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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.

Based in narrative phenomenology, this article describes an example of how lived time, self and bodily engagement with the social world intertwine, and how our sense of self develops. We explore this through the life story of a woman who lost weight through surgery in the 1970 s and has fought against her own body, food and eating ever since. Our narrative analysis of interviews, reflective notes and email correspondence disentangled two storylines illuminating paradoxes within this long-term weight loss process. Thea’s Medical Weight Narrative: From Severely Obese Child to Healthy Adult is her story in context of medicine and obesity treatment and expresses success and control. Thea’s Story: The Narrative of Fighting Weight is the experiential story, including concrete examples and quotes, highlighting bodily struggles and the inescapable ambiguity of being and having one’s body. The two storylines coexist and illuminate paradoxes within the weight loss surgery narrative, connected to meaningful life events and experiences, eating practices and relationships with important others. Surgery was experienced as lifesaving, yet the surgical transformation did not suffice, because it did not influence appetite or, desire for food in the long run. In the medical narrative of transforming the body by repair, a problematic relationship with food did not fit into the plot.

Purpose: In this study, we explore the lived experiences of chronic illness in four groups of patients; children with asthma, adolescents with diabetes, young adults with depression, and adult patients with chronic, obstructive pulmonary disease (COPD). Persons living with chronic illness are often designated as vulnerable. This study builds on the assumption that being vulnerable belongs to being human, and that vulnerability also might entail strength and possibilities for growth. Methods: A narrative analysis was undertaken to illuminate how experiences of vulnerability were narrated across the four patient groups, presenting four individual stories, one from each of the patient groups. Results/conclusion: The stories illuminate how living with a chronic illness implies differing capabilities and capacities dependent on the specific condition. At the same time the stories point to how various abilities and challenges in living with chronic illness can be alleviated or seen as resources. Considered together, the stories underscore how ´finding ways to carry on´ in chronic illness requires interpretational work. By calling upon resources among significant others, in the surroundings and in oneself, the narrator can find ways of interpreting living with chronic illness that might open towards a hopeful future. Keywords: chronic illness, vulnerability, narrative analysis, life world, stories, phenomenology

In this study we explored the experiences of Norwegian women living with vestibulodynia, a chronic disease affecting young women all over the world. Using a phenomenological approach we conducted in-depth interviews with eight women who had struggled with vestibulodynia for several years. Our findings reveal that their efforts to fulfill their partners' sexual desires as well as their own represented an encompassing ongoing process. In addition, we highlight the interrelationship between the intensity of vulvar pain experienced by individual women and decisions women make about prioritizing their own sexual needs.

Background: For mild-to-moderate stroke survivors, early supported discharge from hospital, followed by home rehabilitation is preferred over conventional care. How this mode of service contributes to recovery from stroke survivors’ perspective needs further investigation. Aim: The aim of this study was to explore mild-tomoderate stroke survivors’ experiences with home rehabilitation after early supported discharge from hospital. Methods: A qualitative interpretive interview design was used in the context of a randomised controlled trial. A purposive sample of eight participants (45–80 years) was followed by an ambulant team, and a specific healthcare team provided home rehabilitation. Data were analysed using interpretive description, systematic text condensation and coping theory. Findings: A crucial determinant for the participants’ hopes for a life worth living was the mutual confidence expressed in encounters with healthcare professionals and the participants’ ability to make sense of their nowaltered body. The professional caretakers’ communication qualities and their ability to attend to individual needs were important. Help in processing the emotional reactions caused by a changed body and in socialising was requested by participants. Professional caretakers providing home rehabilitation should strive for a more flexibleand individually tailored service and should seek increased cooperation among stakeholders. Conclusion: The focus on therapeutic communicative qualities, bodily changes, emotional processes, social concerns and long-term follow-up should be increased in order to achieve a more beneficial experience for stroke survivors

In this article we explore shyness and openness related to sexuality and intimacy in long-term female survivors of gynecological cancer, and how these women experienced dialogue with health personnel on these issues. Further analysis on two core themes, based on empirical data presented elsewhere, inspired continued theoretical and philosophical thinking drawing on Løgstrup's expressions of life and unified opposites. The findings show that gynecological cancer survivors and health personnel share common ground as human beings because shyness and openness are basic human phenomena. Health personnel's own movement between these phenomena may represent a resource because it can help women to handle sexual and intimacy challenges following gynecological cancer.

