"It turned out right for both of us": A qualitative study about a preference for home death and actual place of death.

This qualitative study was conducted in Norway to explore couples' preference for home death when one of the partners was dying from cancer, and what made home death possible or not. We conducted dyad interviews with five couples. After the patients' death, the spouses participated in individual interviews. The data were interpreted using thematic narrative analysis. One patient died at home, and three died in a healthcare institution. The narratives show how interdependency and mutual care were important when dealing with home death. When care needs were manageable at home, home was perceived a safe place and the preferred place for death. When care needs were experienced to become unmanageable at home, the sense of safety changed and admission to a health care institution was considered the best option. Regardless of place of death, the spouses experienced the end to have turned out right for their partner and themselves.

A suffering body, hidden away from others: The experience of being long-term bedridden with severe myalgic encephalomyelitis/chronic fatigue syndrome in childhood and adolescence.

In this article, we present findings from a qualitative study examining how young women experience being long-term bedridden with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), during childhood and adolescence. The aim is to explore how young women who fell ill with ME/CFS during childhood and adolescence look back on their lived experience of being long-term bedridden from the vantage point of being fully or partially recovered. Informed by a phenomenological theoretical perspective, the researchers applied a narrative methodological approach involving the analysis of interviews with 13 women, aged 16-29 years at the time of the interview. Attention was particularly paid to how participants structured their narratives and to the events (telling moments) they identified as important. Four major storylines were developed: Ambivalent responses to the presence of others; A body on the edge of life; An eternity in the dark; and Recasting painful memories of being bedridden and alone. Based on our findings, we argue that the experience of being long-term bedridden with ME/CFS during childhood and adolescence can be understood and communicated as a plot in which individuals find themselves pushed to the extreme limit of suffering and loneliness.

Bodies in lockdown: Young women's narratives of falling severely ill with ME/CFS during childhood and adolescence.

Thirteen women (16-30 years) storied their experiences about the process of falling severely ill with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome during childhood and adolescence. We performed a narrative analysis informed by phenomenology which yielded three central themes: The active and meaningful life I used to live; gradually developing unhomeliness and feeling pushed toward the edge; and left abandoned on the sidelines. Out of the incomprehensible and unpredictable emerges an understanding of the scale of their ordeal, along with advice that may have made it worse. This portrays a gradual developing uncertain, unhomely life situation with no outlooks for future recovery.

Enabling personal recovery from fibromyalgia - theoretical rationale, content and meaning of a person-centred, recovery-oriented programme.

BACKGROUND: Fibromyalgia (FM) is a contested, chronic widespread pain syndrome on which recommended therapies have short-lasting, moderate effects. Nevertheless, some patients become symptom-free, and their recovery experiences inspired us to develop a patient-centred recovery-oriented programme (PROP) delivered in a group format. Presently, we describe the theoretical rationale, purpose and content of the PROP, and its meanings for clinicians and patients. METHODS: A multidisciplinary clinical team, a leader of a rehabilitation unit, and two researchers coproduced the PROP. Five full-day seminars were arranged to bridge research and clinical experiences. Qualitative studies about patients' illness and recovery experiences and questions by researchers facilitated reflections on clinical experiences. The meaning of the PROP was examined using focus group and individual interviews with patients and clinicians immediately after completing the course and after 1-1.5 years. RESULTS: The biopsychosocial model displays the research evidence across biological, mental and social impacts of FM, justifying that life stress can be an illness-maintaining factor in FM. The content addresses enabling patients to heal their own life and self by modifying life stress. Patients engage in making sense of the relationship between FM, themselves, and life through exploring, discovering and creating appropriate solutions for their daily social life. The PROP reduced uncertainties and brought a positive attitude and hope to the groups. After 1 year, patients are still engaged in recovery work, experience more good days, and maintain hope for further recovery. By sharing and reflecting on clinical experiences, a unified clinical team was established that continues to develop their competency. CONCLUSION: To our knowledge, the PROP is the first programme for patients with FM that results from a process of coproducing knowledge, is based on explicit theoretical rationale, and facilitates a personal experiential recovery process. PROP is found to be meaningful and to work by patients and clinicians.

European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (EUROMENE): Expert Consensus on the Diagnosis, Service Provision, and Care of People with ME/CFS in Europe.

