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

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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. 

References

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14.     Brenden TK, Storhei AJ, Grov EK, Ytrehus S. Kompetanseutvikling i sykehjem – ansattes perspektiv. Nordisk Tidsskrift for Helseforskning 2011;7(1):61–75.

15.     Lane SJ, Trover JL, Dienemann JA, Laditka SB, Blanchette CM. Effects of skilled nursing facility structure and process factors on medical errors during nursing home admission. Health Care Management Review 2014; 39(4):340–51.

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18.     Dilles T, Elseviers MM, van Rompaey B, van Bortel LM, Vander Stichele RR. Barriers for nurses to safe medication management in nursing homes. Health Policy and Systems. 2011; 43(2):165–76.

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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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22.     Jormfeldt H, Brunt DA, Rask M, Bengtsson A, Svedberg P. Staff’s experiences of a person-centered health education group intervention for people with a persistent mental illness. Issues in Mental Health Nursing. 2013;34(7):488–96.

23.     Dures E, Hewlett S, Ambler N, Jenkins R, Clarke J, Gooberman-Hil R. Rheumatology clinicians' experiences of brief training and implementation of skills to support patient self-management. BMC Musculoskeletal Disorders. 2014;15(108).

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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.

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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).

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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.

References

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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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5.      Parra DA, Totapally BR, Zahn E, Jacobs J, Aldousany A, Burke RP et al. Outcome of cardiopulmonary resuscitation in a pediatric cardiac intensive care unit. Critical care medicine. 2000;3296–300.

6.      Rozen TH, Mullane S, Kaufman M, Hsiao YF, Warrillow S, Bellomo R et al. Antecedents to cardiac arrests in a teaching hospital intensive care unit. Resuscitation. 2014;411–7.

7.      Slonim AD, Patel KM, Ruttimann UE, Pollack MM. Cardiopulmonary resuscitation in pediatric intensive care units. Critical care medicine. 1997;1951–5.

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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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33. Bragstad LK, Kirkevold M, Hofoss D, Foss C. Informal caregivers› participation when older adults in Norway are discharged from the hospital. Health & Social Care in the Community. 2014;22(2):155–68.

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Introduction

Older adults are at risk for developing malnutrition (1, 2). Studies show that as much as 30-60 per cent of older adults in hospital and nursing homes (3-6) and 2-10 per cent of older adults living at home with home care services are malnourished (4, 5 ,7, 8). Older adults with dementia conditions are particularly at risk (9). One cause of malnutrition may be that health personnel do not properly identify risk factors such as poor appetite and eating disorders among the elderly. Several studies have uncovered inadequate routines and procedures for assessing food intake and nutritional state in various health institutions (10, 11).

It is important to focus on malnutrition in the health services as the condition can cause the patient increased suffering and death. Malnutrition leads to increased health care costs to society due to delayed recovery, readmissions and an increased need for home care services (12, 13). In 2009 the Norwegian Directory of Health published National medical guidelines for the prevention and treatment of malnutrition. Their goal is to identify persons who are malnourished or at risk for malnutrition in order to deliver nutritional therapy (14). According to these guidelines screening of nutritional risk shall be included in the nurse’s routine assessment of a patient. The regulations state that patients in nursing homes and elderly with home care services shall be screened for nutritional risk at admission or at the granting of home care services, and later be screened on a monthly basis.

Screening is used in a series of contexts within the health services and may be defined as examinations offered to apparently healthy persons to uncover a particular phenomenon or disease (15). Screenings for nutritional risk may identify persons at increased risk of malnutrition (16). A series of tools have been developed for this purpose (2, 13, 14, 17). The Norwegian Directory of Health recommends that health personnel use Mini Nutritional Assessment (MNA) and Malnutrition Universal Screening Tool (MUST) to screen for nutritional risk in elderly persons, and they point to Nutritional Risk Screening (NRS 2002), Subjective Global Assessment (SGA) and Ernæringsjournal [Nutritional journal] as alternative tools. To serve its purpose, a screening tool must measure what it is supposed to measure (be valid), and give the same result in repeated measurements (reliability). The Norwegian Directory of Health guidelines do not address the recommended screening tools’ validity and reliability (14).

"Older adults are at risk for developing malnutrition."

Several of the tools are developed for use in hospitals (2), and it is not clear whether they are suitable for screening for nutritional risk in elderly residents in nursing homes or in the home care services. Another important point that the guidelines do not touch upon, is whether the tool is easy to use (practical, quick and simple) for both nurses and patients (18,19). The purpose of this study is to identify screening tools suitable for uncovering risk of malnutrition in elderly residents in long-term care facilities, and among users of home care services. This is achieved by summing up what research says about validity, reliability and applicability.

Method

A systematic literature study was performed.

Search strategy

To identity relevant publications we performed systematic literature searches in the databases MEDLINE, Cinahl, Ovid Nursing of Food Science (via EBSCO), PubMed, Embase and The Cochrane Central Register of Controlled Trials (CENTRAL). The searches were carried out in February 2014 with a librarian with literature search competence. Search words included MESH terms in the various databases in addition to free search words. The following search words were combined in the searches:

• elderly, older adults, old age, aged
• community dwelling, home care, out-patients, primary health care, nursing home
• nutritional status, malnutrition, undernutrition, weight loss, and
• screening tools, assessment methods, tools, geriatric assessment, questionnaire.

A survey of reference lists from key articles was performed. All identified articles were transferred to a data programme for processing and organisation of references, (EndNote X7) and screened for duplicates. All four authors subsequently went through the list of articles by looking at title and abstract and assessing the articles for inclusion. Disagreements were solved by discussion and reasons for exclusions were given. We then analysed the content in the included studies by reading the articles in accordance with recommendations in The Cochrane Handbook for Systematic Reviews of Interventions (20). As we included non-randomised studies, we used a pragmatic quality assessment model based on the Cochrane guidelines (Table 1).

Inclusion and exclusion criteria

The searches were limited to quantitative studies published in English, German, Norwegian, Swedish or Danish in peer-reviewed journals the past 15 years.

Inclusion criteria

• age ≥ 65
• community-dwelling with home care services
• resident in long-term care facility with nursing personnel present, such as nursing home or assisted living facility
• studies performed to validate one or several screening tools

Exclusion criteria

• studies designed to assess prevalence of nutritional risk or malnutrition
• studies that do not validate pure screening tools (16), but tools such as SGA and MNA, which are approved and valid methods for measuring nutritional status in elderly adults (21-23).
• validation of country-specific screening tools
• disease-specific target groups such as cancer patients, patients with Alzheimer’s disease or patients with various neurological diseases
• studies with ten or less patients

Assessment criteria

Assessments of criteria validity are generally made against a gold standard (24). In the absence of such a gold standard other criteria or reference methods must be used. In this study we chose to accept the following criteria or reference methods:

• tool for assessing nutritional status (SGA and MNA)
• objective assessment of nutritional status performed by health personnel
• nutritional assessment based on anthropometrics (weight, body mass index (BMI), arm muscle circumference etc.)

To evaluate correlation between the screening tool and the reference method we used the following outcome measures: sensitivity, specificity, positive (PPV) and negative predictive value (NPV). High sensitivity indicates that the test uncovers as many as possible of persons at risk for malnutrition (15). High specificity indicates that the test yields few false positives. Sensitivity and specificity and the prevalence of the condition give the predictive value of the screening method. PPV indicates the proportion of persons classified in the high-risk group and who are in fact at risk. NPV indicates the proportion of persons who are not categorised as high-risk and who are not (15, 25). Both PPV and NPV are given as percentages, and the higher the percentage, the better the screening. Low NPV indicates overdiagnosis.

The following outcome measures were further included: area under the curve (AUC), correlation coefficient (CC) and kappa values (k). Receiver operator curves (ROC) indicate the relationship between true positives and false positives. The area under ROC (AUC) is a measure of the diagnostic value of the screening tool. AUC may vary between 0 and 1, where AUC = 0.5 indicates that the screening tool cannot distinguish between the groups, and AUC = 1 indicates perfect test. The correlation coefficient r indicates correspondence between two variables and will always be between -1 and 1. The closer r is to -1 or 1, the stronger the correlation between the two variables. Kappa value (k) is a reliability coefficient and indicates agreement between two measures. The kappa value will vary between 0 and 1, and the closer to 1, the greater the correlation. The cut-off values for these outcome measures are shown in table 2 (17).

The PRISMA recommendations (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) (26) were followed in reporting the publications.

Results

A flow-chart showing the search and selection process is shown in Figure 1. 

The literature searches yielded a total of 524 articles. After having removed duplicates of articles found in different databases and articles in unfamiliar languages, 420 articles remained. We assessed title and abstract of the studies in accordance with the inclusion criteria. This process resulted in 57 articles, which were read in full. We divided the articles between us and quality assured what had been abstracted by going through all articles together. An additional seven articles were found by going through reference lists of included articles and key survey articles. Of 64 articles 55 were excluded, mainly because they did not represent validation studies (n=20), or because the validation was not performed in a nursing home or among community-dwelling elderly (n=17). This literature review is thus based on nine articles and the validation of four distinct screening tools. Only one of these tools, MNA_Short Form (MNA-SF), has been translated into Norwegian. The validated screening tools are presented in Table 3. 

MNA-SF.Four studies (27-30) with a total 3599 (127-2603) elderly over 65 years assessed the validity of MNA-SF, including a variety, MNA-SF Calf Circumference (MNA-SF-CC), in which BMI is replaced with calf circumference. In all the studies the full version of MNA was used as a reference method. Three studies performed validation among both community-dwelling elderly and elderly residing in long-term care facilities (nursing home) (27, 29, 30). One study performed validation only in long-term care facility (assisted living) (28). The results from these studies showed that MNA-SF had moderate validity used among community-dwelling elderly and high when used in long-term care facilities (Table 4). Sensitivity among community-dwelling elderly varied between 74 – 89 per cent and the specificity between 77 – 95 per cent (21, 24). Among elderly in long-term care facilities the variation was 64 – 89 per cent and 82 – 100 per cent respectively (27, 29, 30). Two studies assessed percentage correlation between classification using the reference method (MNA), MNA-SF and MNA-SF-CC (29, 30). 

"30–60 per cent of older people in hospitals and nursing homes are malnourished."

Among community-dwelling elderly there were 83 per cent and 91 per cent correlation between classifications done with MNA and MNA-SF and 72 per cent and 90 per cent between MNA and MNA-SF-CC. In long-term care facilities the corresponding correlation was 82 per cent and 83 per cent, and 76 per cent and 77 per cent respectively. Huhmann (35) investigated whether the screening results were the same when community-dwelling elderly completed a self-administered MNA-SF-version (MNA-SF-self), and health personnel completed MNA-SF (result not shown in table). The study included 463 elderly > 65 years and their care person. The correlation between answers from the elderly and the health personnel was 90 per cent for those who were classified as of normal weight, 89 per cent for those who were classified as at risk for malnutrition, and 99 per cent for the group classified as malnourished. The study concluded that the inter-rater-reliability is high, and that MNA-SF-Self may to advantage be used to screen nutritional status among community-dwelling elderly.

Simplified Nutritional Appetite Questionnaire (SNAQ).Two studies with a total 895 elderly assessed the validity of SNAQ and a version of SNAQ that includes BMI (SNAQ-BMI) (31, 32). SNAQ was validated among community-dwelling elderly and elderly in long-term care facilities and showed moderate validity in relation to MNA (31). SNAQ-MNI validated in long-term care facilities showed high sensitivity compared to MNA. A large proportion (PPV = 59 per cent), however, was classified as at risk without being so (32), i.e. overestimation of risk of malnutrition.

Geriatric Nutritional Risk Index (GNRI)was validated in a study with 241 elderly in long-term care facilities. The screening tool was validated against MNA and showed moderate validity (33). This was primarily due to low specificity and low positive predictive value (PPV = 17 per cent). This indicates that GNRI overestimates risk.

Malnutrition Screening Tool (MST). One study validated the screening tool MST among 285 elderly in long-term care facilities with SGA as reference method (34). The screening tool was moderately valid in this group, primarily due to moderate specificity and PPV.

The included validation studies did not assess the applicability of the tool.

Discussion

The purpose of this study was to identify screening tools suitable for uncovering risk of malnutrition in two groups of older adults: community-dwelling elderly receiving nursing services in the home, and elderly residents in long-term care facilities defined as nursing homes and assisted living. We found in total four screening tools – MNA-SF, SNAQ, MST and GNRI – that were validated in the two groups. MNA-SF was validated in four studies (27-30). Even though the studies are few, the number of participants was relatively large and the results relatively univocal with moderate to high validity when MNA was used as a reference method. There is thus basis for saying that MNA-SF is suitable for uncovering nutritional risk in elderly in long-term care facilities and among community-dwelling elderly. With regard to the tools SNAQ, MST and GNRI, few validation studies were carried out in the two groups of elderly. There is thus a need for more research in order to say anything about how well suited these tools are.

When assessing whether a tool is suitable for screening nutritional risk, it is important that it is able to identify the persons at risk of malnutrition. Such persons may then be followed up and their nutritional status assessed and efforts instituted to prevent the development of malnutrition. The sensitivity of the screening tool and NPV are thus important measures when judging validity (15, 25). The tools we found had high sensitivity, and SNAQ, MST and GNRI had high NPV as well. NPV for MNA-SF was estimated in only one study (27), and the value was satisfactory for community-dwelling elderly, but significantly lower in nursing homes. MNA-SF’s sensitivity seemed higher among community-dwelling elderly than among elderly in long-term care facilities. The difference may be due to the strong emphasis on mobility and cognitive function in MNA-SF (3), and the fact that mobility and cognition are the very functions that are impaired when elderly are admitted to nursing homes. Their basic nutritional needs may nevertheless be met to a higher degree than for community-dwelling elderly due to the presence of health personnel. Poor mobility and impaired cognition are thus probably more relevant in a screening tool adapted to community-dwelling elderly. A Norwegian study from 1994 showed that mobility problems and resulting difficulties with shopping for food were risk factors in the development of malnutrition in elderly persons (36).

"A screening tool is to uncover who is at risk for malnutrition."   

MST is a frequently used screening tool. It is not developed specifically for the elderly, but is found to be valid for use in hospitals and in connection with outpatient clinic activity (37). We found one study that validated the tool among elderly in long-term care facilities (34). Earlier validation of MST with the same reference method (SGA) in hospital yielded higher sensitivity (92 – 100 per cent) and specificity (81 – 93 per cent) than what was found among elderly in long-term care facilities (38-40). This reflects that MST is possibly better suited in acute settings, for which the tool was originally developed (38).

Overdiagnosis is a known risk with all types of screening (41). Among the screening tools we assessed, GNRI had low sensitivity and low positive predictive value, indicating that overdiagnosis may be a problem if this tool is used. SNAQ and MST seemed to overdiagnose as well, albeit to a lower extent than GNRI. One may argue that overdiagnosing malnutrition is better than underdiagnosing it, as the treatment in the case of malnutrition is about giving extra attention to food and the availability of it and does not entail any danger to the patient. On the other hand, time is spent on persons who do not really need it, possibly incurring unnecessary costs to the health services. Screening entails a certain risk of overdiagnosis and a screening tool with the highest possible specificity and sensitivity should be chosen, and the screening should be targeted to groups with a known prevalence of malnutrition (15, 41).

Our findings suggest that the same screening tool cannot be used to identify risk for malnutrition among community-dwelling elderly, elderly in long-term care facilities and in hospital. This emphasises the need for validating the screening tool in the patient arena it is to be used. In a long-term care facility the tool must capture a gradual change in nutritional status from insufficient food intake and/or a change of needs. In patients who are admitted to hospital, the tool shall uncover an already present risk (34). In this context it is interesting to note that none of the tools recommended by the Norwegian Directorate of Health (14) for screening nutritional risk in elderly persons, are validated among elderly in nursing homes or in their own homes. The guidelines recommend that the full version of MNA and MUST be used in the primary health services, and that NRS 2002, SGA and Ernæringsjournal [Nutrition journal] be used as an alternative. MNA and SGA are not developed to be used as screening tools, but are tools to assess nutritional status (37). Neither MUST or NRS2002 are specifically developed for the elderly (2) and are also not validated in the two groups of elderly we were interested in. The Ernæringsjournal is not, as far as we know, validated.

A series of screening tools use height and weight to assess nutritional risk. Such measurements may be misleading in the elderly due to ageing and functional disturbances. A version of MNA-SF has been developed which uses calf circumference (MNA-SF-CC) rather than BMI. Other studies (42) have shown that calf circumference and upper arm circumference alone are good indications of nutritional status in elderly. Nevertheless, MNA-SF, which includes BMI, was found to give a somewhat better nutritional assessment than the use of CC (27). MNA-SF-CC is thus only recommended when measuring BMI is not possible. One of the advantages of SNAQ is that the tool focuses primarily on appetite and meals.

"MNA-SF is a well-suited screening tool for identifying older persons with increased risk of malnutrition.”

In the studies included, most tools are compared to the full version of MNA. MNA is a tool used to assess nutritional status. MNA is well validated, but when the tool is compared with a more extensive nutritional assessment that also includes registration of food intake and blood tests, low specificity is indicated (2). It may look as if MNA automatically includes fragile elderly in the category malnourished and thus gives false positives (2, 43). As MNA may have such weaknesses, one may question whether MNA is a suitable reference method for assessing criteria validity. In this context it is also important to point out that when using a reference method to validate a screening tool, the tool cannot be better than the reference method itself (17). This emphasises even more the need for more studies investigating the success of various screening tools in uncovering nutritional risk.

