Involvement of service user representatives on a healthcare organizational level at Norwegian Healthy Life Centres: A qualitative study exploring health professionals' experiences.

BACKGROUND: The involvement of service user representatives in planning, delivering, and evaluating health care services is regarded as essential in Healthy Life Centres (HLCs) to ensure high-quality services. However, information on how HLC-professionals involve service user representatives at a healthcare organizational level at HLCs remains sparse. OBJECTIVE: To explore HLC professionals' experiences involving service user representatives in planning, delivering, and evaluating the HLC services. METHODS: Five qualitative semi-structured focus group interviews with 27 health professionals from 27 Norwegian HLCs were conducted. Data were analysed using systematic text condensation. RESULTS: The involvement of service user representatives at the HLCs varied from well-integrated and systematized to the opposite. The professionals' primary rationale for involving service user representatives was to include the representatives' unique experiential knowledge to ensure the quality of the service. Experiential knowledge was seen as a 'different' competence, which came in addition to professional competence. The professionals' choice of service user representatives depended on the purpose behind the involvement initiative. The HLC professionals often hand-picked former service users according to their health problems, motivation, and the HLC's need. The professionals said they were responsible for initiating the facilitation to accomplish genuine involvement. Support from their leaders to prioritize these tasks was essential. CONCLUSION: To meet the demand for adequate service user representatives, the HLCs need access to different service user representatives, representing both diagnose-based and generic service user organisations and the public. To achieve genuine involvement, the rationale behind the involvement and the representatives' role must be clarified, both for the HLC professionals and service user representatives. This will require resources for continuous organizational preparation and facilitation.

Chronic pain self-management interventions in primary care - does it make any difference? A qualitative study.

BACKGROUND: Total recovery from chronic pain is difficult. It is therefore important for those who are suffering from chronic pain to find ways to self-manage their pain in daily life. Several chronic pain self-management interventions have been established, but more knowledge is needed to find out what and how it works. This study aimed to explore how the participants in two chronic pain self-management interventions in primary health care experienced the different components of the interventions, and whether the interventions induced any positive changes in the participants' everyday lives. METHODS: A qualitative study nested within a randomized controlled study using semi-structured individual face-to-face interviews with 17 informants were conducted three months after the interventions. The data were analysed thematically using Systematic Text Condensation. RESULTS: The main finding was that the informants, from both interventions, self-managed their chronic pain differently in a positive way after they had participated in the self-management interventions. The participants gained new insight from lectures, learning from peers by sharing experiences and belonging to a group, and by recognizing the importance of being physically active. CONCLUSION: This study shows that chronic pain self-management interventions consisting of components that learn the participants about chronic pain and include physical activity in a socially supportive environment, may contribute to a positive change in the lives of people living with chronic pain.

A longitudinal study of educational needs among patients with inflammatory arthritis.

INTRODUCTION: Patient education is important in the follow-up and disease management for patients with chronic inflammatory arthritis. Patients' needs for education and information varies, and it is important that the education is tailored to the individual patient. Hence, the aim of this study is to investigate whether patients' educational needs change over time, and which demographic, disease-related or self-management characteristics that are associated with patients' educational needs. METHODS: The Mann-Whitney U-test was used to study patients' longitudinal educational needs and whether their needs change over time, while multivariable linear regression analyses were used to investigate associations between patients' educational needs and demographic variables, disease-related and self-management characteristics. RESULTS: There were no changes in patients' educational needs in the domains of managing pain, movement, feelings, arthritis process and treatment from health professionals during the study period of seven years. A small decrease in educational needs in the domains self-help measures (p-value 0.047) and support from others (p-value 0.010) was detected. The regression analyses showed that higher educational needs were associated with being female, lower educational level, shorter disease duration, and a lower level of patient activation. CONCLUSIONS: Patients with chronic inflammatory arthritis have continual needs for patient education throughout their disease trajectory. Nurses and health care professionals must therefore ask their patients what kind of education they need at every follow-up throughout the disease course.

Health status and self-management in patients with inflammatory arthritis-A five-year follow-up study after nurse-led patient education.

