Palliative Care and Social Practice最新文献

{"title":"A systematic review and meta-analysis on palliative care service utilization and its associated factors among adult cancer patients in Ethiopia.","authors":"Abel Desalegn Demeke, Alemayehu Yeshiwas, Habtamu Gebrie, Mequanint Ayehu Akele, Anteneh Gashaw, Abraham Dessie Gessesse, Takla Tamir, Netsanet Bogale, Wondimagegn Wolde Eba, Biazin Yenealem Mekuriaw, Ababo Demeke","doi":"10.1177/26323524261473625","DOIUrl":"10.1177/26323524261473625","url":null,"abstract":"<p><strong>Background: </strong>Palliative care (PC) is essential for helping cancer patients manage pain, exhaustion, despair, and other crippling symptoms. It also facilitates end-of-life planning and collaborative decision-making. However, studies in Ethiopia are scattered, and there is no thorough synthesis of the literature regarding utilization of PC service and its associated determinants among adult cancer patients.</p><p><strong>Objective: </strong>This study seeks to close this important gap by assessing the pooled size of PC service utilization among adult cancer patients in Ethiopia and determining its associated characteristics.</p><p><strong>Methods: </strong>The Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) Guideline was followed in conducting the investigation. A detailed search until 31 February 2025 was conducted on Pub Med, HINARI, Goggle Scholar, EMBASE, CINAHL, Science Direct, and Scopus. The Joanna Briggs Institute (JBI) rating method was used to evaluate the quality of the extracted studies. The retrieved data was analyzed using the statistical program STATA v.17. The pooled analysis was estimated using weighted inverse variance random-effects model. Heterogeneity was assessed using I² statistics. Subgroup analysis was carried out to look in to the reason for heterogeneity.</p><p><strong>Result: </strong>The combined percentage of Ethiopian adult cancer patients who used PC services was 45.11% (95% CI: 35.06, 55.16). The Sidama region had the greatest utilization rate at 51.51% (95% CI: 29.66, 73.36). Higher use of palliative care was substantially correlated with college or university education (OR = 2.56, 95% CI: 1.31, 5.02).</p><p><strong>Conclusion: </strong>PC service utilization in Ethiopia was found to be below 50%, highlighting a critical need for intervention. Higher educational attainment increases the likelihood of using these services, underscoring differences impacted by sociodemographic factors. Therefore, healthcare professionals and policymakers should focus on several methods to enhance the utilization of PC services in Ethiopia.</p><p><strong>Prospero registration number: </strong>CRD42024554748.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261473625"},"PeriodicalIF":2.7,"publicationDate":"2026-07-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13408060/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148621660","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":"Participatory development of patient-targeted guideline material in palliative care: A qualitative evaluation.","authors":"Hannah Demleitner, Saskia Kauzner, Ronny Schneider, Manuela Schneider, Christoph Ostgathe, Carsten Klein, Maria Heckel","doi":"10.1177/26323524261465682","DOIUrl":"10.1177/26323524261465682","url":null,"abstract":"<p><strong>Background: </strong>Patient and public involvement (PPI) improves patient-targeted guideline material and is recognised internationally as essential in guideline development. Whilst current research has focussed on PPI both in guideline development and palliative care, evidence regarding its implementation in developing patient-targeted guideline material is limited.</p><p><strong>Aim: </strong>To explore participants' experiences and identify supportive and challenging factors in the participatory development of patient-targeted guideline material in palliative care.</p><p><strong>Design: </strong>Qualitative evaluation of the participatory development process (04/2024 - 09/2024) of a patient guide to a German best practise recommendation on intentional sedation using questionnaires with open-ended questions followed by semi-structured interviews. Data were analysed using structuring qualitative content analysis according to Kuckartz.</p><p><strong>Setting/participants: </strong>Four PPI members and four healthcare professionals randomly selected from the editorial panel tasked with developing the patient guide.</p><p><strong>Results: </strong>The participatory approach with experienced PPI-members as experts for lay-comprehensibility fostered an equal and respectful environment, allowing all participants to contribute. Despite successful organisation and communication, obstacles arose regarding time management and technical challenges with hybrid sessions and digital co-working formats. The participants did not require additional methodological training. Working in subgroups proved effective and offered emotional support but carried the risk of creating inequalities.</p><p><strong>Conclusion: </strong>PPI can be supported by recruiting experienced PPI advisory board members, providing flexibility through hybrid sessions and managing emotional distress through creating a save atmosphere with peer support in subgroup sessions. Communication barriers in hybrid meetings, rejection of digital co-working formats, inattention to PPI in subgroup sessions and time management issues must be considered when planning a project.