Reliability is also key to the assessment of a screening tool. One way of assessing reliability is examining whether the same result is obtained when different nursing personnel perform the screening. A series of people are involved in the screening of nutritional risk in nursing homes and in the home care services. For the screening to be reliable, it is essential that the result obtained is the same, independently of who performs the screening. None of the studies had investigated this, but one study compared the result from the nursing personnel’s screening with MNA-SF and the patient’s own completion of the form (MNS-SF-Self) (29). They found the results to be relatively similar. This should be investigated further as having the patient fill in the screening form would save time for nurses.

A screening tool as such uncovers only whether the elderly person is at risk for malnutrition. Nurses are in charge of attending to the nutritional needs of patients, and it is essential that nurses follow up with efforts such as small portions, frequent meals and nutritionally dense food (44) for patients found to be at risk of malnutrition.

Conclusion

This study shows that there is little research available assessing validity, reliability and applicability of screening tools to uncover risk of malnutrition in elderly in long-term care facilities and community-dwelling elderly receiving home care services. Available research shows that MNA-SF is a well-suited screening tool for this target group. SNAQ-BMI and MST can also be good screening tools in long-term care facilities, but seem to overdiagnose malnutrition. More research is needed, particularly with regard to reliability and applicability.

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Introduction

Advanced communication skills are considered fundamental to the intensive care nurse’s competence (1, 2). Purposeful communication is one of several topics in the development of nurses’ clinical competence (3). Patients, nurses, and family members have described the importance of good communication skills for nursing quality and patient satisfaction (4–6). 

Little research has been done on communication methods or models to guide health care professionals in their interaction with critically ill patients. However, some studies have shown improvement of the quality of communication between intensive care nurses and patients and family members in end-of-life care (7). Patients are at their most vulnerable when admitted to an intensive care unit (8, 9). The result of surgery may be uncertain, and the patient may experience loss of personal control (10). Several studies show that various measures may improve intensive care nurses’ communication skills, and the target group is the voiceless mechanically ventilated patient (11, 12), rather than the conscious and alert postoperative patient who is able to express his or her needs. 

Acute, critically ill patients are to a greater extent awake and communicative when they receive non-invasive mechanical ventilation or invasive mechanical ventilation and this demands greater attention the patient’s communication needs. These patient groups are present in Post-anaesthesia care units as well. If health personnel do not communicate well, the patients may experience this as not being taken seriously and feel that their psychosocial needs are not met, which may cause experiences of worthlessness, patient dissatisfaction, and depression (8, 13–15). However, not much knowledge is available on how nurses achieve communication competence within the professional field of intensive care nursing.

Confirming patients’ communication may further health and improve the patients’ possibilities for collaboration (14, 15). Confirming communication skills is one way of recognising the patient (16). Listening, understanding, acceptance, respect and tolerance are, in addition to confirmation, ingredients in the concept of recognition, which is philosophically anchored in existentialism. Recognition is intersubjective, as it has the experience of the other as its basis (17). Eide and Eide (16, p.220) define confirming skills as «skills that communicate in words that one has seen and understood the core of what the other communicates. Being seen and understood are confirming in themselves». The aim is to communicate immediate, confirming, and recognising answers to what the patient expresses (16).

In order to develop communication skills further, simulation or a traditional academic didactic approach may be used, although much seems to indicate that simulation based learning is preferable (18–20). Simulation as a way to learn communication has resulted in improved skills for students at basic level nursing (21, 22), for health personnel on oncological wards (23), and for nurses in psychiatric wards (24).

Nurses with good communication skills may be of great importance to the patients.

Simulation based learning may be divided into two main categories: for use in developing technical skills and for use in developing non-technical skills (25). Examples are treating traumatised patients (26, 27), advanced emergency heart and lung resuscitation (28), and to further patient safety in intensive care nursing (29, 30). Communication skills also entail awareness in relation to other types of simulation – such as training to achieve ethical competence and to develop communication skills needed in complex patient situations (31). We have been unable to find simulation used to further develop verbal and non-verbal communication skills in Post-anaesthesia care units.

Simulation based learning as method is anchored in learning theories such as Kolb’s circle and Bloom’s taxonomy; these theories can shed light on why simulation is considered an effective learning method (32). Knowledge and understanding resulting from simulation are basic measures of competence.  If the participants are able to use and analyse what they have learned, this is a better measure of competence. The way the participants use former experience and integrate the new into their thinking is of importance to the learning outcome (32).  Simulation consists of the phases briefing, scenario training, and debriefing, and is a challenging way to learn (33). The aim of simulation is to achieve a change in practice, sustained over time (32–34).

Simulation based learning turns out to be a method for improving patient outcomes (35). Participants have demonstrated skills in emergency procedures that they have learned in simulation, up to one year later (36). This suggests that simulation is an appropriate method for achieving quality improvement in practice.

We were inspired to strengthen the professional practice on the ward by adapting confirming skills to a communication model for patients on a Post-anaesthesia care unit. On the unit in question, there were no specific methods implemented for communicating with the awake and communicable patient or with the awake patient receiving invasive mechanical ventilation. We were recommended to use simulation rather than traditional teaching methods (19, 23), and we developed a one day simulation-based course for teaching confirming communication skills. The course consisted of a theoretical introduction to the communication model, and scenario training in the use of confirming skills.

The purpose of the study is to describe how nurses on a postoperative ward assessed the utility of a simulation-based communication course in which the aim was practical use of confirming communication skills in the encounter with the postoperative patient.

In this article, we want to explore whether the simulation helped the nurses gain increased understanding of how the communication model may be used in practice, and whether the nurses’ communication skills improved after the simulation.

Design and method

The study has a quantitative design and the method used was a survey by questionnaire. This method is recommended for gaining knowledge of a larger group’s opinions and behaviour in encountering a phenomenon (37).

The study is part of a collaborative project between a Post-anaesthesia care unit at a university hospital and the postgraduate education in intensive care nursing at a university college in Eastern Norway. The collaborative project aimed to strengthen the students’ practice supervision and strengthen the professional practice at the unit. The communication course was held in February 2013.

Population and sample

The population consisted of 60 nurses on a Post-anaesthesia care unit, of which around 80 per cent are intensive care nurses.  The sample in this survey consisted of 49 nurses participating in the communication course.

Context

The postoperative ward treats and nurses patients after planned and acute operations and traumas. The majority of patients stay for less than one day before they are transferred to a general ward or other surveillance or intensive care unit in the hospital.

The communication course

Simulation-based learning was used, and the course day started with 60 minutes of theory presented by third author. The communication model was based on Eide and Eide’s (16) description of confirming skills in communication, with examples from postoperative practice (table 1).  

The theory lecture was followed by video recorded simulation with debriefing, lead by facilitators. The desired learning outcome from the simulation was the ability to use confirming communication skills. Following recommendations that smaller groups may increase the participants’ engagement, the nurses were divided into groups of 6 – 8 during the simulation (18). The course lasted four days, with two groups on each course day. One and a half group had scenario training in training areas with video recording. The observers were present in the same room. The other groups had scenario training in a simulation laboratory, with a separate room for the observers. The scenarios were created from a postoperative context and lasted 5-8 minutes. 

The scenarios had as their basis the adult, alert and orientated patient. All participants participated in one scenario, and acted either the patient or the nurse. A «timeout» was possible for conferring with the facilitator during the scenario training. The observers were in a separate room with video transmission and were asked to observe the use of specific confirming communication skills.  The debriefing was about the nurse’s and the patient’s experience. The participants did not have to watch the video playback of themselves during the debriefing, which lasted around 30 minutes. The course was pilot tested with an evaluation that resulted in a better flow in the scenarios, among other things.

Confirming communication skills are one way of acknowledging the patient.

The questionnaire

The theoretical foundation used to develop the questionnaire, in collaboration with a statistician, was communication theory, theory on use of simulation, and research theory (38,39). To operationalise the research questions we developed a form with 33 questions, of which one was open. A variable is a characteristic of a phenomenon and may have various measurement levels (40). The variables were on the nominal level and the ordinal level. The nominal variables were: nurse/intensive care nurse, experience as nurse/intensive care nurse, and prior participation in communication courses. The ordinal variables were: use of confirming skills, improvement of communication skills, utility for supervision of students, utility value in typical patient situations, and increased understanding of the model learned through simulation training.

The ordinal variables were measured with a 5 point Likert scale (37), where agreement on statements are graded from «strongly disagree» (one), «disagree» (two), «neither disagree nor agree» (three), «agree» (four) and «strongly agree» (five). We chose gradation three as a neutral answer alternative on recommendation from the statistician. The questionnaire was tested in a pilot test (n=5) and revised based on feedback received. The questionnaire was distributed to the nurses six months after the communication course, in September 2013.

Ethical considerations

Simulation is a method in which nurses are observed by colleagues, and this was used as learning arena. Having one’s behaviour and actions evaluated leaves the participant vulnerable, and this must be taken into consideration. We thus tried to establish a caring atmosphere for the participant all through the process. The communication course was obligatory for the nurses. We informed them that the video recording would be erased immediately following debriefing.

The ward administration gave permission to evaluate the collaborative project. The Data Protection Officer at the hospital approved the project as a quality improvement study.  The data from the survey were stored on the hospital’s research server in accordance with guidelines from the Data Protection Officer. Data were anonymised and will be erased after the data have been used. The nurses were informed orally and in writing on the purpose of the survey and that participation was voluntary. Returning the questionnaire was considered as consent from the respondents. It was not possible to withdraw the questionnaire, as it was impossible to trace it back to the individual participant. This was considered the most «secure» way of anonymising the findings in an ethically responsible manner.

Analyses

We used the programme Statistical Packages for Social Sciences (SPSS) version 18 to register the data. We did frequency analyses to show the distribution of the nurses’ answers on each individual variable (40). The frequency distributions are shown in Figures 1-3. In the figures the Likert scale values are combined from five to three categories to simplify the presentation. We did the analyses and the presentation of the results in text and figures in accordance with advice from the statistician.

Results

Demographic data

Forty-nine nurses participated in the communication course, and 40 nurses (82 per cent) responded to the questionnaire (n=40). Twenty-nine nurses (74 per cent) were intensive care nurses, and 33 (83 per cent) had participated in a communication course earlier in their education.

Simulation as learning method

53 per cent of the nurses strongly agreed or agreed with the statement that the simulation improved their understanding of how to use the communication model in practice (see Figure 1).

The communication model had highest utility for the nurses in their encounter with patients with inoperable cancer, and patients injured in an accident (see Figure 2).

Communication skills following the course

33 per cent of the nurses strongly agreed or agreed that their communication skills had improved after the course, while 47 per cent neither agreed nor disagreed with the claim (see Figure 3).

Discussion

Simulation as learning method

53 per cent of the nurses reported that the simulation improved their understanding of how to use the communication model in practice. Several factors may have influenced this result, such as aspects of simulation as learning arena and how nurses later integrate what they have learned in concrete patient situations.

Experience with simulation training generally suggests that some will find the method somewhat uncomfortable. After completion of the scenario it is subject to reflection in a debriefing session to bridge the gap between knowledge achieved through simulation and its use in practice (33,34). The facilitator has an important role in making such learning through simulation comfortable and useful to the participants (34). In our study experienced facilitators lead the debriefing, and they were related to the ward. We focused on that the participants were there to learn, not to be evaluated. Security was an important factor in the learning environment and in making the participants feel comfortable. To protect the participants we emphasised confidentiality in the groups, assuring the participants that what happened there would not be communicated to the ward.

Simulation may be used to further develop communication skills.

The participants played the parts of both nurses and patients, and the learning effect of simulation may depend on how good an actor one plays against (41). Half of the nurses were unable to try out the nursing role, for practical reasons. This may have yielded a lower learning outcome for those who played only the patient role. On the other hand, it is recommended that the participants do play the patient in scenario training. That enables them to take on the patient’s perspective and may add greater realism to the scenario (41).

To watch a part of the video during debriefing has a learning effect and has been considered the «gold standard» of simulation (33, 34). However, a more recent review article points out that debriefing without a video playback may be equally effective (42). The video recording was shown with both observers and scenario participants present. The participants were free to not watch the video of themselves during the debriefing in the communication course, and several did so.  Using video playback during debriefing may distract the participants from focussing on the scenario’s learning goals (42). It is therefore important, according to our experience, that judgement is used in using video playback during debriefing, especially with regard to what sequences are used for learning purposes. 

Developing communication skills further

Thirty-three per cent of the nurses reported improved communication skills following the course. This may be interpreted as a low result, but 47 per cent answered «neither nor» to this question. A weakness in the study’s design is that we did not measure communication skills prior to the course. We had no control questions in the questionnaire about knowledge on confirming communication or other communication skills prior to the course. It is therefore difficult to say whether the course has resulted in improved communication skills. A pretest-posttest design could have shown a real change in, or effect on, the nurses’ skills following the communication course. A critique of this kind of design is that the effect is not necessarily caused by the intervention, but by other causal effects that cannot be controlled (37).

Being as the course was developed for students as well as nurses at the unit, the patient scenarios in the simulation may not have been sufficiently challenging for the experienced nurses.  Researchers emphasise that theories such as social learning theory and adult learning theory may shed light on the way experienced persons learn, as opposed to students, in a basic training programme (43). Elements of the theories state that experienced persons are problem-focussed and use their experience to assess the new material that is presented to them. They learn based on what is useful to them in their practice, and inner motivation is important for learning. The question is whether we were able to motivate the nurses to use the skills in practice. We did, however, assess the communication model as useful in encounters with postoperative patients, such as patients with inoperable cancer, and patients injured in accidents.  The participants acknowledged the utility of the skills, but maybe not of the simulation staged to learn them.

Even if the communication course turns out to improve communication skills, there is little evidence that skills learned in simulation are maintained over time in clinical practice (20,44,45). Whether great resources should be used to teach communication skills through simulation may be questioned.

However, clinical supervision has proved to maintain communication skills in oncological nursing practice (46). A resource group was established at the unit after the course to help maintain knowledge acquired in the simulation. One of several interventions was that third author was attentive to communication skills in clinical supervision with both a group of nurses with special competence in such skills and students in post graduate education. The hope is that confirming communication skills were implemented at the unit in more than one way.

The communication course is now obligatory for students in postgraduate education in intensive care nursing when in practice at the Post-anaesthesia care unit. Newly employed nurses are given an introduction to the communication model as part of their introductory programme.

The study’s weaknesses

One of the weaknesses of the study is that we used a self-developed questionnaire. We did, however, not find any already constructed questionnaire that suited our purpose, and the questionnaire was developed in collaboration with the statistician and then pilot tested. A survey like this yields knowledge of the nurses’ opinion at one point in time. One challenge with self-report studies may be a possible discrepancy between the skills the respondents report having and the skills they do in fact use in practice (37). The nurses received the questionnaire six months after the communication course. They may thus have had too little time to develop their communication skills.

Conclusion

The study suggests that simulation increased the participants’ understanding of the possible uses of the communication model, but no more than 33 per cent of the nurses considered their communication skills to have improved after the simulation. Communication, however, is very complex and encompasses more dimensions than merely confirming communication skills. In the study we chose to focus on this one communication model. The study’s design does not measure the effect on patient care directly, as this was not the purpose of the study.

There is a need for more knowledge on simulation-based communication courses to evaluate their effect and whether such courses may yield lasting improvement in communication skills.

Acknowledgments

We are very grateful to the Post-anaesthesia care unit’s nurses who took the time to answer the questionnaire. We also want to thank the Simulation Centre at Oslo University Hospital and department manager Lasse Schmidt for the use of facilities and personnel during the course. We also want to thank the facilitators. Professor Leiv Sandvik at Oslo Centre for Biostatistics and Epidemiology has guided us in the development of the questionnaire. The project is financed through collaboration funds from the University College of Oslo and Akershus.

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Introduction

In 2015 there were 722 741 elderly persons in Norway, that is persons aged 67 years or above (1). The proportion of elderly persons is increasing in the population and will in the foreseeable future make up a large proportion of the population. More elderly with a need for care create challenges and possible shortages of health care personnel (2). In order to maintain sustainable care services it will be necessary to solve future care challenges in a different way than we do today. According to the Ministry of Health and Care Services, the care services have a great untapped potential in using welfare technology which may give the users greater security and a better possibility for managing on their own on an everyday basis (2).

Advanced age in and of itself is frequently accompanied by unavoidable ailments for some, such as a weakening of the muscles (3). To some, a lack of strength may make them unable to walk or care for themselves. A reduction of muscle mass may also cause a weakening of stamina, which in turn may lead to passivity. The question then becomes what may best influence health and function so that more elderly manage to maintain central functions as long as possible, without care personnel having to take over these functions for them. Part of the answer is in assisted strength training, here referring to training or exercise under professional supervision. Such training yields increased muscle strength and muscular endurance and thus improved ability to perform everyday activities in older age (4).

Knowledge of what may improve the health of the elderly (4) has in many countries resulted in increased attention to “hverdagsrehabilitering” (Norwegian), “hemrehabilitering” (Swedish) (5) and what in English speaking countries is often called “reablement” (6), “active service model”, “everyday rehabilitation” or “restorative home support” (7). Ideally everyday rehabilitation shall support the older person’s own resources and participation in everyday situations. Everyday rehabilitation is further a client centred work mode, where the various professions no longer have profession specific goals. According to Swedish research, everyday rehabilitation may be just as much about developing and reclaiming functions and activities after a hospital stay as about maintaining or preventing reduction of function (5). 

