Palliative Care and Social Practice最新文献

{"title":"\"I don't think service changed, I think people changed\": Palliative care delivery in Aotearoa/New Zealand after COVID-19.","authors":"Rosemary Frey, Tess Moeke-Maxwell, Jackie Robinson, Deborah Raphael, Lisa Williams, Erica Munro, Jenny Thurston, Merryn Gott","doi":"10.1177/26323524251343095","DOIUrl":"10.1177/26323524251343095","url":null,"abstract":"<p><strong>Background: </strong>As a result of COVID-19 restrictions, palliative care services in New Zealand and across the world needed to adapt rapidly and creatively to find new ways of working, revising, and establishing new policies and practices. This article reports the findings of phase I of an 18-month study examining changes in hospice care delivery in Aotearoa/New Zealand in the wake of COVID-19.</p><p><strong>Objective: </strong>This study aimed to explore the motivations underpinning adaptations and innovations in the delivery of palliative care in the wake of COVID-19.</p><p><strong>Design: </strong>Transdisciplinary Action Research and Partnership approaches were utilised.</p><p><strong>Method: </strong>A thematic analysis was conducted of open-ended telephone, video, and in-person questionnaire data collected from January to August 2024 from a diverse group of stakeholders. Our findings explored the motivations for health professional practice changes in the realms of competence, relationships, and autonomy.</p><p><strong>Findings: </strong>Changes in behaviour involved streamlining and adapting policies and services, using technology to facilitate communication, building collaborative connections, and activating health professionals, families, and Indigenous empowerment.</p><p><strong>Conclusion: </strong>Palliative care services needed to adapt rapidly and creatively to the threats posed by COVID-19. The threats posed were a motivator to shift thinking about palliative care delivery regarding services, relationships, and empowerment. This shift in thinking led to changes in ways of working, revising, and establishing new policies and practices. The driving force underpinning the changes and innovations is the desire to provide patient-centred care. Indeed, the findings build a case for patient-centred, sustainable, and effective innovation. From the perspective of health professionals, the findings may inform strategies to sustain new practices in delivering quality palliative care. Additionally, they may also provide insights into possible methods to grow individual and community capacity to face future pandemics.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"19 ","pages":"26323524251343095"},"PeriodicalIF":2.7,"publicationDate":"2025-06-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12188070/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144498263","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Medical assistance in dying in Canada: A review of regulatory practice standards and guidance documents for physicians.","authors":"Eliana Close, Mona Gupta, Jocelyn Downie, Ben P White","doi":"10.1177/26323524251338859","DOIUrl":"10.1177/26323524251338859","url":null,"abstract":"<p><strong>Background: </strong>Medical assistance in dying (\"MAiD\") became legal across Canada in 2016, and in Québec in 2015. Provincial/territorial regulatory bodies play a critical role in MAiD as they can issue binding requirements on health practitioners. Law and regulatory standards are the \"twin pillars\" of MAiD regulation, yet the content of MAiD practice standards for physicians is unstudied.</p><p><strong>Design: </strong>This article analysed MAiD guidance for physicians from Canadian medical regulators (often called the \"College of Physicians and Surgeons\"), using a qualitative descriptive approach, informed by regulatory space theory.</p><p><strong>Methods: </strong>We identified MAiD-specific regulatory documents (practice standards and related documents) using web-based searches and follow-up inquiries. We analysed the documents using qualitative descriptive analysis and the Framework Method, facilitated by NVivo. The analysis focused on identifying areas where regulators issued guidance beyond the law.</p><p><strong>Results: </strong>We identified 15 regulatory documents from 11 of the 13 provinces and territories. We determined that these documents primarily outline the law without detailed guidance on how to apply it. We identified eight areas for which regulators provided guidance that went beyond the MAiD-specific legislation, most relating to core aspects of medical practice, such as competency, documentation, and patient-centred care. The rights and obligations of conscientious objectors were a predominant focus in all documents. The documents largely lacked guidance about the meaning of terms in the legislation. There was also variation in standards between provinces and territories; the documents focused on similar topics but varied in their policy choices. Physicians in each province/territory are therefore subject to differing expectations (to some extent).</p><p><strong>Conclusion: </strong>This study highlights a gap in guidance on the meaning of legal terms in the <i>Criminal Code</i> MAiD provisions and highlights interprovincial/territorial variability in MAiD practice standards and guidance for physicians. The study demonstrates the risks of fragmentation inherent in polycentric regulation, which can be challenging for physicians to navigate.