User involvement as sharing knowledge – an extended perspective in patient education

Anita Strøm,1 May Solveig Fagermoen2 1Department of Masters and Continuing Education, Lovisenberg Diaconal University College, Oslo, Norway; 2Institute of Health and Society, University of Oslo, Oslo, Norway Background: Patient education is undergoing a paradigm shift in which the perspectives of patients are increasingly being incorporated into learning programs. Access to the users' experience is now considered a prerequisite for the development of quality health services, but how this user experience is incorporated is somewhat unclear. The inclusion of experiential knowledge and user involvement can challenge professional authority, roles, and working methods because knowledge sharing is different from persuasion, professional explanation, and consent. Dialogue and collaboration between professionals and users are essential to effective user involvement; however, little is understood about the characteristics of their collaboration. Objective: To describe characteristics of the collaboration between users and health professionals in developing, implementing, and evaluating patient education courses in hospitals. Design, setting, and methods: A field study was conducted in three different hospitals. Data collection comprised open observations in meetings of 17 different collaboration groups with a total of 100 participants, and 24 interviews with users and professionals. The data analyses included both thematic and the Systematic Data Integration approach. Results: Two contrasting types of collaboration emerged from the analyses; knowledge sharing and information exchange. The first was characterized by mutual knowledge sharing, involvement, and reciprocal decision making. Characteristics of the second were the absence of dialogue, meagre exploration of the users' knowledge, and decisions usually made by the professionals. Conclusion: Collaboration between users and health personnel takes place in an asymmetric relationship. Mutual knowledge sharing was found to be more than the exchange of information and consultation and also to be a prerequisite for shared decision making. In developing patient education when users are involved the health professionals have the power and responsibility to ensure that knowledge sharing with users takes place. Keywords: user involvement, patient education, professional–patient relations, knowledge sharin

Trajectories of physical and mental health among persons with morbid obesity and persons with COPD: a longitudinal comparative study

Tore Bonsaksen,1 May Solveig Fagermoen,2 Anners Lerdal2,3 1Department of Occupational Therapy, Prosthetics and Orthotics, Faculty of Health Sciences, Oslo and Akershus University College of Applied Sciences, 2Department of Nursing Science, Institute of Health and Society, Faculty of Medicine, University of Oslo, 3Department for Patient Safety and Development, Lovisenberg Diakonale Hospital, Oslo, NorwayBackground: Morbid obesity and chronic obstructive pulmonary disease (COPD) are prevalent diseases associated with impaired health-related quality of life (HRQoL). Research generally indicates that persons with morbid obesity increase their HRQoL following intervention, whereas evidence of increases in HRQoL in persons with COPD is mixed. Examining the patterns of change over time instead of merely examining whether HRQoL changes will add to the knowledge in this field.Methods: A sample of persons with morbid obesity and persons with COPD was recruited from learning and mastery courses and rehabilitation centers in Norway. The data were collected by self-report questionnaires at the start of patient education and at four subsequent time points during the 1-year follow-up. HRQoL was measured with the Short Form 12, version 2, and repeated measures analysis of variance was employed in the statistical analysis.Results: Participants with morbid obesity linearly increased their physical HRQoL during the 1-year follow-up, whereas participants with COPD showed no change. None of the groups changed their mental HRQoL during follow-up. In all subdomains of HRQoL, the participants with morbid obesity showed favorable, linearly increasing trajectories across the follow-up period. Among the participants with COPD, no change patterns occurred in the subdomains of HRQoL, except for a fluctuating pattern in the mental health domain. Age, sex, and work status did not influence the trajectories of HRQoL in any of the domains.Conclusion: A more favorable trajectory of HRQoL was found for persons with morbid obesity than for persons with COPD, possibly due to the obese persons' better chances of recovery.Keywords: health-related quality of life, longitudinal study, SF 12, change patterns, patient education cours

Morbid obese adults increased their sense of coherence 1 year after a patient education course: a longitudinal study

May Solveig Fagermoen,1 Glenys Hamilton,2 Anners Lerdal1,3 1Department of Nursing Science, Institute of Health and Society, University of Oslo, Oslo, Norway; 2GAH Consulting, Boston, MA, USA; 3Department of Research, Lovisenberg Diakonale Hospital, Oslo, Norway Background: Personal factors are key elements to understand peoples' health behavior. Studies of such factors are important to develop targeted interventions to improve health. The main purpose of this study is to explore sense of coherence (SOC) in a sample of persons with morbid obesity before and after attending a patient education course and to explore the association between SOC and sociodemographic and other personal factors. Methods: In this longitudinal purposely sampled study, the participants completed questionnaires on the first day of the course and 12 months after course completion. Sixty-eight participants had valid scores on the selected variables at follow-up: SOC, self-esteem, and self-efficacy. Relationships were assessed with correlation analyses and paired and independent samples t-tests and predictors with linear regression analyses. Results: From baseline to follow-up, the total SOC score and the subdimension scores comprehensibility, manageability, and meaningfulness all increased significantly. At both time points, the SOC scores were low compared to the general population but similar to scores in other chronically ill. At baseline, a multivariate analysis showed that older age, having paid work, and higher self-esteem were directly related to higher total SOC score after controlling for other sociodemographic factors and the participants' level of self-efficacy. Multivariate analyses of the relationship between baseline predictors of SOC at 12-month follow-up, controlling for baseline SOC scores or sociodemographic or personal factors, revealed that none of these variables independently predicted SOC scores at follow-up. Conclusion: The total SOC score and its subdimensions increased significantly at follow-up. SOC may be a useful outcome measure for lifestyle interventions in people with morbid obesity and possibly other health care problems. Subdimension scores may give an indication of what is poorly developed and needs strengthening. This might guide choices for targeted cognitive and psychosocial interventions. Further studies are needed to explore this issue with larger samples. Keywords: obesity, health promotion, health behavior, self-efficacy, self-estee