What is new with everyday rehabilitation is that it frequently entails a great degree of interdisciplinary collaboration, such as between ergo or physical therapists and care personnel in a municipality. This kind of interdisciplinary collaboration is often anchored in the home care services and in a common goal of furthering everyday mastery. Health care personnel from the home care services commonly assist the user in daily training according to a training programme worked out through a collaboration between user, physical therapist, ergo therapist and nurse. Everyday rehabilitation has its origin from two main sources: everyday rehabilitation in Scandinavia and in some countries outside Scandinavia (4). The Scandinavian variety has its origin in the Östersund municipality in Sweden (5).  Inspired by Östersund, Fredericia municipality in Denmark developed everyday rehabilitation in 2008 (8,9).

The purpose of this study is to gain knowledge that may be transferred to Norwegian municipalities planning to implement video communication (VC) in everyday rehabilitation in the municipal care services. In such cases ergo or physical therapist and health personnel may supervise care personnel in the home of the individual user, using VC.

Our literature study, a scoping review (10), has as its point of departure research reporting a variety of experiences with telerehabilitation. A scoping review is generally less extensive than systematic literature studies. Scoping review studies have a wider focus than systematic literature studies, and this type of study is frequently based on both qualitative and quantitative studies (10).

Telerehabilitation entails technology and methods that may be used to support, intervene or facilitate everyday rehabilitation in the primary health care services (11).

In our scoping review we are particularly interested in finding out how such a treatment programme in combination with VC has been received by users (in the article used synonymously with patients), health personnel and organisations where this has been implemented and researched.

The research questions to be illuminated are the following:

• Which experiences do users have with VC technology in rehabilitation and/or everyday rehabilitation context?
• Which experiences do health personnel have with VC technology in rehabilitation and/or everyday rehabilitation context?
• Which experiences do organisations have with VC technology in rehabilitation and/or everyday rehabilitation context?

In the next paragraph we perform a conceptual analysis with a basis in literature on the chosen subject. We also introduce the concept tele-everyday-rehabilitation. We are of the opinion that this concept encompasses the very treatment methodology beneath everyday rehabilitation and use of VC technology. Next is the methodology section, listing the sources and search words used in the literature study. The result section sums up the findings based on user experiences, experiences of health and care personnel and experiences of primary health care organisations. The discussion has as its point of departure the findings and their relevance to any planning of trial projects in which the municipalities want to use this kind of technology and treatment methodology. The literature study is financed through the VRI programme in Møre and Romsdal.

Conceptual analysis

Knowledge on issues similar to the ones we address in the literature study is in the English language research literature referred to by concepts such as “telerehabilitation”, “e-rehabilitation”, “telemedicine”, “telecare”, “telehomecare” or “telehealth” (12-15). The concepts are often used interchangeably, and may be difficult to tell apart. We have chosen to use Lai et al.s (16) definition of telerehabilitation: “Telerehabilitation is the provision of distance support, assessment and intervention to individuals with disabilities via telecommunication, and is a subcomponent or the broader area of telemedicine.” (16).

The definition emphasises that telerehabilitation entails that health services may be offered at a distance, in particular to users in sparsely populated areas. Telerehabilitation (TR) is often used as a collective term and describes health services where traditional rehabilitation is used in combination with advanced technology, such as VC. Langberg et al. (17) divide TR into three categories: image based TR, sensor based TR and TR based on virtual technologies. TR may take place either through synchronous solutions (in real time), enabling direct contact between user and therapist, or asynchronous solutions (off line) with a “stand-in” – a virtual therapist (17).

TR may be used in the primary health care services without the involvement of the specialist health care services. TR may also be used within the specialist health care services, or between the specialist health care services and the primary health care services. The latter way of organising TR demands proper coordination between the two administrative levels in the health services. In order to find an adequate collective concept to cover both everyday rehabilitation and the use of VC technology, which we here consider a subcategory of traditional TR, we introduce the concept “tele-everyday- rehabilitation”. The concept is a combination of the words “tele” and “everyday rehabilitation”. The prefix “tele” shows that teletechnology is used to transfer information, e.g. by using video communication equipment in connection with treatment or transfer of information in general. “Everyday rehabilitation” entails a rehabilitation service in close collaboration and integration with the home care services (4), and covers early intensive and interdisciplinary rehabilitation in the home.

Tele-everyday-rehabilitation we thus define as a relatively intensive and short-term treatment method used to support the users’ resources in their own home, rather than having care personnel take over functions for the elderly person.  Tele-everyday-rehabilitation also encompasses the technology used to reach users at a distance, as with video communication equipment which connects user(s) and therapist(s) through a secure Internet connection. In this context a secure Internet connection in Norway will entail using the service of Norsk Helsenett SF ( www.nhn.no) to transfer digital information.

Everyday rehabilitation in a municipality is traditionally performed by ergo therapists and physical therapists who collaborate closely with nurses or other health care personnel. The same ergo therapists and physical therapists will generally follow up one user, but the people from the home health services who go through the treatment programme with the user will frequently change. Even if such persons have proper knowledge of everyday rehabilitation they do depend on supervision and follow-up from an ergo therapist and physical therapist in order to quality assure that the exercises are done correctly. With a tele-everyday-rehabilitation programme it is possible to give supervision at a distance by using synchronous VC technology.

Figure 1 shows how we have chosen to place telemedicine, telerehabilitation and tele-everyday-rehabilitation along the dimensions of treatment intensity (high intensity vs low intensity) and the dimension of treatment duration (short-term vs long-term). In addition we distinguish between context: the specialist health services (hospital) vs primary health services. In the context of primary health services the tele-everyday-rehabilitation will normally take place in the home of the individual user, while traditional tele-everyday-rehabilitation may also take place in institutions. Traditional telerehabilitation will frequently be of longer duration (months or years) and have a lower treatment intensity compared to what we have chosen to call tele-everyday-rehabilitation.

In the upper left hand corner (Figure 1) one finds the context in which telemedicine is traditionally offered. Telemedicine has its origin in the specialist health services and medicine, and may encompass areas such as telepathology, telesurgery, teletherapy and a series of other specialties. Compared to health services which traditionally are offered by the primary health services, ideal-typical features of using telemedicine and treatment in hospital is that the patient’s treatment is intensive and of relatively short duration (18). The treatment in the primary health services, in particular of the group of elderly with multiple diagnoses, is generally of relatively long duration and offered with fairly low intensity (4). 

Tele-everyday-rehabilitation is thus distinct from traditional rehabilitation in the primary health services in that the treatment is fairly intensive, entailing physical training and training in everyday activities under supervision, and that the programme is frequently short-term (4-10 weeks). The overlapping of the circles suggests that the development and emphasis of the administration of regional health authorities and municipalities go in the direction of more coordination and emphasis on a holistic patient trajectory between the health services (19). Using a variety of types of technologies may be one of several ways of ensuring an improved rehabilitation trajectory for the patient (20). 

Use of VC and telemedicine solutions

VC is a priority in the Norwegian Directorate of Health’s plan on electronic collaboration and has for many years been used as a tool in the expansion of telemedicine (20). VC can potentially strengthen collaboration and accessibility within the health services through offering individual health services independent of distance, such as follow-up and collaboration around rehabilitation of patients. The use of telemedical services in Norway is low in comparison with the number of face-to-face consultations (20). In Norway video communication has not yet become an established way of working in the specialist health services. The status of use and extent of this type of rehabilitation services in the primary health services is not known. There is, however, some trial project activity, a. o. in Arendal and Kristiansand, looking into how mobile units (PDA=personal digital assistant) may support the everyday rehabilitation effort (21). VC technology does not, however, enter into the latter trial. Everyday rehabilitation in general, that is, without VC technology, is more common (4).  According to Meld. St. 26 (2014-2015) there were 100 municipalities in Norway in 2015 with practical experience with everyday rehabilitation, and more had plans of starting up (8).

Method

As mentioned in the introduction, scoping review has been chosen as research design for this study. According to Arksey and O’Malley (10) a series of arguments favour scoping review. We have taken our point of departure in one of several justifications for using scoping review as method: “To summarize and disseminate research findings: this kind of scoping study might describe in more detail the findings and range of research in particular areas of study, thereby providing a mechanism for summarizing and disseminating research findings to policy makers, practitioners and consumers who might otherwise lack time or resources to undertake such work themselves.” (10)

Like systematic literature studies, scoping review studies entail that the researcher systematically approaches and reviews available literature on a subject. A literature study thus entails gaining an overview of the relevant literature in the field in question. A review of the literature may give a basis for further investigations of the phenomenon, but will here be used for planning trial projects in municipalities in connection with tele-everyday-rehabilitation. Our “scoping” is a literature study that is a less extensive and explorative mapping of the research literature in the chosen field. Knowledge from our literature study shall be used to prepare for the expected challenges related to trying out this kind of technology in the municipalities. This entails a belief that a municipality may prepare for a certain type of challenges.

We have performed a systematic literature search. Search words and inclusion and exclusion criteria were defined in advance. We searched the databases CINAHL, Science Direct and PubMed. The search was performed on March 12 2015. The search phrase used was “reablement OR everyday rehabilitation OR active service model OR restorative home support AND telerehabilitation OR telecare OR telemedicine OR telehealth”.

The inclusion criteria were older users (patients) aged 65 +, living at home, competent to consent to participation, and had used video communication. Some of the included studies have a mixed user group, but include users over 65 years of age.

We included only original articles published in English in journals with peer review during the period 2004 to 2015. The search yielded a total 1060 hits. CINAHL yielded 632 hits, PubMed 60 hits, while Science Direct yielded 368 hits. After having selected overlapping included articles, 174 articles were selected based on the content of the abstracts. Of these 153 articles were excluded as they did not fulfil the inclusion criteria. The remaining 11 articles were included in our sample. We accessed all full-text versions of the articles. The analysis followed a multiple step procedure: 1) The articles were first read by first author, 2) first author worked out categories based on what we wanted to know, 3) the articles were uploaded to Nvivo for further analyses, and 4) based on the coding of the content in the articles, first author made summaries which have been transferred to three tables in the result section:

• A table showing the result of research based on the user perspective
• A table based on the perspective of health personnel
• A table based on the perspective of organisations

Second author has contributed with practical experience of everyday rehabilitation and has read the selected articles and participated in all phases of the writing process.

User experiences

Table 1 gives an overview of summed up knowledge where the point of departure is older users’ experience with video communication equipment or similar technology used in connection with telerehabilitation.

Table 1 shows that users to a great extent are satisfied with TR. However, care should be taken with this kind of study as several have excluded users with cognitive failure, or as van den Berg et al. (15) points out:

«Older patients have a higher prevalence of comorbidities including physical or cognitive impairments that influence the ability to use technical devices or communicate by telephone or video-conference. However, in 26 of 68 included studies, patients with such characteristic comorbidities and limitations were excluded.» (15) 

The experiences of health personnel

Professionals’ accept of such technology is in this type of technology project often put to the test due to a lack of knowledge, general scepticism or a lack of clinical basis and justification for the change. Several studies recommend attention to training and collaboration with health personnel and users. In table 2 we have summed up some of the findings based on the literature in question.

Experiences of the health organisations in the primary health services

Earlier research shows that the implementation of TR and/or telemedicine may constitute an organisational challenge. The challenge is particularly great in the transition from being a trial project to becoming an integrated part of the health services (20). In table 3 we show some findings where the organisational implications of telerehabilitation have been studied.

Discussion

The major part of the research we found is based on studies from the USA. Due to dissimilarities between countries, such as differences in national cultures (28), differences in laws and regulations regarding the financing of telerehabilitation services (29), and differences in the organisation of primary health services (30), we are of the opinion that one must be critical to whether such knowledge is relevant and transferable to a Norwegian health services context. We cannot wholly exclude the possibility that we may have missed studies that should have been included in our scoping review.

Research question 1 aimed at surveying experiences users have with VC technology in rehabilitation and/or everyday rehabilitation contexts. Our scoping review has shown that older users (aged 65+) are mainly satisfied with home-based health services where VC technology has been used. So TR may constitute an alternative or supplement to traditional rehabilitation (15,21,23,24).  Users must, however, receive the necessary help with handling this technology, for instance with the in-home trainer taking the responsibility for this.

In Norway many elderly are in good health, and elderly Norwegians express a wish to remain in their homes as long as possible and to preserve independence and personal mastery in spite of illness and suffering (8). The Norwegian population is also quite advanced in the use of technology – many elderly are used to teleservices (bank services, tax services) and handle computers, tablets and smart phones. We therefore have reason to believe that elderly Norwegians are well motivated and at the outset positive to using VC technology. Local trial projects in Møre and Romsdal show great success with introducing Skype in nursing homes to improve contact between residents and family. Krøvel (31) found that the frail elderly enjoy Skype the most; they can communicate with family in spite of language barriers and cognitive challenges (31).

To succeed with this kind of treatment programme, seen from a user perspective, literature points out that user training is necessary, the equipment should be easy to use, and sound, contrast and screen resolution should be adapted to the elderly user’s needs (see table 1). With regard to the latter point, research gives no concrete recommendations when it comes to VC equipment, Internet speed etc. The reason may be that this type of technology changes fast, and that the types of equipment, set-up, configuration, etc. are relatively varied and extensive. This is clear from local trial projects; the challenges with Internet technology and digital systems create resistance in the users (32). Experience shows that technology should be stress-tested in other places than with the end user, such as in a trial apartment (32).

The other research question we wanted to know about was the health personnel’s perspective. Summed up research (se table 2) shows that health personnel is relatively satisfied with telerehabilitation. Here as well there will be a need for necessary training given before the organisation establishes such services. From an employer perspective it should be taken into consideration that not everyone will be positive to this type of services at the outset. In the research such scepticism is attributed to a. o. that the change may entail a redirection of the flow of work, change in the organisation of the work, fear of a weakening of the relation and trust between user and therapist, and a feeling of increased work-burden as a result of the changes (15,24). Paradoxically, older users rarely experience weakened trust as a problem in this context (15,23). That the older user has a designated and/or the same therapist over time, seems to be more important for the user and therapist relation than whether the encounter is physical or at a distance through VC (15).

Our third research question started from the experiences of organisations that have started using TR. The results from the organisations’ perspective are summed up in table 3. We found relatively few studies with this perspective. The existing studies show that this type of e-health service does not necessarily lead to a reduction in costs (34). Kairy et al. (14) point out that the technology used can be quite expensive. Prior to implementation, and in order to ensure good clinical and political decisions, it is important to understand what an introduction of telerehabilitation services may entail in the way of costs (14). There are, however, some uncertainties attached to this. Due to the complexity of the issue and a series of methodical challenges it is difficult and challenging to measure cost effectiveness in this context (35). However, several studies show that compared to treatment in hospital, it will be more cost effective to treat this type of patients locally, in the home or in an institution (15,35). Other challenges than the purely economical are addressed in other studies – e. g. problems with unstable Internet connections, increased expectations of training among the employees, and challenges linked to coordination and collaboration between various organisations (see table 3).

The purpose of the study was to assemble knowledge that may become useful in the planning and implementation of everyday rehabilitation supported by VC in a municipality. We have specifically chosen to focus on three perspectives, i.e. user, health personnel and organisations, which we find central to implementation of VC and everyday rehabilitation. In order to limit the study we have not commented on studies with a purely clinical focus, such as the effect of TR or similar treatment method on patients. We here refer the reader to earlier surveyed research that states that TR and/or similar treatment methods have fairly similar treatment results when these are compared with traditional rehabilitation (15,23,36).

Conclusion

The introduction of telerehabilitation will most likely make it easier to reach more users in their homes, especially in sparsely populated areas. Ergo and physical therapists can primarily supervise user and health personnel from the home health services at a distance through sound and image, and ensure that exercises are performed correctly.

The effect of the service will thus increase. By distinguishing between telerehabilitation and tele-everyday-rehabilitation analytically and definition-wise, we are of the opinion that it may be easier to compare research results as municipalities harvest experience with this type of health services. Our definition encompasses the technology, treatment method and idea foundation behind everyday rehabilitation, and should be used to distinguish tele-everyday-rehabilitation from traditional TR programmes.

This study may provide a basis for planning, implementing and trying out VC in everyday rehabilitation locally. At the same time the study also shows some of the challenges an introduction of this type of health services entails for users, health personnel and organisations. Thus tele-everyday-rehabilitation, and welfare technology in general, is no “quick fix” for solving the challenges in the primary health services.

Based on our findings we recommend that studies be performed in Norway with the aim of acquiring more knowledge of this kind of health services. The organisation perspective in particular is overlooked in research, and it would be interesting to assess cost – utility value in further studies. One could assess investment costs against possible gains in the form of increased personal mastery and quality for the user, and thus postponement of need for services. As there is a shortage of research in this area in Norway, we hope the funding authorities will make a priority of this in the future.

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Introduction

Dyspnea or breathlessness is a complex symptom in many patients with advanced disease (1,2). Research has shown that 94 per cent of patients with chronic lung disease and 78 per cent of patients with lung cancer suffer from breathlessness during the last year of life (3), and that breathlessness may be associated with poor quality of life, anxiety, reduced functioning, and reduced life expectancy (1,2).

The patient’s experience of breathlessness frequently does not necessarily correspond with the disease’s degree of severity and objective measures (4,5). In palliative care systematic use of instruments to measure the patient’s own experience is therefore important in order to identify symptoms, gather information on disease progression, and evaluate the effect of interventions (6). Data based on such measurement instruments are commonly known as patient-reported outcome measures (PROMs).

Before we started working on this survey we performed a literature search to see if reviews answering our question had already been carried out. The search resulted in two relevant hits (7,8). Both reviews were based on ten-year-old literature searches and both revealed a need for a further evaluation as to which PROMs are suitable for measuring breathlessness in palliative care (7,8). The purpose of this systematic review has been to give an overview of the PROMs available for measuring breathlessness in palliative care patients, and the instruments’ measurement properties.  Measurement instruments must have dimensions for both breathlessness and anxiety to be considered for inclusion.