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"19 ","pages":"26323524251338859"},"PeriodicalIF":2.7,"publicationDate":"2025-06-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12188091/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144498264","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Nurses' attitudes toward death in Oman: Prevalence and correlates in a nationwide sample.","authors":"Eilean Rathinasamy Lazarus, Joshua K Muliira, Omar Al Zaabi, Murtadha K Al-Khabori, Mudhar Mohammed Al Adawi, Qasim Al Mamari","doi":"10.1177/26323524251348498","DOIUrl":"10.1177/26323524251348498","url":null,"abstract":"<p><strong>Background: </strong>Death is an unavoidable feature of the human experience, and nurses play a critical role in caring for patients at the end of life. Nurses' attitudes toward death reflect their individual feelings toward death but may affect the quality of care provided at the end of life.</p><p><strong>Objectives: </strong>To explore the nurses' attitudes toward death and the factors that may affect the quality of end-of-life care delivery in Oman among patients cared for in tertiary hospitals.</p><p><strong>Design: </strong>A cross-sectional study design.</p><p><strong>Methods: </strong>The study explored the nurses' attitudes toward death in Oman through a nationwide survey of the major governmental hospitals in Oman. The Death Attitude Profile-Revised scale was adopted to collect data from 1469 nurses working in tertiary hospitals using simple random sampling and population proportionate sampling methods.</p><p><strong>Results: </strong>The nurses in Oman were Omani (46.8%) or Indian (43.7%) and had a bachelor's degree in nursing education (54.5%), with a mean age and clinical experience being 35 and 11 years, respectively. The mean scores showed that they had slightly more positive (4.78 ± 0.92) than negative (4.30 ± 0.94) attitudes toward death. Multiple linear regression analysis was performed to explore correlates of negative and positive death attitudes. The negative death attitudes were significantly associated with nationality (β = -1.25, <i>p</i> = 0.007), clinical experience (β = 0.94, <i>p</i> = 0.012), and self-rated spirituality (β = 0.92, <i>p</i> = 0.043). The positive death attitudes were significantly associated with nationality (β = 2.40, <i>p</i> = 0.009), age (β = 3.71, <i>p</i> < 0.001), and clinical experience (β = 2.40, <i>p</i> = 0.004).</p><p><strong>Conclusion: </strong>The current study shows that nurses in Oman have slightly more positive than negative attitudes toward death. The positive death attitudes were significantly associated with increasing age among nurses and their clinical experience. The negative attitudes were significantly associated with increasing age and self-rated spirituality.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"19 ","pages":"26323524251348498"},"PeriodicalIF":2.7,"publicationDate":"2025-06-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12182607/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144477141","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Intersecting challenges: Cancer caregivers' experiences during COVID-19.","authors":"Charlotte R Weiss, Rachel Johnson-Koenke, Karen B Hirschman","doi":"10.1177/26323524251346226","DOIUrl":"10.1177/26323524251346226","url":null,"abstract":"<p><strong>Background: </strong>The COVID-19 pandemic introduced a landscape that contributed to many unknowns and unmet needs among cancer family caregivers and their care recipients.</p><p><strong>Aim: </strong>This secondary analysis qualitative study aimed to explore cancer family caregiver narratives for the societal and institutional contexts of caring for a person with advanced cancer during the early years of COVID-19.</p><p><strong>Design: </strong>Narrative inquiry was used in the parent study to co-create caregiver narratives.</p><p><strong>Methods: </strong>Narrative thematic analysis was used to identify themes of COVID-19 from five cancer caregiver narratives.</p><p><strong>Results: </strong>Thematic threads of COVID-19 were identified as short stories of tension woven throughout the caregiver narratives: advocacy for quality healthcare, the need to protect their person from the virus and medical/institutional disregard, financial strain, lack of social support, and the long goodbye. The findings further illustrate how COVID-19 and cancer intersect to influence a caregiver's healthcare experience and well-being.</p><p><strong>Conclusion: </strong>Family-centered care strategies and policy changes are needed to better meet the complex needs of cancer caregivers during a pandemic and beyond.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"19 ","pages":"26323524251346226"},"PeriodicalIF":2.7,"publicationDate":"2025-06-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12163250/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144303042","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"What knowledge and skills are needed for community volunteers to take on a signposting role in community-based palliative care? A qualitative study.","authors":"Sabet Van Steenbergen, Steven Vanderstichelen, Luc Deliens, Sarah Dury, Kenneth Chambaere","doi":"10.1177/26323524251334184","DOIUrl":"10.1177/26323524251334184","url":null,"abstract":"<p><strong>Background: </strong>Community volunteers in palliative care (PC) have a unique position between healthcare professionals, community residents with care needs, and informal caregivers, offering complementary care and potentially playing a key signposting role. However, they need specific support in recognizing, describing, and communicating patient needs effectively, which can be transferred through training. The specific knowledge and skills required to take on this signposting role remain unclear.