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This is the peer reviewed version of the following article: Gjengedal, E., Sviland, R., Moi, A. L., Ellingsen, S., Flinterud, S. I., Sekse, R. J. T., . . . Råheim, M. (2019). Patients’ quest for recognition and continuity in health care: time for a new research agenda? Scandinavian Journal of Caring Sciences, 33(4), 978-985, which has been published in final form at https://onlinelibrary.wiley.com/doi/full/10.1111/scs.12696. This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Use of Self-Archived Versions. User involvement is important in democratization of health care and is assumed to contribute to better and more relevant research. Despite increased requirements for user involvement in research, more studies are still needed. This study aimed at exploring what research agenda people with varied health problems consider as important, based on their own experience. The study had a phenomenological approach with a qualitative design. The sample consisted of 23 informants; nine had been critically ill and 14 were suffering from chronic muscle pain. Data were collected in five focus group interviews and one individual interview. A phenomenological approach was used in analyzing the data. Written consent was obtained from all the participants, and ethical considerations were taken throughout the entire research process. Despite various experiences among the participants, a quest to be taken seriously over time by healthcare professionals emerged as a strong meaning structure in both groups. Based on these experiences, continuity across lifetime changes turned out to be an important research topic for future research. User involvement should be appreciated in all parts of the research process. A crucial prerequisite is that the users get the opportunity to bring their own experiences into the process.

This study explores the lived experience of hospitalisation from the perspective of people with a mental health disorder. This hermeneutic-phenomenological study, which forms part of a larger qualitative serial inquiry, uses a participatory research design, with analysis inspired by interpretative phenomenological analysis. Fourteen participants were interviewed twice: first during hospitalisation and then again 3 months following hospital discharge. Findings are reported from the entire interview data set. Our findings suggest that mental health hospitalisation is a contradictory experience for patients. On one hand, our study participants experienced the hospital as a place where it is alright to be vulnerable, while on the other hand participants experienced hospitalisation as a burden of everyday stigma and signs of depersonalisation. We conclude that it is important to recognise that patients in need of inpatient treatment for mental illnesses are, in fact, people first and foremost. More reflective practice can be developed by shifting the focus to recovery-oriented practices to and open dialogue-based approaches.

Rationale The increasing number of frail home-dwelling older people has sharpened the focus on discovering and implementing suitable treatment and care in clinical practice, aiming to prevent loss of physical functioning and preserve their autonomy and well-being. People's embodied experiences may yield rich descriptions to help to understand frailty. Thoroughly understanding older people's individual perceptions is especially relevant because the numbers of home-dwelling older people are increasing, and people tend to develop more health problems and become frailer as they age. Their perspectives are important to develop knowledge and high-quality care. Aim To explore the lived experiences of frail home-dwelling older people. Methods We conducted a phenomenological study to obtain in-depth descriptions of the phenomenon. We interviewed 10 home-dwelling older adults (seven women and three men, 72–90 years old) in depth about their lived experience of frailty. We analysed the data using a hermeneutic phenomenological approach described by van Manen. Findings The lived experience of frailty is described in one essential theme: frailty as being in the borderland of the body, including three interrelated subthemes: (1) the body shuts down; (2) living on the edge; and (3) not giving up. Conclusions Our study gives insight into lived experiences with frailty among home-dwelling older people related to their own body. Older people's experience of meaningful activities strengthened their feeling of being themselves, despite their frail and deteriorating body. Healthcare providers must consider the strategies of frail older people to consider both their vulnerabilities and self-perceived strengths. The resources and deficits of frail older people present in the state of being frail need to be recognised. publishedVersion

Few studies address the many challenges that are faced by staff and patients in the inpatient mental health context. In particular, there is a lack of research that explores first-hand patient experiences in order to establish what treatment practices best assist patient recovery and what are the barriers to these practices. This qualitative study, which utilises a user-involved research framework, collaborates with a co-researcher patient group throughout the study. Fourteen patients, all of whom had been in inpatient treatment for at least three weeks, were recruited to the study. Study participants were interviewed in-depth in the period September 2016 to March 2017. Data underwent a thematic analysis that was inspired by interpretative phenomenological analysis. A core theme of the findings was the importance of being recognised as a whole person, and the patient–professional relationship was regarded as a fundamental factor in fostering recovery, with two underlying themes: (i) a need to have one‘s self-identity recognised and supported, and (ii) an experience of ambivalence between needing closeness and distance. This study suggests ways nurses can give priority to interpersonal interactions and relationships with hospitalised patients over task-oriented duties, highlighting the need for nurses to balance patient competing needs for both closeness and distance. publishedVersion