Method

We have used a methodological framework called COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN). The framework was developed through an international consensus process and gives specific recommendations on terminology, taxonomy, and use of method in studies dealing with PROMs and their measurement properties (9-11).

Literature search

We searched systematically for literature in the databases MEDLINE (1946–), Embase (1974–), PsycINFO (1806–), AMED (1985–), CINAHL (1982–), Cochrane Library, and SveMed+. The search strategies entailed index terms and text words adapted to each database for the categories 1) breathlessness, 2) measurement properties, and 3) palliative care, cancer, or chronic obstructive pulmonary disease (COPD). We performed citation searches for the Bausewein et al. (7) and Dorman et al. (8) reviews in Science Citation Index and scanned the reference lists of relevant publications. The searches were performed without limitations as to language and time, and peer reviewed by a medical librarian. The literature searches were performed in March 2014 and updated in December 2015.  Complete search strategies are available in master’s thesis (12).

Selection

Titles and abstracts were considered for inclusion using predetermined criteria (table 1). Articles considered relevant were accessed in full text and evaluated for inclusion. All steps in the selection process were carried out by two reviewers (KS/KGB) independently, and disagreement was resolved through discussion.

Measurement properties

Before using new measurement instruments it is important to ensure that the instruments have good measurement properties, i.e. that they measure what they are supposed to measure, and that the results are trustworthy (11). In the COSMIN taxonomy the measurement properties are divided into three main categories: reliability, validity, and responsiveness.  Reliability refers to whether any sources of error are sufficiently small and if the results are sufficiently stable for the measurements to be trusted. In the COSMIN taxonomy reliability consists of three subcategories, called internal consistency, reliability (here test-retest reliability), and measurement errors. Validity describes whether an instrument measures the properties it is supposed to measure, such as whether persons who score differently on a depression scale, also score differently on other similar scales. The COSMIN taxonomy defines three subcategories of validity properties (content validity, criterion validity, and construct validity), where construct validity is further divided into the three categories structural validity, hypotheses testing, and cross-cultural validity. Responsiveness is a measure of whether the measurement instrument is able to capture important changes over time (10).

Evaluation of methodological quality

We evaluated methodological quality and risk of bias in accordance with the COSMIN checklist (13,14). The checklist consists of a variety of forms to be filled in to assess whether the measurement properties reported in a validation study are trustworthy. Each validation study generally measures a limited number of measurement properties, and only forms with relevance for the measurement properties that the study seeks to evaluate are completed. The studies’ quality is assessed as excellent, good, fair, or poor. All quality assessments were carried out by two reviewers (KS/KBT), independently. Disagreement was resolved by discussion or by involving a third reviewer (KGB).

Data extraction and categorisation of measurement properties

One reviewer (KS) went trough all included studies and registered background information on the study, participants, measurement instrument, measurement properties, methodological quality, and outcome using a data extraction form. The data extraction was then quality assured by another reviewer (KGB). For each study we evaluated the measurement properties of the relevant instrument as positive, indeterminate, or negative against a set of predetermined criteria (appendix I).

Documentation on the instruments’ properties

We summarized the total documentation on the instruments’ measurement properties in a best evidence synthesis taking into consideration methodological quality, measurement properties, and degree of consistency. Documentation quality is rated as strong, moderate, limited, conflicting, or unknown, based on the criteria listed in appendix II.

Results

We identified 1948 references, and ended up including 15 studies (15-29) (figure 1). Table 2 gives an overview of the studies included.

We identified four relevant measurement instruments: Cancer Dyspnea Scale (CDS), Severe Respiratory Insufficiency (SRI) Questionnaire, Dyspnea Management Questionnaire (DMQ), and Respiratory Symptom Checklist (RSC). The instruments’ measurement properties are summarized in table 3.  

Table 4 shows our assessment of methodological quality and risk of bias, and the measurement properties of the included studies. A more detailed overview of various properties is available in master’s thesis (12). The best evidence synthesis that summarize results across all included studies is presented in table 5. In the following we summarize the main results for each of the four measurement instruments.

Cancer Dyspnea Scale (CDS)

CDS was developed in Japan for cancer patients and measures aspects of breathing difficulties (15). Development and validation are described in four publications (15-18) (table 2).

Representatives for the patient group and professional experts were involved in the development of CDS, and the measurement instrument was pilot tested in the target population (15). We assess the content validity of CDS as being probably very good (table 5).

Three studies (15,17,18) confirm that CDS has a three-factor structure (table 3), but we do not have sufficient data to assess the instruments’ structural validity (table 5).

For hypotheses testing we have emphasised the comparisons between CDS and Hospital Anxiety and Depression Scale (HADS), Borg scale, and visual analogous scale (VAS-dyspnea). The result for hypotheses testing was negative in two studies (16,18) and positive in two studies (15,17) (table 4). As such the results are contradictory, which makes it difficult to conclude univocally (table 5).

Breathlessness results in poor quality of life, anxiety, lowered level of functioning and reduction of life expectancy.

The internal consistency of CDS was reported as positive in three studies (15,17,18) (table 4), and we assess the internal consistency of CDS as probably very good (table 5). The result for test-retest reliability was negative (15) (table 4), but we have limited trust in the available documentation (table 5).

Severe Respiratory Insufficiency (SRI) Questionnaire

SRI was developed in Germany to measure health related quality of life in patients treated with long-term mechanical ventilation (LTMV) due to chronic respiratory failure. The respiratory failure is due to various underlying diseases (19). Seven publications (19-25) have described development and validation of the instrument (table 2). The samples of two publications (19,22) overlap in part, and data for structural validity and internal consistency is thus taken from the Windisch et al. study (22).

SRI is developed from social, psychological, and physical health domains, and both patients and professional experts were involved (19). The Norwegian version of SRI was pilot tested among users of LTMV (25), and the content validity is probably very good (table 5).

The factor structure is evaluated in three studies (21,23), which all found that the original seven dimensions consisted of several factors. Two studies (22,23) showed that the factors within one dimension corresponded, and the authors thus chose to keep the original structure of seven dimensions. One study (21) found 13 factors. All three studies showed positive properties for structural validity (table 4). There is nevertheless uncertainty attached to the structural validity (table 5), first and foremost due to methodological limitations in the studies where this is assessed.

For hypotheses testing we chose to emphasise the comparisons between SRI and Short Form Health Survey (SF-36), Chronic Respiratory Disease Questionnaire (CRQ), HADS, and Medical Research Council Dyspnea Scale (MRC) (19-21, 23-25). In general the correlation was strongest between SRI dimensions and dimensions of the other instruments that measure related aspects, while the correlation was weaker between dimensions that measure different aspects. Total documentation shows that SRI probably correlates very well with other PROMs that measure similar properties (table 5).

Many patients with advanced serious disease experience breathlessness.

SRI is the only instrument of the four included in our review that is available in a Norwegian version (25). We therefore wished to evaluate the cross-cultural validity of the Norwegian version. The absence of a comparison with the original version for factor structure and a low number of respondents compared to the number of questions in the measurement instrument made us conclude that there is a need for more research before we can say anything certain about the cross-cultural validity of the Norwegian version (table 5).

SRI (20-25) showed overall positive properties for internal consistency (table 4); however, due to methodological limitations, uncertainties attach to the total documentation (table 5).  Test-retest reliability was assessed as positive in two studies (20,21) (table 4), but methodological weaknesses in the two studies leave us with limited trust in the total documentation (table 5).

Dyspnea Management Questionnaire (DMQ)

DMQ was developed in USA to measure the effect of lung rehabilitation and change over time in patients with COPD.  The purpose was also to accommodate for more directed treatment for professions such as ergotherapy and psychology (26). Three studies describe development and validation of three different versions: DMQ-30 (26), DMQ-56 (27) and DMQ-CAT (28) (table 2).

Data from qualitative interviews, literature review on the areas of breathlessness, anxiety, avoidance behaviour, functional status, health related quality of life, user satisfaction, and lung rehabilitation, as well as a review of other measurement instruments, made up the basis for the development of DMQ-30.  Both professional experts and patients were involved and a preliminary version was pilot tested among adults with COPD (26). DMQ-CAT is an electronic version and was developed based on an expanded collection of the questions from DMQ-56.  Involvement of professional experts and patients along with an extensive literature review made up the basis for the expansion (28). The documentation shows that DMQ-30 and DMQ-CAT probably have excellent content validity (table 5).

The original five-factor model for DMQ-56 was confirmed (27). The assessment of the factor structure of DMQ-CAT (28) showed that a four-factor model was better suited. For both versions the factors explained more than 50 per cent of the variance, but even if the result for structural validity points in a positive direction for both DMQ-56 and DMQ-CAT, the quality of the documentation is limited (27,28) (table 4). It is therefore difficult to draw any certain over-all conclusions (table 5).

No currently available measurement instrument is validated for use in measuring palliative care patients’ experience of breathlessness.

For hypotheses testing DMQ-30 is compared to Seattle Obstructive Lung Disease Questionnaire (SOLQ), Short Form Health Survey (SF-12), and HADS (26). DMQ-CAT was compared to University of California, San Diego Shortness of Breath Questionnaire (UCSD SOBQ), CRQ, COPD Self-efficacy Scale (CSES), and HADS (28).  For both versions the strongest correlation was between the DMQ dimensions and dimensions for the other instruments that measure related aspects, and the weakest correlation was between dimensions that measure different aspects. The documentation shows that we may have moderate trust in that DMQ-36 correlates well with other PROMs that measure similar properties, while we have limited trust in that DMQ-CAT correlates well with other PROMs intended to measure similar properties (table 5).

Comparisons of DMQ-CAT with the total number of questions suggested high correlation for all dimensions, with Pearson’s correlation coefficient 0.94-0.97 (28). In total we have moderate trust in the criterion validity of DMQ-CAT being good (table 5).

The internal consistency was positive for all three versions of DMQ (table 4). The documentation shows that we may have moderate trust in the internal consistency of DMQ-30, DMQ-56, and DMQ-CAT being good (table 5).

Test-retest reliability was positive for DMQ-30 (26) and DMQ-56 (27) (table 4). The documentation shows that we may have limited trust in the test-retest reliability being good for DMQ-56 (table 5). More uncertainty is linked to test-retest reliability for DMQ-30, due first and foremost to methodological limitations in the study where this was measured.

Respiratory symptom checklist (RSC)

RSC was developed in China to measure multidimensional aspects of breathing difficulties in patients with heart and lung disease (29).

Assessment of the factor structure showed 12 consecutive and non-correlated factors. By adding additional criteria Han et al. (29) found seven factors that seem to measure three dimensions of breathlessness (table 3), while two remaining factors sorted under other symptoms. In sum the nine factors explained 64 per cent of the total variance (29). A total assessment indicates that the structural validity of RSC is probably excellent; we lack, however, knowledge on other important measurement properties (table 5).

Discussion

We identified four PROMs for measuring breathlessness that satisfied our inclusion criteria: CDS, SRI, DMQ, and one respiratory symptom checklist, of which only SRI was available in a Norwegian validated version. The measurement properties of the four instruments were assessed in 15 studies. None of the included PROMs were validated directly for use in a palliative care setting, but on the whole they show promising properties for other relevant settings. The respiratory symptom checklist stand out as having been studied the least; there is, however, a need for more research to clarify important measurement properties for the other instruments as well.

Strengths and weaknesses of the study

We have worked out this systematic review in line with recommendations from the COSMIN initiative, which takes into account the special aspects of validating PROMs. The review builds on a wide and systematic literature search. All steps of the process were carried out by two reviewers independently, or carried out by one reviewer and quality assured by another person. Missing elements in the abstracts and the indexing of studies on measurement properties constitute a challenge to literature searches for reviews of PROMs (9). One weakness in our literature search is that search terms for respiratory failure were not included. Several of the studies on SRI were thus first identified in a review of relevant studies. This entails a risk that other relevant PROMs exist that we have not identified. We have not had capacity to search for “grey literature”, carry out supplemental searches on included PROMs, or contact professionals. All in all this entails a risk of there being relevant publications that we have not identified.

We evaluated the methodological quality of the included studies using the COSMIN checklist after first having carried out a thorough pilot test. The checklist enabled us to give a separate assessment of the various measurement properties that were assessed in one and the same study. A challenge has been that we have not always had the possibility of distinguishing between incomplete reporting and poor quality of a study. We have not had the capacity to contact authors for settling such issues.

The methodological quality of the studies

Two main challenges attaching to the included studies’ methodological quality is sample size and incomplete reporting on hypotheses. The size of the samples was often too small, and individually the studies did not have enough respondents to assess test-retest reliability. When internal consistency and structural validity are to be assessed, recommended sample size is five to seven times the number of questions and minimum 100 (14,30). This entails that instruments with numerous questions, such as SRI, score low on internal consistency and structural validity for all the included studies. Terwee et al. (31), who have summarized methodological quality in studies on measurement properties in a systematic review, also found that the sample size was a considerable challenge to the evaluation of many measurement properties.

We found only one measurement instrument available in a Norwegian validated version.

Several of the studies did not have pre-formulated hypotheses, or they were inadequately formulated with regard to expected size or direction of the correlations. It was not always clear whether this was due to shortcomings in the study or in the reporting. Terwee et al. (31) found in their study that less than 50 per cent of the studies had predefined hypotheses and only 48 per cent of these had described expected direction and size of the correlations. When hypotheses are missing there is a risk of coming up with alternative explanations of the results and the risk of bias increases (9).

Implications for practice and further research

Summary of the results and the best evidence synthesis showed that we have limited trust in the documentation and lack knowledge on important measurement properties for all instruments included. That we have limited trust in the documentation does not mean that the measurement properties were poor, but that they are still indeterminate (31). Even if some of the identified measurement instruments are more thoroughly studied than others, it is still difficult to give a clear answer to whether any of the available instruments have better measurement properties than others.

For PROMs that are to be used in palliative care patients in clinical practice, it is important that measurement instruments are not too extensive or demand too many resources for completion and administration (32). Here CDS stands out with 12 questions and an expected time of completion of two minutes (15).  DMQ-CAT tailors the questions to the respondent based on one entry question (28). The demands on the patient will thus be reduced in that only the most informative and relevant questions have to be answered. Using DMQ-CAT requires access to and competence in using electronic instruments.

None of the instruments we identified are validated for use in palliative care patients independently of diagnosis, and only SRI is translated into Norwegian. In addition to the methodological weaknesses pointed out and measurement properties that have not yet been evaluated, this entails that the relevant PROMs must be validated further in high quality studies. The studies should have large enough samples, pre-formulated hypotheses, as well as good and sufficient reporting on the study’s completion. It is also important to assess the measurement instruments’ responsiveness, to gain knowledge on whether the instrument is capable of capturing important differences such as effect of treatment or deterioration of health condition. COSMIN may be used to advantage as guidance for planning and reporting of new validation studies.

Conclusion

Four measurement instruments for breathlessness satisfied our inclusion criteria. Of the three instruments most closely studied (CDS, SRI and DMQ), none stand out as having clearly better validity and measurement properties, but CDS and DMQ-CAT seem more user friendly when it comes to time of completion and demands on the patients. SRI is the only instrument available in a Norwegian validated version, which is an important condition for use in a Norwegian setting. Further research is needed to validate and make the measurement instruments available for use in a palliative care setting in Norway.

We want to thank senior adviser and medical librarian Hilde Strømme for her peer review of our literature searches.

References

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Introduction

Bronchiolitis is the most common cause of hospitalisation in children under 12 months of age in many countries. A Norwegian study has shown a prevalence of 21.7 per 1000 with regard to hospitalisations of children under one year of age (1).  Around 20 per cent of all children contract bronchiolitis during the first year of life. Bronchiolitis is caused mainly by Respiratory S Virus (RS virus), which appears seasonal during the winter months. The infection starts in the upper respiratory tract and may spread to the lower respiratory tract, causing pneumonia and atelectasis (2). The infection leads to breathing problems such as wheezing, coughing, congested nose, increased respiratory rate, sleep apnoea, use of supportive muscles, increased mucus production in the lesser airways, and reduced nutritional intake (1,3,4). The main treatment principles are sustained oxygen saturation and appropriate fluid and nutritional balance. Another therapeutic option is inhalation of adrenalin and saline water, but the effect is uncertain (1).

Oxygen therapy by Heated Humidified High Flow Nasal Cannula (HHHFNC) therapy and Continuous Positive Airways Pressure (CPAP) reduces the need for invasive ventilation (1,3,5). HHHFNC therapy is a well-tolerated treatment alternative that lowers the respiratory rate (6). HHHFNC can in some cases replace CPAP. It is user friendly and well tolerated by the patient (1). The patient receives heated and humidified air that reduces the injuries to the mucus membranes in the upper respiratory tract (7) and is thus a viable treatment option for patients with acute respiratory tract infection (8).

According to the National Strategy for Quality Improvement in Health and Social Services (2005-2015), practice should be systematically evaluated to assess the need for improvement (9). The department for quality development in The Norwegian National Knowledge Centre for the Health Services has developed a model for quality improvement (figure 1), illustrating that systematic quality work is a continuous process through which improvement of services may be achieved by systematically working through five phases (prepare, plan, execute, evaluate, follow up) (10). Improvement work may be time-consuming, necessitating testing, adjusting, and repeating measurements and reflecting on the results several times.

The lack of clear clinical guidelines for oxygen therapy leaves room for nurses and doctors to handle the treatment according to their own experience and competence. Although guidelines and administrative routines in and of themselves do not ensure quality in the treatment of patients, clear guidelines and recommendations will be of support when qualified assessments of individual patients are made. Practice has shown that there is great variation as to whether oxygen is prescribed and documented (11). Oxygen is a medication (11, 12) which reduces the respiratory effort (13) and should be prescribed in writing in accordance with desired oxygen concentration in the blood measured peripherally (SpO2-values), fraction of oxygen in inspiration air (FiO2), and administration method (12,14).