</p><p><strong>Aims: </strong>To explore (1) experiences of communication and information sharing between community volunteers and healthcare professionals and (2) the desired and required knowledge and skills volunteers need to recognize, describe, and communicate PC needs to healthcare professionals.</p><p><strong>Methods: </strong>A qualitative study design was used, conducting focus groups with community volunteers and healthcare professionals, and individual semi-structured interviews with community residents with PC needs and informal caregivers. Inductive thematic analysis was applied.</p><p><strong>Results: </strong>Seven focus groups with 15 community volunteers and 20 healthcare professionals, and 10 interviews with 6 community residents with care needs and 4 informal caregivers were conducted. Findings revealed limited contact between volunteers and professionals and a lack of mutual awareness of each other's involvement, with professionals often distrusting volunteers as communication and collaboration partners. Perceived hierarchy made volunteers hesitant to communicate with professionals. Communication was typically one-directional, with volunteers sharing patient information. There were no established procedures for communication and information sharing. To fulfill their signposting role, volunteers need knowledge of PC needs and community resources, and strong relational, communication, and observation skills.</p><p><strong>Conclusion: </strong>Volunteers need extensive skills to take on their signposting role. Training programs could boost volunteers' self-confidence by (1) increasing awareness and understanding of the community volunteer role and signposting function; (2) enhancing knowledge of PC, PC needs, and community services; (3) strengthening communication with resident's care needs, informal caregivers, and healthcare professionals. For the sake of patient care, it is important to improve communication, relationships, and collaboration between volunteers and professionals.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"19 ","pages":"26323524251334184"},"PeriodicalIF":2.7,"publicationDate":"2025-06-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12163260/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144303043","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Palliative care policy and practice in Kerala, India: Implications for Sustainable Development Goal 3-Health and well-being.","authors":"S Gowri, E P Abdul Azeez","doi":"10.1177/26323524251344312","DOIUrl":"10.1177/26323524251344312","url":null,"abstract":"<p><p>The higher prevalence and incidents of chronic and life-threatening illnesses and the aging population living with morbidity and life-limiting conditions necessitate the need for care provisions like palliative care globally. Palliative care strives for the quality of life of patients with terminal illnesses and serious health conditions and their families. However, globally, access to palliative care remains very limited. The situation is similar in India, except for Kerala, where palliative care access to the needy population is almost universal. Kerala's community palliative care model is globally acclaimed for its operation, which includes community participation and sustainability. The palliative care policy of Kerala, which was the first one in Asia, was a significant milestone in the palliative care movement of Kerala, as it mandated the interventions from government measures and further strengthened the community-managed palliative care interventions. The palliative care efforts in Kerala have significantly influenced the health scenario. However, discussion on the role of palliative care in achieving sustainable development goals (SDGs) is minimal. In this context, this article explores the policy and practices of palliative care in Kerala and its contribution to SDG-3, health and well-being. We have surrounded the discussion on the context of palliative care interventions and Sustainable Development Goal 3 through the unique features of the Kerala model of palliative care and its contribution to the healthcare scenario of the state. Through available literature and from the researchers' first-hand experience, this article explores the reciprocity of palliative care interventions, policy, healthcare programs, and SDG-3. Documenting the potential of Kerala's community-based palliative care for SDG-3 has implications for replications of this model in similar contexts.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"19 ","pages":"26323524251344312"},"PeriodicalIF":2.7,"publicationDate":"2025-06-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12149619/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144267456","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The influence of informal caregivers on the place of death: A study within a home palliative care team.","authors":"Cristina Pereira, Hugo Ribeiro, Júlia Magalhães, João Rocha-Neves, Marília Dourado, José Paulo Andrade","doi":"10.1177/26323524251336764","DOIUrl":"10.1177/26323524251336764","url":null,"abstract":"<p><strong>Background: </strong>The increase in the prevalence of chronic, complex, or life-limiting diseases is intrinsically associated with population aging. Therefore, it is necessary to reflect on health and social care, and community palliative care can play a fundamental role in responding to this phenomenon.