administrative systems are used for evaluation and dimensioning of the health services, as well as for research. Great discrepancies between reported and real cases may lead to erroneous interpretations and wrong decisions. Health registries should be reliable sources of updated information on the health services, causes for illness and health conditions (28). Nurses participate in the cardiac arrest team and have a documentation responsibility, but they must also contribute to the information that ends up in the registries, and ensure that the documentation is correct. 

Good registries will be an important source for evaluating and developing nursing practice in the future. They will also make up the basis for nursing research. In the absence of good electronic solutions, the quality of many registries today depends on the personnel treating the patient, and who also register data. In this job the nurse frequently has an active role. Improved knowledge of existing registries and an added effort in the registration work will yield new knowledge to benefit the patient.

Conclusion

The study shows that barely one in one hundred admissions to intensive care was complicated by cardiac arrest and treated with chest compression and /or attempts at defibrillation. Of the patients receiving CPR, one half survived to discharge. Only one third of the patients receiving CPR were registered in The Cardiac Arrest Registry. The reporting is incomplete. According to the doctor's or nurse’s notes, about every tenth patient has not been documented as receiving CPR during their stay in intensive care, which is quite alarming. Discrepancies and omissions in the remaining documentation and registration practice signal a need for improvement of the registration practice. The findings of a difference in survival between the genders suggest a need for further research to identify the causes of this difference.

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Introduction

The proportion of elderly in the Norwegian population will continue to increase in the coming decades (1). Health authorities thus encourage municipalities to focus on the development of competence and innovative service with novel technologies to meet the municipal health services’ challenges related to the increasingly elderly population (1, 2). Welfare technology solutions as a part of the health services are important contributions to the national effort to help the elderly live independently and safely in their own homes as long as possible (1–4). Welfare technology focussing on promoting health and prevention through new communication possibilities, information collection and support for self-care, is called health-enabling technology (4, 5). Tablet computers are considered intuitive and easy to use, also for the elderly, and are therefore attractive for technological health-enabling solutions (6, 7). It may nevertheless be challenging to introduce this kind of technology to the elderly. Some studies point out that elderly have low motivation, self-management expectations, and technological experience, raising the threshold for starting to use technology (3, 8). The cost of the tablet computer and loss of physical function may affect the elderly’s introduction to using modern technology. They may need repeated instructions and follow-up during a training period (3, 8–10). Studies, in which elderly have been introduced to technology using a touch screen, show that the elderly often master this kind of technology. However, individuals with cognitive impairment have greater challenges and more limited possibilities for learning to use the technology independently (6–8,10, 11). Use of a tablet and applications may also be influenced by the applications’ design, interactions and whether the topics for the app are considered interesting and relevant (6, 7, 10, 11).

From a nursing perspective, the purpose of the study was to explore whether the tablet application APPETITT (APPlikasjon for Eldre, TIltak mot vekTTap [Application for elderly, intervention to prevent weight loss]) could potentially prevent malnutrition. A good nutritional status is important for the elderly to maintain self-care and personal vitality (12). Studies from Norway and Sweden report that a high proportion of home-dwelling elderly are at risk for developing malnutrition, or they are malnourished (13–15). Inadequate nutrition late in life may give health-related complications such as weakened physical and cognitive function, weakened immunity and reduced quality of life (14, 16). The causes of nutritional problems are often complex and may be difficult to uncover (14, 16). Protein-energy deficiency is particularly frequent in elderly with nutritional problems, and reduced appetite and reduced interest in food are risk factors in unwanted weight loss (14, 16, 18). Studies have shown that nutritional counselling may give the elderly increased knowledge on adequate nutrition and improve the intake of food (19, 20).

In this article we present findings from a pilot study on the tablet application APPETITT. We chose to design a new application, APPETITT, as available applications assessed by us in 2013 seemed either difficult to use or focussed on weight loss. In the pilot study we specifically looked at whether the application’s design made it easy to use for elderly persons with little experience with tablet technology, and whether the app, APPETITT, might contribute as encouragement and guidance with regard to meals and diet.

Method

Design

The pilot study had an exploratory design (21). A prototype of the app APPETITT was tested by four elderly women. We carried out a focus group interview in which we collected user experiences and we observed the informants demonstrate how they used the tablet and APPETITT.

