Caregiving for frail home-dwelling older people: A qualitative study of family caregivers' experiences.

BACKGROUND: The increasing frailty of home-dwelling older people can lead to rising expectations from their family caregivers due to various demographic developments and political guidelines. European data show that 60% of home-dwelling older people receive informal care. Frailty among older people is a state of vulnerability, increasing the risk of adverse health outcomes, declining daily activities and needing long-term care. AIM: To explore family caregivers' lived experiences with caring for frail, home-dwelling older people. METHODS: We conducted a phenomenological study to obtain in-depth descriptions of the phenomenon. We interviewed nine family caregivers, five men and four women between 52 and 90 years old, in-depth in their homes. We used a hermeneutical phenomenological approach described by van Manen and followed the COREQ checklist. RESULTS: The phenomenon's essential meaning is described as striving to adapt throughout the caring relationship. The interrelated themes describe different caring relationships, caring for a family member and letting go of the primary caring responsibility. CONCLUSIONS: Family caregivers describe care as meaningful yet demanding. In our study, the varying condition of frailty was an additional challenge in care. By addressing these challenges, healthcare providers can better support and help family caregivers to withstand their caring relationships. The Norwegian Centre for Research Data approved the study (Ref.61202).

Patient experiences of a 10-weeks weight-neutral treatment program for clinical binge eating disorder in a higher weight population.

BACKGROUND: Weight based stigma might drive the development of both higher weight and binge eating disorder (BED). To improve treatment and outcomes, a deeper understanding of how stigma and shame are correlated in clinical encounters is needed. The current study was designed to gain insight into how participating in a 10-weeks weight-neutral treatment program for patients with binge eating disorder and higher weight was experienced. METHODS: Semi-structured interviews were conducted with 10 patients who had completed the BED treatment. The intervention was group based, addressing stigma and shame, using models of attachment and affect regulation in the presentation of BED. Interviews were analyzed guided by van Manen's hermeneutic-phenomenological approach. RESULTS: A profound feeling of inferiority due to weight stigma and adverse childhood experiences appeared to have kept the participants stuck in a shame driven carousel  of dieting, weight loss, bingeing, and weight regain. Participants and health care professionals' mutual acknowledgement of driving elements of binge eating appeared to support participants feeling more equal. Feeling equal was described as facilitating increased awareness and tolerance of bodily sensations and emotions, and a deeper understanding and self-caring attitude towards themselves. Feeling less shame was described as important for self-disclosure in family relationships, leading to increased understanding and support from others. Simultaneously, unchanged stigmatizing surroundings were described to relate to challenges with eating patterns and weight after end of treatment. CONCLUSION: Our findings indicate that relational symmetry, by patients experienced as being met with recognition, compassionate acceptance, and mutual investigation of subjective experience, can contribute to reduction of weight stigma and shame, and the burdensome notion of inferiority experienced by the participants in everyday life, hence improving treatment outcomes. Trail registration The study was approved and registered by the Data Access Committee at Nord-Trøndelag Hospital Trust August 8th, 2019, registration number 2019_2335.

Ten patients were interviewed about their experiences with participation in a 10-weeks weight- neutral treatment program for people with binge eating disorder (BED) and higher weight. The treatment given was group based, addressing stigma and shame, using models of attachment and affect regulation in the presentation of BED. Participants described a notion of inferiority towards other people due to weight stigma that maintained their attempts of dieting and weight loss with subsequent bingeing and weight regain. Participants and health care professionals' mutual acknowledgement of driving elements of binge eating in treatment appeared to support participants feeling equal. Feeling less shame was described as important for self-disclosure, leading to increased understanding and support in relationships. Simultaneously, unchanged stigmatizing surroundings was described to relate to challenges with eating patterns and weight after end of treatment.

How people diagnosed with borderline personality disorder experience relationships to oneself and to others. A qualitative in-depth study.