In this project we have worked in accordance with the Norwegian Knowledge Centre for the Health Services model for quality improvement (10). The model may be used in improvement work for both small and large projects. The complexity determines how long an improvement process takes. The purpose has been to examine current practice of using oxygen therapy, to examine the written documentation of administering and monitoring oxygen therapy, and to consider the need for quality improvement.

Method

During the period January 1 2014 to May 31 2014, a retrospective examination of patient records was done for hospitalised patients at the Infection, lung, and emergency care unit at the Children’s Clinic at Haukeland University Hospital. The patients’ diagnoses were bronchiolitis and pneumonia.  We registered current practice for written prescription of oxygen, administration method, observations, and documentation of oxygen therapy and whether use of monitoring equipment was documented. Patients with serious chronic diseases were excluded from the review. After an assessment of whether current practice was in line with current recommendations on oxygen therapy for children in hospitals described in the literature, we have acknowledged a need for improvement and have developed improvement actions to accommodate for new practice. A new examination of corresponding data for hospitalised patients during the period January 1 2015 to May 31 2015 was subsequently done.

Planning

In the first data collection 135 patient records were reviewed. Of these, 40 (29.6 per cent) patients needed oxygen. In the second data collection 202 records were reviewed and 63 (31.2 per cent) patients had received oxygen therapy. We registered data on age, gender, diagnosis, and number of hospital bed days. We also registered whether oxygen therapy was prescribed in writing, whether administration method was prescribed and documented, and whether use of monitoring equipment was documented. Data were collected from the patient chart (main chart, medication chart, charts for prescriptions, and observation sheets), as well as nursing documentation in DIPS. Prior to starting the first data collection, a pilot study was done in which we read seven patient records. We wanted to test if the registration form layout was suitable for capturing the necessary and relevant data for the study.

In the Norwegian Knowledge Centre for the Health Services’s model for quality improvement (10) it is important that as many as possible, in the physician group and nursing group, are informed and involved in mapping and discussion on current practice. Involving all relevant parties will give all ownership to the project, resulting in a greater commitment.  Prior to starting the project information on the project was communicated to the nursing group through intranet, personnel meetings, and daily ten minutes of professional information at the start of each shift (figure1)

Accommodating new practice

Summed up findings from the first data collection were presented at a professional seminar for nurses and physicians. The findings lead to discussions in the nursing and physician groups as current practice did not quite correspond with recommendations for oxygen therapy to children in hospitals as described in the literature. Through our findings we saw that we were not necessarily bad at what we did, but we wanted to get better by introducing new measures and routines. National Strategy for Quality Improvement in Health and Social Services (2005-2015) states that services shall be safe and secure (9). A plan was developed for quality improvement. The research nurse had an active role as supervisor responsible for the project’s progress and implementation of actions. The following actions were implemented:

• Training in setting up and reading manometer
• New observation sheets for patients treated with CPAP and HHHFNC
• Revised guide for filling in charts
• New instructions to the physician group describing oxygen as a medication to be prescribed in writing
• New procedures for HHHFNC treatment

The Helse Bergen Data Protection Officer has evaluated and approved the study. The regular hospital insurance is valid for the patients. A separate folder was made for each patient for the data collections. The paper forms were stored locked up on the ward, and the information was later transferred to an electronic database in accordance with the security routines of the Western Norway Regional Health Authority. We applied for disk space on the quality server for storing the data. All information was handled without name and national identification number or any other immediately recognizable information. A code linked the patient to the information through an identifier list. The reference number followed the patient and was used again in case of rehospitalisation. Only authorised personnel were included in the project, had access to the identifier list, and could retrace the patient.

The results are presented descriptively with frequency count and percentagewise distributions. For each time period we made frequency counts of the diagnosis distribution (bronchiolitis/pneumonia), gender distribution, age distribution, number of hospital bed days, number of patients with written prescription for oxygen, number of observations per shift, frequency of registration on chart, and frequency of use of separate observation sheets. We tested for significant differences between the two time periods with Pearson’s Chi-square test. In cases with expected cell-frequencies less than five, Fisher’s exact test was used. We used spreadsheets in Excel and Stata IC version 14 to analyse the data.

Results

There was a significant difference in the age distribution between the two time periods (table 1). In the first data collection there were more children aged 0-1 month (45 per cent), whereas the second data collection had more children aged 2 – 12 months (54.4 per cent). There was a significant difference in the distribution of number of hospital bed days between the two time periods. The number of children with more than seven hospital bed days was significantly higher in the first mapping. There was a small overweight of boys at both registration points, but no significant difference in gender distribution between the two time periods. The first data collection showed a slightly higher percentage of patients diagnosed with bronchiolitis than the second data collection, but the difference in diagnosis distribution was not significant (table 1).

Observations were documented in main chart, observation sheets, or in written report. In the first data collection ten (25 per cent) journals had daily documentation of administration method for oxygen therapy in the chart, such as two litres by nose catheter. In 24 (60 per cent) journals documentation in the chart was missing. In some patient charts the SpO2 values were documented, but not that oxygen had been administered.  In the second data collection there was a small improvement, 18 (28.5 per cent) patient records showed daily documentation in the charts (table 2).

In the first data collection the observations sheets showed daily documentation in six (15 per cent) records, whereas the observation sheet was never used in 24 (60 per cent) records. In the second data collection the observation sheet was used daily in 29 (46 per cent) records, while it was never used in 29 (46 per cent) records. There was a significant difference between the two time periods. In the case of HHHFNC treatment in particular the observation sheet was not used, while we saw more frequent use in the case of CPAP treatment (table 2). We found a significant change in the number of documented observations from the first to the second time period. In the first data collection the frequencies of documentation 1 – 2 times per shift and 3 – 4 times per shift were 27 (67.5 per cent) and eight (20 per cent) respectively. In the second data collection this had changed to 22 (34.9per cent) and 30 (47.6 per cent) respectively (table 2).

Introduction

The combined oral contraceptive pill is the most frequently used contraceptive device in Norway (1), and several studies show that the majority (between 70 and 80 per cent) of Norwegian teenage girls use or have used oral contraceptives (2-4).  Insufficient knowledge on oral contraceptives may lead to discontinuation of use and unintended pregnancies in young girls (5). Young girls who use oral contraceptives have a right to information on the general use of the medication and possible risks and side effects (6). As of 2002 public health nurses and midwives with relevant accredited education have had the right to prescribe contraceptives in accordance with a specified list worked out by the Norwegian Medicines Agency, to girls aged 16-19 years (7). After this authorisation was given to public health nurses and midwives, the public health nurses in particular have become important prescribers of contraceptives to young women (7). Young girls have reported receiving less information than what doctors, public health nurses, and midwives have reported giving them (3). In order to gain knowledge on what information the public health nurse should supply when prescribing oral contraceptives, it may be useful to investigate what information the girls ask for, which again may determine young girls’ action competence in sexual situations and relations (8).

Background

About one half of all women between 20-24 years of age report in a survey from 2010 that they do not know enough about hormonal contraceptives (9). The same tendency is seen in international surveys (5,10,11). A standardised user information pamphlet on oral contraceptives has been published (12); it may, however, be difficult to know how much information to give to a young girl who is starting to use oral contraceptives (3). A placebo-controlled study has shown that expectations regarding side effects have a substantial effect on the number of side effects experienced (13). A survey of inquiries sent to the SUSS telephone (Centre for young health, sexual relations, and sexuality) shows that bleeding was the most frequently reported side effect among oral contraceptive users in the survey sample (14). Other surveys show that adolescents make good use of free and easily accessible health information and counselling on telephone and Internet (7,8,15,16). The anonymity of such inquiries very likely makes it easier to address difficult and taboo questions.

In order to implement knowledge-based strategies and measures it is necessary to know something about adolescents’ knowledge on and attitudes to sexual health (8). According to Skjeldestad (7), there is rather scant knowledge on young women’s use of contraceptives, and they are rarely represented in surveys on contraceptive habits (7). Skjeldestad refers to studies from 1983, 1994 and 2004, and we have been unable to find any more recent relevant studies. A literature study from 2010, surveying research on oral contraceptives, showed that the existing studies are inadequate and that the field is in great need of further research (5).

The purpose of this study was twofold: 1) to map and investigate young girls’ need of information on oral contraceptives and their use, and 2) to compare the need for information on oral contraceptives and their use in the youngest and oldest in the group of girls to which public health nurses have prescribed oral contraceptives since 2002.

Method

Design

The study had a descriptive design and data were collected retrospectively from an internet-based database and analysed using quantitative content analysis (17,18).

Setting

The web site Klara Klok [Klara the Wise] has as its main target group children and young people aged 10 to 25 (19).  The purpose of the Klara Klok service is to offer information and counselling on a.o. body, health, and sexuality (19,20).  Klara Klok is a national and open question and answer service used by young people nationwide, and has a broadly composed professional panel (19). In 2014 the website received 56 198 inquiries (19), and according to unpublished statistics from Klara Klok, 2898 of these inquiries were about contraception. The questions were as a rule answered within three to four workdays, and users have reported trusting the answers given (20).

Sample

The data in this study consist of written, anonymous inquiries from girls aged 16 to 19, sent to the website Klara Klok (21). There are no given criteria regarding the size of the sample for content analysis (18), but a sample size of 400 to 600 would be sufficient, to ensure both reasonably good precision and manageability of the data (22).

Data collection

To collect data on which questions this user group poses on oral contraceptives and their use, we decided to collect questions from 250 inquiries from 16 year olds and 19 year olds, a total of 500 inquiries. All inquiries on contraceptives from the two age groups were identified and read. Only inquiries on use of oral contraceptives were included in the data material. The inquiries were collected retrospectively by starting with the latest inquiries on contraception in January 2015 and ending when reaching 250 inquiries from each age group. According to figures from Klara Klok, significantly more 16 year olds have questions on contraceptives, and we had to go back in time to collect 250 inquiries from the 19 year olds. The inquiries from the 16 year olds were made between February 2014 and January 2015, and the inquiries from the 19 year olds were made between December 2012 and January 2015. The inquiries were accessed by going to the tab “latest response” and choosing the subject “contraceptives” (see figure 1).

We excluded questions on mini-pills/progesterone pills as these differ from the combined oral contraceptive pill in containing only the hormone progesterone. Mini-pills may thus give a different bleeding pattern than the combined pills (23). The inquiries were first copied to a Word-document, sorted by age, and numbered. The data collection took place in January and February 2015.

Data analysis

The data analysis was performed in three stages: 1) reading through the text material and establishing question categories, 2) pilot testing, 3) statistical analyses and reliability test.

The data were first read through repeatedly in order to gain an overview of the material. The work with establishing categories had an a priori design as its point of departure (18) and a template was prepared before coding the material. In collaboration with employees at Klara Klok, who read and respond to the questions posed by the users of the service, five working categories were initially established (as shown in figure 2).  These categories built mainly on what the Klara Klok employees considered to be the most frequently posed questions, based on their own experience. An external public health nurse, with no knowledge of the study but with experience from working with young people and sexuality and prescription of oral contraceptives, participated in a pilot test where she identified and categorised 50 randomly chosen inquiries (10 per cent of the material) related to oral contraceptives and their use according to the suggested categories. Through a process entailing adding, discussing, and combining categories, the external public health nurse and the researchers agreed on six main categories that would cover the questions asked (see figure 2).

We started from descriptive analyses and assumed that the youngest and oldest groups of oral contraceptive users, to whom public health nurses may prescribe oral contraceptives, would be in need of different information due to age and different experiences with oral contraceptives. A Chi-square test was used to compare the groups with regard to the types of questions asked (17). The results from the Chi-square test are presented in table 1. P-values less than or equal to .05 were considered statistically significant. Statistical analyses were performed in SPSS Statistics version 22 (22,25).

Reliability and validity

In order to evaluate the reliability of the results, we drew, in accordance with Neuendorf’s recommendations (18), a new random sample of 10 per cent of the material (50 inquiries) by using SPSS. This again was coded by the same external public health nurse who participated in the pilot test. All categories were represented in this sample. The reliability coefficient Cohen’s kappa (26), which estimates degree of agreement between two or more coders, was calculated to ensure that the categorisation of the material was done with accuracy and reliability. The degree of agreement between first author and external public health nurse was assessed as very good, with an average k = .86 (26). According to Altman (27), the kappa value may be interpreted in the following way: < .20 is poor, .21 - .40 is fair, and .41 - .60 is considered moderate, .61 - .80 is good and .81 – 1.0 is very good.

To strengthen the validity of the study the question categories were developed in collaboration with employees at Klara Klok. We decided to start with the most recent inquiries to get an updated representation of the need for information. As described above, the material was read repeatedly and the categories reassessed until considered mutually exclusive by professionals and researchers (see figure 2) (18).

Ethical considerations

Anything available on the Internet is in principle considered public information unless it is protected by access control (28). In this study the sum of questions in the categories mentioned above were subject to analysis, not the individual inquiry. It is therefore considered unlikely that young users of Klara Klok will experience any unwanted exposure as a result of the study. The data in this study were anonymous and impossible to trace back to sender.

Results

The total 500 inquiries consisted of 307 questions from 16 year olds and 321 questions from 19 year olds, a total of 628 questions. Where several questions were included in one inquiry, these were coded as separate units. The majority of the questions were related to the categories “Bleeding and bleeding disturbances” and “Contraceptive effectiveness”. The 16 year olds focused mostly on contraceptive effectiveness, while the 19 year olds focused mostly on bleeding and bleeding disturbances. Both groups had the least number of questions in the category “Serious side effects”. All results and the distribution between categories and age groups are shown in figure 3 and table 1.

A statistically significant difference was found between the questions from 16 and 19 year olds in the categories Contraceptive effectiveness (p= .007) and Harmless side effects (p= .026).  The Klara Klok data show that 16 year olds to a greater extent than 19 year olds have a need for information relating to the very effectiveness of using oral contraceptives. The results also show that the 19 year olds ask more questions relating to harmless side effects of using oral contraceptives. However, the number of questions in this category were few in comparison to the total number of questions.

Discussion

The study suggests that the greatest information need of a total 500 inquiries and 628 questions to Klara Klok were related to the categories Bleeding and bleeding disturbances and Contraceptive effectiveness. Irregular bleeding is a known side effect among users of oral contraceptives (29). A global survey from 2012 shows that one third of the women reported that monthly bleeding had negative consequences for daily life, in particular sexual relations and exercise (30). This study suggests that bleeding and bleeding disturbances concern the girls to a great extent. The results of 2420 inquiries to the SUSS telephone showed that bleeding was the most frequent side effect (14).  Knowing how much information to give to young girls about side effects and bleeding may be difficult. Irregular bleeding may worry young girls and cause a discontinuation of oral contraceptives use, resulting in unintended pregnancies (29).  Young girls need knowledge about this issue to be prepared for such a side effect (31). This study shows that the 19 year olds have more questions related to bleeding than the 16 year olds.

In line with this study earlier studies have found that six out of ten adolescents were uncertain as to the effectiveness of the oral contraceptive (32). A large number of the inquiries to Klara Klok were about the oral contraceptive’s effectiveness as protection against pregnancy. This shows great awareness of the risk of pregnancy, and that there is a need for emphasising the contraceptive effectiveness at the time of prescription. If the oral contraceptive is used properly, the protection against pregnancy is 99 per cent (12). The study shows that the 16 year olds have more questions than the 19 year olds on this subject. One may thus assume that the younger group has less experience with oral contraceptives and are more uncertain as to the contraceptive effectiveness. It is possible that the 19 year olds have learnt to trust the oral contraceptive after having used it. This again might suggest that the younger the girl is, the more important it is to give information on the safety.

The study shows a significant difference between the two age groups in the category Harmless side effects. Here as well the result points to that the older girls experience more unwanted side effects from the oral contraceptive than the younger ones. As the data material did not contain any information on how long the girls had used the oral contraceptive, it is, however, difficult to conclude that unwanted side effects and bleeding disorders increase with long-term use.

Girls who use oral contraceptives have increased risk of developing blot clots (33), and there is clear advice on which oral contraceptive pill gives the least risk for this and should therefore be an obvious first choice when the public health nurse prescribes oral contraceptives (23). An important part of the information given at the time of prescription is about the somewhat increased risk of developing blood clots (12,34), and according to earlier studies the public health nurse is aware of the need to inform about this (2,3). Inquiries to Klara Klok on blood clots and other serious side effects make up a relatively small part of the material for this study. This may suggest that there is a gap between the public health nurse’s emphasis on information on the risk of developing blood clots and the girls’ need for such information. One may wonder whether the girls do not ask about this because they have already been thoroughly informed by the prescriber, or whether they are not all that familiar with this risk. Earlier surveys show that in excess of 60 per cent reported having been informed of the risk of developing blood clots at the time of prescription of the oral contraceptive (9). In line with earlier research this study shows that there are more inquiries from 19 year olds on this subject, which may suggest that awareness regarding this risk increases with age (2).