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261465682"},"PeriodicalIF":2.7,"publicationDate":"2026-07-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13396578/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148585301","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":"Healthcare professionals' experiences of telehealth adoption in palliative care: A cross-sectional survey.","authors":"Ann Kirby, Donal Griffin, Ciara Heavin, Fiona Kiely, Frances J Drummond, Ciara McGrath","doi":"10.1177/26323524261437366","DOIUrl":"10.1177/26323524261437366","url":null,"abstract":"<p><strong>Background: </strong>Research has revealed a dramatic rise in the adoption of telehealth by healthcare professionals (HCPs). Limited evidence exists focusing solely on HCPs' adoption and use of telehealth in palliative care and lacks nuance about when and how telehealth is clinically appropriate.</p><p><strong>Objective: </strong>The aim is to deepen understanding of HCPs' behavioural intention (BI) regarding the adoption and use of telehealth in palliative care, and to examine their current patterns of telehealth use.</p><p><strong>Methods: </strong>Cross-sectional data were collected from HCPs working in palliative care between July 27th and September 22nd, 2023. A probit analysis examined the difference between users and non-users of telehealth in palliative care, while a multiple linear regression assessed the association between a HCPs' BI of using telehealth and Performance Expectancy, Effort Expectancy, Facilitating Conditions, and Social Influence.</p><p><strong>Results: </strong>Perceived benefits to clinical performance were associated with increased willingness to adopt telehealth. Workplace culture, experience, opportunity to use telehealth, and peer encouragement were highlighted as important contributors to a supportive environment. However, despite positive BIs, many previous users reported infrequent use in practice, suggesting a gap between intention and routine clinical integration.</p><p><strong>Conclusion: </strong>HCPs recognised the benefits of telehealth, but concerns remained regarding treating and managing physical symptoms in palliative care. Telephone-based services were still primarily used, though hybrid models were recognised as needed at times in some clinical situations. Patterns of use suggested distinct user groups, indicating that telehealth implementation requires tailored training, organisational supports, and clear escalation pathways for transitioning from virtual to in-person care. Addressing these factors may support more sustainable and clinically appropriate telehealth delivery in palliative care, with potential benefits for patient outcomes and experiences.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261437366"},"PeriodicalIF":2.7,"publicationDate":"2026-07-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13396632/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148585304","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":"Positioning palliative oncology in health care in Caribbean and Sub-Saharan African countries: Leveraging social and economic opportunities.","authors":"Lindonne Telesford, Karl Theodore, Christine Edan, Kester Nedd, Tamara Green, Karim Assani","doi":"10.1177/26323524261465680","DOIUrl":"10.1177/26323524261465680","url":null,"abstract":"<p><p>Each year, millions of people around the world experience serious health-related suffering from life-threatening and life-limiting illnesses and require palliative care. Palliative care is a human right to adequate and timely interventions for the well-being of patients with serious illnesses and their families. The World Health Assembly incorporated palliative care as a component of universal health care, reinforcing the World Health Organization's mandate to support governments in integrating the service into primary health care. Yet, fewer than half of the countries across the globe have realized this integration. Low- and middle-income countries lag in the provision of palliative care and pain relief for children and adults and have disproportionately higher mortality rates among people who experience serious health-related suffering. Our objective is to create awareness of barriers to positioning palliative oncology in healthcare and to propose affirmative measures to improve the services for children and adults in Caribbean and Sub-Saharan African countries. Four critical barriers influencing the positioning of palliative care in healthcare systems are presented: the exclusion of palliative care in universal health care schemes, restrictions to oncological end-of-life care, insufficient deliberate distinctions in services for children and adults, and limited access to medications and the absence of medication policies and regulations. We present three measures, with examples, of how to address barriers to integrating palliative oncology in healthcare systems: an approach to capacity building for pediatric palliative care in African countries, ensuring more equity in delivering primary care services; repositioning culturally sensitive psychosocial oncology care in Sub-Saharan African countries and the Caribbean, focusing on the habilitative opportunities that exist and bridging cost-effective efforts within health systems; and a matrix of domains and dimensions supports the construction of financial structures for the sustainable resilience of health care systems. Finally, we present recommendations for advocacy and to generate support for implementing the proposed measures to transform palliative services for children and adults. This paper supports the development of policies and interventions to close gaps in delivering healthcare to people affected by cancer. Further research may stem from this work, focusing on palliative care for critical conditions from other illnesses.