The tablet application APPETITT

APPETITT is developed specifically for the elderly. The app’s design is in accordance with recommendations from studies where elderly persons are introduced to touch screen technology (6, 7, 22). The requirements that guided the development was that the application should have a stable user interface without menu function, distinctive colour contrasts and large letters, consistent touch functions and large touch surfaces. National nutritional guidelines for preventing malnutrition in the elderly are reflected in the application’s basic functions: meal plan, meal suggestions, visualisation and notification. Special emphasis is put on regularity of meals, reduced time periods between meals, and protein and energy dense food (14, 23). APPETITT was created for tablets of the iPad type. The tablets were connected to Internet with a mobile broadband in the trial period, so that the informants could explore the tablet’s other functions if they wanted.

APPETITT’s meal plan consists of six meals: breakfast, lunch, dinner, supper, and two snack meals. APPETITT notifies the user with sound and message when it is time for a meal. Notification times were determined in advanced during the trial period. For each meal there are several dishes to choose from. Each meal suggestion is presented with a photo of the dish and accompanied by a recipe. The user can register what he/she has eaten and drunk. A registered meal is visualised with this feedback to the user: a) the figure in the meal rhythm shows a photo of the chosen meal, and b) the right hand side of the figure is gradually filled with green colouring. The left hand side of the figure represent liquids and is filled with blue colouring. In the pilot study the app was set up so that the user had to report four meals and 20 units of liquids before the figure was full. The colouring becomes more intense when more food or drink is reported.

Sample

We recruited four women aged 69 to 76 from a municipality in Eastern Norway. They were volunteers at a low threshold programme for persons with cognitive impairment. Local contact person at the low threshold programme approached the women and asked if they wanted to participate in the study. At the first meeting with the researchers the women received more detailed information on about the project before giving written consent. Two of the informants lived alone, and two lived with their spouses. All four had worked before retirement: two in the health sector and two in the business sector.

The trial

The informants used the tablet and APPETITT over a period of four weeks. They were all introduced to APPETITT and the tablet in a meeting where the authors (CF, AM) gave information and guidance. Three of the informants received assistance in downloading applications within their field of interest. After one week the first author (CF) arranged a follow-up meeting for those who wanted further guidance.

Data collection

Data were collected in February 2014. The informants completed a questionnaire giving demographic data, technological experience and Internet use before they were given the tablet. At the follow-up meeting with the informants tablet use in particular was emphasised and the first authors made field notes. After four weeks we carried out a focus group interview (21, 24). The focus group interview helped uncover variations in the informants’ experiences and views (24). The literature also points out that focus group interviews are suited as a method for collecting data to be used in development processes (24), in our case APPETITT. The interview was thematically guided by an interview guide. We introduced the following themes: a) use of tablet, b) using APPETITT (including discussion of the various functions), and c) implications for diet and eating habits. The informants brought their tablet to demonstrate and illustrate their own use of APPETITT. Both authors participated in the two and a half hour focus group interview. The interview was audio recorded and transcribed (CF).

Analysis

The transcribed interview was colour coded to identify each participant’s contribution before the thematic analysis (CF) (21). The material was grouped according to thematics (CF). The interview guide indicated the themes. The material was later abstracted into descriptive categories (C, AM) (21, 25). Descriptive quotes were selected to exemplify each category (25).

Ethical considerations

The study was reported to the Data Protection Official for Research, the Norwegian Centre for Research Data (NSD). All data have been anonymised and processed so that they cannot be traced back to the individual informant.

Results

In the article we first present the informants’ experiences with use of the tablet and APPETITT. Then we present findings linked to key functions in the prototype application APPETITT: meal rhythm and meal suggestions, notification of meals and visualisation.

APPETITT and use of tablet

Three informants used Internet daily through PC, smartphone or tablet before the project, while one informant said she rarely used the Internet. The informants characterised the tablet as functional and easy to use, and a fun tool for using the Internet. They had used APPETITT on a daily basis during the pilot period to explore the functions for meal rhythm, meal suggestions and visualisation. Three informants had also downloaded entertainment applications, such as radio, Online TV and games. The fourth informant used a separate Android tablet for this. Three informants participated in the follow-up meeting with first author.