According to unpublished figures from Klara Klok, in excess of 5000 inquiries were made concerning contraceptives by 16 year olds between 2008 and 2014, against only 1600 inquiries from 19 year olds on the same subject. This suggests that younger girls generally have more questions and a greater need for information than older girls. Young girls who use oral contraceptives have a right to information on the general use of medication and possible risks and side effects from using oral contraceptives (6). Prescriber has a duty to inform the girls based on this right (35). This information may enable young people to enjoy the pleasures of sexuality, and also be prepared to handle any risk situations that may arise (8). The public health nurse has become a significant contraceptive counsellor (7), and there has been a significant reduction in the number of teenage abortions since public health nurses were given the right to prescribe contraceptives and subsidised contraception to girls between 16 and 19 was introduced (36). The public health nurse’s role in this effort appears to be of great importance. The school health services and the health stations for young people are services that give young people access to health personnel that can offer good and adapted information on contraceptives. An extended right to prescribe for midwives and public health nurses is implemented as of January 1 2016. Public health nurses and midwives may now prescribe all hormonal contraceptives, including long-acting reversible contraception (LARC) such as intrauterine devices and implants, to all girls and women over 16 years of age (37). Long-acting hormonal contraceptives such as intrauterine devices or implants are now free or less expensive for girls between 16 and 19 years of age. A high degree of protection against pregnancy, low risk of user error, and continuity in use, makes LARC a clear first choice in prescription of hormonal contraceptives (36). It is, however, known that also these devices may have side effects in the form of bleeding disturbances (12), and at the time of prescription the consultation should include exhaustive information on this. This study has shown that side effects such as bleeding disturbances, in addition to the uncertainty related to contraceptive effectiveness, concern young users of contraceptives to a great extent. The findings may contribute to the public health nurse being able to give adapted information when prescribing any hormonal contraceptives.

Strengths and limitations

A sample does not give a perfect image of a population (17). This is also the case for this study’s sample.  Klara Klok is a well-known and free national question and answer service, and inquiries to the service are ensured total anonymity (21). Users of Klara Klok are asked to give age, gender, and county, but the users decide whether they want to give correct information. This is not possible to check and it is also not possible to ask follow-up questions in order to gain more insight into the users’ situation and information need. Knowledge on who sends in questions is thus limited and we do know whether they make up a representative part of the adolescent population.  The questions sent to Klara Klok on oral contraceptives are asked by girls who experience problems or uncertainties related to the contraceptive device. Therefore this does not give any indication of how great a proportion of the oral contraceptive users in general have the same experiences. Quantitative content analysis is a method used to describe the manifest content in data material in a systematic and fairly objective way (18). With this approach one will only relate to what is manifestly present in the text. No subjective interpretations of implicit meanings or perspectives are made, and one will thus miss diversity and variation in the material (38). An advantage with using quantitative content analysis is that it is a systematic, re-testable method for breaking up large quantities of text into categories based on explicit rules for coding (39).  Another strength of this study is that the website from which the data originate is much visited, and that the feedback is mainly positive (20). The service can give useful insight into young girls’ experiences with using oral contraceptives. It is also possible that young girls who make inquiries on the Internet will find it easier to ask anonymously through a screen than face to face with the public health nurse for instance. The material may thus yield a more uncensored view of the information need. The Klara Klok website is used by youngsters with varied backgrounds, from the whole country (20). This, in addition to full anonymity, may support a claim that the inquiries credibly represent young girls’ need for information on the use of oral contraceptives.

Conclusion

The study has contributed to surveying and illuminating young girls’ need for information related to oral contraceptives and their use, and has compared the information need related to oral contraceptives and their use, for the youngest and the oldest in the group of girls to whom the public health nurse has prescribed oral contraceptives since 2002.

The results of this study show that young girls have the greatest need for information related to the categories Bleeding and Bleeding disturbances and Contraceptive effectiveness.  Significant differences were found in the categories Contraceptive effectiveness, where the 16 year olds had a greater need for information than the 19 year olds, and in the category Harmless side effects, where the 19 year olds had a greater need for information than the 16 year olds. The public health nurse’s role as contraception counsellor is now more important than ever. The public health nurse has a vital role in informing and following up young users of oral contraceptives and should have knowledge on the various information needs that may arise in relation to the use of contraceptive devices. The results of this study may thus contribute to that the public health nurse can offer complete and adapted contraceptive information when prescribing oral contraceptives and other hormonal contraceptives to the various age groups.

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Introduction

Patient safety and quality of care are prioritised areas within the health services (1,2), and decisions in clinical practice are expected to be based on up-to-date evidence (1). According to HelseOmsorg21, today’s nursing curricula only modestly respond to the challenges faced by the health services in this area (3).

Evidence-based practice (EBP) entails making professional decisions based on systematically retrieved research-based evidence, experience-based knowledge, and the patients’ wishes and needs in the given situation (4,5). In order to work evidence-based, nurses need competence in professional reflection, formulation of clinical questions, conducting searches, critical appraisal of research literature, as well as application and presentation of research (4).

International studies show that nurses in clinical practice lack basic EBP skills (6,7), and that many nurses in clinical practice have a negative attitude to applying research (8,9). A literature review from 2011 pointed out that measures against identified barriers, competence building, and professional development are important in promoting evidence-based practice (10).

Current health policies state that educational communities shall integrate evidence-based forms of practice in professional education curricula (3,11). Internationally the aim is to integrate EBP in the health professions’ curricula (5,12) and in the medical curricula (13,14). In spite of increased attention to EBP, we know little about its implementation in the nursing education curricula. A Norwegian study addressed the nursing students’ experiences with implementation of EBP in clinical practice studies. The results of this study suggest that cultural challenges may come between the students’ learning goals and the implementation of EBP in practice (9). A Swedish study (15) showed great differences in the way students from different universities in Sweden experienced the emphasis on EBP in the nursing curricula.

3630 new nurses graduated in Norway in 2014 (16). This is a large group and they will all have a central role in working evidence-based. The educational institutions have a great responsibility in this regard. Current health policies suggest mandatory training in handling evidence and evidence-based practice for all health profession curricula (3). To fulfil such health policy goals, the students must acquire sufficient EBP competence during the course of their education. The purpose of this literature review is thus to identify and describe research on EBP in nursing education.

Method

The literature review is a modified scoping review based on the Arksey and O’Malley framework (17). A scoping review is a suitable method for gaining an overview of a research field in which a variety of study designs are used. The scoping review, as opposed to the systematic literature study, opens for inclusion of various study designs (17). We chose scoping review as method due to the limited research field and our wish to include all relevant articles. To ensure good quality in the search process the search was planned and carried out in collaboration with a librarian. We searched the databases Cochrane Library, Medline, Cinahl, Embase, Swemed+ and Eric, for the period from January 1 2000 to December 15 2014. The searches were limited to peer reviewed publications in English or Scandinavian languages.

The following search terms were combined; evidence-based practice/(or evidence based or evidence-based or evidencebased or research based or research-based or researchbased or knowledge based, or knowledge-based or knowledgebased) and nursing/ (or evidence-based nursing/) and schools, health occupations/(or schools, nursing/ or universities/ or education, nursing/ or education, nursing, baccalaureate/ or education, nursing, graduate/ or nursing education research/) and curriculum/ (or faculty, nursing/ or learning). We performed a combination search with the same search terms adapted to the various databases. In Medline we added «facilitat*» and «implement*» to limit the search. Nordic journals are not automatically indexed in Cinhal and Medline, so we searched in Swemed+ with the search terms evidence based and nursing education. For the periods during which the journals were not available online, we did a hand-search; Norsk tidsskrift for sykepleieforskning (2000 - 2010), Sykepleien forskning (2006 - 2008) and Vård i Norden (2000 - 2004).

Inclusion criteria were quantitative and qualitative studies addressing organisation of education curricula and description of learning activities related to EBP in nursing education. Only studies on bachelor level nursing were included. Studies involving post-registration programmes, master’s degree programmes, and commentary articles were not included.

Results

Table 1 shows an overview of the number of articles identified, databases, and studies included. A two-step process was used for going through the articles and selecting those relevant to our study (18). Two of the authors read title and abstract of all 386 articles. Three hundred and thirty one articles were excluded in accordance with the inclusion and exclusion criteria. The second step in the process consisted of a thorough reading of the 55 remaining articles. Two authors read all 55 articles in full to select articles for inclusion based on the criteria. Disagreements between the authors were resolved by discussion.

Eleven studies were included: nine from the USA, one from Italy, and one from China. The studies addressed different types of questions and were of varying quality. The research designs varied: one literature review (19), two quasi-experimental studies (20,21), one article with action research design (22), one cohort study (23), two descriptive studies (24,25), and four case studies (26-29). The case studies, the action research study, and one of the descriptive studies (25) dealt with organisation and learning activities related to EBP in education curricula and yielded insight into the positive effect these may have on individual students’ learning outcome. The quasi-experimental studies (20,21), one descriptive study (24), and the cohort study (21) show effect of EBP learning activities on groups of students. Table 2 shows an overview of the studies included.

Curriculum structure and content

All articles stated that learning activities relating to all steps of EBP must be included in the curriculum. Table 3 shows an overview of the students’ learning activities in the studies included. Three studies (22,24,27) described curricula for all three years, while five studies (20,21,26,28,29) had concentrated on learning activities towards the end of the programme. In most articles EBP was included in clinical topics in the curriculum (20-24,26,27,29); three of these articles were related to the subject of leadership (20,26,27).

In collaboration with the practice field, Moch, & Cronje (22) developed a new study model with the EBP curriculum spanning all three years. The clinical practice context was central in both development and implementation of the model. Among the students’ assignments was work on research articles in knowledge groups, across educational levels, with teachers and employees in the practice field. The roles of the students changed from that of observers at the outset to leaders of the knowledge groups toward the end of the programme. Articles on subjects from the practice field were discussed and critically appraised in the knowledge groups. The students searched current research, summed up the evidence, and made plans for implementation.

Finotto and colleagues (24) reported significant improvement in the students’ EBP skills after implementation of EBP in the curriculum, with progression throughout all three years. The students further reported that the curriculum had given them increased insight into, and understanding of, research, through their work on the bachelor thesis in particular. In the first year of study the students worked theoretically with describing the purpose of EBP and how to proceed when working evidence-based. In the subsequent practice period the students worked on formulating clinical questions and using PICO. In the second year of study the students performed searches and critical appraisal, while during the third year emphasis was on search strategies in various databases and different study designs. Student-centred teaching methods with the students working in groups were also emphasised.

The thoroughness of the description of the learning activities varied in the studies included. Most studies combined lectures and/or e-learning with subsequent assignments (20-24,26-29). One study (20) examined the impact of an interactive EBP teaching programme during one semester towards the end of the programme. The intervention, also called E-FIT, consisted of a two-hour introduction to EBP with subsequent group assignments in practice. The group assignments included problem identification, literature synthesis, implementation strategy, and presentation. The results showed a significant effect on the students’ knowledge of EBP for the intervention group, but no difference between the groups with regard to attitudes and future use of EBP (20).

After introducing a two-part intervention, Zhang and colleagues (21) carried out a quasi-experimental study with participants from seven universities. In phase 1 the students worked individually with an e-learning course on EBP and performed a literature search (see table 3). The phase ended with a group study report where the students described how they understood EBP, the significance of EBP for nursing science, and a practical example where they applied the steps of EBP. In phase 2 the groups worked on critically appraising selected research articles. Each group was assigned an article for discussion related to the research question, the literature review, and a theoretical framework. The groups further reflected on and appraised methodical aspects of the article related to research design, selection, data collection method, and analysis.  Three group meetings were held in which the students shared their appraisals. Students within the same group worked on the same article. Teacher and clinical practice supervisor supervised the groups and the students reached consensus on the article’s strengths and weaknesses. The study showed significant impact on the students’ knowledge of EBP, attitudes, and behaviour.  Significant improvements were reported in analytical skills, problem solving, and ability to work independently and to collaborate with others. Phase 1 with self-study scored lower than phase 2, which was supervised by teacher and practice supervisor.

Group assignments

Eight articles (20-24,26-28) described the students working in groups; six of the eight articles described group sizes of four to six participants (20,23,26,28). One of the articles described groups put together across topics and levels (22).

Study assignments

The study assignments varied in number and size. Some were described extensively and in detail (20,23,24,26-29), and some had clear learning outcome descriptions (24,27). A common characteristic was that the study assignments included both theory and clinical practice topics (19-24,26,27,29), and in three of the studies the students worked on the same assignment over several semesters (20,23,26). Ross et al. had one study assignment for each of the EBP steps (27), while others described a study assignment that encompassed several steps (20,24,26,28).

Supervision

Several students emphasised the importance of supervision (21,23,24,26,27,29). In one study the same teacher supervised the students for two semesters; the study assignment lasted several semesters (26). Others emphasised the role of the teacher as central in both supervision and giving feedback on concrete study assignments (27-29). One study (24) reported that the students to a small degree were encouraged by the practice supervisors to work evidence-based.

Presentations and evaluations

In the majority of the studies the students gave presentations involving Poster or PowerPoint in the practice field (19-21,23,26-29). One study used a blueprint for the presentation to ensure that all steps in the process were followed  (26), and in four studies the works were graded (22,23,26,28). Two articles reported rewarding the best wards (22,28). The students assessed such rewards as fun and said this contributed to healthy competition between groups (28).

Collaboration between education and practice field

In the majority of the included articles collaboration between practice field and education was emphasised (19-24,26-29). In five studies the importance of both parties participating in the planning phase was particularly in focus (21,23,26,28,29).  That a teacher supervised concrete improvement projects in the practice field was described as positive (22,23,26,28). Based on a review of the literature, Moch and colleagues (19) suggested that project collaboration on EBP between the practice field and education could contribute to increase competence for both students and employees in the practice field. Such collaboration could, according to several of the articles, become a win-win situation for both education and practice field (19,24,26), and thus contribute to improvement of quality in practice (19).

A common trait was that the students worked on study assignments that were based on clinical questions from the practice field (19-24,26-29). In five articles the clinical practice field had prepared topics for the students to work on during the practice period (21,22,26,28,29). Killeen and Barnfather (26) stressed the importance of supervision of the students in the work of identifying a clinically relevant question for the practice field. This question became the point of departure for improvement projects in which the students applied the EBP steps under supervision. In another study (29) the students worked together in pairs on formulating questions in collaboration with clinical practice supervisors. Formulating the question was described as the most challenging step in working evidence-based (24,26).

Who would supervise the students in EBP varied in the articles included. Some reported that the students were regularly supervised by clinical practice supervisor (22,28,29), while others described the supervision process as collaboration between clinical practice supervisor and teacher (21,23,27). One article reported that the competence requirement for practice supervisors was a master’s degree and completion of a course in EBP (29).  In several studies employees in the practice field stated that they had benefited from the students’ work (22,23,26,28,29).  Although the practice field viewed the work as useful, employees stated that they did not have sufficient time to go in-depth on the suggested changes (28). Moch and Cronje suggested that the new curriculum in which the students, among other things, taught EBP and lead knowledge groups in practice could help reduce the barriers to EBP (22).

Discussion

Even if EBP has received considerable attention both in the health services and in the professional curricula, this literature review shows that the subject has to a lesser extent been explored in research. Despite significant differences in quality, design, and method, the studies suggest that there are some issues that should be emphasised when introducing EBP into nursing curricula.

The studies suggest that a systematic emphasis on EBP throughout the nursing education has a positive influence on the students’ learning outcome. When all steps of EBP are systematically included in the curriculum, the students’ insight, attitudes, and skills in EBP improve. Progression in learning activities over several topics seems to be of importance. One explanation may be that EBP demands a separate set of skills that the students need time to acquire. If a three year progression is not planned, the literature review suggests that the EBP training should take place toward the end of the programme. This may be related to the students being more socialised in their own learning process and having achieved increased understanding of nursing issues at that point.

The studies characteristically report the use of a combination of several teaching methods.  Fairly comprehensive EBP study assignments and a process-oriented approach with work in groups are recommended. Using e-learning in combination with study assignments appear to give the students a fundamental understanding of EBP. The Norwegian Knowledge Centre for the Health Services has a free e-learning course on EBP (30) that may be used in the curriculum. The studies acknowledge that teaching the students the steps of EBP before they start clinical practice may help increase the competence of both students and of employees in the practice field.

The literature review suggests that the students need much practice to achieve sufficient skills in the EBP steps. This is in accordance with findings from studies on the medical curricula (31,32). Reflection and critical assessment skills are important for all professionals and essential to evidence-based professional practice. In the studies included these issues are explored in depth.

Many of the articles stress the importance of practice in formulating clinical questions and this seems to be significant. A common situation is that clinical questions are formulated based on the student’s practice experiences or on request from the practice field. Finotto and colleagues point out that this may be one of the most difficult phases in the EBP process as it involves both critical thinking and the use of PICO (24).

Several of the studies point out that the practice field is a good arena for student learning. The three-way collaboration between teacher, student, and nurses, where EBP is applied to concrete clinical problems, seems to have a positive effect on student learning. Such establishment of good connections between the students’ learning activities in the university college and in the practice field is regarded as an important issue for the professional educations (33,34). Introducing EBP work methods is about associating evidence from research, clinicians’ experience, and user knowledge (4). The findings from this literature review emphasise that a feeling of community between the education and practice fields is essential and must be built over time. Through working with concrete practice projects the students learn the value of critical reflection on practice, and they gain insight into the significance of research for professional practice. The collaboration between practice supervisors and students in the planning of search strategies and critical appraisal of research literature appears to help increase both parties’ competence. The student presentations in the form of posters or presentations in the practice field receive good feedback and are experienced as positive.

The literature review suggests that the collaboration resulting from the implementation of EBP as method in practice studies may have a positive effect on quality improvement work in practice. Supervision by teacher in clinical practice projects appears to help stimulate the professional commitment in the practice field. The studies emphasise that the concrete results from the collaborative projects are useful to the employees in the practice field and that the results can be used to improve practice.

The literature review shows that EBP can help increase the students’ understanding of research. Teaching and training bachelor level students to read and critically appraise research during their education is considered positive (35,36). In Norway the research communities are encouraged to plan the curricula so that the students gain experience in applying research during their studies (37). The systematics of the EBP steps may be a good aid. It is further suggested that involving a health profession librarian in both the development of the curriculum and in the teaching may improve the students’ skills in the field.