Aim: The aim of this study was to investigate changes in patients' self-management and health status five years after nurse-led patient education. Design: A longitudinal study. Methods: We collected self-reported data on physical function, pain, tiredness, disease activity, psychological status, patient activation and self-efficacy from a sample of Norwegian-speaking adults with inflammatory arthritis that had participated in a randomised controlled study investigating the effects of nurse-led patient education. Changes and associations in patients' health status and self-management were analysed with paired sample t tests and multivariable linear regression analyses, respectively. Results: Except from a small deterioration in patients' physical function, there were no changes in patients' health status 5 years after the nurse-led patient education. Patients' self-management skills were improved after 5 years. Self-efficacy was positively associated with female gender, patient activation, less tiredness and less psychological distress.

Respect, trust and continuity: A qualitative study exploring service users' experience of involvement at a Healthy Life Centre in Norway.

BACKGROUND: To meet the challenges caused by non-communicable diseases, Norway has established Healthy Life Centres within primary care to encourage a healthy lifestyle. To promote people's health and ensure high-quality services, user involvement in contemporary health care is regarded as essential. OBJECTIVE: To explore the experience of user involvement among Healthy Life Centre users participating in individual health consultations, followed by physical activity groups and/or diet courses. METHODS: This was a qualitative study based on twenty semi-structured individual interviews conducted between September 2015 and May 2016 at a Healthy Life Centre in Norway. Data were analysed using systematic text condensation. RESULTS: Being respected and having a trustworthy relationship with the professionals were found to be essential for the service users' involvement. Building a trustworthy relationship was disrupted for some service users by a lack of relational continuity. This lack of continuity jeopardized the continuation of professionals' awareness of the service users' challenges and personal goals. The service users' preferred levels of user involvement varied. Some service users did not always want to play an active part and instead wanted the professionals, as "experts," to decide. CONCLUSIONS: The findings imply that the professionals need to assess each service user's desires for involvement and consider how these can be met. Thus, user involvement cannot be understood without considering the particular setting and each individual service user's preferences for involvement. Relational continuity is needed to maintain the service users' challenges and goals throughout the services and to promote health behaviour changes.

Participants and developers experiences with a chronic pain self-management intervention under development: A qualitative study.

BACKGROUND: Non-pharmacological interventions aim to promote health and self-management for people with chronic pain. OBJECTIVE: The aim of this study was to explore if the participants' experiences with a self-management intervention under development were aligned with the developers' rationale and desired outcome of the intervention. METHODS: This was a qualitative study interviewing both participants and developers of a chronic pain self-management intervention. Seven participants, six females and one male in the age from early thirties to mid-seventies attended the chronic pain self-management intervention developed by the staff at a Healthy Life Centre. The data were analysed by the systematic text condensation method. RESULTS: The analyses showed that the participants evaluated the intervention as valuable. They described using coping techniques to manage their chronic pain better, and the developers stated that the aim with the intervention was to provide the participants with coping techniques. The intervention was built upon the developers' professional knowledge and experience in cognitive techniques, health theories, models for behavioural change, and service user involvement. CONCLUSION: This study found that the chronic pain self-management intervention was in concordance with theory of health promotion and empowerment. The participants experienced the intervention as targeting their resources, capacities, and fulfilling social needs, which aligned with the developers aim with the intervention. The participants found the intervention evocative; they learned new ways to manage their pain through theory/education, movement exercises, homework, and sharing their experiences with each other.

Twelve-month effect of chronic pain self-management intervention delivered in an easily accessible primary healthcare service - a randomised controlled trial.