The informants had arranged a separate meeting for themselves, where they explored the tablet together. They said:

«Well, I’ve got over that first hurdle. And then there is support here, you know» (Gerd, 75).

«We had one of those little tablet meetings yesterday» (Kari, 70).

Such help and support in the beginning were important for starting to use the tablet, especially for the informants who did not have much IT experience.

Meal rhythm and meal suggestions

The informants followed their set routines with regard to number of meals and the timing in the pilot period. They put it like this:

«The way I work, a snack meal in the morning just isn’t my thing» (Inger, 75).

«No, too many meals there for me» (Liv, 75).

The informants agreed that the mealtime rhythms should be more individually adapted, so that the number of meals in the mealtime rhythm corresponds to the meals the individual user normally eat.

The informants described the photos of the meals as appetising and appealing. They had tried several meals presented in APPETITT, including meals they had not tasted before. One informant commented:

«That (pointing to gouda cheese with cherry tomatoes) was really good, I had it the other day. Just really inspired by that photo» (Kari, 70).

Recognition of the meals was important to encourage and stimulate the use of APPETITT, and the results suggest that the photos of the meal suggestions inspired the food habits of the informants during the trial period.

Meal notification

To support the guidance regarding meals, APPETITT had a function that notified the user with a short signal at mealtime. Only one informant had noticed the notification. She found the notification easy to hear, without it being disturbing or invasive. She said:

«I think it is all right. I was awake when it gave a signal at seven, and I heard it from the bedroom» (Kari, 70).

In the focus group interview the informants discussed the notification function, and they suggested that the notification should be set up in accordance with the individual user’s wishes and meal routines.

Visualisation

All informants had reported meals and liquids daily during the pilot period, and they discussed this among themselves. Reported food and drink are visualised in APPETITT by a filling up of the figure. Two informants pointed out that reporting and visualisation enabled them to pay attention to their intake of food and drink, and that they became somewhat more aware of own diet.

«I like being able to register what I eat, it gives me some control» (Kari, 70).

The two other informants saw little utility in the visualisation and felt the reporting may become a burden.

«But to always report what I eat, I’d feel uncomfortable with such reporting» (Inger, 75).

One informant was also sceptical to sharing information about food habits and meal choices over the Internet. She considered this to be personal information and pointed out that it should be possible to reserve oneself from the use of such functions.

The informants did, however, want a function where they could see what food and drink they had reported earlier. One informant put it like this:

«I want to be able to go back and see what I really ate. Like how long has it been since I ate fish. I eat a lot of fish, that’s not it, but how often have I in fact eaten fish?» (Inger, 75).

They thought such an overview would make the reporting more meaningful and stimulate to further use. The informants also felt that the expectations at the basis of the visualisation function must be realistic and be individually adaptable. The number of meals and types of meals were discussed. They considered four meals to fill the figure to be a realistic expectation, but suggested that main meals should fill up a greater part of the figure than the snack meals. In the pilot test the recommended target for drinks was 20 reported units. In order to fill the figure the informants thus had to report much more liquids than what they in fact drank during the day. The informants used this as another example of the importance of individual adaptation and realistic targets for the individual user.

The photos of meal suggestions gave inspiration to prepare new recipies.

Discussion

The findings from this pilot test suggest that the informants quickly learned how to handle the tablet, both APPETITT and other applications. The suggested recipes in APPETITT were inspiring and they found the photos appetising and inviting. With regard to visualisation and reporting, the findings ranged from «awareness of own diet» to questions on the need or wish for such functionality. The pilot test uncovered that only one informant had noticed the notification.

Introduction to technology

The informants used APPETITT from day one. Three informants also used the tablet to access entertainment applications and surf the Internet, in addition to using the APPETITT app. For the informants with the least data experience, having someone available for support and to answer questions at the outset was important. Findings from other studies show that support in the introductory phase reduce barriers when starting to use new technology; especially for elderly with cognitive impairment, repeated training and reminders of how to use the app may be crucial (10, 11).

The motivation for starting to use technology may depend on the users’ perception of usefulness and meaningfulness (3, 26). Family and others who know the person well, are often important contributors when elderly start using new technology, in giving instructions or adapting the technology to the user’s wishes and needs (27).

