Palliative Care and Social Practice最新文献

{"title":"Fostering timely integrated palliative care in nursing homes through critical companionship: experiences from a Padi-Palli interventional study in France.","authors":"Emmanuel Bagaragaza, Benoite Umubyeyi, Danièle Leboul","doi":"10.1177/26323524241293819","DOIUrl":"10.1177/26323524241293819","url":null,"abstract":"<p><strong>Background: </strong>One of the fundamental pillars of integrating a palliative approach in nursing home care is increasing professional competencies and institutional capacity. However, conventional training designs have been proven to fall short of supporting this integration. This paper details the results of a practice development intervention that used critical companionship as a learning design to facilitate the integration of a palliative approach in the care of nursing home residents in France.</p><p><strong>Objectives: </strong>This study aimed to explore the perceived outcomes of Padi-Palli critical companionship in supporting the integration of a palliative approach in the care of residents in nursing homes in France.</p><p><strong>Design: </strong>Qualitative multiple case study situated within a constructivist theoretic lens.</p><p><strong>Methods: </strong>This qualitative multiple case study is part of a larger interventional mixed-method study. Nurses with palliative care clinical expertise facilitated experiential learning with nursing home professionals for 10 months spread across three phases. At the end of the intervention, a purposive sampling method was used to select professionals from six nursing homes that participated, including leaders and critical companions. Focus groups and individual interviews were used to collect data between February 2023 and March 2024. Data analysis followed Braun and Clarke's reflexive thematic analysis.</p><p><strong>Results: </strong>Four interrelated themes explained how Padi-Palli critical companionship enhanced the palliative care competencies of professionals, improved nursing home palliative care practices, supported organisational practices for palliative care and facilitated collaborative learning at the bedside. The collaborative and co-creative principles that informed the delivery of the Padi-Palli critical companionship program facilitated a culture shift towards integrating a palliative approach in resident care at individual, team and organisational levels.</p><p><strong>Conclusion: </strong>Critical companionship offers an innovative practice development approach that can support the delivery of timely palliative care for residents in nursing homes.</p><p><strong>Trial registration: </strong>ID-RCB 2020-A01832-37.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-11-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11533194/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142576574","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":"Experience or perception: What healthcare providers need when using the Utrecht Symptom Diary-4 Dimensional, a mixed-methods study.","authors":"Tom Lormans, Everlien de Graaf, Carlo Leget, Saskia Teunissen","doi":"10.1177/26323524241281748","DOIUrl":"10.1177/26323524241281748","url":null,"abstract":"<p><strong>Background: </strong>The Utrecht Symptom Diary-4 Dimensional (USD-4D), an adaptation of the Edmonton Symptom Assessment System, supports healthcare providers (HCPs) in identifying, monitoring, and exploring multidimensional symptoms and needs of patients in the palliative phase. For the USD-4D to be optimally implemented in clinical palliative care, it is essential to know and understand the needs of HCPs when using it.</p><p><strong>Objective: </strong>To identify and interpret the needs of HCPs when using the USD-4D in clinical palliative care, operationalized as perceived facilitators and barriers.</p><p><strong>Design: </strong>An explanatory mixed-methods study with a sequential design.</p><p><strong>Methods: </strong>Data were collected between October 2019 and September 2020. In phase I, quantitative data were collected through a survey targeting Dutch HCPs working in palliative care. Facilitators were identified as items answered positively by ⩾80% of participants, while barriers were identified as items answered negatively by ⩾20% of participants. In phase II, these identified facilitators and barriers were explored in depth through mixed composition focus groups. The Capability-Opportunity-Motivation-Behavior (COM-B) model was utilized to contextualize and interpret the perceived facilitators and barriers.</p><p><strong>Results: </strong>A total of 122 HCPs completed the survey, with 95% of the respondents being women with a mean age of 48 years and 72% being nurses. Additionally, 53% of the respondents had no prior experience with the USD-4D. In phase II, 21 HCPs participated in focus groups. 95% of the participants were women with a mean age of 49 years and 67% being nurses. HCPs pinpointed facilitators primarily related to the potential benefits of the USD-4D for daily patient care. Conversely, the identified barriers included issues related to HCPs' behavior, knowledge gaps, uncertainty regarding their abilities and attitudes toward the USD-4D, and technical obstacles.