BACKGROUND: To investigate the effects after twelve months related to patient activation and a range of secondary outcomes on persons with chronic pain of a chronic pain self-management course compared to a low-impact outdoor physical activity, delivered in an easily accessible healthcare service in public primary care. METHODS: An open, pragmatic, parallel group randomised controlled trial was conducted. The intervention group was offered a group-based chronic pain self-management course with 2.5-h weekly sessions for a period of six weeks comprising education that included cognitive and behavioural strategies for pain management, movement exercises, group discussions and sharing of experiences among participants. The control group was offered a drop-in, low-impact, outdoor physical activity in groups in one-hour weekly sessions that included walking and simple strength exercises for a period of six weeks. The primary outcome was patient activation assessed using the Patient Activation Measure (PAM-13). Secondary outcomes included assessments of pain, anxiety and depression, pain self-efficacy, sense of coherence, health-related quality of life, well-being and the 30-s Chair to Stand Test. Analyses were performed using a linear mixed model. RESULTS: After twelve months, there were no statistically significant differences between the intervention group (n = 60) and the control group (n = 61) for the primary or the secondary outcomes. The estimated mean difference between the groups for the primary outcome PAM was 4.0 (CI 95% -0.6 to 8.6, p = 0.085). Within both of the groups, there were statistically significant improvements in pain experienced during the previous week, the global self-rated health measure and the 30-s Chair to Stand Test. CONCLUSIONS: No long-term effect of the chronic pain self-management course was found in comparison with a low-impact physical activity intervention for the primary outcome patient activation or for any secondary outcome. TRIAL REGISTRATION: ClinicalTrials.gov: NCT02531282 . Registered on August 212,015.

Short-term effect of a chronic pain self-management intervention delivered by an easily accessible primary healthcare service: a randomised controlled trial.

OBJECTIVES: To investigate the effects on persons with chronic pain after 3 months of a group-based chronic pain self-management course compared with a drop-in, low-impact outdoor physical group activity on patient activation and a range of secondary outcomes. DESIGN: An open, pragmatic, parallel group randomised controlled trial. Analyses were performed using a two-level linear mixed model. SETTING: An easily accessible healthcare service provided by Norwegian public primary healthcare. PARTICIPANTS: A total of 121 participants with self-reported chronic pain for 3 months or more were randomised with 60 participants placed in the intervention group and 61 placed in the control group (mean age 53 years, 88% women, 63% pain for 10 years or more). INTERVENTIONS: The intervention group was offered a group-based chronic pain self-management course with 2.5-hour weekly sessions for a period of 6 weeks. The sessions consisted of education, movement exercises and emphasised group discussions. The control group was offered a low-impact outdoor group physical activity in 1-hour weekly sessions that consisted of walking and simple strength exercises for a period of 6 weeks. MAIN OUTCOMES: The primary outcome was patient activation assessed using the Patient Activation Measure. Secondary outcomes measured included assessments of pain, anxiety and depression, pain self-efficacy, sense of coherence, health-related quality of life, well-being and the 30 s chair to stand test. RESULTS: There was no effect after 3 months of the group-based chronic pain self-management course compared with the control group for the primary outcome, patient activation (estimated mean difference: -0.5, 95% CI -4.8 to 3.7, p=0.802). CONCLUSIONS: There was no support for the self-management course having a better effect after 3 months than a low-impact outdoor physical activity offered the control group. TRIAL REGISTRATION NUMBER: NCT02531282; Results.

Individual user involvement at Healthy Life Centres: a qualitative study exploring the perspective of health professionals.

The aim of this study was to explore how professionals experience user involvement at an individual level and how they describe involving users at Healthy Life Centres. Four focus group interviews were conducted with a total of 23 professionals. Data were analysed using systematic text condensation. Four themes were identified: (1) Involving users through motivational interviewing; (2) Building a good and trustful relation; (3) Assessing and adjusting to the user's needs and life situation; and(4) Strengthening the user's ownership and participation in the lifestyle change process. Motivational interviewing was described by the professionals as a way to induce and ensure user involvement. However, seeing motivational interviewing and user involvement as the same concept might reduce user involvement from being a goal in itself and evolve into a means of achieving lifestyle changes. The professionals might be facing opposing discourses in their practice and a dilemma of promoting autonomy and involvement and at the same time promoting change in a predefined direction. Greater emphasis should thus be put on systematic reflection among professionals about what user involvement implies in the local Healthy Life Centre context and in each user's situation. ABBREVIATIONS: HLC: Healthy Life Centre; MI: Motivational Interviewing; NCD: Non-communicable diseases; STC: Systematic Text Condensation. SDT: Self-determination theory.