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

Purpose: The diagnosis of diabetes in pre-school children poses a number of unique challenges related to everyday responsibility, and the continuous need for supervision and caregiving. This may affect both the child’s and the parents’ perceived burden caused by the condition. The aim of the study was to explore the lived experience of being mothers and fathers of a child with type 1 diabetes aged 1 to 7 years. Methods: The study is rooted in an interpretive phenomenological methodology as described by van Manen. In-depth interviews were carried out to collect data. Findings. We were able to identify one essential theme across the interviews: Striving to live an ordinary family life, yet feeling and living very differently—with interrelated sub-themes: A life-changing situation, Always on guard, and Struggling to let go. Conclusion: Parents described a profoundly changed situation, and they were indeed striving to live like a “normal” family. They were in need of support from health care professionals at the outpatient clinic, not only support and supervision in regard to practical tasks, but also concerning handling a changed life situation and emotional reactions, especially in the first year after diagnosis. publishedVersion

This narrative case study, created from several qualitative sources, portrays a young woman's life experiences and an eight yearlong therapy process with Norwegian Psychomotor Physiotherapy (NPMP). It is analyzed retrospectively from an analytical angle, where NPMP theory is expanded with Logstrup's phenomenology of sensation and Ricoeur's narrative philosophy. Understanding Rita's narrative through this window displayed some foundational phenomena in a singular way, illuminating embodied experiences in inter-subjective relationships in movement, sensation and time entwined. It illustrates how traumatic life experiences may cause pain, suffering and ruptured narratives with fragmented physical and sensuous reactions, chaos and loss of temporal coherence with consequences for a person's sense of identity. Rita's narrative also illuminates how intersubjective interaction has healing potentials when there is time and space for trust to emerge and to support new bodily-based experiences. Embodied sensuous experiences in present time may help clarify past and present and support chronology in narration and the sense of identity. With this exemplary case study, we argue that Logstrup's and Ricoeur's thinking may add valuable perspectives to understanding suffering and healing processes in the field of embodied therapies like NPMP.

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.

Patients undergoing weight-loss surgery are increasingly encouraged to change their lifestyles. Dietary interventions combined with physical exercise interventions are regarded as the most effective way to ensure that they do not regain the weight they have lost. Little research however, has been done on how patients who have had the surgery actually experience the process of changing their exercise habits. To help fill this gap, we investigated the experiences of women participating in a group-based rehabilitation program designed to radically transform these habits. Based on participant observation, and our interviews with 11 women in the program, we were able to identify a variety of potential benefits and negative consequences in group training, organized according to the interval principle. We also found that the experiences of these women were closely related to their views on how significantly the surgery had changed their lifestyle. Based on the experiences related by these women, we believe that the "effectiveness" of standardized group-based interventions for patients undergoing weight-loss surgery should be reconsidered. Some of the women in our study viewed the group-based standardized training intervention positively; others resisted it. Our research leads us to conclude that this type of program could be more successful if the forms of activity and their intensity were customized to meet the needs and desires of each participant.

The aim of this article is to explore bodily changes following weight loss surgery. Our empirical material is based on individual interviews with 22 Norwegian women. To further analyze their experiences, we build primarily on the phenomenologist Drew Leder`s distinction between bodily dis-appearance and dys-appearance. Additionally, our analysis is inspired by Simone de Beauvoir, Merleau-Ponty and Julia Kristeva. Although these scholars have not directed their attention to obesity operations, they occupy a prime framework for shedding light on different dimensions of bodily change. In doing so, we were able to identify two main themes: The felt "inner" body versus the visible "surface" body and the "old" body versus the "new" body. In different, though interconnected ways, these main themes encompass tensions between changes the women experienced as contributing to a more "normal" and active life, feeling more accepted, and changes that generated ambivalence. In particular, their skin became increasingly problematic because it did not "shrink" like the rest of the body. On the contrary, it became looser and looser. Moreover, badsmelling folds of skin that wobbled, sweated and chafed at the smallest movement, aprons of fat hanging in front of their stomachs, batwing arms, thick flabby thighs and sagging breasts were described as a huge contrast to the positive response they received to their changed body shape when they were out and about with their clothes on. At the same time, they expressed ambivalence with regards to removing the excess skin by means of plastic surgery. Through their own and other women`s experiences they learned removing the excess skin by means of surgery could be a double-edged sword. By illuminating the experiences of the ones undergoing such changes our article offers new insight in a scholarly debate predominated by medical research documenting the positive outcomes of weight loss surgery.

