"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.

Sociodemographic characteristics associated with cervical cancer screening participation by send-to-all and opt-in HPV self-sampling: Who benefits? Results from a randomized controlled trial among long-term non-attending women in Norway.

With the objective to investigate associations between sociodemographic characteristics and participation in interventions designed to increase participation in cervical cancer screening among under-screened women, we randomized a random sample of 6000 women in Norway aged 35-69 years who had not attended cervical screening for ≥10 years to receive either (i) a reminder to attend regular screening (control), (ii) an offer to order a self-sampling kit (opt-in), or (iii) a self-sampling kit unsolicited (send-to-all). We analyzed how sociodemographic characteristics were associated with screening participation within and between screening arms. In the send-to-all arm, increased screening participation ranged from 17.1% (95% confidence interval [95% CI] = 10.3% to 23.8%) to 30.0% (95% CI = 21.5% to 38.6%) between sociodemographic groups. In the opt-in arm, we observed smaller, and at times, non-significant increases within the range 0.7% (95% CI = -5.8% to 7.3%) to 19.1% (95% CI = 11.6% to 26.7%). In send-to-all versus control comparisons, there was greater increase in participation for women in the workforce versus not (6.1%, 95% CI = 1.6% to 10.6%), with higher versus lower income (7.6%, 95% CI = 2.2% to 13.1%), and with university versus primary education (8.5%, 95% CI = 2.4% to 14.6%). In opt-in versus control comparisons, there was greater increase in participation for women in the workforce versus not (4.6%, 95% CI = 0.7% to 8.5%), with higher versus lower income (6.3%, 95% CI = 1.5% to 11.1%), but lower increase for Eastern European versus Norwegian background (-12.7%, 95% CI = -19.7% to -5.7%). Self-sampling increased cervical screening participation across all sociodemographic levels, but inequalities in participation should be considered when introducing self-sampling, especially with the goal to reach long-term non-attending women.

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.

The cost-effectiveness of opt-in and send-to-all HPV self-sampling among long-term non-attenders to cervical cancer screening in Norway: The Equalscreen randomized controlled trial.

OBJECTIVE: We assessed the cost-effectiveness of mailing a human papillomavirus self-sampling (HPV-ss) kit, directly or via invitation to order, compared with mailing reminder letters among long-term non-attenders in Norway. METHODS: We conducted a secondary analysis using the Equalscreen study data with 6000 women aged 35-69 years who had not screened in 10+ years. Participants were equally randomized into three arms: reminder letter (control); invitation to order HPV-ss kit (opt-in); directly mailed HPV-ss kit (send-to-all). Cost-effectiveness (2020 Great British Pounds (GBP)) was estimated using incremental cost-effectiveness ratios (ICERs) per additional screened woman, and per additional cervical intraepithelial neoplasia grade 2 or worse (CIN2+) from extended and direct healthcare perspectives. RESULTS: Participation, CIN2+ detection, and total screening costs were highest in the send-to-all arm, followed by the opt-in and control arms. Non-histological physician appointments contributed to 67% of the total costs in the control arm and ≤ 31% in the self-sampling arms. From an expanded healthcare perspective, the ICERs were 135 GBP and 169 GBP per additional screened woman, and 2864 GBP and 4165 GBP per additional CIN2+ detected for the opt-in and send-to-all, respectively. CONCLUSIONS: Opt-in and send-to-all self-sampling were more effective and, depending on willingness-to-pay, may be considered cost-effective alternatives to improve screening attendance in Norway.

HPV self-sampling among long-term non-attenders to cervical cancer screening in Norway: a pragmatic randomised controlled trial.