Expectations towards participation in easily accessible pain management interventions: a qualitative study.

BACKGROUND: People with chronic pain use a range of healthcare services, but they also report a high degree of dissatisfaction with treatments. One reason for dissatisfaction might be participants' expectations towards treatments. The aim of this study was to explore expectations of people with chronic pain towards participation in easily accessible pain management interventions delivered in public primary care. METHODS: A qualitative study using semi-structured individual face-to-face interviews with 21 informants. The informants were recruited among participants enrolled in a randomised controlled trial on the effect of an easily accessible self-management course for people with chronic pain. The data were analysed thematically using Systematic Text Condensation. RESULTS: Having experienced pain for a long time, there was no specific expectation of a cure or a significant alleviation of the pain. The informants' expectations mainly concerned a hope that participation could lead to a better everyday life. The informants said that hope was important as it motivated them to keep going and continue self-care activities. The hope acted as a driving force towards trying new interventions and maintaining motivation to do activities they experienced as beneficial. Both concrete aspects of the current intervention and an understanding of what interventions in general could offer contributed to the informants hope. The expectations centred about the interventions being something new, as they had not previously tried this service, an opportunity to gain and reinforce skills, to help them continue to grow as a person, to meet others in similar situations, and to access professional support in an easy manner. Participating in interventions provided by healthcare services was seen by some as an act of self-care, where they did something active to manage their health. CONCLUSIONS: Expectations towards the interventions were related to a hope for participation leading to a better everyday life. The role of hope for peoples' motivation to self-care implies that service providers should be aware of and help to maintain hope for a better everyday life. The importance of social support as part of self-care should be acknowledged when developing interventions targeting chronic pain. TRIAL REGISTRATION: ClinicalTrials.gov: NCT02531282 . Registered on August 21 2015.

What else should we know about experiencing COPD? A narrative review in search of patients' psychological burden alleviation.

The present paper is a narrative review focusing on the psychological impact, identification of protective factors, and interventions minimizing the psychological burdens of chronic obstructive pulmonary disease (COPD). The research reviews studies on neurocognitive functions, personality, emotional problems, and health-related quality of life. This is done with regard to resources as well as activities enabling or enhancing a patient's adaptation. PubMed and PsychArticles databases were searched for relevant medical (eg, CODP, emphysema), psychopathology (eg, depression), and psychological (eg, personality) keywords, followed by hand search. After application of the inclusion and exclusion criteria, the search resulted in 82 articles and book chapters. The choice was based on evidence accepted by evidence-based medicine, although at different levels of strength. Psychological experiencing of COPD appears to be very unequally represented with scientific research on emotional problems and functioning decrease significantly outnumbering those addressing resources or effective interventions. As our initial literature search called for an urgent need for further exploration, we have carefully pointed out numerous areas where the knowledge on how to protect or restore psychological well-being among COPD patients should be broadened.

Expectations, effect and experiences of an easily accessible self-management intervention for people with chronic pain: study protocol for a randomised controlled trial with embedded qualitative study.