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261465680"},"PeriodicalIF":2.7,"publicationDate":"2026-07-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13389178/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148563147","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":"'I dream of the airplane, but I cannot board it': Exploring end-of-life aspirations with people who have lived experiences of homelessness.","authors":"Merryn Gott, Stella Black, Janine Wiles, Lisa Williams, Tess Moeke-Maxwell, Jackie Robinson","doi":"10.1177/26323524261445576","DOIUrl":"10.1177/26323524261445576","url":null,"abstract":"<p><strong>Background: </strong>Little is known about how people experiencing homelessness discuss their end-of-life aspirations or the extent to which these align with current models of Advance Care Planning.</p><p><strong>Objectives: </strong>To explore how people with lived experience of homelessness discuss their end-of-life aspirations and identify implications for Advance Care Planning.</p><p><strong>Design: </strong>A qualitative study was undertaken underpinned by a social constructionist framework.</p><p><strong>Methods: </strong>In-depth interviews were conducted with 16 participants with lived experiences of homelessness living in a major city in Aotearoa New Zealand.</p><p><strong>Results: </strong>Participants had difficulty in formulating aspirations and these were magnified when considering end-of life due to the challenges of predicting future resources, including shelter, food, and sources of social support and connection. End-of-life aspirations discussed involved basic needs being met, for example, through warm and dry shelter, access to a safe, non-chaotic space, and having access to food and showers. A good relationship with a trusted supporter was identified as an important enabler of end-of-life aspirations being realised. However, participants were unable to identify who would support them at end-of-life. Experiences of healthcare shared indicated that people were not provided with appropriate information, and the relational characteristcs were not present, to enable them to make decisions about their care and treatment.</p><p><strong>Conclusion: </strong>Mainstream approaches to Advance Care Planning do not meet the needs of people with lived experience of Homelessness. New professional approaches are needed that are responsive to experiential knowledge and context, connect different care networks, and recognise the injustices linked to structural disadvantage. Approaches must be developed in partnership with people with lived experience of homelessness. Supporting aspirations for living is a necessary first step to consider aspirations when dying for people experiencing structural disadvantage and discrimination.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261445576"},"PeriodicalIF":2.7,"publicationDate":"2026-07-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13382104/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148608180","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 are agency and autonomy understood in children's palliative and end-of-life care?: A narrative review.","authors":"Sydney Campbell, Lauren Delaney, Nika Rovensky, Ryan Kent, Amarens Matthiesen, Franco A Carnevale, Mary Ellen Macdonald","doi":"10.1177/26323524261460928","DOIUrl":"10.1177/26323524261460928","url":null,"abstract":"<p><p>Public policy in Canada develops through deliberative democracy and, increasingly, public engagement. Children and youth ('young people') remain largely excluded from these processes however; this exclusion is especially evident in health arenas where two conceptual tools, autonomy and agency, are used to justify it. To date, there has not yet been an examination of how these concepts function in children's palliative and end-of-life (P-EOL) care. This narrative review aimed to explore how autonomy and agency are constructed, conveyed, and employed in related literature. To situate and compare understanding of agency and autonomy, we used principles from Childhood Ethics. We scanned four databases using the search terms: young people; P-EOL care; agency; and autonomy. Studies were included if they were peer-reviewed, in English/French, and focused on young people's agency and/or autonomy in P-EOL care. Exclusion criteria included an exclusive focus on neonates. Data were extracted from 52 sources focusing on study location, population, classification of P-EOL experiences, whether and how agency and