This literature review documents a need for both Norwegian and international research on the systematic use of EBP as a method in the supervision of nursing students. The evidence base on this subject is limited. We need more knowledge on how curricula implement EBP teaching, what factors enhance and hinder student learning, as well as larger controlled studies to investigate the effect of structured and directed nursing education curricula. Existing research stresses the importance of mandatory collaboration between education and practice field.  Teaching methods that start from clinical questions where the students, through student-centred methods in groups, acquire knowledge and skills in all steps of EBP are recommended.  Teaching activities that address both practice and theoretical topics are also recommended.

Limitations

The studies included are small with significant differences in quality, design, and method. A possible weakness of this literature review is that we did not use the search terms “Evidence-informed practice”, “evidence-informed decisionmaking” and “evidence-based health care” and that we limited the searches in Medline with “facilitate*” and “implement*”. We may have missed some studies this way.

Conclusion

Norwegian and international research on nursing education curricula that include EBP is limited. Available research literature suggests that systematic training in EBP with interactive teaching strategies in collaboration with clinical practice may have a positive impact on student learning outcome. More research, with a variety of designs, is needed to explore various questions and increase the evidence base.

References

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2. Meld. St. 11 (2014–2015). Kvalitet og pasientsikkerhet 2013. Helse- og omsorgsdepartementet. Oslo 2014.
3. Helse og omsorgsdepartementet. HelseOmsorg21. Et kunnskapssystem for bedre folkehelse. Regjeringen.no 2014.
4. Nortvedt M, Jamtvedt G, Nordheim LV, Reiner LM. Jobb kunnskapsbaseret! 2. utgave ed. Oslo: Akribe; 2012.
5. Dawes M, Summerskill W, Glasziou P, Cartabellotta A, Martin J, Hopayian K, et al. Sicily statement on evidence-based practice. BMC Med Educ. 2005;5(1):1.
6. Melnyk BM, Fineout-Overholt E. Evidence-based practice in nursing & healthcare: A guide to best practice: Lippincott Williams & Wilkins; 2011.
7. Pravikoff DS, Tanner AB, Pierce ST. Readiness of US Nurses for Evidence-Based Practice: Many don’t understand or value research and have had little or no training to help them find evidence on which to base their practice. AJN The American Journal of Nursing. 2005;105(9):40–51.
8. Ciliska D. Educating for Evidence-Based Practice. Journal of Professional Nursing. 2005;21(6):345–50.
9. Smith-Strøm H, Oterhals K, Rustad EC, Larsen T. Culture crash regarding nursing students´ experience of implementation of EBP in clinical practice. 2012.
10. Sandvik G, Stokke K, Nortvedt M. Hvilke strategier er effektive ved implementering av kunnskapsbasert praksis i sykehus. Sykepleien Forskning. 2011;6(2):160-7.
11. Meld. St. 13 (2012–2013). Utdanning for velferd. Samspill i praksis.: Kunnskapsdepartementet, editor. 2012.
12. Young T, Rohwer A, Volmink J, Clarke M. What are the effects of teaching evidence-based health care (EBHC)? Overview of systematic reviews. PloS one. 2014;9(1).
13. Glasziou P, Burls A, Gilbert R. Evidence based medicine and the medical curriculum. Bmj. 2008;337.
14. Maggio LA, Tannery NH, Chen HC, ten Cate O, O’Brien B. Evidence-based medicine training in undergraduate medical education: a review and critique of the literature published 2006–2011. Academic Medicine. 2013;88(7):1022-8.
15. Florin J, Ehrenberg A, Wallin L, Gustavsson P. Educational support for research utilization and capability beliefs regarding evidence-based practice skills: a national survey of senior nursing students. Journal Of Advanced Nursing. 2012;68(4):888–97.
16. Database for statistikk om høgre utdanning NSD. Publikasjoner 2015.
17. Arksey H, O›Malley L. Scoping studies: towards a methodological framework. International journal of social research methodology. 2005;8(1):19–32.
18. French B. Contextual factors influencing research use in nursing. Worldviews on Evidence-Based Nursing. 2005;2(4):172–83.
19. Moch SD, Cronje RJ, Branson J. Part 1. Undergraduate nursing evidence-based practice education: envisioning the role of students. Journal of Professional Nursing. 2010;26(1):5–13.
20. Kim SC, Brown CE, Fields W, Stichler JF. Evidence-based practice-focused interactive teaching strategy: a controlled study. Journal of advanced nursing. 2009;65(6):1218–27.
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Introduction

In 2012, according to the Norwegian Cardiovascular Disease Registry, there were 19 211 incidents of main diagnosis acute stroke in Norway (1). This resulted in 4262 out-patient consultations, 14 949 hospital admittances, and 12 387 hospital stays, for 10 672 patients (1). Of these patients 5632 were men and 5040 were women. After 28 days 10.9 per cent of the men and 16.4 per cent of the women were dead (1). Mortality after a stroke was lower in 2012 in Nord-Trøndelag than in most other counties, and higher among women than men (2).

Stroke is the third most frequent cause of death, after coronary heart disease and cancer, (3) and is the most important cause of severe disability (4). The Norwegian Stroke Registry, in 2013 comprising 53 hospitals in the country (some 76 per cent of the patients), reports that two out of five have completely recuperated after the stroke (5). According to WHO, some 15 million people worldwide suffer a stroke annually; of these one third die and one third suffer severe disability (6). Mortality has decreased in Norway over the past ten years. Important causes of this reduction are assumed to be increased focus on stroke, both in the medical community and in the media, in combination with fast emergency treatment (7,8). In spite of increased emphasis on prevention in recent years, the number of strokes has not decreased (3,9). The proportion is expected to rise as life expectancy increases (10). An estimated 55 000 persons who have suffered a stroke are currently living in Norway (3).

The risk factors for suffering a stroke are many, and mostly the same for women and men, with high blood pressure being the most important (5,11). The risk is higher for men than for women in Norway and other Scandinavian countries (3). Men are, on average, younger than women when they suffer their first stroke: 75 years opposed to 78 years in women. The number of men and women living with stroke is approximately the same, as there are more women in the older population (3,7).

The most typical functional outcome following a stroke is one-sided paralysis in the extremities or face, loss of sensation, difficulties with swallowing or speech, vision impairment, balance problems, neglect, consciousness disturbances, psychical disorders, pain, and bladder and bowel dysfunction (4). Other consequences, which may impact functional ability, are fatigue, depression, anxiety, and sleep disorders (12,13). However, a longitudinal study was recently published addressing functioning and degree of functional independence following brain haemorrhage in patients at Sørlandet Hospital. The study showed that two out of three did not need assistance with daily routine activities after about four years (14).

The stroke in and of it self, and how the body functions after the stroke, will affect the health of those suffering a stroke, and this again may increase the need for health services. Earlier studies have shown that women have more physical outcomes and limitations in daily activities than do men (15). A European study of persons who had suffered a stroke and been admitted to hospital showed that women more frequently experienced reduced functional ability and higher disability at three months after the stroke than did men (16). Two Swedish studies have shown that women suffer from poorer health than men up to three months after a stroke (17,18).

Studies from America, Asia, and Europe confirm that being female may be an important factor in the outcome and functional ability, both immediately following and in the long run, after a stroke (16,19,20). Even though earlier studies suggest that women have poorer functional ability than men, the findings are not univocal. Several studies have shown no significant differences in functional ability between women and men following a stroke when controlling for age, severity of the stroke, and functional ability prior to the stroke (17,21,22). Norwegian researchers have shown that women found it difficult to manage practical tasks and fulfil their various roles after a stroke (23-26). This is in line with an American study that shows that sociocultural factors such as gender roles, social support, access to resources, and depression may explain women’s poorer health and functional ability after a stroke (27).

A Norwegian study from 1997 concludes that women appear to suffer a higher reduction in functional ability after a stroke than do men (28). It is difficult to find similar, later Norwegian studies of gender differences in health, functional ability, and use of health services after a stroke. Additional and new knowledge is important on this subject in the Norwegian population. The purpose of this study is thus to see whether women and men assess their health and functional ability differently after a stroke, and whether there is a difference between women and men in the use of health services after a stroke.

Method

The study is based on data from The Nord-Trøndelag Health Study, HUNT 3. All residents in the 24 municipalities were invited to participate. The study lasted from October 2006 to June 2008 (8). Some 93 860 persons qualified for participation and 54.1 per cent participated in HUNT 3.

The sample in this study consists of 1190 persons who have had a stroke or brain haemorrhage. Socio-demographic variables: Gender, age, marital status, living alone, and work activity.

To survey self-assessed health we asked: “How is your health at the moment?” The question had four alternative responses: “poor”, “not so good”, “good” and “very good”. The question is taken from the well-validated instrument SF-36, and is frequently used in self-assessment of health (29).

Functional disability

HUNT’s version of the modified Rankin scale (mRS) is used to assess functioning after a stroke (30). The first question is: “Have you completely recuperated after your last stroke?” with response alternatives yes or no. To the question: “If you have had a stroke, how does it affect your functioning level and your ability to do normal, daily tasks? Normal, daily tasks mean, for example, eating, dressing and going to the bathroom. ” There were six response alternatives, ranging from:0) No symptoms at all, 1) No significant disability despite symptoms,, with the explanation “have some symptoms, but am able to perform all tasks and activities as before the stroke”, 2) Slight disability, 3) Moderate disability, 4) Moderately severe disability and 5) Very severe disability. A mRS score of 0-2 corresponds to none to slight disability and is defined as independence (14,19).  Moderate to very severe disability (mRS 3-5) is defined as dependence. mRS has been found to be valid and reliable in Norway and internationally (4,31). As few respondents scored 4 and 5, these categories were combined. Persons aged 70 or above were asked questions on what normal, daily tasks they could manage without help from others.

Use of health services

The questions address whether the participants had been admitted to hospital in the last 12 months, consulted a general practitioner, a specialist outside the hospital, a doctor without being admitted to the psychiatric out-patient department, consulted a doctor without being admitted to a hospital out-patient department (other than psychiatric department), consulted complementary and alternative medicine, chiropractor etc[LK1] . The participants were also asked whether they were admitted to hospital in connection with the last stroke they had suffered. Women and men aged 70 or above were asked if they had used home care help, home nursing care, or been admitted to a nursing home in the last 12 months. The variable “Do you have friends that can help you when you need them?” is also included. The response alternatives to all questions above were yes or no.

Other variables

Questions on whether the participants had used blood pressure medication, had a heart attack, angina pectoris, heart failure, other heart disease, atrial fibrillation or diabetes, and one question on whether they had pain that had lasted more than 6 months were included. The response alternatives were yes or no. Obesity as a variable is created from reported Body Mass Index (BMI). BMI is a continuous variable recoded as a dichotomous variable. BMI under 29.9 was given the value 0, and BMI > 30 is considered obese, and given the value 1.  The question “How often do you exercise?” had the response alternatives “never”, “less than once a week”, “once a week”, “2-3 times a week”, and “nearly every day”.

Statistical analyses

Descriptive data analyses were performed. Continuous variables were analysed with t-test and presented with mean and standard deviation. Ordinal and categorical data were analysed with Chi-square test and the level of significance set to p<0.05. Where the questions had more than one value and the Chi-square test indicated statistical significance, we did a post hoc Bonferroni test. This entails that if, say, there are six possible hypotheses (i.e. 0.05/6), the p value must be <0.008 for the individual hypothesis to be considered statistically significant. Descriptive statistics are presented in frequency tables, figures, and described in the text. Data were analysed using the statistics programme SPSS version 22.

Ethics

This study has been evaluated and approved by the Regional Committee for Medical and Health Research Ethics (REC east C, no. 2012/2261), by the Norwegian Centre for Research Data in 2013, and was given permission to use data material from HUNT Research Centre in 2013.

Results

Table 1 shows the sample of 1190 respondents, with 572 (48.1 per cent) women and 618 (51.9 per cent) men. The average age was 68 years, and post hoc tests showed that there were no significant differences in age between women and men. The oldest woman was 95 years and the oldest man 88 years. More men were married or cohabited (80.9 per cent, p<0.001), whereas more women were widows (p<=0.001) or lived alone (p<0.001).

The average age at first stroke was 58 years (SD 14.4), and the median age was 60 years. Earliest reported stroke for both women and men in the sample happened before turning 1 year.  There were no significant differences between women and men in number of strokes (p=0.682), as many as 79.9 per cent had suffered just one stroke. The majority were admitted to hospital when suffering their most recent stroke, but women were admitted less frequently than men: 77.8 per cent of the women and 85.9 per cent of the men (p=0.001). There was no difference between women and men in the use of blood pressure medication (p=0.450), incidence of atrial fibrillation (p=0.757), diabetes (p=0.135) or BMI (p=0.890). Around 30 per cent reported a BMI of more than 30. One fifth (20.5 per cent) reported exercising more or less daily, and 10 per cent reported that they never exercised. There was no significant difference between women and men in this. More men had had a heart attack, heart failure, and angina pectoris (p<0.001). More women had had long-term pain of more than six months’ duration compared to men, 60.1 per cent and 42.7 per cent respectively (p<0.001).

Table 2 shows how women and men assessed their own health, and the post hoc test showed that a significantly larger proportion of the men reported being in good health compared to the women.

Table 3 shows that nearly ¾ of the total sample had completely recuperated after the most recent stroke (72.3 per cent), with no significant difference between women and men (p=0.595). Only 6.2 per cent reported moderate to very severe disability, with no significant difference between women and men.

Figure 1 shows significant differences in the ability to manage normal, daily tasks between women and men > 70 years.

More than 90 per cent of both women and men answered that they were able, without help, to walk indoors on one floor, go to the bathroom, wash themselves, bathe or shower, dress, go to bed and get up, and eat. There were no significant differences.

There were no significant differences between women and men in the use of health services during the last twelve months, with the exception that women more often sought alternative treatment (p<0.001) and other medical specialist services (p<0.014). Figure 2 shows that significantly more women aged 70 and above used home care help (31.2 per cent women and 12.4 per cent men, p<0.001) and home nursing care (20.8 per cent women and 10 per cent men, p<0.001) during the past twelve months.

Discussion

This is one of few Norwegian studies to survey whether women and men assess their health and functional ability differently after a stroke, and whether there is any difference in the use of health services. An important finding is that as many as 72 per cent report having completely recuperated after their last stroke, which is good. Women and men both report a low level of disability; 92 per cent of the women and 96 per cent of the men report no significant disability to slight disability. This finding is unexpected as prior research from Norway and other countries has found that about every third person who has a stroke suffers varying degrees of disability (4,6,32). New figures from The Norwegian Stroke Registry show that in 2013 two out of five had completely recuperated three months after the stroke (5); this may suggest support for the present study’s figures. One explanation for so many participants reporting a low degree of reduction in functional ability may be that the Nord-Trøndelag Health Study consists mainly of people living at home.  Earlier studies have often been based on patients admitted to hospital after a stroke, or nursing home residents. There are also other possible ways of interpreting these findings. In HUNT 3 the average age at the first stroke was 58 years, while the average age at participation in the survey was 68 years.  Research shows that the effect on functional outcome may be mild (33), and some of this may disappear over time (34,35). Many respondents may also have adapted to any consequences of the stroke (36), and may thus not notice any small effects still remaining. Underreporting is also a possibility. One may also speculate whether the HUNT version of mRS does not catch “hidden and invisible outcomes” from the stroke, such as for instance depression, anxiety, light concentration difficulties, and sleep disorders. HUNT has changed the original instrument by excluding a concretisation of the response alternatives with examples.

The difference in disability between women and men in this study is negligible. This is in opposition to findings of earlier research that show that women suffer a greater degree of disability than men (19,21,37,38), also when adjusting for the seriousness of the stroke (37). Gender alone is, however, not a decisive factor for the degree of disability following a stroke.

In line with earlier research on women’s health in general and following stroke in particular, the women in this study report poorer health than the men (17,18,39-43). It is reasonable to assume that some factors are direct consequences of the outcome of the disease. Such consequences may be pain issues (4) as reported by the majority of women in this study. We have no basis for saying that there is a connection between the pain and the stroke, but it is important that health personnel address such issues in the encounter with the individual patient. A majority of the women in this study live alone, are single, and fewer women than men have friends that can help when needed.  These are psychosocial factors that may contribute to explaining why women and men assess their health differently. Earlier studies have assumed that these are factors that affect women’s and men’s health differently (3,43).

Another important finding is that more women than men over 70 years of age depend on assistance for normal, daily tasks after a stroke, and use more home care help and home nursing care.  There are several possible explanations for this. Fewer women than men have friends that can help them when needed and more women were widows and lived alone. This may help explain a greater use of home services by women.

In a gender role perspective it is not particularly surprising that more women than men reported being able to do laundry, light domestic chores, and prepare hot meals, and that more men had a driver’s licence, drove a car, and took the bus on their own.  This is in line with findings that sociocultural factors such as gender roles and social support may explain the women’s poorer health and functional ability after a stroke (27). One may speculate whether different gender roles alone, and expectations of such different gender roles, may affect women’s and men’s assessment of their health after a stroke. It is nevertheless important to emphasise that in questions on independence in daily activities and tasks, such as washing themselves, dressing, food shopping and getting out, there is no difference between women and men in this study.