This qualitative study explored the experiences of Norwegian men after being identified as BRCA 1/2 mutation-positive. Only limited knowledge is available on this topic; therefore, the aim of this study was to gain a deeper insight from the men’s own perspectives. Data were collected from in-depth interviews with 15 men and seven of their partners. The participants described fear of cancer development, and two main narrative patterns were identified: fear for their own health, including fear of developing cancer, and negative feelings about responsibility for others’ health. The men expressed fear of developing cancer themselves and described a need for genetic risk information. They were also deeply concerned about how the mutation might affect their children and other relatives. There is a need for guidelines concerning genetic risk information and follow-up programs for male BRCA 1/2 mutation carriers. This study adds valuable contextual insights into their experiences of living with fear of cancer. publishedVersion

In families with hereditary breast and ovarian cancer, there is limited knowledge about the reactions of BRCA1/2 mutation positive males. In the present qualitative study, fifteen BRCA1/2 mutation positive men in Norway participated in two successive, in-depth interviews. Seven female partners participated in the second interview. The men reported strong emotional reactions to their positive test results, and they expressed a desire to keep the genetic information private. They considered discussing their test results or health related information with other males as difficult, and they perceived females as their sources of social and emotional support. Interestingly, the second interview revealed important information not communicated during the first interview. The findings of this study contribute to the discussion of whether men who test positive for a BRCA1/2 mutation should receive tailored genetic counseling sessions. Health care providers should be aware of psychological vulnerability in these men, likely stemming from fewer emotional supports in their social networks.

This study has explored the experience of body awareness in patients with chronic pain as well as possible changes in this phenomenon as a consequence of Norwegian psychomotor physiotherapy (NPMP), were explored in the present study. Four focus group interviews were performed. Two groups consisted of patients on waiting lists for NPMP, whereas the other two were patients receiving NPMP. The interview material was analysed according to an ad hoc meaning generation. The interviews brought out three main themes of body awareness: being aware of one's own body; associations about one's own body; and feelings for one's own body. The differences and similarities in body awareness described by those receiving treatment and those on waiting lists are presented and discussed, as well as differences between participants within the groups. The patients' experiences ranged from a reduction of symptoms and coping quite well with chronic pain, to a feeling of being totally stuck in pain, followed by either a new body awareness or being preoccupied by pain. The participants receiving long-term NPMP--with one exception--experienced new body awareness, described as essential to increasing their ability to cope with pain.

Purpose. The aim of this study was to explore the issue of perceived barriers for returning to work, based on the experiences and beliefs in a group of disability pensioners with back pain.Method. Focus groups were used to interview 12 women and five men, aged 38 – 56, who participated in a larger project aiming to help disability pensioners back to work.Results. The barriers appearing were related to earlier negative experiences, poor self-judgement of work ability and low self-esteem, lack of support from social security authorities and unsuitable economic arrangements. The pensioners also suggested alternative solutions for making a possible return to work.Conclusions. Our study provides insight into the perceived barriers of returning to work and might be useful in future efforts aiming to help disability pensioners back to work.

The hermeneutic-phenomenological study presented in this article is grounded in a lifeworld perspective. The authors aimed at rich descriptions of women's lived experience of chronic pain and fibromyalgia. They conducted individual life-form interviews with 12 women with fibromyalgia. On the basis of the women's stories, three typologies were developed: at the will of the treacherous body—powerlessness; struggling to escape the treacherous body— ambivalence; and caring for the treacherous body—coping. The lived experience described in the typologies were further interpreted according to the existentials: lived body, lived time and space, and lived relations. The women's stories point to a world experienced as fundamentally changed by a body in chronic pain, describing a struggle in which they feel that their existence is at stake.