BACKGROUND: People struggling with chronic pain may benefit from different types of non-pharmacological interventions such as self-management courses. Self-management courses aim to increase participants' skills and knowledge in managing chronic conditions. Community health-care services in Norway have increasingly established Healthy Life Centres (HLCs) to offer easily accessible interventions to people in need of support to better handle a life with chronic illness. The aim of this trial is to investigate the expectations, effect and experience of an easily accessible, group-based self-management course delivered at a HLC for people with chronic pain. METHODS/DESIGN: This is an open pragmatic two-armed randomised controlled trial with an embedded qualitative study. The intervention is a self-management course comprising education, discussions, exchange of experiences between the participants, and physical movement exercises. The control group is offered a drop-in outdoor physical activity. The intervention period is 6 weeks. The primary outcome is patient activation measured by the patient activation measure (PAM). The secondary outcomes include measures of self-efficacy, pain and quality of life. Data will be collected at baseline, and after 3, 6 and 12 months. Using a mixed linear model, the number needed in each arm to achieve a power of 80 % becomes 55. To allow for dropout, the aim is to include 120 participants. Analysis will be done using mixed linear models. In the embedded qualitative study, we will perform semi-structured face-to-face interviews with a sample from both trial arms before randomisation and after 3 and 12 months. The topics elaborated will be motivation for participation and experiences with the activity related to possible changes in managing and coping with chronic pain. DISCUSSION: There is need for more knowledge on interventions delivering self-care support in an easily accessible way that aim to reach those in need of this kind of health service. This trial will produce important knowledge on the effect and the experiences of participants in such an easily accessible self-management course delivered in Norwegian public primary care. TRIAL REGISTRATION: ClinicalTrials.gov: NCT02531282 . Registered on 21 August 2015.

Which Factors Influence Self-Efficacy in Patients with Chronic Inflammatory Polyarthritis?

OBJECTIVES: Patients with rheumatoid arthritis (RA), psoriatic arthritis (PsA) or unspecified polyarthritis (UA) deal with several symptoms such as joint stiffness, pain, physical limitations and fatigue. Self-efficacy is about patients' beliefs and abilities to handle the symptoms and implications of having arthritis. Patients' self-efficacy is also a phenomenon that nurses may affect through patient education. Therefore, the aim of the present study was to investigate the factors that predict self-efficacy in patients with chronic inflammatory polyarthritis. METHODS: The participants (n = 132) were recruited from St Olavs University Hospital in central Norway from 2008 to 2010, and consisted of adult patients with RA, PsA or UA. We performed secondary analyses on data collected in a randomized controlled trial studying the long-term effects of nurse-led patient education. We carried out bivariate and multivariate linear regression analyses. The predictor variables consisted of baseline data on demographics, disease characteristics (diagnosis, disease duration, disease activity, use of disease-modifying anti-rheumatic drugs, pain and tiredness) and psychological variables (well-being, psychological distress and patient activation). The dependent variables were self-efficacy over other symptoms and self-efficacy over for pain after one year. RESULTS: The analyses showed that female gender and patient activation predicted higher self-efficacy over other symptoms, whereas female gender and better well-being predicted higher self-efficacy over pain. CONCLUSION: To strengthen arthritis patients' self-efficacy, nurses need to focus on patients' well-being and activation. Nurses also need to be aware of possible gender differences regarding patients' self-efficacy. Copyright © 2015 John Wiley & Sons, Ltd.

Psychometric properties of the Hospital Anxiety and Depression Scale and The General Health Questionnaire-20 in COPD inpatients.

AIM: To compare the psychometric properties between the Hospital Anxiety and Depression Scale (HADS) and General Health Questionnaire-version 20 (GHQ-20) in detecting psychological distress in COPD patients referred to pulmonary rehabilitation, and to examine the factor structure of GHQ-20. METHODS: The study comprised 161 consecutive patients with mild to very severe COPD. For comparison of mean scores between the HADS and GHQ-20, one sample t-test was used. Potential differences in the detection of possible and normal cases were analysed using Pearson Chi square test. We report Pearson's correlations within and between the questionnaires, and internal consistency was assessed through Chronbach's alpha. The factor structure of the GHQ-20 was examined through principal axis factoring (PAF) with oblique rotation and eigenvalue >1. RESULTS: There were no differences in mean scores of psychological distress between HADS and GHQ-20 (12.03 vs. 24.73, p = 0.000), as well as no differences in the prevalence of possible cases of psychological distress (34.6 vs. 36.9, p = 0.000) and normal cases (65.4 vs. 63.1, p = 0.000). The observed difference between HADS and GHQ-20 regarding internal consistency was marginal, with Chronbach's alpha coefficients of 0.91 and 0.94, respectively. The PAF analysis resulted in a three-factor solution for GHQ-20, notably with only two items loading on the third factor, giving an internal consistency <0.70. A two-factor solution, comprising anxiety/depression and coping, may therefore be more appropriate. CONCLUSIONS: This study demonstrates no significant differences between the HADS and GHQ-20 in their ability to detect possible cases of psychological distress in a rehabilitation setting for COPD patients. Although the HADS and GHQ-20 are measuring different concepts of psychological distress, both questionnaires can be recommended as screening tools for detection of psychological distress in COPD inpatients. The GHQ-20 appears to be two-dimensional, comprising anxiety/depression as one dimension, and coping as the other dimension.