Designed by a group of ME/CFS researchers and health professionals, the European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (EUROMENE) has received funding from the European Cooperation in Science and Technology (COST)-COST action 15111-from 2016 to 2020. The main goal of the Cost Action was to assess the existing knowledge and experience on health care delivery for people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in European countries, and to enhance coordinated research and health care provision in this field. We report our findings and make recommendations for clinical diagnosis, health services and care for people with ME/CFS in Europe, as prepared by the group of clinicians and researchers from 22 countries and 55 European health professionals and researchers, who have been informed by people with ME/CFS.

Working with patients suffering from chronic diseases can be a balancing act for health care professionals - a meta-synthesis of qualitative studies.

BACKGROUND: The number of patients with long-term chronic diseases is increasing. These patients place a strain on health care systems and health care professionals (HCPs). Presently, we aimed to systematically review the literature on HCPs' experiences working with patients with long-term chronic diseases such as type 2 diabetes, chronic obstructive pulmonary disease (COPD), and chronic kidney disease (CKD). METHOD: A systematic search of papers published between 2002 and July 2019 was conducted in the Embase, AMED, PsycINFO, MEDLINE, CINAHL, and COCHRANE databases to identify studies reporting qualitative interviews addressing HCPs' experiences working with adults with COPD, CKD or type 2 diabetes. An interdisciplinary research group were involved in all phases of the study. With the help of NVivo, extracts of each paper were coded, and codes were compared across papers and refined using translational analysis. Further codes were clustered in categories that in turn formed overarching themes. RESULTS: Our comprehensive search identified 4170 citations. Of these, 20 papers met our inclusion criteria. Regarding HCPs' experiences working with patients with COPD, CKD, or type 2 diabetes, we developed 10 sub-categories that formed three overarching main themes of work experiences: 1) individualizing one's professional approach within the clinical encounter; 2) managing one's emotions over time; 3) working to maintain professionalism. Overall these three themes suggest that HCPs' work is a complex balancing act depending on the interaction between patient and professional, reality and professional ideals, and contextual support and managing one's own emotions. CONCLUSION: Few qualitative studies highlighted HCPs' general working experiences, as they mainly focused on the patients' experiences or HCPs' experiences of using particular clinical procedures. This study brings new insights about the complexity embedded in HCPs' work in terms of weighing different, often contrasting aspects, in order to deliver appropriate practice. Acknowledging, discussing and supporting this complexity can empower HCPs to avoid burning out. Leaders, health organizations, and educational institutions have a particular responsibility to provide HCPs with thorough professional knowledge and systematic support. TRIAL REGISTRATION: PROSPERO number: CRD42019119052.

The singular patient in patient-centred care: physiotherapists' accounts of treatment of patients with chronic muscle pain.

A patient-centred approach has gained increasing interest in medicine and other health sciences. Whereas there are discussions about the meaning of a patient-centred approach and what the concept entails, little is known about how the patient as a person is understood in patient-centred care. This article investigates understandings of the patient as a self in patient-centred care through physiotherapy of patients with chronic muscle pain. The material consists of interviews with five Norwegian physiotherapists working in a rehabilitation clinic. Drawing on Kristeva's discussion of subjectivity in medical discourse, the study highlights two different treatment storylines that were closely entwined. One storyline focuses on open singular healing processes in which the treatment was based on openness to a search for meaning and sharing. In this storyline, the "person" at the centre of care was not essentialised in terms of biological mechanisms, but rather considered as a vulnerable, irrational and moving self. By contrast, the second storyline focused on goal-oriented interventions aimed at restoring the patient to health. Here, the person in the centre of the treatment was shaped according to model narratives about "the successful patient"; the empowered, rational, choosing and self-managing individual. As such, the findings revealed two conflicting concepts of the individual patient inherent in patient-centred care. On the one hand, the patient is seen as being a person in constant movement, and on the other, they are captured by more standardised terms designed to focus on a more stable notion of outcome of illness. Therefore, our study suggests that the therapists' will to recognise the individual in patient-centred care had a counterpart involving a marginalisation of the singular.

Physiotherapists as detectives: investigating clues and plots in the clinical encounter.