</p><p><strong>Objective: </strong>This research aimed to understand the factors that affect the care place at the end of life and death, identifying the informal caregivers' profile, the challenges of the all-care process, and the impact of a Community Palliative Care Team (CPCT).</p><p><strong>Design: </strong>An observational retrospective cohort study was carried out.</p><p><strong>Methods: </strong>The population of this study was caregivers of patients monitored by a Community Palliative Care Support Team between 2020 and 2022. In the sample, 78 caregivers were included according to inclusion and exclusion criteria, of whom 44 caregivers answered, representing a 55.70% response rate.</p><p><strong>Results: </strong>Although it is not possible to generalize as we do not have statistically significant correlations, this study concludes that the informal caregivers included in the sample have a profile similar to the national profile in Portugal. They reported high emotional exhaustion, but also physical and financial exhaustion, as the primary care challenges. In addition, the results show that managing the progression of the disease was also highlighted as a challenge by 63.6% of caregivers. The impact of the team monitoring was also evaluated as positive and having an effect in achieving the patient's preference regarding the place of death.</p><p><strong>Conclusion: </strong>CPCT and informal caregivers are two factors intrinsically linked and influencing the place of death at home when there is congruence between the patients and their caregivers' choices. Social resources and investment in a support network outside the hospital are essential to fulfilling the wishes of patients and families, allowing dignity and quality of life for both. From a medical point of view, these patients are so well or better treated in the community than in the hospital wards.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"19 ","pages":"26323524251336764"},"PeriodicalIF":2.7,"publicationDate":"2025-06-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12144353/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144250092","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"How can healthcare professionals better support family caregivers in the final days of life: Could the \"Family's Voice Diary\" help? A qualitative study based in an area of high socio-economic deprivation.","authors":"Donna Wakefield, Zoe Booth, Michaela Fay, Matthew Breckons","doi":"10.1177/26323524251340707","DOIUrl":"10.1177/26323524251340707","url":null,"abstract":"<p><strong>Background: </strong>Family caregivers play a vital role in supporting patients at the end of life, a role that can impact their own well-being. Healthcare professionals may feel unprepared to support caregivers. The Family's Voice Diary (FVD) was co-developed with bereaved carers and a wide range of healthcare professionals as a tool to improve caregiver support.</p><p><strong>Objectives: </strong>To understand challenges carers face in receiving support and whether the FVD has the potential to improve this.</p><p><strong>Design: </strong>Qualitative interviews with thematic analysis.</p><p><strong>Methods: </strong>Family's Voice Diaries were provided to hospital, hospice and community nursing teams, to be offered to carers when a patient was in their final days of life. Each diary invited carers to return the diary if they wished to volunteer for an interview and/or consent to analysis of the content of their completed FVD. Adverts were circulated inviting healthcare professionals to interview.</p><p><strong>Results: </strong><i>n</i> = 23 diaries were returned, which included written reflections and notes used as an aide memoire to discuss with healthcare professionals. Qualitative interviews were conducted with <i>n</i> = 6 healthcare professionals and <i>n</i> = 1 bereaved carer. Main themes included the carer's reluctance to ask for support and healthcare professionals feeling unprepared to discuss dying. Using the diary as a communication aid to build a collaborative relationship with staff was valued. Barriers to implementation included a lack of understanding of the purpose of the diary.</p><p><strong>Conclusion: </strong>This study adds to the evidence base that there is a need for further carer support and clearer communication at the end of life. The diary appears to be valued as an optional addition to prompt communication, aid self-reflection and signpost to further support. Clearer instruction/training on the purpose of the diary could improve its implementation. Further training for healthcare staff, to enable them to feel more comfortable discussing dying with carers and be able to offer support, would be beneficial.