Palliative Care and Social Practice最新文献

{"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}

{"title":"Grief and grief support needs in Canada: A mixed methods protocol.","authors":"Susan Cadell, David Kenneth Wright, Naheed Dosani, Jacques Cherblanc, Lauren Breen, Samar Aoun, Lydia Sequeira, Katherine Kortes-Miller, Amit Arya, Kelly Anthony, Christian Boudreau, Holly Prince, Marney Thompson, Mary Ellen Macdonald","doi":"10.1177/26323524251334180","DOIUrl":"https://doi.org/10.1177/26323524251334180","url":null,"abstract":"<p><strong>Background: </strong>In their lifetime, every person will experience the loss of someone they care about. In Canada, the COVID-19 pandemic, the ongoing opioid crisis, and the discovery of unmarked graves at residential schools have brought this into particular focus. Research and theory in the area of grief have evolved over the years. Grief literacy challenges us to better understand and support grief in all aspects of our society. The Public Health Model of Bereavement Support was theorized and tested in Australia. The supports people seek are explored and the model identifies low, medium, and high categories of risk of prolonged grief disorder.</p><p><strong>Objective: </strong>The purpose of this study is to advance public health understanding of grief and its support. The specific research objectives are to (1) test the Public Health Model of Bereavement Support in the Canadian context and (2) build a grounded theory of grief support.</p><p><strong>Design: </strong>This project uses a sequential mixed methods design.</p><p><strong>Methods: </strong>A Canada-wide survey in English and French will produce data that will be used to empirically test the Public Health Model of Bereavement Support. In the second phase, the grounded theory of grief support centers on voices that have not been widely heard in grief research. The mixed methods then fully elucidate grief and grief support in Canada.</p><p><strong>Results: </strong>This is the first study internationally to test this model in a (post)pandemic context, in a jurisdiction that legally permits medical assistance in dying, and in a context with an opioid crisis.</p><p><strong>Conclusion: </strong>The findings will allow us to better understand grief and the current realities of grieving, which has the potential to enhance the wellbeing of the millions of Canadians who are grieving.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"19 ","pages":"26323524251334180"},"PeriodicalIF":2.7,"publicationDate":"2025-05-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12065988/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144052309","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":"Developing a values-based interorganisational Care at the End-of-Life Collaborative framework for the Australian context: A mixed-methods, practice-based research protocol.","authors":"Carol Hope, Leah East, John Rosenberg, Melissa Taylor","doi":"10.1177/26323524251337491","DOIUrl":"https://doi.org/10.1177/26323524251337491","url":null,"abstract":"<p><strong>Background: </strong>As the population ages and the demand for quality care at the end of life increases, health costs are increasing, thus creating a perfect storm of need, outstripping the supply of palliative care services. Engaging communities to support care at the end of life through the establishment of values-based interorganisational Care at the End-of-Life Collaboratives is one approach to addressing this problem. Whilst there is an abundance of literature about collaboratives, understanding of those supporting care at the end of life is lacking.</p><p><strong>Objectives: </strong>The objectives of this research are to understand the contextual factors using an evaluation framework that support the success of values-based interorganisational Care at the End-of-Life Collaboratives to achieve system improvements at a regional level and develop a framework for establishing sustainable Care at the End-of-Life Collaboratives in jurisdictions across Australia.</p><p><strong>Design: </strong>This is a two-phase study that uses a mixed-methods case study and a Delphi methodology.</p><p><strong>Methods and analysis: </strong>Phase I data collection is based on the RE-AIM framework, which uses the Partnership Self-Assessment Tool (PSAT) and semi-structured interviews with Collaborative members and key stakeholders. A review of collaborative documentation, including meeting minutes and reports, will also be completed. Phase II will include a minimum of two surveys of the expert group recruited from the peak palliative care bodies across Australia. Quantitative data in this study will be analysed using descriptive statistics and frequency distributions. A reflexive approach to content analysis of qualitative data will be adopted.</p><p><strong>Ethics: </strong>This research is approved by the University of Southern Queensland Human Research Ethics Committee (approval ETH2023-0718).</p><p><strong>Discussion: </strong>Understanding the contextual factors that contribute to the sustainability of an existing Care at the End-of-Life Collaborative within Australia will enable the foundation of a framework for developing similar collaboratives, for refinement through expert consensus using Delphi methodology.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"19 ","pages":"26323524251337491"},"PeriodicalIF":2.7,"publicationDate":"2025-05-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12062592/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144032184","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":"Using discrete choice experiments to elicit palliative care preferences in lower middle-income countries: An exploratory study in Bhutan.","authors":"Tara Devi Laabar, Richard Norman, Christobel Saunders, Mahbub Ul Alam, Ian W Li","doi":"10.1177/26323524251334183","DOIUrl":"https://doi.org/10.1177/26323524251334183","url":null,"abstract":"<p><strong>Background: </strong>Design and delivery of specific palliative care in many lower middle-income countries such as Bhutan remains limited. Designing care programmes to respond to the needs of patients and family networks is essential, but evidence on these preferences is limited.