This article investigates the clinical reasoning process of physiotherapists working with patients with chronic muscle pain. The article demonstrates how physiotherapists work with clues and weigh up different plots as they seek to build consistent stories about their patient's illness. The material consists of interviews with 10 Norwegian physiotherapists performed after the first clinical encounter with a patient. Using a narrative approach and Lonergan's theory of interpretation, the study highlights how, like detectives, the therapists work with clues by asking a number of interpretive questions of their data. They interrogate what they have observed and heard during the first session, they also question how the patient's story was told, including the contextual and relation aspects of clue production, and they ask why the patient's story was told to them in this particular way at this particular time. The article shows how the therapists configure clues into various plots on the basis of their experience of working with similar cases and how their detective work is pushed forward by uncertainty and persistent questioning of the data.

Spatial navigation measured by the Floor Maze Test in patients with subjective cognitive impairment, mild cognitive impairment, and mild Alzheimer's disease.

BACKGROUND: Impaired spatial navigation is an early sign of Alzheimer's disease (AD), but this can be difficult to assess in clinical practice. We examined how the performance on the Floor Maze Test (FMT), which combines navigation with walking, differed between patients with subjective cognitive impairment (SCI), mild cognitive impairment (MCI), and mild AD. We also explored if there was a significant relationship between the FMT and the cognitive tests or sociodemographic factors. METHODS: The study included 128 patients from a memory clinic classified as having SCI (n = 19), MCI (n = 20), and mild AD (n = 89). Spatial navigation was assessed by having the patients walk through the FMT, a two-dimensional maze. Both timed measures and number of errors were recorded. Cognitive function was assessed by the Word List Memory test, the Clock Drawing test, the Trail Making tests (TMT) A and B, and the Mini Mental Status Examination (MMSE). RESULTS: The patients with MCI were slower than those with SCI, while the patients with mild AD more frequently completed the FMT with errors or gave up than the patients with MCI. Performance on the FMT was significantly associated with executive function (measured by TMT-B). CONCLUSIONS: The performances on the FMT worsened with increasing severity of cognitive impairment, and the FMT was primarily associated with executive function. The explained variance was relatively low, which may indicate that the standard cognitive test battery does not capture impairments of spatial navigation.

Staying healthy from fibromyalgia is ongoing hard work.

Fibromyalgia syndrome (FMS) is a chronic musculoskeletal pain condition. Although studies have reported that some patients can become healthy again, little is known about what they tell about their lives after having FMS. In this study, we interviewed eight Norwegian women who had all recovered from FMS about their experiences when ill and subsequently being healthy. Inspired by narrative methods, we then conducted a thematic narrative analysis. The findings indicate that although women reported that life was better than before, they also reported investing considerable effort in remaining healthy. When ill, they struggled to maintain the routines of everyday life. Being healthy again, they put great effort into avoiding illness through diet, exercise, and relaxation. In conclusion, remaining healthy requires ongoing hard work to maintain the body, as well as profound changes in everyday life. At the same time, the narratives show continuity in the informants' self-presentation as hard-working women.

Effects of controlled breathing exercises and respiratory muscle training in people with chronic obstructive pulmonary disease: results from evaluating the quality of evidence in systematic reviews.

BACKGROUND: This paper reviews evidence and quality of Systematic Reviews (SRs) on the effects of breathing control exercises (BCEs) and respiratory muscle training (RMT) on breathlessness/dyspnea and other symptoms, and quality of life (QOL) for individuals with chronic obstructive pulmonary disease (COPD). METHODS: A search for BCE and RMT literature in COPD published between January 1, 2002 and December 31, 2013 was performed in the following databases: PubMed, Ovid, CINAHL, PsycINFO, AMED, Cochrane and PEDro. The AMSTAR criteria were used to evaluate quality. RESULTS: After reviewing 642 reports, seven SRs were identified on RMT and BCEs. Three SRs were of high quality, three were of moderate quality, and one was of low quality. Two high-quality SRs reported significantly beneficial effects of RMT on dyspnea, and one reported significant effects on disease-specific QOL and fatigue. In these SRs, pooled data analyses were performed with three to fourteen single randomised control trials (RCTs) included in the analysis. In one of the SRs the quality of the single RCTs were rated by the authors to be between 5-7 (with10 best) and in the other one the quality of the single RCTs were rated to be between 30-83% of the maximum score.One high-quality SR found a significant positive effect of BCE based on pooled data analysis with two single RCTs in regard to pursed-lip breathing (PLB) on breathlessness. In this SR, one single RCT on diaphragmatic breathing (DB) and another one on yoga breathing (YB) showed effect on disease-specific QOL. The single RCTs included in the SR were rated by the authors in the SRs to be of low and moderate quality. CONCLUSIONS: Based on three high-quality SRs performing pooled data analyses, there is evidence that RMT has effect on breathlessness, fatigue and disease-specific QOL and PLB on breathlessness. There is also evidence that single studies on DB and YB has effect on disease-specific QOL. Few RCTs are available and the variable quality of the single RCTs in the SRs, seem to require more RCTs in particular for BCEs, but also RMT before conclusions regarding effects and high quality SRs can be written.