Our aim was to develop an application that would be easy to use for elderly persons without technological experience. The informants easily discovered how to use APPETITT, and they mastered the touch screen functions in the application. They used APPETITT daily to look at meal suggestions and for reporting. The informants would like more individualised adaptations, especially in the set up of meal rhythms and the targets for food and drink shown in the visualisations. Findings in other projects where elderly are introduced to welfare technology show that technological improvements and adaptations following trials may be important for stimulating use over time (3, 11).

Meal suggestions and eating habits

All informants said they had been inspired to eat some of the dishes presented in the photos in APPETITT. One user was inspired to try specific suggestions and prepare new recipes, while others found inspiration in the photos of already familiar food. The findings from the pilot test suggest that already established routines and habits guided the choice of meals and eating patterns, but that the photos in APPETITT to a certain extent did influence the informants’ choices during the trial period. Studies have shown that nutritional counselling may give increased knowledge on adequate nutrition, and this may influence the food intake (20, 28). Eating habits are, however, very personal, and it is important to acknowledge that changes in diet can be difficult to make for those who need it the most (29). APPETITT may be a tool in nutritional counselling, especially if small, simple measures to add energy and protein content to meals are emphasised (23). The findings from this pilot test suggest that more adaptation to personal routines, nutritional requirements, and a greater variety of meal suggestions should be considered for further development of the application.

Orientation and overview

In APPETITT we used the tablet’s general functionality for setup of notification: push notification. APPETITT was set up to notify time for a new meal with a short signal. Three informants had not noticed the notification. The informant who did notice the notification found the sound easy to hear and non-invasive. This strategy for notification had natural limitations: the user must be in the vicinity of the tablet, must notice the signal, and the signal must be acknowledged and acted upon (11, 30). Studies where notification reminders are given on medications or activities point to a lack of adherence over time as a challenge (11, 30). The informants suggested individualized notification functionality where timing, duration and type of signal are adaptable. Duration of the notification and type of signal may be significant for whether users hear and recognise the notification (30). On the other hand, a welfare technological system for elderly with cognitive impairment did find limited recognition of notification even after it was personalised in collaboration with the users (11). In our pilot we do not know enough about why the notification went unnoticed – whether the notification function was turned off in the general set up of the tablets, whether there was an error in the prototype so that the notification did not work during the test period, or whether the informants did not notice or recognise the sound as notification. For the next version of APPETITT we may try out other kinds of notifications: repetitive notification or other signals to see if this would attract more attention from the users.

Registering what I eat gives me control. Kari, 70

The informants’ had mixed opinions about on the visualisations, both in terms of the significance of registering food and drink, and the actual visualisation. The filling up of the figure and the miniature photo of the chosen meal in the meal rhythm are intended as guidance and encouragement. The meal plan shows photos of what has been registered as eaten during the day. The visualisation of this intake in the figure indicates the amount of food and drink consumed during the day. Part of the feedback from the informants was that the expectations in the application were unrealistic, especially for the amount of liquids. A realistic and personal encouragement, in addition to personal motivation, may be decisive for nutritional measures intended to prevent or serve as early intervention in the case of nutritional risk (20).

One informant was sceptical to sharing information on eating habits in this kind of application as she considered this to be personal information. Fear of surveillance or loss of control over one’s private life may affect the acceptance of welfare technology, and perceived utility may have to be considerable for elderly to start using the technology (3, 31). In APPETITT the informants were given an overview of reported food and drink for each day. They suggested a calendar function to view their own activity over time as a useful addition. In the prototype such historical information was not available to the users, as we gave priority to designing the application with a stable appearance.

Strengths and weaknesses

The pilot test with the data from the focus group interview and the users’ demonstrations gave important information on the functionalities in the prototype APPETITT. The informants’ interests and varied IT-experience provided rich information on how the application may be used by the elderly. Although the volunteers were age-wise in the target group for APPETITT, they were not fully representative as elderly at risk of malnutrition. The pilot test sample is small, and the findings and the conclusion must be viewed accordingly. The informants did, however, find the application a useful aid for their own age group. The findings will be of importance for further development of the application and of services related to it.

