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Background: Over the next two decades, the numbers of people who will need palliative care in the United Kingdom and Ireland is projected to increase. Hospices play a vital role supporting people who require specialist palliative care input through community-based and inpatient palliative care services. Evidence is needed to understand the role of these different services to inform future service development. Objectives: To describe the reasons for admission, and outcomes at the end of the stay, for patients admitted to two hospice inpatient units (IPUs). Design: This was a mixed-methods study using a convergent, parallel mixed-methods design. Methods: We reviewed the case notes of all patients admitted to two hospice inpatient units from July to November 2019; conducted semi-structured interviews with patients and families; as well as brief structured interviews with inpatient unit staff. Results: Two hundred fifty-nine patients were admitted to a hospice IPU, accounting for 276 admissions in total. Overall, 53% were female; median age was 71 years (range: 26–95 years). Most patients (95%) were White British or Scottish, and 95% had a cancer diagnosis. Most patients were admitted from the community, under one-third were admitted from hospital. Most (85%) had previous palliative care involvement. Nearly, half had district nurse support (48%). Worry and anxiety was frequently reported as a reason for admission, alongside physical concerns. Median length of stay was 12 days, and 68% died during their stay. Hospice was recorded as the preferred place of care for 56% of those who died there. Conclusions: Sustained efforts to promote the hospice as place of care for people with conditions other than cancer are needed alongside greater clarity regarding of the role of the hospice IPU, and who would benefit most from IPU support. [ABSTRACT FROM AUTHOR]

Background: Palliative care is acknowledged as an appropriate approach to support older people in nursing homes. Ethical issues arise from many aspects of palliative care provision in nursing homes; however, they have not been investigated in this context. Aim: To explore the ethical issues associated with palliative care in nursing homes in the United Kingdom. Design: Exploratory, sequential, mixed-methods design. Methods: Semi-structured interviews with 13 registered nurses and 10 healthcare assistants (HCAs) working in 13 nursing homes in the United Kingdom were used to explore ethical issues in palliative care. The 'Ethical Issues in Palliative Care for Nursing Homes' instrument was used to measure the frequency and level of distress arising from ethical issues through a cross-sectional survey with 69 registered nurses and 129 healthcare assistants. Data collection occurred between December 2014 and November 2015. Ethical considerations: Ethical approval was granted by Queen's University's School of Nursing and Midwifery Research Ethics Committee and governance sought from each nursing home's manager. Findings: The interviews revealed three themes: ethical issues in practice; relational issues; and organisational issues. No significant differences between registered nurses and healthcare assistants were evident, confirming the patterns emerging from the interviews. Relational issues, primarily issues with residents and families, occurred most frequently and caused greater distress. Conclusion: The shared environment is key in the experience of ethical issues; therefore, multidisciplinary education is needed for ethical decision making in palliative care. Addressing staff knowledge and service organisation may reduce ethical issues locally and provide a benchmark for global change. [ABSTRACT FROM AUTHOR]

Background: The use of quality-adjusted life years rests on the assertion that the objective of the health care system is to improve health. Aim: To elicit the views of expert stakeholders on the purpose and evaluation of supportive end of life care, and explore how different purposes of end of life care imply the need for different evaluative frameworks. Design: Semi-structured qualitative interviews, analysed through an economic lens using a constant comparative approach. Participants: Twenty professionals working in or visiting the United Kingdom or Republic of Ireland, with clinical experience and/or working as academics in health-related disciplines. Results: Four purposes of end of life care were identified from and are critiqued with the aid of the qualitative data: to improve health, to enable patients to die in their preferred place, to enable the patient to experience a good death, and to enable the patient to experience a good death, and those who are close to the patient to have an experience which is as free as possible from fear, stress and distress. Conclusion: Managing symptoms and reducing anxiety were considered to be core objectives of end of life care and fit with the wider health service objective of improving/maximising health. A single objective across the entire health system ensures consistency in the way that resource allocation is informed across that entire system. However, the purpose of care at the end of life is more complex, encompassing diverse and patient-centred objectives which we have interpreted as enabling the patient to experience a good death. [ABSTRACT FROM AUTHOR]

