"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.

Expectations related to home-based telemonitoring of high-risk pregnancies: A qualitative study addressing healthcare providers' and users' views in Norway.

INTRODUCTION: A pregnancy can be evaluated as high-risk for the woman and/or the fetus based on medical history and on previous or ongoing pregnancy characteristics. Monitoring high-risk pregnancies is crucial for early detection of alarming features, enabling timely intervention to ensure optimal maternal and fetal health outcomes. Home-based telemonitoring (HBTM) is a marginally exploited opportunity in antenatal care. The aim of this study was to illuminate healthcare providers' and users' expectations and views about HBTM of maternal and fetal health in high-risk pregnancies before implementation. MATERIAL AND METHODS: To address diverse perspectives regarding HBTM of high-risk pregnancies, four different groups of experienced healthcare providers or users were interviewed (n = 21). Focus group interviews were conducted separately with midwives, obstetricians, and women who had previously experienced stillbirth. Six individual interviews were conducted with hospitalized women with ongoing high-risk pregnancies, representing potential candidates for HBTM. None of the participants had any previous experience with HBTM of pregnancies. The study is embedded in a social constructivist research paradigm. Interviews were analyzed using a thematic approach. RESULTS: The participants acknowledged the benefits and potentials of more active roles for both care recipients and providers in HBTM. Concerns were clearly addressed and articulated in the following themes: eligibility and ability of women, availability of midwives and obstetricians, empowerment and patient safety, and shared responsibility. All groups problematized issues crucial to maintaining a sense of safety for care recipients, and healthcare providers also addressed issues related to maintaining a sense of safety also for the care providers. Conditions for HBTM were understood in terms of optimal personalized training, individual assessment of eligibility, and empowerment of an active patient role. These conditions were linked to the importance of competent and experienced midwives and obstetricians operating the monitoring, as well as the availability and continuity of care provision. Maintenance of safety in HBTM in high-risk pregnancies was crucial, particularly so in situations involving emerging acute health issues. CONCLUSIONS: HBTM requires new, proactive roles among midwives, obstetricians, and monitored women, introducing a fine-tuned balance between personalized and standardized care to provide safe, optimal monitoring of high-risk pregnancies.

'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.

Unpacking the Lay Epidemiology of Cervical Cancer: A Focus Group Study on the Perceptions of Cervical Cancer and Its Prevention among Women Late for Screening in Norway.

Nonattendance for cervical cancer screening is often understood in terms of a lack of 'appropriate' or 'correct' knowledge about the risks and prevention of the disease. Few studies have explored how lay persons-the users themselves-interpret and contextualise scientific knowledge about cervical cancer. In this study, we address the following research question: How is the epidemiology of cervical cancer and its prevention discussed among women who are late for cervical cancer screening in Norway? We completed nine focus group interviews (FGIs) with 41 women who had postponed cervical screening. The analyses were both inductive and explorative, aiming to unpack the complexity of lay understandings of cervical cancer. Interactive associations expressed in the FGIs reflected multiple understandings of aetiology and risk factors, screening, and interpretations of responsibility for acquiring cervical cancer. The term 'candidacy' was employed to provide an enhanced understanding of lay reasoning about the explanations and predictions of cervical cancer, as reflected in the FGIs. Both interpretations of biomedical concepts and cultural values were used to negotiate acceptable and nuanced interpretations of candidacy for cervical cancer. Uncertainties about risk factors for acquiring cervical cancer was an important aspect of such negotiations. The study's findings provide an in-depth understanding of the contexts in which screening may be rendered less relevant or significant for maintaining health. Lay epidemiology should not be considered inappropriate knowledge but rather as a productive component when understanding health behaviours, such as screening attendance.

Negotiating the care-giving role: family members' experience during critical exacerbation of COPD in Norway.

Healthcare policies often state that complex conditions are to be treated outside hospital in various forms of public-private partnership. Chronic obstructive pulmonary disease (COPD) is a progressive illness that includes episodes of serious acute exacerbations characterised by extreme breathlessness. There is limited knowledge about COPD exacerbations from the perspective of family caregivers and implications of the changing boundary between hospital care and care at home. In this paper, we explore how caregivers negotiate their role as caregivers with patients and healthcare professionals during acute exacerbations. We conducted 10 qualitative interviews with family caregivers of COPD patients in 2011, all were spouses over the age of 60. The participants were recruited through the patient pool of ambulatory pulmonary services of two hospitals in Oslo, Norway. Data were interpreted using thematic analysis. The caregivers described a lack of understanding and support from health professionals in some situations. They shouldered considerable responsibility, but were not always acknowledged as competent carers by professionals. Caregivers had to balance their involvement. They noted that they could lose the professionals' co-operation if their involvement was perceived as interfering or preventing the professionals from exercising their expertise. However, by not sharing their personalised knowledge about the patients, they risked that the professionals would not understand the severity of the exacerbation, which could undermine their own ability to maintain a sense of safety and control. The negotiations caregivers participated in and the uncertainty they experienced shed new light on the complexity of their role, and the discrepancy between practice and ideals in healthcare policy regarding collaboration of care. It is crucial to develop further knowledge about structural, interactional and communicational facilitators and barriers for reaching shared understandings and facilitating mutual trust in these demanding situations.

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.

Troubled bodies--troubled men: a narrative analysis of men's stories of chronic muscle pain.

PURPOSE: To examine how men present themselves as patients with chronic pain and how the men's subjective experience of pain interplay with dominant norms of masculinity. METHOD: The material consists of qualitative interviews with 10 Norwegian men on rehabilitation from chronic neck pain. The data is subjected to narrative analysis combined with a gender-sensitive perspective. FINDINGS: The men's accounts of chronic pain were narrated as a series of events, displaying physical impairments and demanding work and troubled private affairs. Through rich descriptions of presumably objective facts, like heredity, physical injury and the character of the men's work, and comparatively little information about the men's personal experiences of pain and distress, a rational and self-controlled masculinity is displayed. However, extrapolation of the analysis also brought out how human suffering, such as chronic headaches, the losing of control and of oneself, is narrated in the men's stories. CONCLUSION: Men's stories of chronic muscle pain display a subtle balance between following dominant norms of masculinity, such as being rational and in self-control, and a need to express vulnerability as human beings. We argue that health care professionals should be sensitive to the dynamics of subjectivities and cultural norms of gender within patients' illness stories.