Background Porphyria cutanea tarda (PCT) is characterized by fragile skin with blistering on sun-exposed areas. Symptoms typically develop in late adulthood and can be triggered by iron overload, alcohol intake, oestrogens and various liver diseases. Treatment consists of phlebotomy to reduce iron, or increasing urinary porphyrin excretion by administering chlorochin. To optimize patient care, health personnel need to understand the subjective experiences of PCT. Objectives To explore the experiences of persons with PCT with regard to symptoms, treatment, follow-up and prevention of the disease. Methods Interpretive description was used as a qualitative approach. Twenty-one participants attended three focus groups. All participants had experienced PCT symptoms during the last 5 years. Results Participants' experiences varied from trivializing symptoms and fragile skin to what was described as a desperate situation, with huge blisters, skin falling off and feeling as if one was in a ‘horror movie’. For some, itching was very troublesome, preventing sleep and delaying skin healing. In managing PCT a shift in focus from skin to blood was described. PCT was perceived as a chronic and systemic disease causing a range of health problems. Strategies for preventing symptoms ranged from doing nothing to frequent controls and check-ups. Conclusions Participants had a systemic perception of PCT, and a tendency to attribute a range of health problems to the condition. This study adds insight into the experiences patients have with PCT. publishedVersion

This study elaborates on narrative resources emerging in the treatment of longlasting musculoskeletal and psychosomatic disorders in Norwegian psychomotor physiotherapy (NPMP). Patients’ experiences produced in focus group interviews were analyzed from a narrative perspective, combining common themes across groups with in depth analysis of selected particular stories. NPMP theory expanded by Logstrup’s and Ricoeur’s philosophy, and Mattingly’s and Frank’s narrative approach provided the theoretical perspective. Patients had discovered meaning imbued in muscular tension. Control shifted from inhibiting discipline and cognitive strategies, towards more contingence with gravity and sensation, and increased freedom to be what and who they were. Trust, time, open speech, and being respectfully listened to were described as therapeutic pre-conditions. The body was experienced as the source of their voice as their own. As tension patterns transformed, novel experience in sensation appeared to feed narrative imagination, reshaping past plots, embodied identity and future prospects. NPMP was disclosed as a treatment integrating detection, battle and repair as narrative subplots, but the core narrative was the journey of transformation. Novel embodied narrative resources nourished the quest for a life and identity in tune with the body as one’s own.

This article critically explores the tension between perceptions of weight loss surgery as a last resort and as a tool. This tension stems from patients' doubt and insecurity whether expectations for a healthy life will come through. Thus, even after surgery, traditional weight loss methods, including diets and exercise, are considered paramount. Drawing on a series of interviews with Norwegian women, we argue that the commercialization of weight loss surgeries as well as the moral stigmas attached to such operations serve to perpetuate this tension. More specifically, the women were advised to leave their old habits behind, and embrace a healthier and more active lifestyle. In such a climate, we argue that undergoing surgery without subsequently embodying dietary and exercise norms is hardly an option. On the contrary, these become a moral obligation that modern women need to relate to--and perhaps negotiate--in order to repudiate stigmas attached to weight loss surgeries as a quick fix for those incapable of losing weight in the "proper" manner.

This study explored the experiences of parents of children with cerebral palsy undergoing surgery as they describe them from a lived experience perspective. When children undergo surgical procedures, they have to stay at hospital for a long time, which represents a great challenge for the children as well as their parents. We collected data by using open-ended interviews with 12 parents of 9 children and analyzed these data in accordance with Max van Manen’s methodological themes. Based on the parents’ stories, the essential theme is: At the edge of vulnerability*being parents at hospital to a child with CP undergoing surgery, which consisted of three subthemes: establishing trust, awareness of a child who cannot speak, and sensing bodily reactions. Parents experienced demanding challenges as they entered the hospital, in a situation that meant both familiarity and unfamiliarity. Judgments about how to care for the child relied on what they normally did. Sitting bedside for hours and days, thoughts about the legitimacy of letting their child go through the suffering surgery were tormenting the parents. They felt vulnerable and very much dependent on health care workers’ competence and at the same time doubting them in seeing and taking care of their child’s specific needs. It was experienced as an ambivalent situation, and even more so for the parents of a child without speech. The findings indicate that establishing trust implies being met at an existential level and a deeply felt need for health care workers that are really engaged in taking care of their child and their parents. Key words: Parenting, children, cerebral palsy, lived experience, surgery, hospitalization, hermeneutic phenomenology (Published: 6 February 2013) Citation: Int J Qualitative Stud Health Well-being 2013, 8 : 20007 - http://dx.doi.org/10.3402/qhw.v8i0.20007