Conclusion

The pilot test showed that the prototype APPETITT was considered a user-friendly tool. The informants found it easy to use, even without much IT experience. APPETITT has the potential to inspire to a varied diet and give increased awareness of meal habits. It may thus be a tool to raise awareness and prevent risk for undernutrition among elderly. User experiences from this pilot study will inform the further development of APPETITT. More variation in the content and expanded functionality adapted to the user’s personal nutritional and fluid needs, preferences and habits, will be emphasised.

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Introduction

Heart failure is one of the most common causes of hospital admissions and readmissions in the older part of the population, and more than 100 000 persons in Norway are diagnosed with heart failure (1). This burden of illness is visible in the registration of more than 10 000 hospital admissions in Norwegian hospitals in 2012 due to heart failure (1,2). Heart failure is a serious and complex condition with symptoms such as breathing difficulties, exhaustion and swollen ankles, often resulting in a reduction in quality of life and many hospital admissions (3, 4).

Support from family and friends is significant to how persons with heart failure who live at home manage their illness, and reports show that eight out of ten close family members participate in illness-related tasks (5). Knowledge is important in order to act adequately, and studies show that family caregivers desire information on challenging areas such as dietary restrictions, mental state and signs and symptoms of change in the heart failure condition (6-8). They also wish to collaborate with the health services. Studies show that support from family members can reduce the number of hospital admissions and influence the outcome of the disease (9, 10). Other studies show that heart failure patients’ family caregivers have not received sufficient information at the time of discharge from hospital (5, 11).

The role of family caregivers has received increased attention and has been accorded a key role in the health and care services of the future, both as a care resource and as a source of knowledge (12). Informal caregivers will thus need knowledge, transmitted in the form of advice, guidance and training (13). The essence of the reform of the Norwegian health services (12) introduced January 1 2012, is a shift of tasks and responsibilities from hospital to municipality. It is reasonable to assume that this also affects the role of informal caregivers. We have not found any studies focussing on the family caregivers of heart failure patients after the collaboration reform was introduced.

The purpose of the study was to obtain knowledge on experiences and views of family caregivers of heart failure patients living at home, and the competence and support the caregivers need to manage the situation of their close ones and their own. The article will attempt to answer the research question «What characterises family caregivers’ experiences with collaboration with the health services?»

We have earlier published an article exploring the experiences of family caregivers with invisible care, such as being prepared and being involuntary volunteers (14).

Method

The study has an explorative qualitative design using interviews to collect data. Family members of heart failure patients were recruited from three heart failure outpatient clinics and three home care services districts with the following inclusion criteria:

• that the patient was in regular touch with his or her family member, preferably living together
• that the patient was competent to consent
• that the patient mastered the Norwegian language

Nurses who knew patients with heart failure gave oral and written information to both family and patient. We considered consent from the patient necessary to interview family, and all patients gave their consent. All family members who were asked consented to participation in the study. A total 19 family members were interviewed, 14 recruited in a heart failure outpatient clinic and five from the home care services. The majority chose to be interviewed in their homes, some in the researcher’s office or some other shielded place. The age span was 45 – 83 years (median 63). 17 were women, 12 married or cohabiting, and seven were daughters not living with the patient.

The interviews were carried out as conversations on open themes. We audio-recorded the interviews, done over the course of six months in 2013, and transcribed them. The conversations centred around the family member’s knowledge of heart failure and treatments of heart failure, the experience of confidence in the role of family caregiver, experiences with invisible care and care activities, need for practical and psychosocial support and need for training and counselling and guidance. This article treats findings linked to the two latter themes.

Data analysis

The study has an experience-oriented and interpretive approach. The processes of analysis are inspired by systematic text condensation (15,16). First, each researcher did an open reading of all interviews and wrote down a summary for each individual interview in order to form a holistic impression. Next, the researchers collectively performed the first open thematic analysis in order to identify preliminary themes. With this as a basis meaning-carrying units were identified, grouped, condensed and abstracted for each interview. The research group subsequently did a cross-case analysis of the interviews to identify overarching themes and subthemes. Table 1 shows an example of the analysis process.

Norwegian Centre for Research Data (NSD) approved the study (31564/ 09 26 2012). The study was carried out in accordance with the Declaration of Helsinki’s ethical principles for research.