</p><p><strong>Aim: </strong>We have conducted a discrete choice experiment on Bhutanese patients and family members to explore preferences for palliative care.</p><p><strong>Design: </strong>The discrete choice experiment consisted of 15 choice tasks in which each respondent considered two competing palliative care services. Data were collected through the recruitment of respondents in conjunction with the clinician support teams, with data collected from both patients and their family members. All responses were pooled across the groups and analysed using the conditional logit regression model.</p><p><strong>Setting/participants: </strong>Fifty-seven respondents (20 patients and 37 family members) out of 98 (50 patients and 48 family members) identified (58.2%) were recruited through the three large referral hospitals in Bhutan. Patients had to be diagnosed with an advanced illness or at the end-of-life phase, but be able to understand and be willing to complete the survey. Similarly, family members had to be willing and able to complete the survey, and to be defined as the primary caregiver by the patient.</p><p><strong>Results: </strong>Transparent information provision, cost, family training and use of traditional healing practices were keen drivers of choice, with location of care and place of death relatively less important.</p><p><strong>Conclusion: </strong>Our results will guide future service design decisions in Bhutan and demonstrate the need for localised preference studies to enable culturally appropriate care including the provision of traditional healing practices.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"19 ","pages":"26323524251334183"},"PeriodicalIF":2.7,"publicationDate":"2025-04-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12035126/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144049920","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":"Caregiver experience of specialist hospice palliative care in rural communities: A qualitative study exploring rural culture, hospice nurse characteristics, roles, and carer strategic ideas.","authors":"Rowan Daniel Beaumont Bell, Caren Amanda Barnett, Matthew Joseph Wilson, Philippa Marie Twigg","doi":"10.1177/26323524251332970","DOIUrl":"https://doi.org/10.1177/26323524251332970","url":null,"abstract":"<p><strong>Background: </strong>Barriers, facilitators, and inequity of access to rural palliative care have been explored from caregiver and healthcare worker perspectives. However, caregiver insights into specialist (secondary) hospice palliative care are sparse. This study facilitates rural people who cared for patients at end-of-life a chance to reflect on experiences and suggest improvements to specialist support in rural communities.</p><p><strong>Objectives: </strong>To explore how caregivers perceive a specialist hospice palliative care service, and how it could adapt to rural community needs.</p><p><strong>Design: </strong>Semi-structured interviews over 6 months with bereaved carers of patients under specialist hospice care. A general inductive approach to data analysis.</p><p><strong>Methods: </strong>Hospice Waikato; a regional specialist palliative care service. Carers were ineligible if bereaved <6 months and must have had service input within 2 years. Those with complex grief were excluded. Twenty-four participants were interviewed.</p><p><strong>Results: </strong>Themes were: 1. <i>Rural culture</i>; end-of-life care challenges and adaptations. 2. <i>Positive hospice nursing characteristics</i>; empathy, holism, and emotional support. 3. <i>Role of the hospice nurse</i>; was identified. 4. <i>Strategic ideas</i>; embedded community practitioners, increased resources for emotional support and weekends, and timely access to equipment.</p><p><strong>Conclusion: </strong>Adaptation is required by both carers and the specialist hospice team to overcome rural inequity. A healthcare navigator was desired with the suggestion that this could be the specialist hospice nurse. There is a need to explore the balance between tailoring care to different rural communities and providing consistent and equitable care. Future research could study this and/or compare stakeholder perceptions of different rural palliative care models.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"19 ","pages":"26323524251332970"},"PeriodicalIF":2.7,"publicationDate":"2025-04-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12035116/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144032165","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":"Colombia's 5-year public health strategy for palliative care: Implementation protocol.","authors":"Lina María Vargas-Escobar, Juan Esteban Correa-Morales, María Alejandra Umbacia, Marta Ximena León-Delgado, Erwin Hernandéz, Rene Francisco Abello Gomez, Emma Isabel Rodríguez Darabos, Carmen Rosy Ramírez, Miguel Antonio Sánchez-Cárdenas","doi":"10.1177/26323524251328036","DOIUrl":"https://doi.org/10.1177/26323524251328036","url":null,"abstract":"<p><strong>Background: </strong>In recent years, Colombia has evolved from having isolated palliative care services to becoming a leader in the field. The country has enacted pioneering palliative care legislation and established the Colombian Observatory of Palliative Care to support research and advocacy. These efforts have addressed regional needs and barriers, and Colombia has also developed compassionate communities to support those with serious illnesses. In line with global health initiatives, a comprehensive public health action plan has been created, focusing on underserved areas and including new legislation to enhance palliative care education. However, implementing these plans in conflict-affected regions remains a significant challenge. With support from the Ministry of Health, the Observatory will lead the implementation process, starting with stakeholder analysis and collaborative efforts to identify effective solutions.