Strengths and limitations

One strength of this study is that the HUNT 3 has population data that include a large number of persons who have suffered a stroke. Valid questionnaires have been used and the data have been quality assured. The analyses build on these strengths, and pose research questions of clinical significance and implications. Some limitations of the study need discussing. In this cross-sectional study there is great variation in the time that has passed from a person’s most recent stroke. Information that is based on someone remembering across varying time spans is tainted by a great deal of uncertainty. This is why analyses to describe consequences after, say, one, two or ten years have not been performed.  This would require a longitudinal design. Even if HUNT 3 has a relatively high response rate (54 per cent) (44), an analysis of the non-respondents indicates that these generally have weaker personal economy, higher mortality, and more chronic diseases, including stroke (44). Further, several non-respondents assessed their health as poorer and they had more frequently been admitted to hospital during the past twelve months (44). This entails that the most seriously ill stroke patients and those with the lowest socioeconomic status are not included in our study. The findings cannot therefore be considered representative for all people who have suffered a stroke. We assume that the findings may, with some caution, be generalised to healthier, home-residing persons with a fair personal economy, who have had a stroke. Nord-Trøndelag has a demography presumed to be fairly similar to the rest of the Norwegian population (8). Another limitation, however, is that these are self-report results, and it is possible that a lower outcome would have been the result in the case of medical testing of the patients.

Conclusion

This study shows no difference in disability between women and men after a stroke. It may, however, seem as if a stroke has a more negative effect on women’s health. It is worth noting that although the majority of the participants were admitted to hospital in connection with their most recent stroke, women were less frequently admitted to hospital than men. More women than men received home nursing care and home care help.  Further research should investigate possible gender, psychosocial, or biological causes for such differences. Personal economy and number of chronic diseases are most likely significant, and should be included in future studies. Qualitative studies will be able to contribute to deeper insight into this issue.  Health personnel need to be aware that women and men live somewhat different lives, and that this may affect how they assess their own health, and the rehabilitation and help they need after a stroke. An important implication for nursing practice is to facilitate individually adapted treatment and rehabilitation.  Special attention should be paid to women, who more often live longer and alone, so that they more easily learn to manage daily activities and tasks after a stroke.

Acknowledgement

Data are taken from The Nord-Trøndelag Health Study (HUNT) – a collaboration between HUNT Research Centre (Faculty of Medicine, Norwegian University of Science and Technology (NTNU)), Nord-Trøndelag County Council, Central Norway Health Authority and Norwegian Institute of Public Health.

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The Coordination Reform of 2012 specifies that communication between health personnel shall be mainly electronic (1). The goal is for all hospitals and municipalities to have introduced electronic messaging by the end of 2015 (2). Such electronic communication shall facilitate a more efficient and secure collaboration on patients moving between hospitals and municipal care services (1).

Coordination challenges in the interface between hospital and municipalities are well documented. Patients who are discharged from hospital into municipal care are particularly vulnerable (1,3): They remain in hospital waiting for municipal care services (4), the content of the information exchanged is incomplete or unclear (5-7), and the information flow is fragmented and characterised by inefficient communication lines (8-10).

Organisational factors such as poor planning of the patient transfer and limited knowledge of the patient’s condition also create challenges in the communication between hospital and municipality (11). This is also the case for cultural factors such as nurses’ different professional approaches to, and understanding of, the patient’s needs in hospital and municipal care services (12,13). National and international literature shows that there is potential in using information and communication technology (ICT) in the exchange of collaboration information (14-17).

Flaws in the information exchange and communication between hospital and municipality are serious as they may lead to the patients not receiving the treatment and care they need (18-20). To ensure the transfer of sufficient and relevant information between hospital and municipality, treatment and care messages (PLO messages) have been introduced as tools to improve such collaboration. The PLO messages comprise a set of several standardised messages to support the admittance, assessment/treatment, and discharge phases of a hospital stay. Dialogue messages for current, interactive collaboration are also available (see table 1) (21,22). As of January 1, 2015, 99 per cent of all municipalities (422/428) had introduced PLO-messaging in their collaboration with hospitals. This is a sharp increase from only four municipalities in May of 2012 (23).

Limited documentation exists on the effects of various collaboration efforts in general (24), and on experiences with electronic messaging between hospital and municipal health care services in particular. Feedback from other areas in the health services on the use of electronic messaging reports gains such as increased access to necessary health information, and improved quality of the information exchanged (23,25,26). All in all, few studies have taken a direct look at the collaboration between nurses in the use of PLO messages when discharging patients from hospital to municipality.

The purpose of this study is to explore nurses’ experiences with PLO-messaging in the discharge of patients from hospital to municipal health care services. The study has at its point of departure the concept of informational continuity as defined by Haggerty et al. and Reid et al. (27-28): Informational continuity is here related to the transfer of “relevant and sufficient information” between health workers in a chain.  This encompasses personal information on the patient, health condition and prior treatment, so that further services can be given in accordance with the patient’s need for assistance at the right time.

Material and method

We used an explorative, qualitative design with semi-structured individual interviews and group interviews (8/14). The study was carried out at a university hospital and in the municipal home health care services of three municipalities in the hospital’s region. Strategic selection was used for the inclusion of the hospital and one municipality, as these were the first to introduce electronic messaging. The other two municipalities were chosen at random.

The interviews were carried out from February to November 2014 and 41 employees participated. The majority of the participants had been employed at their current unit since before the implementation of the Coordination Reform in 2012. In order to widen our understanding of the complexity of the collaborative chain, we included health personnel in a variety of roles. At the hospital, 15 nurses and two social workers from a variety of wards in three divisions participated. We interviewed 24 employees in the municipalities: 12 were practicing nurses in the municipal home health care services, 10 were nurses in coordinator-purchaser or management positions, and two were responsible for IT. Each interview lasted 40-50 minutes, was recorded and transcribed. The interview guide was worded to bring out health personnel’s views, assessments, and experiences with using PLO messages, with questions on type, frequency, information sharing, did they receive enough information to provide responsible health care, and what other forms of communication did they use. All authors participated in the data collection to ensure accuracy and consistency in the process.

We used an inductive approach in the analysis (29). First, all three authors went through the material and identified overarching themes. We found that communication and collaboration in the discharge process were central themes for informants both in hospital and municipal home health care services, and we decided to pursue this further. We worked on meaning condensation and coding (30), and then categorised the material based on three phases of a hospital stay: Admission, assessment/treatment, and the discharge phase itself. These phases represented a variety of communication and collaboration challenges. We finally went through the categories in each of the three phases and gathered them under three analytical themes. These themes make up the structure in the results chapter.

The project was reported to The Norwegian Centre for Research Data and to the regional health authority’s privacy officer.  The informants were recruited through their leaders and given written information on the project. We received written consent from all participants in the study.

Major findings

The major findings show that the informants were satisfied with communicating using PLO messages, both in general and in connection with the planning of the discharge process in particular. The use of PLO messages was well integrated in the nurses’ workday and enabled a closer collaboration between hospital and municipalities. “A time saver” was a concept that kept coming up in the interviews.

The analysis showed that each phase of a hospital stay entails different challenges for the nurses with regard to communicating and coordinating the planning and execution of the discharge.  Health personnel have to set a discharge date as early as at the time of admission; we have called this “predicting the unpredictable”. During the assessment and treatment phase the hospital nurses, and especially the municipal nurses, must stay updated with regard to the patient’s progress. They must also, at the same time, start planning the services to be delivered to the patient following discharge. This we address in the chapter “keeping the thread”. On the day of discharge a substantial amount of information must be communicated from hospital to municipality, and the municipal health care services must have their own services ready for the patient. We have designated this “collecting the threads”, and address it in the final part of the results chapter.

Predicting the unpredictable

Information on the patient’s health condition, need of assistance, and expected time of discharge shall be transferred from hospital to municipal services within 24 hours of admission. The nurses used the message type “Health information at application” (“Preliminary message”) to the municipality for this information. They found estimating an expected date of discharge to be a challenge. Several nurses stated that they, not the physician, determined the date.  This was usually based on experience with the length of treatment related to a specific illness. At times a patient was in such poor condition that setting a discharge date was impossible.  The nurses would then inform the municipal health care services that an estimated date of discharge would be communicated at some point during the patient’s stay in the hospital.

How the municipalities dealt with “Preliminary messages” varied; anything from no action initiated to using the messages as a basis for decisions. The cause of the variations is unclear.  One possible explanation may be that there were marked individual differences in how the nurses filled in the health information forms. Some of the hospital nurses put it like this: “It varies, I guess … I was taught to use the (patient’s) treatment plan. The plan lists (the patient’s) communication ability, activity level and so forth, and then you fill in what is needed”. And: “But I see that many nurses here send off only one line, such as that the patient is admitted for intravenous antibiotic treatment”. So content and level of detail both varied in the messages sent to the municipality.

“Keeping the thread”

The nurses at both levels provided examples that sending updated health information forms during the hospital stay was well integrated in their work practice. We did, however, find that these changes and updates were not always sufficient for the municipality to make decisions. In order to gather the missing information, or clarify issues regarding the patient’s health condition and level of functioning, the municipal health care services contacted the hospital through dialogue messages. At times the municipality also called the hospital on the telephone. As one informant put it: “Some information is missing – that is why we call. And - it’s about ‘what are their thoughts (on this patient)?’ And about knowing a bit more when there is only a few words jotted down (in the Health Information Form)”. The municipal care services would at times also use assessment visits to the hospital, but such practice varied between municipalities. The informants emphasised that an assessment visit might uncover discrepancies between the hospital’s and the municipality’s description of the patient’s need for care. This had consequences for the care services the patient would receive upon discharge: “We have those (the patients) we are uncertain about, or those that are new to us, or those that they describe as having a great need of treatment and care:  It is not always that the (proper care need) is reported. So when we have no idea and nobody has seen the patient before, we go (to make an assessment visit) … Firstly, this simplifies the whole case work bit for us … another thing is that we have several times ended up with a totally different service (for the patient) than what the hospital has reported “ (Municipality).

We found that nurses in both hospital and municipality needed to know that messages had been received by collaborating health personnel. However, the hospital nurses suggested that there were differences in opinion as to what extent nurses were required to confirm reception of PLO-messages: “We thought that maybe it is a requirement that the municipality must confirm having received the PLO message. But, as some municipalities say: ‘no, we haven’t been told that this is a requirement’. We can see that the message has been sent, but we cannot see whether they (the municipality) have read it” (Hospital). The hospital considered feedback to be a precondition for proper planning of the patient’s discharge. It was important in order to inform the patient of what services he or she would receive upon discharge, and for ordering an ambulance to transport the patient.

Both hospital and municipalities used PLO messages to keep track of the patient flow. More specifically, the nurses used the content of the messages as a basis for working out their own manual lists, either on paper or electronically. The municipality used these lists to keep track over time of patients ready for discharge. This ensured that no patients dropped out of the system: “And then the list really is quite good. You constantly keep in mind whom to ask for, or check whether the patient has arrived home (…). Yes – it’s sort of a shadow account”. We also found an example of the hospital using such a list to keep track of patients in and out of a ward, or to identify needs for nursing support from the hospital for patients who were discharged into municipal home health services: “If the patient is going home with CVC (central venous catheter), the municipal employees need training. Then we have to deploy an ambulating team”.

Gathering the threads

The discharge situation started with the hospital nurses sending “Notification of patient ready to be discharged” to the municipality. The nurses also filled in and sent off the message type “Discharge report”. Some nurses said that they also sent a paper printout of the discharge report along with the patient. Discharging a patient on a Friday afternoon constituted a typical situation: “The patient does not always arrive home during office hours and this may leave those (municipality) who are going to receive the patient without access to the relevant information” (Hospital). The patient was also given a medication list and discharge summary, if completed, on paper by the hospital.

 The hospital nurses reported that filling in the Discharge report was difficult at times. This was due to the very format of the report. It is “a bit awkward”, as one nurse put it. The nurses had a guide to follow, but they felt that the pointers in the guide overlapped. Some also experienced it as doing the same work twice as the discharge report is almost identical to the Health information form, even if they were able to reuse texts through cutting and pasting.

Practicing nurses in the municipal home health care services were frequently not involved until the very day of discharge, when they received the message ‘Patient ready for discharge’. The nurses said that at times they experienced that for already known users, the message with the discharge report from the hospital did not arrive until a couple of days after the user’s arrival home. They solved this predicament by making a copy of the paper copy the user was given at the hospital. For municipalities that did not receive the patient medication list electronically, the paper version that accompanied the patient represented an added challenge. The nurses frequently experienced discrepancies between the medication list accompanying the patient and the list of medications the patient was on before being admitted to hospital. This added to their workload; the patient’s primary physician had to be contacted through electronic messages or via telephone to confirm the changes in medication. The nurses also had to spend time on manually entering the medication changes into the report: “And then, at times, that list (medication list) doesn’t quite agree (with the medication list prior to admission), or there are pills on the old list that we think he (the patient) ought to keep taking. And then we have to, when the next workday arrives, confer with the primary physician on whether that [medication] should in fact be discontinued or …” (Municipality). There were no corresponding statements where electronic medication lists were introduced.

Discussion

The purpose of this study was to explore nurses’ experiences with the use of PLO messages at the discharge of patients from hospital to municipal health care services. One major finding was that the nurses expressed satisfaction with being able to communicate and exchange information electronically. The use of PLO messages was well integrated into the workday.  However, the nurses reported that the PLO messages did not support all aspects of their communication needs. They therefore used supplemental communication channels to ensure informational continuity. They were thus able avoid any unfortunate consequences for the patient. This challenges the Coordination Reform’s aim to make electronic communication the preferred form of communication between health personnel (1).

Electronic messaging had to be supplemented with oral speech and in person meetings to clarify and explore ambiguities, and/or gather additional information. This was due to, a. o., the lack of predictability with regard to the patient’s discharge date, inconsistencies between the patient’s medication list in the municipality and in the hospital, information missing in messages, and differences in professional approach between levels. In this way the study’s findings nuance the image of earlier reported gains from electronic messaging. This proves increased access to necessary health information and improved quality of content in the information transferred (26). The findings are nevertheless in accordance with other research that concludes that electronic communication solutions in the health services must frequently be supplemented with other communication channels (31-34).

The need to supplement with other channels of communication (telephone and assessment visits) to gather sufficient and relevant information on the patient was particularly voiced by the municipal nurses. They frequently had to circumvent the messaging system in order to secure the treatment of the patient. This was due to inconsistencies between the (paper) medication list accompanying the patient and the patient’s medication list prior to admission. In accordance with examples from the literature, this study shows that manual information exchange on medication may represent a threat to patient security (25,37). This was not reflected in cases where electronic medication lists were in use (25,37). 

The need for supplemental communication channels also related to the information content in messages passed from hospital to municipality, such as “Preliminary message”, which initiated the discharge process. In accordance with findings in studies from before the electronic messaging system was implemented (12,13), the nurses in hospital and municipality still had different professional approaches to the patient’s health condition. The hospital nurses related the message information to diagnosis and treatment, e.g. that the patient was admitted with pneumonia and would receive intravenous antibiotic treatment. The municipal nurses, on the other hand, needed information on the patient’s total level of functioning, need for assistance, and preferences. Such information was needed in order to prioritise the most seriously ill patients for further care in a nursing home. This was also necessary in order to plan for care services and technical aids or equipment prior to the patient’s arrival home, and thus avoid any postponement of patient treatment and follow-up (18). The need for oral clarifications and additional information was especially evident in the case of patients who had not formerly been users of municipal services, the so-called “0-user”.

 Standardised PLO messages are based on standard content elements with a possibility of adding free text. Our findings show that the nurses found the use of free text in the PLO messages to be a challenge. Although the hospital nurses were able to harvest text content from an electronic patient report, they nevertheless reported individual variations in the wording of the messages. This would be the case, for instance, with regard to the richness of the textual description and which fields were used. The results of a recently published article does show, however, that the fact that the messages they write will be stored in the report system makes nurses pay more attention to the way they express themselves in writing (38).

The use of free text with individual choices of words and phrasing may make the hospital’s documentation of health services and the patient’s level of functioning appear somewhat fragmented to the receiver, the municipality. One possible explanation is that the report leaves room for unstructured documentation and that there was overlap in the work performed due to the similarities between the “Health information form” and the “Discharge report”. More recent literature, however, points to explanatory factors such as differences in the report systems in hospital and municipality, and that the profession lacks a standardised national model for the nurses’ reports (22).  That health personnel communicate in an agreed-upon, professional language - semantic interoperability (22) - is an important precondition for exchanging and sharing information across levels.

Technology can open up to new ways of working (39). A somewhat surprising finding in this study was that hospital and municipal nurses both used the PLO messages to keep track of the patient flows. Such use did, however, vary within and between levels. A possible explanation is the uncertainties surrounding the patient’s expected date of discharge from hospital. The municipalities reported receiving a series of change of date messages regarding patients’ discharge dates.  This would complicate their user records. The municipal care services would have to make sure that the patients did not drop out of the system as well as adapt the planning of services and resources. Another explanation may relate to whether the PLO messaging system has a function for feedback on messages received, and how well known this is within an organisation (25). For nurses on both levels it was important to receive notification of whether their messages had been received and read.

The study’s limitations

The sample of one hospital and three municipalities is too small to draw any general conclusions regarding the nurses’ experiences with the use of PLO messages at discharge of patients from hospital to municipal home health care services. Neither have we considered organisational factors or the length of time the PLO messages have been in use at the various units. Findings discussed in relation to earlier research do, however, support the validity of the study.

Conclusion

PLO messaging provides a useful communication tool in the discharge process. It must, however, be supplemented by oral communication and personal meetings in order to safeguard informational continuity with regard to discharge planning and discharge of patients from hospital to municipal home health care services. In order to strengthen the message exchange system’s role as a communication tool, more work is needed on the content of the message form’s free text fields. Achieving a common understanding for the need for information across health service levels is also important.

The study is supported by The Research Council of Norway, RCN project no 229623-SIKT (EVASAM-programme).

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