BACKGROUND: The first-person experiences of people diagnosed with borderline personality disorder (BPD) is an important area of research. It can support clinical and ethical practice, and nuance and expand on insights offered by diagnostic and treatment-oriented research approaches. In this study, we aimed to develop knowledge about how persons who were recently diagnosed with BPD experience being in relationships with themselves and others. METHODS: We conducted in-depth life-world interviews with 12 women recently diagnosed with BPD. The interviews focused on their lived experiences of relationships to self and others. All participants gave their informed consents to participate. We analysed the data with a structured approach to reflexive thematic analysis, conducted as a team-based approach. RESULTS: We extracted an overarching theme, "Reaching for firm holdings", that is the most abstract interpretation of participants' experiences. The five subordinate themes ("Captive of emotions", "Keeping undeservedness at bay", "Distrusting oneself", "Dependence as stability" and "The uncertainty of reaching out") are specific constituents of the overarching theme, and provide detail and variations across individual accounts. CONCLUSIONS: The results suggest that the experience of relationship to self and others of people recently diagnosed with BPD entails feeling insecure, unsafe and frightened. We report five themes that describe ways participants seek to cope with this situation. The results indicate that their experiences encompass turning to others, or to objects, for feelings of safety. As such, the experience of relationship to self and others in the context of receiving a BPD diagnosis seemed to entail finding and evolving strategies to protect a vulnerable self. Self-harm, suicide attempts and addiction all seemed to be ways of handling and tolerating chaotic and frightful emotions. One major limitation of our study is that only people who identified as female were recruited to participate in the study.

The patient-practitioner interaction in post bariatric surgery consultations: an interpersonal process recall study.

PURPOSE: The patient-practitioner relationship is fundamental to rehabilitation practice and patients' health and wellbeing. Dissonance between patients who have had bariatric surgery and health care practitioners about what supportive care and good outcomes are can undermine care. To address the mechanisms of this process, we conducted an Interpersonal Process Recall study. MATERIALS AND METHODS: We interviewed patients (11), video recorded consultations (10), conducted video-assisted individual interviews with patients (10) and practitioners (11) and a dyadic data analysis. RESULTS: We identified relational states and shifts in the clinical encounter 2-3 years post-surgery, described in themes: a) Playing by the Book - Making it Easier for Each Other, b) Down the Blind Alley - Giving up on Each Other, and c) Opposite Poles - Towards and Away from Each Other. CONCLUSIONS: The post-surgery consultations facilitated responsibility for health and self-care but did not invite dialogues about the psychosocial burdens of living with obesity and undergoing bariatric surgery. Patients and practitioners tried to avoid creating conflict, which in turn seemed to foster distance, rather than human connection. This limits the encounter's benefit to both parties, leaving them frustrated and less willing to either meet again or take any gains into their future lives.IMPLICATIONS FOR REHABILITATIONIllness evokes feelings of stress and uncertainty and is experienced very differently from the perspective of patients and health care practitioners (HCPs), who encounter each other in a field fraught with tension.Bodily changes and difficult emotions related to food and eating are to be expected when undergoing bariatric surgery, and to explicitly "notice, name and validate" emotions can promote the patient's capacity to sustain self-care, lifestyle change, weight loss and health gains.Making interpersonal connection and interaction between patient and HCP the centre of bariatric aftercare can enhance engagement in and outcomes of the post-surgery clinical encounter.

Engaging with difficult topics and emotional experiences in psychotherapy: A study of helpful therapist acts.

OBJECTIVE: The purpose of this study was to explore moments during psychotherapy sessions in which clients experience that they have an opportunity to approach and engage with difficult topics and emotional experiences, with the aim of describing therapists' acts that support clients' in-session engagement. METHODS: Two treatment sessions of 11 participants were videotaped and immediately followed by an in-depth semi-structured interview, using the interpersonal process recall (IPR) interview method. A follow-up interview was conducted 3 months after the final IPR interview. Participants' accounts were analyzed using thematic analyses. RESULTS: Five themes of engagement-supportive acts resulted from our analyses: 1. inviting the client by showing acceptance; 2. recognizing the clients' hints and try-out signs; 3. providing information on the process and evaluating clients' expectations; 4. actively helping the clients to notice and stay with difficult experience and 5. showing sensitivity to the client's needs for micropauses. We discuss these themes as acts of recognition. CONCLUSION: Clients found it was engagement-supportive when therapists implicitly and explicitly recognized the challenges of being in psychotherapy. This recognition could be achieved through the engagement-supportive acts described in the five themes. Therapists should continually make space for and seek a balance between different engagement-supportive acts.