Individuals' invisible work continues after epilepsy surgery: A qualitative interview study.

OBJECTIVE: How do persons with epilepsy (PWE) experience their everyday lives after epilepsy surgery? METHODS: Qualitative thematic interviews were conducted with eight PWEs (30 to 60 years old). They were recruited when coming for post-operative control 1 to 5 years after epilepsy surgery. The interviews were transcribed. They were analysed by thematic analysis and inspired by Goffman who examines everyday life activities as a theatre play. RESULTS: Before surgery, a substantial invisible and hidden work of adjustments was performed to prevent seizures, to secure help from others if seizures occurred, and to protect oneself from others' gaze during a seizure. This invisible work continued after surgery even for those who became seizure-free; but now for the purpose of protecting oneself from relapse of epilepsy. From the participants perspective there was no or minor change in daily activities among those not becoming seizure-free after surgery. In contrast, those who became seizure-free enjoyed the freedom to participate in social activities without planning or restrictions. CONCLUSIONS: A striking finding was that daily life after surgery comprises considerably invisible work to protect a social self, and this preventive and protective invisible work continued, although those who became seizure-free were living an ordinary socially healthy life.

Healthcare experiences of fibromyalgia patients and their associations with satisfaction and pain relief. A patient survey.

OBJECTIVES: The etiology of fibromyalgia (FM) is disputed, and there is no established cure. Quantitative data on how this may affect patients' healthcare experiences are scarce. The present study aims to investigate FM patients' pain-related healthcare experiences and explore factors associated with high satisfaction and pain relief. METHODS: An anonymous, online, and patient-administered survey was developed and distributed to members of the Norwegian Fibromyalgia Association. It addressed their pain-related healthcare experiences from both primary and specialist care. Odds ratios for healthcare satisfaction and pain relief were estimated by binary logistic regression. Directed acyclic graphs guided the multivariable analyses. RESULTS: The patients (n = 1,626, mean age: 51 years) were primarily women (95%) with a 21.8-year mean pain duration and 12.7 years in pain before diagnosis. One-third did not understand why they had pain, and 56.6% did not know how to get better. More than half had not received satisfactory information on their pain cause from a physician, and guidance on how to improve was reported below medium. Patients regretted a lack of medical specialized competence on muscle pain and reported many unmet needs, including regular follow-up and pain assessment. Physician-mediated pain relief was low, and guideline adherence was deficient. Only 14.8% were satisfied with non-physician health providers evaluating and treating their pain, and 21.5% were satisfied (46.9% dissatisfied) with their global pain-related healthcare. Patients' knowledge of their condition, physicians' pain competence and provision of information and guidance, agreement in explanations and advice, and the absence of unmet needs significantly increased the odds of both healthcare satisfaction and pain relief. CONCLUSIONS: Our survey describes deficiencies in FM patients' pain-related healthcare and suggests areas for improvement to increase healthcare satisfaction and pain relief. (REC# 2019/845, 09.05.19).

Recovery and prediction of physical functioning outcomes during the first year after total hip arthroplasty.

OBJECTIVES: To investigate recovery of physical functioning in patients during the first year after total hip arthroplasty (THA), and to predict postoperative walking distance outcomes from preoperative measures. DESIGN: A longitudinal prospective design was used. Data were analyzed by repeated-measures analysis of variance and multivariate regression analyses. SETTING: Two hospitals. PARTICIPANTS: Patients with hip osteoarthritis were consecutively included and assessed preoperatively (n=88), at 3 months (n=88), and at 12 months (n=64) after THA. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Physical functioning was assessed by objective measures-the 6-minute walk test (6MWT), stair climbing test, Index of Muscle Function, figure-of-eight, and active hip range of motion-and the subjective measures by Harris Hip Score and Hip dysfunction and Osteoarthritis Outcome Score. RESULTS: In objective measures, improvements were found from preoperatively to 3 months in 6MWT (P<.01) and stair climbing test (P<.05) scores, while all measures had improved from 3 to 12 months (P≤.001). In contrast, all the subjective measures showed substantial improvements at 3 months, but small further improvements from 3 to 12 months (P<.001). Age, sex, preoperative 6MWT distance, and hip range of motion predicted 6MWT outcomes at 3 and 12 months (P≤.01). CONCLUSIONS: The objective measures of physical functioning improved gradually during the first postoperative year, while the subjective measures showed large early improvements, but little further improvements. Younger age, male sex, and better scores of walking distance and hip flexibility before surgery predicted better score in walking distance at both 3 and 12 months after surgery.