Differences and similarities in the trajectories of self-esteem and positive and negative affect in persons with chronic illness: an explorative longitudinal study

Tore Bonsaksen,1 Anners Lerdal,2,3 Milada Cvancarova Småstuen,4 May Solveig Fagermoen3 1Department of Occupational Therapy, Prosthetics and Orthotics, Faculty of Health Sciences, Oslo and Akershus University College of Applied Sciences, Oslo, Norway; 2Research Department, Lovisenberg Diakonale Hospital, Oslo, Norway; 3Department of Nursing Science, Institute of Health and Society, Faculty of Medicine, University of Oslo, Oslo, Norway; 4Department of Nursing and Health Promotion, Faculty of Health Sciences, Oslo and Akershus University College of Applied Sciences, Oslo, Norway Background: Chronic illness is a risk factor for low self-esteem, and the research literature needs to include more studies of self-esteem and its development in chronic illness groups using longitudinal and comparative designs. The aim of this study was to explore the trajectories of self-esteem and of positive and negative affect in persons with morbid obesity and in persons with chronic obstructive pulmonary disease (COPD).Methods: Patient education course attendants in Norway having morbid obesity (n=139) or COPD (n=97) participated in the study. Data concerning self-esteem, positive and negative affect, and sociodemographic background were collected at the start and at the end of the patient education, with subsequent follow-ups at 3, 6, and 12 months. Data were analyzed using linear mixed models for repeated measures.Results: Taking all measurements into account, our data revealed a statistically significant increase in self-esteem for participants with morbid obesity but not for those with COPD. There were no significant differences in levels of negative and positive affect between the two groups, and the time-trajectories were also similar. However, participants in both groups achieved lower levels of negative affect for all the successive measurement points.Conclusion: An increase in self-esteem during the first year after the patient education course was observed for persons with morbid obesity, but not for persons with COPD. Initial higher levels of self-esteem in the participants with COPD may indicate that they are less troubled with low self-esteem than people with morbid obesity are. The pattern of reduced negative affect for both groups during follow-up is promising. Keywords: morbid obesity, COPD, longitudinal study, self-esteem, positive and negative affec

A 1-year follow-up study exploring the associations between perception of illness and health-related quality of life in persons with chronic obstructive pulmonary disease

Tore Bonsaksen,1 Stacey Haukeland-Parker,2 Anners Lerdal,3,4 May Solveig Fagermoen4,5 1Department of Occupational Therapy, Prosthetics and Orthotics, Faculty of Health Sciences, Oslo and Akershus University College of Applied Sciences, Oslo, Norway; 2Department of Physiotherapy, Østfold Hospital Trust, Fredrikstad, Norway; 3Research Department, Lovisenberg Diakonale Hospital, Oslo, Norway; 4Department of Nursing Science, Institute of Health and Society, University of Oslo, Oslo, Norway; 5Department of Gastroenterology, Division of Medicine, Oslo University Hospital, Oslo, Norway Abstract: Chronic obstructive pulmonary disease (COPD) is a progressive respiratory disease with an increasing prevalence worldwide. Its potential consequences, including reduced function and reduced social participation, are likely to be associated with decreased health-related quality of life (HRQoL). However, illness perceptions and self-efficacy beliefs may also play a part in determining HRQoL in persons with COPD. The aim of this study was to explore the relationships between illness perceptions, self-efficacy, and HRQoL in a sample of persons with COPD in a longitudinal perspective. The context of the study was a patient education course from which the participants were recruited. Data concerning sociodemographic variables, social support, physical activity, illness perceptions, general self-efficacy, and HRQoL were collected before the course started and 1 year after completion. Linear regression was used in the analyses. The results showed that less consequences and less symptoms (identity) were associated with higher physical HRQoL (PCS) at baseline and at 1-year follow-up. Less emotional response was similarly associated with higher mental HRQoL (MCS) at both time points. Lower self-efficacy showed a borderline significant association with higher PCS at baseline, but was unrelated to MCS at both time points. Self-efficacy showed no influence on the associations between illness perceptions and HRQoL. In conclusion, the study showed that specific illness perceptions had a stable ability to predict HRQoL in persons with COPD, whereas self-efficacy did not. The associations between illness perceptions and HRQoL were not mediated by self-efficacy. Keywords: illness perceptions, self-efficacy, longitudinal study, patient educatio