</p><p><strong>Objectives: </strong>Through stakeholder focus groups, this study aims to develop a comprehensive methodology for implementing the National Palliative Care Plan in three rural regions of Colombia.</p><p><strong>Design and methods: </strong>Through a participatory action research approach, we conducted two distinct workshops. The first workshop is dedicated to analyzing the current context and generating feasible solutions, while the second workshop builds on these solutions to formulate collaborative strategies. Each workshop engages a diverse array of stakeholders, including patients, healthcare professionals, and policymakers, among others, to ensure comprehensive representation. The workshops are organized with presentations, facilitated discussions, and roundtable sessions to address various palliative care domains. Data gathered from these discussions are recorded, transcribed, and subjected to thematic analysis to report the process of building collaborative networks in palliative care. This process will facilitate the development of actionable, sustainable solutions tailored to regional needs and provide a methodological framework that other countries can adapt to implement their palliative care plan.</p><p><strong>Conclusion: </strong>There is growing health interest in developing national palliative care plans. However, effective implementation remains challenging, particularly in low- and middle-income countries. This protocol describes the co-creation of a stakeholder-focused methodology for developing palliative care in Colombia.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"19 ","pages":"26323524251328036"},"PeriodicalIF":2.7,"publicationDate":"2025-04-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12033551/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144032171","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 value of home-based advance care planning in addressing existential concerns among older Norwegian patients with cancer and their relatives: A narrative ethnographic study.","authors":"Line Elida Festvåg, Beate Lie Sverre, Ørnulf Paulsen, Grethe Eilertsen","doi":"10.1177/26323524251330658","DOIUrl":"https://doi.org/10.1177/26323524251330658","url":null,"abstract":"<p><strong>Background: </strong>The importance of holistic and person-centered palliative care is widely recognized, but the existential dimensions remain less focused. There is a need for more knowledge about the existential content in advance care planning (ACP) and the significance thereof in the context of home-based palliative care from the perspective of patients and their relatives.</p><p><strong>Objective: </strong>This study aimed to explore home-based ACP as an existential conversation when conducted as a part of a palliative-care coordination meeting, and how older home-dwelling patients with advanced cancer and their relatives experience its significance.</p><p><strong>Design: </strong>A narrative ethnographic design was employed.</p><p><strong>Methods: </strong>The reported empirical material is based on participant observations of the home-based ACP conversations and follow-up interviews with eight patients and their relatives. The analytical approach was guided by the theoretical framework of narrative ethnography.</p><p><strong>Results: </strong>The ACP conversations strongly supported the patients and their relatives in discussing existential concerns, such as existential fear, lived lives, and decision-making at the end of life. The significance of these conversations extended beyond the initial conversation by profoundly influencing subsequent family interactions and enhancing their ability to make informed and meaningful decisions regarding future medical treatment and care.</p><p><strong>Conclusion: </strong>Home-based ACP can be a valuable approach for addressing the existential concerns of older patients and their relatives in the final stages of life. Home-based ACP conversations start a process that continues within the family context and affects their relational dynamics and communication patterns. This study indicates that the home environment fosters discussions about past, present, and future lives, shaping the content and outcomes of home-based ACP.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"19 ","pages":"26323524251330658"},"PeriodicalIF":2.7,"publicationDate":"2025-04-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12033682/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144038745","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":"Experiences of hospice staff beyond the frontlines during COVID-19: A qualitative secondary analysis study.","authors":"Thanga Harini Sundaramoorthy, John I MacArtney, Abi Eccles","doi":"10.1177/26323524251327804","DOIUrl":"https://doi.org/10.1177/26323524251327804","url":null,"abstract":"<p><strong>Background: </strong>The COVID-19 pandemic presented different challenges and work pressures for hospice staff. Staff who continued to work during the emergency public health period had to redefine not only their norms at work, but also the norms of their home and personal lives. Research on hospice staff, and broadly healthcare staff, mainly explores their professional roles and responsibilities, often overlooking the personal experiences and challenges that they encountered outside of this, especially during the first 2 years of the pandemic where their work and commitment persevered amidst unprecedented circumstances.</p><p><strong>Objective: </strong>To explore the impacts of the COVID-19 pandemic on the home life of hospice staff and identify opportunities to support staff in the future.</p><p><strong>Design: </strong>Qualitative interpretive secondary analysis study.</p><p><strong>Method: </strong>Reflexive thematic analysis of qualitative in-depth interviews of hospice staff (<i>n</i> = 25), conducted across seven hospices, to explore the impact and implications of the pandemic on hospice care.