Findings

The interviews reflected family members’ experience of responsibility, need for more knowledge and experiences in encounters with the health services.

In this article we explore the following themes:

1. involvement, willingness to assume responsibility and desire for knowledge
2. unclear responsibility and insufficient flow of information
3. available and competent supporters

The first theme is about family members as active participants in the management of the illness and their desire and need for knowledge. The second theme is about their encounter with the complexities and unclear collaboration in the health services, and the last theme explores family members’ experiences with, and the significance of, having competent supporters in the health services.

1) Involvement, willingness to assume responsibility and desire for knowledge

Family caregivers described a daily routine with strong involvement in daily tasks related to the illness, with follow-up of treatment, handling of medication and assessment of whether the illness changed character. The majority referred to themselves as «co-walkers» and resource persons in relation to the illness. One family caregiver used the term «playing on the same team as» the partner.   Several said they came along to examinations, treatments and controls. They expressed a wish and need to assume responsibility; participation was important for their own sake and linked to both internal and external expectations. One family member said: «He (the patient) really wants us to accompany him to the doctor and to everything. It is quite all right that we care about this and that». Another said she wrote down all information and everything that happened: «I have a phone where I enter everything and know exactly what to say to move on … I go along all the time to doctor’s appointments and look after for medications and such.» Several family members described concrete situations where they participated actively. “When he became ill and was admitted to hospital, of course I had to be there all the time to watch out for him”.

One common feature was the wish for continuous information. Several family members described the need for sufficient knowledge on symptoms of a worsening of the heart condition, so that they could react and act adequately when the patient’s situation changed. Several family members said that good and factual information was important to them.  One respondent said: «Proper information and whether there are some symptoms that I should respond to … so that I can respond». Information on the treatment and medication was also important. They described situations where they felt insecure, where they felt that information and insight into the situation would have made them more confident. One family caregiver put it like this:  «I have been really scared of more changes, also due to insufficient information … (I do not know) what is dangerous and what is not». Another respondent described it like this: «Really good and to the point information would have calmed me down».  

Several family members described situations where they were not given sufficient information. They talked about situations where they felt like a nuisance – where health personnel were too busy and did not seem to have enough time to inform. The medical terminology used was also a challenge to some. One respondent described the experience thus: «We have to nag about everything to get an answer, and then they give us these doctors’ statements … I say speak Norwegian, so I can understand, I really do want to have it expressed». The search for information gave some family members an active role with clear strategies and preparedness in the encounter with health workers. One family caregiver described it as follows: «Sometimes when he is discharged (from hospital), I have written a note, and then I have been given answers, but then he (the doctor) is on the phone and the next patient is waiting … then you feel it is all a bit too quick».

2) Unclear responsibility and insufficient flow of information

Family members described experiences with the health services where several actors have part responsibility for the treatment and follow-up of the heart failure patient. They found it challenging to move between the specialist health services and the municipal services. The meeting points in the specialist health services were the ward at admission and at specialist follow-up at the cardiac outpatient clinic. During admission to hospital they had to deal with a variety of medical personnel involved in the treatment on the ward. The contact network in the municipal services also involved several individuals: primary physician, rehabilitation units and employees in the home care services were mentioned. Some respondents said they experienced the communication between health personnel as inadequate, and that this constituted an extra burden. One family member put it like this: «It was impossible to relate to just one person, there were just too many of them (hospital doctors), and I didn’t feel I could bother them and ask too much there either. And when we came to the primary physician, he had to read through all the papers, he didn’t quite get it (the treatment)».

When the information did not quite add up, the family members were at a loss as to whom to trust, and several stated that they felt they were on their own. Episodes were described where the family member had to be the link between the specialists in the hospital and the primary physician. One respondent put it like this « … and I had to start explaining to the primary physician that they said this and that at the hospital and that he shall have such and such medication for so and so long». Another family member experienced being given the responsibility for coordination when she discovered a lapse in the information between the primary physician and the hospital doctors: «I do not want such great responsibility, I do not want to know more than them when he is ill. I just don’t want that.» Several respondents described it as a burden and a source of anxiety when health personnel did not agree on treatment: « … that worries me, for a cardiac specialist should know more than a general practitioner».