autonomy were described, and barriers and facilitators to agency/autonomy expression. Analysis highlighted the prominence of autonomy in the literature in comparison to agency, and the conflation of these concepts. The mobilization of both concepts could bolster or thwart young people's engagement in P-EOL care. Several modalities for expressing agency and autonomy were exemplified across the literature, including acute treatment decisions, research participation, decisions regarding sexuality and fertility, and prioritization of play. Overall, this study describes how interpretations of agency and autonomy can inform young people's P-EOL care. Future research would benefit from prioritizing young people's inclusion in P-EOL care research and generating communication-related training for clinicians.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261460928"},"PeriodicalIF":2.7,"publicationDate":"2026-07-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13376480/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148580387","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":"Good death: A critical essay on the concept in global palliative and end of life care.","authors":"Libby Sallnow, Hanum Atikasari, Aileen Collier, Scott Preston, Smriti Rana, Erica Borgstrom","doi":"10.1177/26323524261467781","DOIUrl":"10.1177/26323524261467781","url":null,"abstract":"<p><p>The concept of a 'good death' has long been a subject of philosophical, clinical, and cultural debate. Despite its universal relevance and importance, no consensus exists among scholars or practitioners regarding its definition. This critical essay interrogates the potential value or tyranny of the term, drawing on contemporary literature and insights from a global multidisciplinary webinar. The discussion elucidates tensions between palliative care practices and diverse cultural understandings of dying, revealing how normative assumptions may marginalise individual preferences and communal experiences. Through a synthesis of webinar contributions, the essay explores three central tensions: the dichotomy of good versus bad death, varied perspectives on suffering, and choice and control. Each panellist's perspective illuminates the complexities inherent in defining or realising a good death. The synthesis highlights how prescriptive interpretations may stigmatise and undermine personal choices and operate oblivious to the structural determinants that influence dying experiences. The essay concludes with three actionable recommendations aimed at fostering inclusive discourse and practice: (1) embracing pluralism in death narratives, (2) addressing systemic inequities in end-of-life care, and (3) expanding support for non-clinical dying environments. Ultimately, this work advocates for a reframing of the good death paradigm, one that prioritises diversity and contextual sensitivity.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261467781"},"PeriodicalIF":2.7,"publicationDate":"2026-07-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13373395/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148473271","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":"Tailoring support for parents of children in palliative care: Feasibility of the carer support needs assessment tool intervention paediatric in a Norwegian context.","authors":"Gro Trae, Anette Winger, Marianne Nordstrøm","doi":"10.1177/26323524261469594","DOIUrl":"10.1177/26323524261469594","url":null,"abstract":"<p><strong>Background: </strong>Parents of children receiving palliative care often experience significant caregiving responsibilities and unmet support needs, emphasising the importance of systematic assessments and tailored interventions.</p><p><strong>Objectives: </strong>This study examined the feasibility of the Carer Support Needs Assessment Tool Intervention Paediatric (CSNAT-I Paediatric) within a national unit for children's palliative care in Norway. It further explored the support needs of parents of children with severe neurological impairments, including neurometabolic conditions.</p><p><strong>Design: </strong>A non-randomised, multi-method feasibility study.</p><p><strong>Methods: </strong>Feasibility was examined across domains of acceptability, demand, implementation, practicality, integration, and adaptation. Cognitive interviews with parents (n=34) were conducted to examine acceptability and needs for adaptation. Overall feasibility from parents' perspectives were measured using an electronic questionnaire (n=12), and data on parents' support needs were extracted from the children's medical records. Intervention providers' perspectives on acceptability, demand, practicality, implementation and integration were explored in a focus group interview (n=6).</p><p><strong>Results: </strong>Parents found the CSNAT-I Paediatric acceptable and all domains of the assessment tool were considered relevant, although they suggested adaptations to better capture care coordination and the child's daytime activities. Parents' support needs were heterogeneous and often required action from multiple parties. Intervention providers viewed the CSNAT-I Paediatric as useful for tailoring services to families but identified practical and implementation challenges in following up on identified needs.