Background: Lack of compassion is claimed to result in poor and sometimes harmful nursing care. Developing strategies to encourage compassionate caring behaviours are important because there is evidence to suggest a connection between having a moral orientation such as compassion and resulting caring behaviour in practice. Objective: This study aimed to articulate a clearer understanding of compassionate caring via nurse educators' selection and use of published texts and film. Methodology: This study employed discourse analysis. Participants and research context: A total of 41 nurse educators working in universities in the United Kingdom (n = 3), Ireland (n = 1) and Canada (n = 1) completed questionnaires on the narratives that shaped their understanding of care and compassion. Findings: The desire to understand others and how to care compassionately characterised educators' choices. Most narratives were examples of kindness and compassion. A total of 17 emphasised the importance of connecting with others as a central component of compassionate caring, 10 identified the burden of caring, 24 identified themes of abandonment and of failure to see the suffering person and 15 narratives showed a discourse of only showing compassion to those 'deserving' often understood as the suffering person doing enough to help themselves. Discussion: These findings are mostly consistent with work in moral philosophy emphasising the particular or context and perception or vision as well as the necessity of emotions. The narratives themselves are used by nurse educators to help explicate examples of caring and compassion (or its lack). Conclusion: To feel cared about people need to feel 'visible' as though they matter. Nurses need to be alert to problems that may arise if their 'moral vision' is influenced by ideas of desert and how much the patient is doing to help himself or herself. [ABSTRACT FROM AUTHOR]

Family building by bisexual mothers is a neglected area of research, yet this is an important aspect of life course development that may reciprocally influence the sexual identity development of bisexual women and family processes around parenting. Family map drawings (genograms) and interview data were collected from eight cisgender women from the United Kingdom and Republic of Ireland who spoke about their bisexual parenting experience and family relationships. Thematic narrative analysis indicates that participants depict both heteronormative (traditional) extended kinship networks (radiating out from a family core centering on them and their children) and family of choice network features. Nonetheless certain features appear to be more indirectly presented on some participants’ family maps: namely, complex or marginalized (erased) relationships with additional partners that may sustain sexual identity but contradict both heteronormative and homonormative presentations of family life. Our discussion considers the difficult issues bisexual mothers face in maintaining both their family relationships and a marginalized sexual identity. [ABSTRACT FROM AUTHOR]

Family building by bisexual mothers is a neglected area of research, yet this is an important aspect of life course development that may reciprocally influence the sexual identity development of bisexual women and family processes around parenting. Family map drawings (genograms) and interview data were collected from eight cisgender women from the United Kingdom and Republic of Ireland who spoke about their bisexual parenting experience and family relationships. Thematic narrative analysis indicates that participants depict both heteronormative (traditional) extended kinship networks (radiating out from a family core centering on them and their children) and family of choice network features. Nonetheless certain features appear to be more indirectly presented on some participants’ family maps: namely, complex or marginalized (erased) relationships with additional partners that may sustain sexual identity but contradict both heteronormative and homonormative presentations of family life. Our discussion considers the difficult issues bisexual mothers face in maintaining both their family relationships and a marginalized sexual identity. [ABSTRACT FROM AUTHOR]

Background: While studies have evaluated caregiver outcomes in heart failure, the burden and support needs when caring for someone with advanced heart failure at the end of life have yet to be outlined. Aim: To identify psychosocial factors associated with caregiver burden and evaluate the support needs of caregivers in advanced heart failure. Design: A sequential mixed methods study comprising two phases: (1) postal survey with advanced heart failure patients and their caregivers and (2) interviews with current and bereaved caregivers. Correlation, chi-square, t test, regression and thematic analysis were undertaken on the data. Participants: Advanced heart failure patients (n = 112) and their caregivers (n = 84) were recruited from secondary care settings across the United Kingdom and Ireland. For phase 2 interviews, current caregivers (n = 20) were purposively recruited from phase 1, and bereaved caregivers (n = 10) were purposively recruited via voluntary organisation, social media and email. Results: More than half the caregivers (53%) had levels of distress associated with depression (Zarit Burden score >24). Caregiver depression score, preparedness for caregiving and patients' depression score predicted caregiver burden. Qualitative analysis identified an overarching theme of lack of future care planning and four subthemes: (1) seeking emotional support from someone who understands, (2) want information on prognostication, (3) lack of knowledge on how to and where to get support and (4) require knowledge on what to expect at the end of life. Conclusion: Caregivers have unmet needs and feel unprepared for the future. Implementation of future care planning by clinical teams should address patient and caregiver support needs and in turn alleviate caregiver burden. [ABSTRACT FROM AUTHOR]