3) Available and competent supporters

Knowing whom to contact when they needed answers to questions or needed someone to share their worries with was important to family members. Several respondents described the heart failure outpatient clinic with follow-up and specialist competence as their most important support arena: «That they follow up, and that we do not have to nag to get an appointment».  Several respondents said that knowing that they as family members could call if they needed to, made them feel appreciated, and made them feel more confident: «When I wonder about something, I have to call her (nurse). If I hadn’t met her, I don’t know, but she has been amazing … ». This availability was also described as being met with friendliness and attention. 

Several respondents emphasised that a nurse at the heart failure outpatient clinic was an important contact person who helped them gain knowledge and understanding of the situation: «She explains so well, and she tells us what to do, and that is just wonderful. She does that every time we are there … and she tells us constantly why he is like that and what to watch out for, that has just been great.» The heart failure outpatient clinic was described as a hub where the nurse has a coordinating role and collaborates with other health service personnel from whom the patient receives services; such as home care nurses, primary physician and specialist. Some family members mentioned nurses in the home care services as well as important supporters: «Home care nursing is fabulous, we have met just the right people all the time, it is great». Several respondents described situations where the nurse had cleared up and set things straight when the information was inconsistent and had prescribed treatment.  Competent nurses were greatly appreciated resources.

Discussion

The findings showed that family members have a need for relevant and precise information and qualified partners, included access to medical personnel with specialist competence. The family members we interviewed made it clear that it is difficult to be the resource that political intentions state they should be (12, 17). They wanted to know and understand more about what went on with their close ones suffering from heart failure in order to handle the situation better. Family caregivers need knowledge on the disease itself, the significance of symptoms, treatment and observations in order to develop the competence to manage the illness. Family members may experience an extra burden of anxiety and insecurity as a consequence of insufficient information on the illness. We make this clear in our first article (14).

Studies have documented that disease-related information and support to patients and their families contribute to better disease-management and lead to a reduction in the number of hospital admissions (9, 18). Involving family members when informing the patient has the potential advantage that two remember better than one, increasing the chances of proper adherence to the treatment (19). Heart failure can influence the memory and concentration of the patient (20, 21). Our findings show that family members have key tasks in the follow-up of the treatment and perform complex tasks to strengthen the patient’s ability for self-management of the illness. The family members we interviewed also said that their own need for information was related to being less worried for disease-related events.  Prior studies show that being a family member of a heart failure patient is demanding (11, 14, 22-27). Other studies show that insufficient and ambiguous information in relation to an illness gives an increase in the feeling of insecurity (8). 

Family members who are attentive to changes in the symptoms must be able to understand what to look for, and what the various signs mean (14). The absence of proper information to family members may be caused by a series of circumstances.  Information to family members on the health condition of the patient and treatment depends on consent from the patient, if the situation demands it (28). The way patient confidentiality is interpreted and practiced by health personnel may be a factor in the involvement of family members. 

Bøckmann and Kjellevold (29) point out that the way such regulations are practiced may constitute an obstacle more than the law itself, and that uncertainties around the limitations of patient confidentiality may restrict the amount of information given to family members. The Patients’ Rights Act (30) is clear on that next of kin shall receive information on the patient’s health condition and the help given, if the patient consents or conditions demand it. Norwegian studies show that information in hospital frequently is given to patients without any family members present, and that the patients have not been asked whether they want their family members present (11, 32, 33).  There is evidently work to be done on how family members’ involvement can become an explicit and integrated part of the professional practice of health personnel.

It is well documented that outpatient clinics lead by nurses improve both survival and self-management behaviours in patients with heart failure (34,35). Specialist nurses in heart failure outpatient clinics offer consultations and coordination of services for patient and family members, and may be contacted by telephone. Health personnel who support and inform family members will be able to strengthen the family caregivers’ chance to be co-players for the ill person, and to manage their own situation (36). The majority of the family members we interviewed felt significant and included when they were able to take part in the follow-up of the heart failure patient. This finding corresponds with findings from other studies (26, 37). 