Relapse of health related quality of life and psychological health in patients with chronic obstructive pulmonary disease 6 months after rehabilitation.

AIMS: This study aimed to evaluate the short- and long-term effects of 4-week inpatient rehabilitation on health-related quality of life (HRQL), anxiety and depression in patients with chronic obstructive pulmonary disease (COPD) and investigate the influence of clinical and socio-demographical factors on unaltered or improved HRQL after discharge. METHODS: A total of 111 consecutive cases with mild-to-very severe COPD were recruited from three rehabilitation centres and measured at baseline (t1), 4 weeks (t2) and 6-month follow-up (t3). Disease severity was assessed by spirometric tests, HRQL by The St. George's Respiratory Questionnaire (SGRQ) and anxiety and depression by The Hospital Anxiety and Depression Scale (HADS). Socio-demography and co-morbidity was also reported. Changes in SGRQ and HADS scores from baseline to follow-up were analysed by paired-sample t-test, and logistic regression was used to investigate the influence of different factors on HRQL after discharge. RESULTS: Health-related quality of life and depression improved between t1 and t2: a change of -3.6 for the SGRQ impact score (p = 0.009), -2.8 for the SGRQ total score (p = 0.012), a clinical relevant change of -4.0 for the SGRQ symptom score (p = 0.012) and a reduction of -0.7 for the HADS depression score (p = 0.011). Between t2 and t3, all SGRQ and HADS scores deteriorated with enhancement of SGRQ impact score (+3.5, p = 0.016), SGRQ total score (+2.5, p = 0.029), HADS anxiety score (+1.1, p = 0.000), HADS depression score (+0.6, p = 0.022) and HADS total score (+1.7, p = 0.000). No significant differences between t1 and t3 were found, except for HADS anxiety score (+0.9, p = 0.003). Patients living alone were 2.9 times more likely to maintain or improve HRQL 6 months after rehabilitation than patients living with someone (95% CI 1.1-7.8, p = 0.039). CONCLUSION: Short-term benefits on HRQL and depression after rehabilitation relapsed at 6-month follow-up, but without any further deterioration from baseline. Living alone may be beneficial to maintain or improve HRQL after discharge.

Characteristics of patients with chronic obstructive pulmonary disease choosing rehabilitation.

OBJECTIVE: To identify and compare objective and self-perceived characteristics of patients with chronic obstructive pulmonary disease, who do and do not choose rehabilitation. SUBJECTS: The study comprised 205 consecutive patients with mild to very severe chronic obstructive pulmonary disease. They chose either inpatient rehabilitation (n = 161) or ordinary outpatient consultations (n = 44). MEASUREMENTS: Disease severity was assessed with spirometric tests, health-related quality of life was assessed with the St George's Respiratory Questionnaire, and mental status was measured using the Hospital Anxiety and Depression Scale. Socio-demographic and social characteristics, and co-morbidity variables were available. RESULTS: Patients in the rehabilitation group had a lower level of overall health-related quality of life (63.8 vs 47.6, p = 0.000) and a higher prevalence of anxiety (34.6% vs 13.6%, p = 0.007) than the outpatients. The outpatients received more psychological support from spouse/partner than patients in the rehabilitation group (70.5% vs 49.1%, p = 0.012). There were no differences in disease severity and co-morbidity. CONCLUSION: The decision to choose rehabilitation may be determined by impaired health-related quality of life, psychological distress and lack of psychological support from a significant other. Our findings suggest that patients with chronic obstructive pulmonary disease are conscious of their overall health status and the necessary treatment to maintain or improve it.