The aim of this theoretical article is to elaborate on the underpinning of Norwegian psychomotor physiotherapy (NPMP). With a narrative and hermeneutic point of departure, we explore the unfolding of a 10-year-long treatment by analysing a particular narrative from this treatment context in relation to some foundational perspectives on movement, sensation and time. A woman in her late thirties suffering from muscular tensions and pain, depression, anxiety and anorexia, came for NPMP. The investigation of her treatment experience is based on the journal written by her physiotherapist and first author of this article. We suggest that new experiences in movement and sensation as well as changes in movement patterns can contribute to retuning in sensation and restructuring of narrative time. Feeding the fictional space and narrative fantasy with new experiences in movement and sensation can help counteracting delusional ideas and assist changes, supporting embodied narrative identity. Ingrid's experience is discussed in the light of Trygve Braatoy's understanding of muscular functions, Knud E Logstrup's phenomenology of sensation and Paul Ricouer's narrative time.

The aim of this qualitative study is to highlight how women experienced living through gynaecological cancer.The increasing number of long-term survivors after cancer has created a greater need for knowledge about how patients live through the illness.A qualitative design, with a phenomenological-hermeneutical perspective, provided the framework for the study.Thirty-two unstructured in-depth interviews with 16 women were conducted. Each woman was interviewed twice: one year apart, and five and six years after treatment, respectively. Stepwise meaning condensation was used to analyse the data.Based on the women's first-hand stories about their experiences with cancer, we identified three typologies, describing different ways in which the women negotiated encountering and living through cancer. These typologies are the emotion- and relationship-oriented women, the activity-oriented women and the self-controlled women.There are substantial differences regarding how women process the experience of cancer. The findings add valuable knowledge about the impact cancer can have on women's lives and can be of help for nurses who support patients during treatment and follow-up.Understanding different ways women can experience living through cancer is fundamental for the development and improvement of cancer care. Allowing time for the women to talk with nurses about their cancer experiences could be essential during treatment and follow-up. Nurses can support the women by listening to their stories, accepting their emotions and informing them in detail. The findings in this study imply that strengthening nurses' listening and conversational competence can be of importance for supporting patients after cancer. By building on the women's own stories, it might be possible to create a follow-up process that is individually tailored for each cancer patient.

Little is known about men seeking genetic counseling for hereditary breast and ovarian cancer (HBOC). We review the sparse literature on men attending such genetic consultations. Two main themes are identified: the women’s influence on the genetic counseling process, and the psychological impact on men. The women in the HBOC families have an influence on the men’s decision to request genetic testing, and they take the leading role in communicating genetic information. With respect to psychological impact, the men suffer from grief and fear of developing cancer, and they seem to use avoidance as a coping strategy. Carrier males experience feelings of guilt because they might have passed on a mutation to their children. Non-carriers experience test-related stress if their siblings tested positive. Mutation status may have an impact on reproductive issues. These findings are discussed in light of gender issues and literature concerning men’s health behavior. Further studies are needed to provide optimal care for men seeking genetic counseling for hereditary breast and ovarian cancer.

Manual therapists (MTs) are specialized in examining and treating patients with low back pain (LBP). The aim of the study was to investigate if patients’ consultations with Norwegian MTs are in accordance with clinical guidelines for the management of acute LBP. Semi-structured interviews were conducted based on observation of the first consultation. Twenty-two MT students observed two consultations, and thereafter interviewed MTs (convenience sample) about clinical findings, information, advice and specific therapeutic procedures given. The interviews were tape-recorded, transcribed, and organized. Forty-two reports were derived from 34 MTs (12% of all in Norway). The MTs commonly informed the patients of main clinical findings. The intention to eliminate fear avoidance was specifically mentioned in 43% of the interviews. Advice of being active in daily life activities was given to 50% of the patients, and 43% were advised to avoid particular pain provoking movements. Working ability and sick leave was considered in only 20% of those employed. The most frequent treatment modalities recommended were home-exercises (69%) and a combination of joint mobilization and individually tailored exercises (48%). To some extent the MTs acted according to main points of clinical guidelines. However, functioning at the participation level was little emphasized in the consultations.