</p><p><strong>Conclusion: </strong>Facilitators and barriers across all facets of the COM-B model were recognized, with a notable emphasis on motivational barriers. It should be acknowledged that facilitators and barriers can evolve throughout the implementation process, underscoring the importance of viewing implementation and integration as fluid and continuous endeavors. Facilitators and barriers are closely linked to HCPs' reflective capacities, emphasizing the need for tailored intervention strategies that align with different stages of USD-4D implementation.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-10-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11528593/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142569635","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":"Willingness to be present throughout patient death via medical aid in dying in a national sample of interdisciplinary US hospice clinicians: a content analysis of rationales.","authors":"Todd D Becker, Cindy L Cain, John G Cagle, Joan K Davitt, Nancy Kusmaul, Paul Sacco","doi":"10.1177/26323524241288881","DOIUrl":"10.1177/26323524241288881","url":null,"abstract":"<p><strong>Background: </strong>Although medical aid in dying (MAID) legalization continues to expand across the United States, limited research has elucidated attitudes toward its clinical provision, especially in terms of clinician presence.</p><p><strong>Objective: </strong>The objective of the current study was to explore attitudes toward presence throughout a patient's death via MAID in hospice physicians, nurses, social workers, and chaplains. Aims included (1) characterizing willingness to be present throughout patient death via MAID and (2) describing rationales for willingness.</p><p><strong>Design: </strong>We employed a cross-sectional design.</p><p><strong>Methods: </strong>A national convenience sample of interdisciplinary hospice clinicians in the United States (<i>N</i> = 413) completed a self-administered, mixed-method survey via Qualtrics. A quantitative item assessing participants' willingness (no, unsure, yes) to be present throughout a patient's death via MAID preceded a qualitative probe inquiring about their rationales behind their previous response. Quantitative responses were characterized through frequencies and percentages. Qualitative responses within each resulting quantitative subsample were content analyzed for surface-level meaning using inductive coding.</p><p><strong>Results: </strong>Participants who were willing to be present (<i>n</i> = 305 [74%]) attributed their willingness to personal support, definitions of quality clinical care, and values from their professional training. Some engaged in boundary setting, describing particular conditions under which they would be willing to be present. Those who were unwilling (<i>n</i> = 63 [15%]) noted personal objections to the concept of MAID, personal objections to MAID participation, and perceptions of MAID's misalignment with healthcare. Those who were unsure (<i>n</i> = 45 [11%]) premised their responses on ambivalence and a lack of experience, both of which precluded formulating a definitive position.</p><p><strong>Conclusion: </strong>Although three-quarters of participants were willing to be present during MAID, qualitative responses revealed great nuance within and across quantitative subsamples. Hospice clinicians would benefit from greater professional guidance and support pertaining to MAID.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-10-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11528647/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142569656","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":"Understanding end-of-life doula care provision: reporting on the design of a bereavement survey to evaluate doula support.","authors":"Kirsten Bashir, Emma Clare, Catherine Pestano, Esther Ramsey-Jones, Erica Borgstrom","doi":"10.1177/26323524241273489","DOIUrl":"10.1177/26323524241273489","url":null,"abstract":"<p><strong>Background: </strong>Delivery of consistent patient-centred care at end-of-life care continues to challenge healthcare providers and research continues to suggest that peoples' needs are not being reliably met. Consequently, healthcare services are looking to innovate how support is provided, such as commissioning doulas to support dying people and those close to them.</p><p><strong>Objective: </strong>Within the United Kingdom, there is little existing research about peoples' experience of receiving end-of-life doula support. This paper outlines the design of a survey for the family or friends of a person who received end-of-life doula support.</p><p><strong>Design: </strong>To evaluate the role of an end-of-life doula in supporting the dying person and those who care for them, we designed a post-bereavement survey as part of a wider evaluation strategy of doula services. Following multiple literature reviews and an iterative process of consulting with the professional organisation and previous service users, a questionnaire was developed to collect this data. This survey is hosted online, with paper copies available to widen accessibility.