Functional improvements desired by patients before and in the first year after total hip arthroplasty.

BACKGROUND: In the field of rehabilitation, patients are supposed to be experts on their own lives, but the patient's own desires in this respect are often not reported. Our objectives were to describe the patients' desires regarding functional improvements before and after total hip arthroplasty (THA). METHODS: Sixty-four patients, 34 women and 30 men, with a mean age of 65 years, were asked to describe in free text which physical functions they desired to improve. They were asked before surgery and at three and 12 months after surgery. Each response signified one desired improvement. The responses were coded according to the International Classification of Functioning, Disability and Health (ICF) to the 1st, 2nd and 3rd category levels. The frequency of the codes was calculated as a percentage of the total number of responses of all assessments times and in percentage of each time of assessment. RESULTS: A total of 333 responses were classified under Part 1 of the ICF, Functioning and Disability, and 88% of the responses fell into the Activities and Participation component. The numbers of responses classified into the Activities and Participation component were decreasing over time (p < 0.001). The categories of Walking (d450), Moving around (d455), and Recreation and leisure (d920) included more than half of the responses at all the assessment times. At three months after surgery, there was a trend that fewer responses were classified into the Recreation and leisure category, while more responses were classified into the category of Dressing (d540). CONCLUSIONS: The number of functional improvements desired by the patients decreased during the first postoperative year, while the content of the desires before and one year after THA were rather consistent over time and mainly concerned with the ability to walk and participate in recreation and leisure activities. At three months, however, there was a tendency that the patients were more concerned about the immediate problems with putting on socks and shoes.

Experiences of shifts in physiotherapy for rheumatoid arthritis over time - an autoethnography.

INTRODUCTION: Several shifts in physiotherapy treatment of patients with rheumatoid arthritis (RA) have occurred over time. OBJECTIVE: This paper aims to identify shifts in physiotherapy practice for patients with RA based on the author's work experiences from the 1980s until today at two Norwegian rheumatism hospitals, and to explore why shifts may have happened. METHODS: A narrative was developed by describing events making a difference, categorizing, and ordering them with the help of narrative analysis and a sensitizing analytic lens on discourses. RESULTS: The storyline from the 1980s to approximately the turn of the millennium is called 'Shifts determined mainly by clinical context-driven events' which occurred in response to medical advances and physiotherapists' clinical experiences. These shifts were later justified by physiotherapists' research in the clinical context. The other storyline covers mainly the 2000s and is called 'Shifts increasingly determined by events beyond clinical physiotherapy context.' They include adjustments to further medical advances and implementation of biopsychosocial understanding of disease at the hospital, and to external research-based recommendations, health reforms, and economy. CONCLUSION: These processes have moved physiotherapy practice at the hospital from mainly providing individualized remedial and rehabilitative physiotherapy for the purpose to normalize physical function to an increasing focus on generic health measures for the purposes of health promotion and cardiovascular disease prevention. However, this shift may not fully match the complex needs presented by patients in disease remission with unrelenting fatigue and work inability and those who have multiple functional challenges and comorbidities.

Post-exertional malaise in daily life and experimental exercise models in patients with myalgic encephalomyelitis/chronic fatigue syndrome.

Post-exertional malaise (PEM) is commonly recognized as a hallmark of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and is often used as one of several criteria for diagnosing ME/CFS. In this perspective paper we want to reflect on how PEM is understood, assessed, and evaluated in scientific literature, and to identify topics to be addressed in future research. Studies show that patients use a wide variety of words and concepts to label their experience of PEM in everyday life, and they report physical or mental exertions as triggers of PEM. They also report that PEM may have an immediate or delayed onset and may last from a few days to several months. When standardized exercise tests are used to trigger PEM experimentally, the exacerbation of symptoms has a more immediate onset but still shows a wide variability in duration. There are indications of altered muscular metabolism and autonomic nervous responses if exercise is repeated on successive days in patients with ME/CFS. The decreased muscular capacity appears to be maintained over several days following such controlled exercise bouts. These responses may correspond to patients' experiences of increased exertion. Based on this background we argue that there is a need to look more closely into the processes occurring in the restitution period following exercise, as PEM reaches the peak in this phase.