</p><p><strong>Conclusions: </strong>The CSNAT-I Paediatric is feasible in children's palliative care settings. Effective implementation requires interprofessional and intersectional collaboration among stakeholders to meet families' complex support needs, and further refinement could enhance its utility.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261469594"},"PeriodicalIF":2.7,"publicationDate":"2026-07-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13373383/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148473278","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":"Existential suffering at the end of life in long-term care: A critical essay on recognition, dignity, and witness.","authors":"Anat Romem, Rachel Bardach","doi":"10.1177/26323524261469210","DOIUrl":"10.1177/26323524261469210","url":null,"abstract":"<p><p>Existential suffering is widely acknowledged in palliative care, but it remains inconsistently recognized and unevenly addressed in long-term care. This critical essay argues that the gap is not caused by clinician indifference, but by a persistent mismatch between whole-person ideals and care systems organized around measurable symptoms, risk management, task completion, and professional uncertainty. Drawing on literature on suffering, existential loneliness, dignity, spiritual care, and recent critiques of impersonal care systems, the essay identifies three interrelated shortcomings: the reduction of suffering to medically actionable symptoms; the depersonalizing effects of institutional routines on frail older adults; and the absence of shared existential literacy across interdisciplinary teams. The essay also cautions against romanticizing suffering or treating meaning-making as a clinical expectation. It proposes a practical framework of recognition, dignity, and witness: recognizing biography and identity as clinically relevant; protecting dignity in the ordinary details of care; and enacting witness through disciplined presence, documentation, referral, and team accountability. Long-term care cannot resolve every existential wound, but it can reduce existential neglect by treating personhood as a core quality indicator of palliative care.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261469210"},"PeriodicalIF":2.7,"publicationDate":"2026-07-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13365655/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148449705","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":"Healthcare provider's perceptions of family values when making end-of-life care decisions for their children: developing and implementing a survey tool.","authors":"Nithya Sivakumar, Stephanie Kukora, Cherie Ginwalla, Satyan Lakshminrusimha, Jennifer Rosenthal","doi":"10.1177/26323524261467433","DOIUrl":"10.1177/26323524261467433","url":null,"abstract":"<p><strong>Background: </strong>Healthcare providers help families navigate end-of-life care decisions in the neonatal intensive care unit (NICU) and pediatric intensive care unit (PICU); however, limited studies exist regarding what values providers perceive families utilize when in these situations.</p><p><strong>Objective: </strong>To evaluate providers' perceptions of values that families considered when making end-of-life care decisions for their child.</p><p><strong>Design: </strong>Develop a novel survey tool to understand providers' perceptions of values families considered when making end-of-life care decisions for their children and distribute the survey tool to providers in a single quaternary care children's hospital within a university hospital.</p><p><strong>Methods: </strong>The novel survey tool was composed of survey questions based on existing literature, revised based on expert feedback, then iteratively refined through cognitive interviews. Preliminary data from this survey tool was collected from eligible participants at one study site.</p><p><strong>Results: </strong>Feedback from nine experts and six cognitive interviews resulted in a 21-item survey. Ninety-five participants completed the survey. Participants reported that the relationship between the family and child, the child's quality of life, and the child's prognosis or disease course were most important to the family. Conversely, finances and prior experiences were ranked least important.</p><p><strong>Conclusions: </strong>A novel survey tool was created to identify the core values that families were perceived to favor by healthcare providers when making end-of-life care decisions for their children, as a means to improve end-of-life care discussions at the bedside. Pilot data suggests that providers may understand the values that families utilize, though may not understand <i>how</i> they prioritize them. Future studies comparing family and provider responses, with mirrored surveys, are necessary to create decision support tools and to improve provider education in end-of-life care decision-making.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"20 ","pages":"26323524261467433"},"PeriodicalIF":2.7,"publicationDate":"2026-07-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13351224/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148424968","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}