</p><p><strong>Conclusion: </strong>End-of-life doula support is a relatively new area of provision for dying people and those important to them, such as family and friends. It is even more innovative to have doula support commissioned as part of a locality's healthcare service. There is a dire need for empirical research to understand the impact of this further. The process of researching the area and designing the evaluation survey for this service revealed the complexity of the role and the difficulty of capturing what was found to be helpful for the dying person and those around them.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-10-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11489920/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142476750","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":"Adapting, implementing and evaluating a navigation intervention for older people with cancer and their family caregivers in six countries in Europe: the Horizon Europe-funded EU NAVIGATE project.","authors":"Rose Miranda, Tinne Smets, Lara Pivodic, Kenneth Chambaere, Barbara Pesut, Wendy Duggleby, Bregje D Onwuteaka-Philipsen, Barbara Gomes, Peter May, Katarzyna Szczerbińska, Andrew N Davies, Davide Ferraris, H Roeline Pasman, Maja Furlan de Brito, Ilona Barańska, Laura Gangeri, Lieve Van den Block","doi":"10.1177/26323524241288873","DOIUrl":"10.1177/26323524241288873","url":null,"abstract":"<p><strong>Background: </strong>Navigation interventions could support, educate and empower older people with cancer and/or their family caregivers by addressing barriers and ensuring timely access to needed services and resources throughout the continuum of supportive, palliative and end-of-life care.</p><p><strong>Objectives: </strong>European Union (EU) NAVIGATE is an interdisciplinary and cross-country Horizon Europe-funded project (2022-2027) aiming to evaluate the effectiveness, cost-effectiveness and implementation of a navigation intervention for older people with cancer and their family caregivers in Europe. EU NAVIGATE aims to advance the evidence on cancer patient navigation in Europe.</p><p><strong>Design: </strong>Adaptation, implementation and evaluation of a navigation intervention with an international pragmatic randomized controlled trial (RCT) and embedded mixed-method process evaluation at its core. A logic model guides dissemination and impact-generating strategies. EU NAVIGATE involves six experienced EU academic partners; one EU national cancer league with their affiliated academic partner; three EU dissemination partners; and a Canadian partner.</p><p><strong>Methods: </strong>We adapted the Canadian Navigation: Connecting, Advocating, Resourcing, and Engaging (Nav-CARE^©) volunteer programme to healthcare contexts in Belgium, Ireland, Italy, the Netherlands, Poland and Portugal following the new ADAPT guidance. Nav-CARE was developed over the past 15 years and supports people with declining health and their families to improve their quality of life and well-being, foster empowerment and facilitate timely and equitable access to healthcare and social services. In EU NAVIGATE, the navigation intervention is being provided by trained and mentored social workers in Poland and by trained and mentored volunteers in the other five countries. Via a pragmatic RCT with process evaluation, we implement and evaluate the navigation intervention to study its impact on older people with cancer and their family caregivers. We also aim to understand its cost-effectiveness, how to optimally implement it in different countries, and its differential effects in patient subgroups. We will also map existing cancer navigation interventions in Europe, the United States and Canada to position EU NAVIGATE within the field of navigation interventions worldwide.</p><p><strong>Conclusion: </strong>EU NAVIGATE aims to deliver high-quality evidence on a navigation intervention for older people with cancer in Europe and to develop practice and policy recommendations for sustainable implementation of navigation interventions in Europe and beyond.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-10-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11492236/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142476748","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":"Unlocking compassion: expanding access to palliative care in Saudi Arabia.","authors":"Fhaied Almobarak","doi":"10.1177/26323524241290828","DOIUrl":"10.1177/26323524241290828","url":null,"abstract":"<p><strong>Background: </strong>Palliative care is an essential element of the healthcare system. It has profound benefits for patients with life-limiting illnesses. The Saudi Arabian healthcare system lags in integrating this vital component effectively. Hence, estimating the palliative care needs of the Saudi Arabian population is crucial to understanding the country's demand for palliative care.</p><p><strong>Aim: </strong>To assess the past trends in adult palliative care needs in Saudi Arabia.