Legitimacy in clinical practice: How patients with chronic muscle pain position themselves in the physiotherapy encounter.

RATIONALE, AIMS & OBJECTIVE: Patients who seek healthcare for long-lasting pain and symptoms without a detectable disease must put in extra work to be taken seriously and gain recognition as a patient. However, little is known about how patients' help-seeking is performed in clinical practice. The aim of the current study was to gain knowledge about the ways in which patients with chronic muscle pain position themselves as help-seekers during their first physiotherapy encounter. METHOD: The material consisted of observation of 10 therapist-patient clinical interviews in primary care clinics and was analyzed using perspectives from discourse theory and the concept of positioning. RESULTS: The study highlights how the patients positioned themselves in continually shift between two discourses: that of disease (considering the patient as an object under study) and that of illness (positioning the patient as an active and participating but also troubled individual). This shifting of position was negotiated in interaction with the therapist: patients' opportunities to position themselves within the discourse of illness were limited by therapists' focus on facts and causal relationships within the discourse of disease. CONCLUSION: Patients with chronic muscle pain seek to establish their legitimacy through the positivistic discourse of medicine and also through their compliance with the moral discourse of the patient as someone active, willing to take responsibility for their own health-and therefore worthy of treatment.

Acquiring a new understanding of illness and agency: a narrative study of recovering from chronic fatigue syndrome.

BACKGROUND: The condition known as chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) is poorly understood. Simplified medical models tend to neglect the complexity of illness, contributing to a terrain of uncertainty, dilemmas and predicaments. However, despite pessimistic pictures of no cure and poor prognosis, some patients recover. PURPOSE: This study's purpose is to provide insight into people's experiences of suffering and recovery from very severe CFS/ME and illuminate understanding of how and why changes became possible. METHODS: Fourteen former patients were interviewed about their experiences of returning to health. A narrative analysis was undertaken to explore participants' experiences and understandings. We present the result through one participant's story. RESULTS: The analysis yielded a common plotline with a distinct turning point. Participants went through a profound narrative shift, change in mindset and subsequent long-time work to actively pursue their own healing. Their narrative understandings of being helpless victims of disease were replaced by a more complex view of causality and illness and a new sense of self-agency developed. DISCUSSION: We discuss the illness narratives in relation to the disease model and its shortcomings, the different voices dominating the stories at different times in a clinically, conceptually, and emotionally challenging area.

'It's not just about me': a qualitative study of couples' narratives about home death when one of the partners is dying of cancer.

Background: Most cancer patients state a preference for home death. Care and support from primary caregivers are important to enable dying at home. A preference for home death from the perspective of couples has rarely been investigated. Objectives: To explore how a preference for home death is understood and enacted in couples where one of the partners is dying of cancer. Design: A qualitative interview research design with a narrative approach was used. Methods: Five couples participated in dyad interviews. During the analysis, two interviews that particularly illuminated couples' shared and individual views were chosen as the primary cases. Results: The interviews show, in two highly different ways, how a preference for home death is a significant relational matter. The interviews are presented as two cases: 'Struggles in an Unknown Terrain' and 'Reliance at the Kitchen Table'. They show how a preference for home death can be understood and enacted as a struggle or as reliance based on the couple's shared biography and the partner's ability to care for the partner during the end-of-life phase. The analysis highlighted the negotiations that underpin a preference for home death. In these negotiations, the couples drew on idealised understandings of home death. These ideas were supported by cultural values related to autonomy and independence as well as participation and citizenship. Thus, in the negotiations about being cared for and caring, legitimate dependency and the maintenance of a reciprocal relationship were balanced. The presence of healthcare professionals and medical devices in the home had to be balanced with the need to maintain a sense of self and an authentic home. Conclusion: A relational perspective on a preference for home death made us attentive to couples' negotiations. These negotiations give couples the opportunity to re-evaluate and reconfirm individual and mutual needs in the end-of-life phase.