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"19 ","pages":"26323524251340707"},"PeriodicalIF":2.7,"publicationDate":"2025-05-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12102567/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144143870","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The role of a death and grief festival in cultivating awareness of serious illness, death, and bereavement at university: A qualitative study of students' and staff's motivations and experiences with Compassionate Week activities.","authors":"Hanne Bakelants, Sarah Dury, Kenneth Chambaere, Luc Deliens, Steven Vanderstichelen, Filip Van Droogenbroeck, Joachim Cohen","doi":"10.1177/26323524251336766","DOIUrl":"10.1177/26323524251336766","url":null,"abstract":"<p><strong>Background: </strong>At different points in our lives, regardless of our age, gender, location, or socioeconomic background, we all face experiences of serious illness, death, and bereavement. Yet, these topics are often avoided in communities and are predominantly addressed within professional healthcare narratives and practices. In recent years, death and grief festivals have been planned to offer \"ways in\" to these topics via participatory, creative, educational, and cultural activities. In Belgium, the Vrije Universiteit Brussel (VUB) University hosted its first death and grief festival on the university campus, the Compassionate Week, as a part of the Compassionate University program.</p><p><strong>Objectives: </strong>This study aims to gain a deeper understanding of students' and staff's motivations for engaging in the Compassionate Week activities and their experiences of the activities they attended.</p><p><strong>Design: </strong>A qualitative descriptive research design was used to understand the motivations and experiences of students and staff who participated in the Compassionate Week activities.</p><p><strong>Methods: </strong>A total of 94 individual semi-structured interviews were conducted with students and staff.</p><p><strong>Results: </strong>A thematic analysis resulted in three overarching reasons for participating in the Compassionate Week activities: (i) to help with one's own grief; (ii) to support friends or colleagues; and (iii) to learn about death, bereavement, and the support offered by the university. Additionally, three main types of experience were constructed from participants' reflections on the activities. The activities (i) created openness to express and share experiences of loss and bereavement, (ii) encouraged compassion (i.e., reflecting on and acting upon the suffering of others), and (iii) raised awareness of serious illness, death, and bereavement as everyday experiences in school and work life.</p><p><strong>Conclusion: </strong>Our study suggests that death and grief festivals, such as the Compassionate Week, can contribute to greater emotional and practical support for students and staff confronted with the experiences of serious illness, death, or bereavement.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"19 ","pages":"26323524251336766"},"PeriodicalIF":2.7,"publicationDate":"2025-05-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12102561/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144143873","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A critical examination of 'family' caregiving at the end of life in contexts of homelessness: Key concepts and future considerations.","authors":"Ashley Mollison, Kelli I Stajduhar, Marilou Gagnon, Ryan McNeil","doi":"10.1177/26323524251336765","DOIUrl":"https://doi.org/10.1177/26323524251336765","url":null,"abstract":"<p><p>Identifying and addressing inequities in palliative care is an area of growing interest and importance. In this critical essay, we aim to challenge embedded assumptions about 'family' caregiving in white, Western systems (e.g. that of the nuclear family as carers) and focus on how the social determinants of health (SDOH; e.g. income and social protection, housing, education, food security) affect access to, and quality of, care at the end of life. More specifically, our analysis pays attention to what shapes the SDOH themselves including how racism, classism, heterosexism, and ableism become embedded and sustained in health and social institutions including palliative care. We begin by providing a brief discussion of the study of 'family' including the nuclear family standard and fictive kinship as an 'alternative' family form. Next, we focus on fictive kinship in two diverse populations - (1) street-involved youth who form street families; and (2) older adults who access care beyond nuclear families - that challenge embedded assumptions and help set a foundation for thinking about family and caregiving in contexts of inequities. Drawing on short vignettes, we then focus on emerging issues in palliative care and 'family' caregiving in contexts of homelessness and housing vulnerability. These issues include how caregivers in contexts of homelessness are, themselves, facing structural vulnerability; bio-legal family estrangement, reunification, and privileging; and how community service workers are filling both formal and informal caregiving roles. We conclude by delineating ongoing questions, research and practice gaps, and suggestions for future research in this area.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"19 ","pages":"26323524251336765"},"PeriodicalIF":2.7,"publicationDate":"2025-05-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12075969/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144081007","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}