</p><p><strong>Results: </strong>Three main themes were identified: (1) Blurred margins: Participants discussed facing difficulty separating work and home life and taking stresses and thoughts about work home. (2) Isolation, loneliness and social interactions: Staff described being anxious and lonely during this period, and not feeling like socialising after demanding workdays. (3) Disruption to family and personal commitments: Some staff felt unable to see or support their parents, partners and children during the pandemic subsequently impacting their psychological and emotional well-being.</p><p><strong>Conclusion: </strong>Hospice staff compromised aspects of their personal life and family responsibilities during the pandemic to carry out their role at work. Workplaces and organisations should aim to support hospice staff more broadly to help with managing work-related pressures and balancing personal commitments in future emergency periods.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"19 ","pages":"26323524251327804"},"PeriodicalIF":2.7,"publicationDate":"2025-04-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12033463/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143986573","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":"Till death do us Part: experiences of migrant live-in care workers facing the death of their care recipients - a study from Israel.","authors":"Daniella Arieli, Gila Amitay, Dalit Yassour-Borochowitz","doi":"10.1177/26323524251326105","DOIUrl":"10.1177/26323524251326105","url":null,"abstract":"<p><strong>Background: </strong>As ageing in place becomes more widespread, the burdens on relatives of older people at advanced stages of illness, particularly those reaching life's end, become greater, requiring a level of support and responsibility that often exceeds the families' abilities. A common solution is employing live-in care workers, frequently migrant workers.</p><p><strong>Objectives: </strong>This study explores how live-in migrant care workers experience and cope with their care recipients' end-of-life and death phases.</p><p><strong>Methods: </strong>This study is based on an ethnographic study that included 37 interviews with live-in migrant care workers employed in the homes of older adults in Israel.</p><p><strong>Results: </strong>We identified four themes: (1) Loneliness and fear due to the need to make decisions; (2) Devotion; (3) Trauma, loss and disenfranchised grief; and (4) The impact of the national immigration policy. The first two themes related to the care workers' pre-death experiences, the third their post-death experiences and the last extraneous factors affecting end-of-life care.</p><p><strong>Discussion: </strong>Live-in care workers, often the last to accompany their care recipients in their final moments, develop a sense of devotion and responsibility, often leading to feelings of fear and loneliness. Their lower occupational status and sociocultural foreignness affect them in the pre-death and post-death phases. The local immigration policy also influences their motivation to work with palliative patients.</p><p><strong>Conclusion: </strong>Applying a feminist critical social care perspective, we recommend policy and social attitude changes regarding live-in migrant care workers' role in end-of-life care.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"19 ","pages":"26323524251326105"},"PeriodicalIF":2.7,"publicationDate":"2025-03-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11960149/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143765315","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":"Neuropalliative care for Parkinson's disease in India: a qualitative exploration of healthcare professionals' perspectives.","authors":"Prerna Sharma, Upasana Baruah, Suman Kushwaha, Akanksha Yadav, Rajinder K Dhamija","doi":"10.1177/26323524251326952","DOIUrl":"10.1177/26323524251326952","url":null,"abstract":"<p><strong>Introduction: </strong>The prevalence of Parkinson's disease (PD) in India is roughly 10% of the global burden, which is a considerable public health concern. The burden on healthcare services in India is substantial due to the variations in PD prevalence and the country's large population. The unique cultural, ethnic, and social differences in India give rise to distinct needs among PD patients and their caregivers. Neuropalliative care (NPC) is an emerging subspecialty with a holistic approach that requires a unique skill set and the involvement of allied healthcare professionals who play a crucial role in providing integrated services.</p><p><strong>Aim: </strong>The objective of this study is to explore the experiences and perspectives of the primary and allied healthcare professionals working with persons with PD in India.</p><p><strong>Methods: </strong>The current study employed a qualitative, exploratory, inductive research design, using in-depth interviews with 15 primary and allied healthcare professionals who had more than 5 years of experience working with persons with PD. Participants worked in varied settings such as academic hospitals, rehabilitation services, and tertiary care hospitals.</p><p><strong>Results: </strong>The mean years of work experience for the participants were 7.5 ± 3.26 years with a mean number of 30.8 ± 14.8 patients with PD per month. Thematic analysis of the data revealed 5 main themes and 20 subthemes. The major themes revealed were understanding of NPC, the needs of patients and caregivers of PD, barriers and challenges, interventions for patients and caregivers, facilitators, and components of NPC for PD.</p><p><strong>Conclusion: </strong>To provide a structured stepped-care approach to managing PD, there is a need to understand the psychosocial and palliative care aspects of PD in patients and caregivers in the Indian context. Adequate training and resource allocation are needed for NPC to be adopted in clinical care.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"19 ","pages":"26323524251326952"},"PeriodicalIF":2.7,"publicationDate":"2025-03-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11960147/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143765312","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}