Fewer men than women with severe obesity undergo bariatric surgery for weight loss, and knowledge about men's situation after surgery, beyond medical status, is lacking. Our aim was to explore men's experiences with life after bariatric surgery from a long-term perspective. We conducted in-depth interviews with 13 men, aged 28–60 years, between 5 and 7 years after surgery. The analysis was inspired by Giorgi's phenomenological method. We found that agency was pivotal for how the men understood themselves and their lives after surgery. Weight loss meant regaining opportunities for living and acting in unrestricted and independent daily lives, yet surgery remained a radical treatment with complex consequences. Turning to surgery had involved conceptualizing their own body size as illness, which the men had resisted doing for years. After surgery, the rapid and major weight loss and the feelings of being exhausted, weak, and helpless were intertwined. The profound intensity of the weight loss process took the men by surprise. Embodying weight loss and change involved an inevitable renegotiating of experiences connected to the large body. Having bariatric surgery was a long-term process that seemed unfinished 5 years after surgery. Restrictions and insecurity connected to health and illness persist, despite successful weight loss and embodied change. Bariatric surgery initiated a complex and long-lasting life-changing process, involving both increased capacity for agency and illness-like experiences.

Purpose: Losing weight and keeping it off for the long term is difficult. Weight regain is common. Experiences of successful non-surgical weight loss after severe obesity are largely unexplored. We know little about long-term weight loss processes, and how health care services can be of help to those living them. Methods: Drawing on in-depth interviews of 8 women and 2 men, the aim of this phenomenological study is to describe the experiences of adults who have been severely obese, who have lost weight and maintained weight loss for the long term (>5 years). Results: Findings show that after severe obesity, sustained weight loss has no endpoint, yet is always easy to end. Keeping weight off means committing to oneself, continuing profound changes and cultivating sensitivity towards oneself and others. A phenomenological understanding of sustained weight loss can inform professionals who deal with health issues and challenges occurring in the life of people leaving severe obesity. publishedVersion

To explore children's experiences with testing, acquiring and using assistive devices.Nine children (six boys, three girls, 9-12 years old, with different physical disability and activity experience, participated in semistructured interviews. The interviews were audio-taped, transcribed and analysed using Systematic text condensation.Assistive devices were reported to contribute to cope activities that the children otherwise would not have participated in. Several subjects listed the need for a shielded environment when adapting to new equipment. The children highlighted "independence in activities" and "having the opportunity to participate in activities with family and friends" as important for frequent use. Need for assistance and lack of localizations to perform the activities were listed as reasons for less frequent use.This study reveals that it is useful to map each child's opportunities for independency, appropriate locations for performing the activity and participation with friends, when considering obtaining assistive devices. Implications for Rehabilitation The use of assistive devices gives many children with physical disabilities the opportunity to participate in physical activity. Improving availability to assistive devices for physical activity should be a priority to help facilitate participation. Having opportunities to develop perceptions of competence may be essential for a child's long term participation in physical activity.

Bariatric surgery provides sustainable weight loss and increased quality of life for most, but not all patients. To increase the knowledge of this complex patient group and their needs during follow-up, we aimed to describe the essential meaning of bariatric surgery patients’ long-term experiences by using a phenomenological lifeworld approach. Eight patients were interviewed between 5 and 7 years after bariatric surgery. Life after bariatric surgery was described as living with tension, ambivalence, and reinforced attention toward one’s own body. The tension was related to embodied change and altered relations to the social world. The patients express an ongoing demand for control of health-related habits and practices, and to not lose control over the body again. Surgical weight loss and improved physical function do not necessarily mean changed health-related habits and practices in the long term. Experiencing weight regain is connected with emotional stress, shame, and self-contempt.