Being “on the alert” and “a forced volunteer”: a qualitative study of the invisible care provided by the next of kin of patients with chronic heart failure

Anita Strøm,1 Kirsti Lauvli Andersen,2 Kari Korneliussen,3 May Solveig Fagermoen4 1Department of Masters and Continuing Education, Lovisenberg Diaconal University College, Oslo, Norway; 2Faculty of Health and Social Work Studies, Østfold University College, Halden, Norway; 3Heart Failure Clinic, Vestfold Hospital Trust, Tønsberg, Norway; 4Institute of Health and Society, University of Oslo, Oslo, Norway Background: Relatives’ support is an important factor in how well people with chronic heart failure (CHF) manage their illness and everyday life. Deepening professionals' understanding of the content of relatives’ invisible care activities, often characterized as care burden, is necessary to strengthen support services. Objective: To explore the next of kin’s experiences of invisible care and the inherent responsibilities in caring for a relative with CHF. Design, setting, and methods: Relatives were recruited from CHF outpatient clinics and home care services. Seventeen women and two men were interviewed, age range 45–83 years; 12 were partners, and seven were daughters. The qualitative interviews were taped and transcribed and thematic cross-case analyses were performed. Results: Two main themes were revealed. The first, “being on the alert”, refers to a perceived need, real or assumed, to be aware day and night, whether present with the patient or not, that occupies the mind, emotions, and body. The second theme, “being a forced volunteer”, refers to two different dimensions: relatives'’ own perceptions of responsibility with regard to the patient's needs; and voiced or silent expectations from the patient, family members, and health personnel that the relative will help the patient. Both findings appeared to have positive and negative impacts on the relationship with the patient. Conclusion: The identified themes reflect how challenging being a next of kin of CHF patients can be. The results may deepen professionals’ understanding of the relatives’ invisible care burden and the importance of their subjective task-related feelings. More studies on invisible care and the attendant responsibilities are needed and also on relatives’ inherent resources. Keywords: informal caregivers, task-related feelings, social support, care burden&nbsp

The relationships of self-efficacy, physical activity, and paid work to health-related quality of life among patients with chronic obstructive pulmonary disease (COPD)

Randi Andenæs,1 Signe Berit Bentsen,2 Kari Hvinden,3,4 May Solveig Fagermoen,5,6 Anners Lerdal6,71Department of Nursing, Faculty of Health Science, Oslo and Akershus University College of Applied Sciences, Oslo, Norway; 2Department of Health Studies, Faculty of Social Sciences, University of Stavanger, Stavanger, Norway; 3LHL Helse AS, Glittreklinikken, Hakadal, Norway; 4Norwegian Advisory Unit for Learning and Mastery in Health, Oslo University Hospital, Oslo, Norway; 5Department of Gastroenterology, Oslo University Hospital, Oslo, Norway; 6Department of Nursing Science, Institute of Health and Society, Faculty of Medicine, University of Oslo, Oslo, Norway; 7Department of Research, Lovisenberg Diakonale Hospital, Oslo, NorwayPurpose: Although chronic obstructive pulmonary disease (COPD) primarily affects the lungs, it is regarded as a systemic disorder associated with comorbidity and physical deterioration, which often results in reduced levels of health-related quality of life (HRQoL). Self-efficacy is an important concept in self-management, which is vital for improving HRQoL in patients with COPD. The purpose of this study was to examine how general self-efficacy, leisure time physical activity, and sociodemographic variables such as employment status are related to the physical and mental health components of HRQoL in patients with COPD.Patients and methods: In this cross-sectional study, 97 COPD patients (54.6% male, mean age 64.6 years, standard deviation [SD] 9.5) beginning a pulmonary rehabilitation program completed three self-report questionnaires: the short form (SF)-12v2 Health Survey as a measure of HRQoL; the General Self-Efficacy Scale; and a standardized instrument measuring regular leisure time physical activity.Results: The physical health component median score was 31.3 (interquartile range [IQR] 16.3) and the mental health component median score was 45.9 (IQR 21.5). Two sets of linear regression analyses were performed, one predicting physical health and the other predicting mental health. The first analysis showed that better physical health was directly related to being in paid work (P-value <0.001), but was not significantly related to age, sex, marital status, education, work status, physical activity, or self-efficacy. In the second analysis, better mental health was directly related to living with a partner, being physically active, and having higher self-efficacy (P-value <0.001).Conclusion: The findings suggest that general self-efficacy has differential relationships to the two dimensions of HRQoL. Our results indicate that general self-efficacy, physical activity, and paid work might be important factors for improving HRQoL of persons with COPD, and should be taken into consideration in pulmonary rehabilitation.Keywords: chronic disease, employment, lung, rehabilitation, self-car