</p><p><strong>Methods: </strong>The current research used population-based secondary data analysis by employing two palliative care needs estimation methods: the direct or fixed estimation method by Gómez-Batiste and the maximum or maximal method by Murtagh and Rosenwax. The estimated palliative care needs were stratified by gender.</p><p><strong>Results: </strong>An upward trend in the palliative care needs of the Saudi Arabian population is evident through the estimation techniques. The proportion of palliative care needs relative to deaths climaxed at 95% in the observed years. By 2022, the number of people requiring palliative care skyrocketed to 79,725 (fixed method) and 101,623 (maximal method).</p><p><strong>Conclusion: </strong>The need for palliative care in Saudi Arabia substantially rose in the observed years. It is inevitable to bridge the gap between palliative care needs and supply with advanced integration of palliative care services in the national healthcare system.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-10-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11487501/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142476751","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 social workers are positioned and constructed as contributors within national palliative care policies in Sweden: a policy analysis.","authors":"Axel Ågren, Bodil Holmberg","doi":"10.1177/26323524241289601","DOIUrl":"10.1177/26323524241289601","url":null,"abstract":"<p><strong>Background: </strong>Palliative care is expected to acknowledge physical, psychological, emotional, spiritual, and social needs, to which social workers can contribute with expertise on recognizing the importance of social relations and how social inequalities impact on individuals. The social work profession faces challenges in claiming their contributions in the hierarchies of medical professions. Polices play an important role in constructing and positioning responsibilities of professions.</p><p><strong>Objectives: </strong>To analyze how social workers are positioned as contributors to palliative care within national-level policies in Sweden.</p><p><strong>Methods and materials: </strong>A policy analysis was conducted through a constructivist lens. Data were collected from 10 Swedish national-level policy documents on palliative care.</p><p><strong>Results: </strong>Three themes emerged: \"A natural presence conveying special expertise\"; \"Emotional conversational support before and after death\"; and \"Practical support.\" Overall, social workers' contribution was vaguely described and in similar ways as registered nurses.</p><p><strong>Conclusion: </strong>In Swedish policies analyzed, social workers' contributions were difficult to differentiate from that of registered nurses, which may complicate their mutual collaborations and cause confusion for individuals at the end of life and their next of kin. Future research on how different professions are positioned within palliative care is needed to reduce risks of role blurring between professions with similar aims. Moreover, given social workers long history of psychosocial knowledge, meanings of this concept need to be further acknowledged.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-10-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11503901/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142509742","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":"Assessment of sleep characteristics using Fitbit Charge 4 in head and neck cancer patients undergoing palliative chemotherapy and radiotherapy: a prospective observational study.","authors":"Anuj Jain, Jha Suryavanshi, Vaishali Waindeskar, Manish Gupta, Ashutosh Kaushal, Harish Kumar","doi":"10.1177/26323524241283067","DOIUrl":"10.1177/26323524241283067","url":null,"abstract":"<p><strong>Background: </strong>Sleep disturbance is prevalent among cancer patients. The quantification of this sleep disturbance is missing, especially in palliative care settings.</p><p><strong>Aim: </strong>The aim of this study was to study the sleep patterns of the patients undergoing palliative chemotherapy and radiotherapy for head and neck cancer (HNC) using a Fitbit Charge 4 sleep-tracking device.</p><p><strong>Design: </strong>Prospective observational study.</p><p><strong>Setting: </strong>A total of 110 HNC patients undergoing palliative chemotherapy and radiotherapy at a tertiary care teaching hospital in Central India.</p><p><strong>Results: </strong>Forty-four percent of patients had a poor sleep score (less than 60). Average sleep duration was 218.66 ± 139.05 min; non-rapid eye movement (NREM) sleep duration 197.7 ± 115.91 (light NREM 171.36 ± 104 and deep NREM 23.36 ± 16.73); REM sleep duration was 30.44 ± 34.14 min. The Pittsburgh Sleep Quality Index was 10.23 ± 3.45, which indicated sleep deprivation over the past 1 month. Moderate levels of anxiety, depression, confusion, and distress existed in the cohort. Statistically significant but weak correlation existed between sleep score, anxiety, and depression. Strong correlation existed between distress score and sleep score. Confusion score did not have a significant correlation with sleep score.