An important finding in our study is that family members greatly appreciated health personnel that were available and possessed good medical knowledge. Several family members reported good experiences with effective and knowledgeable employees in the home care nursing services. These nurses had helped clear up ambiguous information, dealt with deteriorating health and avoided readmissions. This reflects the significance of high competence in the home care services as well, especially competence linked to identifying and acting when a patient’s conditions deteriorates. Studies show that the complexities of heart failure demand that nurses possess specialist competence in order to adequately inform and follow up patients with heart failure, and that there is a shortage of such competence (31, 35). A particular challenge in the municipal health services is a shortage of both specialist competence and continuity of the follow-up (38, 39).

The main goal of the collaboration reform is well-coordinated and unified health services (12). The reform entails a shifting of tasks from the specialist health services to the municipal health services. Family members interviewed by us experienced the presence of a multitude of health service employees involved in the situations of deterioration of the disease and treatment. They met nurses and doctors at various service levels and experienced it as unclear who was in charge at various times, although the primary physician is defined as the axis of the medical follow-up and treatment. The respondents said they felt they had been given a great responsibility for coordinating the services and this may indicate that the organisation of the health services appear fragmented. 

The complexity of heart failure demands interdisciplinary follow-up and coordination, and this is clearly stated in the recommended guidelines for heart failure patients (40). Prior studies in other countries show that a lack of collaboration in the follow-up between service levels is a known problem (41).  This also became clear from the PasOpp-report from 2013, a study of patient experiences with Norwegian hospitals. Forty per cent of the patients stated that the hospital did not collaborate satisfactorily with the primary physician on what was the cause of the patient’s hospital stay (42).

There is, in several countries, a shift toward nurses performing diagnosis-specific tasks in the municipal health services as well (43). We see this as an opportunity for letting nurses with specialist competence on heart failure work as a professional resource in teams with nurses in the municipality, making home visits at need and having consultations with patients and family members in a municipal cardiac outpatient clinic (44). Such an arrangement can also help increase the competence of nurses in charge of daily care of patients in the municipal health services, in the patients’ homes and in nursing homes. Continuous access to adequate medical competence in people who also know the patient and family caregivers may give faster reaction to subacute deterioration. 

Studies show that nurses with specialist competence play a significant role in the quality of the health services and should be emphasised to a greater extent (45). The political signals given in 2015 (St.meld. 26), emphasising a holistic health service and an increase in competence (17), and the grant programme for master’s degree in advanced clinical nursing (46), are factors that may increase the quality of the services to patients and family caregivers.

Strengths and weaknesses

A strength of this study is the open approach; no questions to family members were decided in advance, as no Norwegian study has been published on the experiences of this group of informal caregivers. Another strength is that the initial analyses were performed by each individual researcher, and later collectively in the research group. The research group reached consensus on the results through discussion. The study’s sample has a large age span, a possible strength as more nuances of experiences were revealed. A limitation of the study is that the majority of participants were women, and that the majority was recruited through heart failure outpatient clinics with access to medical personnel with specialist competence.  Information on the medical severity of the heart failure was not collected, and we have not uncovered whether the family members’ experiences change character with the degree of severity of the disease. 

As the patients consented to their family members’ participation, we may have recruited family members in close touch with and well involved in the patient’s situation and in the collaboration with the health services. The study’s respondents were recruited by a nurse who knew the patient and the family, and we acknowledge the challenge to the volunteer aspect when recruiting is done through health personnel. The researchers made sure that the respondents were informed of their opportunity to withdraw from the study before, under and after the interview. Nobody chose to withdraw and several said it felt good to be able to talk about their experiences.

Conclusion

Family caregivers wish to understand any changes in the illness in order to support their close ones in the best possible way. In spite of family members’ experience of receiving insufficient information and an unclear services terrain, they also have positive experiences with available and competent nurses. The health services of the future have increased attention to family caregivers’ involvement and the expected increase in the number of patients with heart failure. In order to keep up with this development discussions on the responsibility to inform versus confidentiality and competence increasing efforts for nurses will be of significance for the quality of the services. Clearer communication between health service personnel will also be important so that the family caregivers may feel secure. In the municipal health services the emphasis on collaboration and competence development has the potential to give the heart failure patients and their family members good quality health services. There is a need for studies to examine the relationship between family members’ experiences, their assessments of the quality of the services and the competence of the nurses that follow up patients with heart failure in their homes. 

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