Carrying on life at home or moving to a nursing home: frail older people's experiences of at-homeness.

AIMS AND OBJECTIVES: The aim was to explore frail older people's lived experiences of managing life at home on the verge of moving to a nursing home. BACKGROUND: As people age, their reserve capacity decreases, increasingthe risk of morbidity and frailty.. The experience of frailty extends beyond declining health and physical well-being and encompasses various dimensions, including familiarity with both the place and the people around. DESIGN: A phenomenological study. METHODS: We interviewed ten frail people aged 72-90 years in-depth in their homes. We used phenomenological hermeneutical analysis inspired by van Manen and followed the COREQ checklist. RESULTS: We identified three main themes: (1) being home with cherished people and possessions, (2) giving the nursing home a go and (3) attuning to the natural rhythms. CONCLUSIONS: Our study gives insight into the lived experiences with frailty related to at-homeness. The experience of being lost in transition represents a uniquely significant experience for frail older people, foregrounding existential issues and carrying the potential of at-homeness. RELEVANCE TO PRACTICE: To unleash frail older people's potential for at-homeness, health professionals mustmeet the needs of frail older people individually. Going beyond signs and symptoms to reveal people's concrete everyday experiences is crucial to understanding frailty .

In the borderland of the body: How home-dwelling older people experience frailty.

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.

The hamster wheel: a case study on embodied narrative identity and overcoming severe obesity.

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.

Physical education classes - a double-edged sword: a qualitative study of Norwegian high-school students' experiences.

Aim: The aim of this study was to explore students' experiences of physical education (PE) and to gain insight into what contributes to engaging them in PE.Methods: A total of 316 second-year high-school students from five schools participated by completing a school assignment. The data were analyzed according to content analysis. Findings: Two main themes were developed. The first was One-sided emphasis on performance, bodily skills, and assessment with the corresponding sub-themes: Skills and performance; and Assessment, tests, and grading. The second was Wish for play, respite, co-determination, and togetherness with the sub-themes: Play and spontaneity; Respite, Togetherness and cooperation; and Co-determination and engagement. Our findings reveal a wide range of student experiences with PE classes, from a welcome respite in an otherwise sedentary and theoretically dominated day at school and enjoying being physically active with classmates, to frustration about extensive use of tests, lack of mastery, and feelings of exclusion.Conclusion: To be consistent with the values of the Ministry of Education in Norway, we conclude that the content and mode of delivery of PE in schools would benefit from being rethought if the intent is to facilitate children to stay physically active. Norwegian physiotherapists are promoters of health and physical activity across the lifespan. As part of health services in schools, they are in a prime position to optimize the PE experience for students.

An Experientially Derived Model of Flexible and Intentional Actions for Weight Loss Maintenance After Severe Obesity.

BACKGROUND: Knowledge about non-surgical weight loss (WL) is scarce among people with severe obesity (SO). Lifestyle changes are primarily self-driven, occasionally accompanied by professional guidance and weight-management support. Weight regain and intervention discontinuation are common challenges among guidance and support programmes. In the current study, we describe a model of meaningful strategies for maintaining WL after SO based on the experiences of successful cases. METHODS: Aiming to investigate the experiences of WL and weight loss maintenance (WLM) (≥5 years) following SO, we designed a qualitative study. Ten adults of Norwegian ethnicity, eight women and two men aged from 27 to 59, participated in individual in-depth interviews. We recruited participants living in rural districts and cities across all four regions of Norway. The interviews concentrated on participants' experiences of losing weight and maintaining a lower weight over the long term. The transcripts were analysed with a rigorous method for thematic cross-case analysis, namely, systematic text condensation (STC). RESULTS: Participants identified four experiential themes at the core of long-term WLM: (a) Owning the decision, (b) Creating self-reinforcement, (c) Sustaining a lifestyle-forming identity, and (d) Selecting support appropriate to one's own situation. These core themes represent the intentional level, functioning both as the foundation of and the momentum for sustaining WL. On the behavioural level, participants continued to take action for change, obtain results, record and reflect on their efforts and milestones, observe what worked and felt good, and receive recognition from others, thereby realising changes. CONCLUSION: Based on these results, we propose a model of WLM after SO, suggesting that practices toward WLM on the behavioural level achieve meaning and sustainability through their relationship with a core intentional level found across participants' experiences. One implication is that the relationship between the intentional and behavioural levels might be more meaningful when discussing long-term WLM than the behaviours themselves.