BACKGROUND: Cervical cancer screening participation is suboptimal in most settings. We assessed whether human papillomavirus (HPV) self-sampling may increase screening participation among long-term non-attenders in Norway. METHODS: A pragmatic randomised controlled trial with participation as the primary outcome was initiated in the national cervical screening programme in March 2019. A random sample of 6000 women aged 35-69 years who had not attended screening for at least 10 years were randomised 1:1:1 to receive either (i) a reminder to attend regular screening (control), (ii) an offer to order a self-sampling kit (opt-in) for HPV testing or (iii) a self-sampling kit unsolicited (send-to-all) for HPV testing. RESULTS: Total participation was 4.8%, 17.0% and 27.7% among control, opt-in and send-to-all (P < 0.0001; participation difference (%) send-to-all vs. control: 22.9 (95%CI: 20.7, 25.2); opt-in vs. control: 12.3 (95%CI: 10.3, 14.2); send-to-all vs. opt-in: 10.7 (95% CI: 8.0, 13.3)). High-risk HPV was detected in 11.5% of self-samples and 9.2% of clinician-collected samples (P = 0.40). Most women (92.5%) who returned a positive self-sample attended the clinic for triage testing. Of the 933 women screened, 33 (3.5%) had CIN2 + (1.1%, 3.7%, 3.8% among control, opt-in, and send-to-all, respectively), and 11 (1.2%) had cervical cancer (0%, 1.2%, 1.3% among control, opt-in, send-to-all, respectively). CONCLUSION: Opt-in and send-to-all self-sampling increased screening participation among long-term, higher-risk non-attenders. CLINICAL TRIAL REGISTRATION: ClinicalTrials.gov NCT03873376.

Perspectives of non-attenders for cervical cancer screening in Norway: a qualitative focus group study.

OBJECTIVE: The attendance rate for cervical cancer screening in Norway is currently suboptimal at 69%, and an in-depth understanding of postponement of cervical cancer screening from the perspective of non-attenders is lacking. This study aims to generate knowledge about how non-attenders for cervical cancer screening reflect on booking a screening appointment. METHODS: Using the Norwegian cervical cancer screening registry, we identified and recruited women who were non-attenders to screening. Nine focus group interviews were carried out, with 41 women participating in the interviews. RESULTS: Four main themes were generated, which provide a comprehensive understanding of how women who are overdue for screening reflect on their hesitancy to book a screening appointment: 'It's easy to forget about it', 'Women have to arrange their own appointment', 'It has to be a 'must'' and 'It's a humiliating situation'. CONCLUSION: The degree to which women regard screening as important is affected by the nudging strategies employed in the screening programme and the facilitation of attendance provided by healthcare services. Dependence on one's personal initiative to schedule a screening appointment and perception of a lack of responsibility on the part of healthcare services to attend screening may undermine informed and shared decision-making about screening attendance.

Searching for "transformative moments": A qualitative study of nurses' work during home visits to COPD patients and their caregivers in Norway.

AIM: The integration of families into healthcare services is being emphasized increasingly in healthcare polices. The aim of this study was to investigate how professionals during home visits support both patients and caregivers in accepting and accommodating to illness. DESIGN: An explorative qualitative design. METHODS: Participant observations from home visits (N = 20) of pulmonary ambulatory nurses to COPD patients in Norway, followed by interviews with these nurses. RESULTS: Our findings demonstrate the delicate nature of nurses' work during home visits to COPD patients and their caregivers. They support both patients and caregivers in reconciling themselves with the negative consequences of illness, as well as giving legitimation to and potential room for, sustainable arrangements within the scope of the relationship. The nurses address significant issues, having transformative potential concerning attitudes and practices related to the management of illness and adjusting to a complex illness trajectory.

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.

Between disruption and continuity: challenges in maintaining the 'biographical we' when caring for a partner with a severe, chronic illness.

Chronic obstructive pulmonary disease (COPD) is a progressive illness that changes the lives of patients and their spouses dramatically. The aim of this paper is to show how spouses of COPD patients integrate their tasks as informal carers with their role as spouses and the tensions and challenges involved in this. The study draws on qualitative interviews with spouses of COPD patients, recruited from the patient pool of ambulatory pulmonary services of two hospitals in Oslo, Norway. The spouses described their great efforts to re-establish normality and continuity in their everyday lives. Accomplishing this was a delicate process because they faced several dilemmas in this work. They balanced the need to sustain the independence and integrity of both parties against the need to ensure safety and deal with the progression of the illness. We propose 'biographical we' as a concept that can highlight the great effort spouses put into establishing a sense of continuity in their lives. In times when healthcare policy involves mobilising informal caregiving resources, an awareness of the complexity of caregiving relationships is crucial when developing appropriate support for informal carers.