</p><p><strong>Conclusion: </strong>HNC patients in palliative care settings were chronically sleep deprived. Sleep architecture was also disturbed. Moderate levels of anxiety, depression, confusion, and distress existed in the studied cohort; these psychosocial disturbances had a weak correlation with the sleep score and are likely to be multifactorial.</p><p><strong>Trial registration: </strong>Institutional Ethics Committee number: IHEC-LOP/2020/IM0349. The study has been registered with clinical trial registry of India with registration number CTRI/2021/03/032400 (http://www.ctri.in).</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-10-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11462606/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142393925","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":"Gender and couple status differences in advance care planning: a cross-sectional study.","authors":"Kristin R Baughman, Ruth Ludwick, Ashley Audi, Laura Harlan","doi":"10.1177/26323524241287221","DOIUrl":"https://doi.org/10.1177/26323524241287221","url":null,"abstract":"<p><strong>Background: </strong>Past studies have shown mixed results on how gender and living with a spouse or partner impact advance care planning (ACP). Few if any have tested for the interaction between these two variables.</p><p><strong>Objective: </strong>We examined how gender and couple status interact to impact the use of ACP practices including written instructions, designating a durable power of attorney for healthcare (DPOAHC), and discussing one's decisions with others.</p><p><strong>Design: </strong>We used cross-sectional data taken from the Health and Retirement Study, a longitudinal study of adults over the age of 50 in the United States.</p><p><strong>Methods: </strong>Data are from 632 respondents who died between the 2016 core survey and the 2018 exit survey. Participants had completed the 2016 survey and had a proxy informant complete the 2018 exit survey after their death. Generalized linear mixed models were used to test for main effects and interactions.</p><p><strong>Results: </strong>Women were more likely than men to designate a DPOAHC and to discuss their wishes with others. Women living without a partner were more likely than men living without a partner and coupled households to discuss their wishes with family or others.</p><p><strong>Conclusion: </strong>Both gender and couple status are important variables associated with ACP practices. Healthcare providers may want to reach out to women living within a coupled household and men living without a partner to ensure that they know the benefits of ACP.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-10-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11459587/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142393926","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":"Where are the values in evaluating palliative care? Learning from community-based palliative care provision.","authors":"Sandy Whitelaw, Devi Vijay, David Clark","doi":"10.1177/26323524241287223","DOIUrl":"https://doi.org/10.1177/26323524241287223","url":null,"abstract":"<p><strong>Background: </strong>The World Health Organization Astana Declaration of 2018 sees primary healthcare as key to universal health coverage and gives further support to the goal of building sustainable models of community palliative care. Yet evaluating the benefits of such models continues to pose methodological and conceptual challenges.</p><p><strong>Objective: </strong>To explore evaluation issues associated with a community-based palliative care approach in Kerala, India.</p><p><strong>Design: </strong>An illuminative case study using a rapid evaluation methodology.</p><p><strong>Methodology: </strong>Qualitative interviews, documentary analysis and observations of home care and community organising.</p><p><strong>Results: </strong>We appraise a community palliative care programme in Kerala, India, using three linked 'canvases' of enquiry: (1) 'complex' multi-factorial community-based interventions and implications for evaluation; (2) 'axiological' orientations that foreground values in any evaluation process and (3) the status of evaluative evidence in postcolonial contexts. Three values underpinning the care process were significant: heterogeneity, voice and decentralisation. We identify 'objects of interest' related to first-, second- and third-order outcomes: (1) individuals and organisations; (2) unintended targets outside the core domain and (3) indirect, distal effects within and outside the domain.</p><p><strong>Conclusion: </strong>We show how evaluation of palliative care in complex community circumstances can be successfully accomplished when attending to the significance of community care values.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2024-10-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11459518/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142393927","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}