Patients' experiences from basic body awareness therapy in the treatment of binge eating disorder -movement toward health: a phenomenological study.

BACKGROUND: Binge Eating Disorder (BED) is the most common eating disorder. Patients with BED are often not diagnosed, nor offered adequate specific treatment. A great number of those who receive recommended treatment do not recover over time. More knowledge about central aspects of BED, and treatments that specifically target such aspects is needed. Previous research has linked body experience to the development and maintenance of eating disorders, as well as influencing treatment results and the risk of relapse. The aim of this study was to explore how patients with BED experience Basic Body Awareness Therapy (BBAT), which is a psychomotor physiotherapy treatment addressing body experience. METHOD: In this phenomenological study, we interviewed two patients with BED in depth during and after treatment. Video observations of treatment sessions and logs written by the patients were used as supporting data. The analysis was guided by Van Manen's hermeneutic phenomenology. RESULTS: A meaning structure was identified: "On the way from the body as a problem to the body as a possibility." The two participants that besides BED also had a history of childhood trauma, perceived BBAT as a process of getting to know their own bodies in new ways, and described that the way they related to their own body changed as did aspects of their way of being. These changes were prominent when the participants described emotions, movement, pain, calmness, and self-experience, and interwoven with relational aspects as well as practices in everyday life. CONCLUSION: The present results indicate that BBAT stimulated body experience in a way that opened new possibilities for two participants with BED, and hence that BBAT can improve the health status of BED patients also suffering from childhood trauma.

Patients' quest for recognition and continuity in health care: time for a new research agenda?

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.

Moving Toward Connectedness - A Qualitative Study of Recovery Processes for People With Borderline Personality Disorder.

Borderline personality disorder (BPD) is a mental health disorder estimated to affect 1-2% of the general population. As a group, people with BPD endure a high degree of suffering, often leading to suicide attempts, self-harm, and suicide. Comparatively few studies explore the first person perspective of the person suffering from any mental health disorder. This might be especially problematic for people diagnosed with BPD, as this particular diagnosis is followed by stigma potentially making help seeking harder and helping relationships more vulnerable. We interviewed 12 female participants recently diagnosed with BPD in-depth about their experiences with recovery and treatment, and used a stepwise reflective approach to rigorously analyze the data. Results show an overarching theme of working toward connectedness, with four constituent sub-themes. We discuss the findings with regard to empirical work, recovery and autonomy, and the risk of epistemic injustice that people with BPD risk facing.

Contradictory experiences of safety and shame in inpatient mental health practice - a qualitative study.

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.

Being recognised as a whole person: A qualitative study of inpatient experience in mental health.

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.

Space perception, movement, and insight: attuning to the space of everyday life after major weight loss.

Physiotherapists are well placed to help people adjust and engage meaningfully with the world following major weight loss. Recent research indicates that the body size a patient has lived with for years can continue to affect movement and perception even after largescale weight loss. This article explores this discrepancy in depth from the perspective of phenomenology and space perception and through the concepts of body image, body schema, and affordances. It draws on an empirical example in which a nautical engineer described his lived experience of returning to work following bariatric surgery and the discrepancies he experienced while adjusting to his new situation, particularly when moving his smaller body around the ship's engine room, previously inaccessible to him. Analysis of this empirical example suggests that transitions in weight and size following bariatric surgery are both highly explicit in awareness (i.e., body image) and outside awareness (i.e., body schema). Major weight loss can open up new affordances and possibilities of being in the world, but only after adjustments in body image and body schema. The article suggests ways in which such insights can contribute to physiotherapists' clinical development and practice when working with patients undergoing major weight loss.

Living a successful weight loss after severe obesity.

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.

Adaptation for participation!

PURPOSE: To explore children's experiences with testing, acquiring and using assistive devices. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

Translating weight loss into agency: Men's experiences 5 years after bariatric surgery.

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.