Mark Stoltenberg, Ofelia Leiva-Vásquez, Pedro E Pérez-Cruz, Bethany-Rose Daubman
{"title":"The development of an advanced diploma program for palliative care leaders in Chile.","authors":"Mark Stoltenberg, Ofelia Leiva-Vásquez, Pedro E Pérez-Cruz, Bethany-Rose Daubman","doi":"10.1177/26323524231209057","DOIUrl":"https://doi.org/10.1177/26323524231209057","url":null,"abstract":"<p><strong>Context: </strong>The majority of people with serious health-related suffering in low- and middle-income countries lack access to palliative care (PC). Increased access to PC education is greatly needed.</p><p><strong>Objectives: </strong>This paper describes the process to adapt an advanced PC training course for a Chilean context.</p><p><strong>Methods: </strong>A joint team of intercultural PC educators from the US and Chile conducted a series of key informant interviews and a target audience survey to iteratively design a PC training course in Chile.</p><p><strong>Results: </strong>Eight key informant interviews identified a strong need for formal PC education pathways, confirmed the five central learning domains, and helped to identify potential course sub-topics. A target audience survey of 59 PC providers from across Chile confirmed a strong desire to participate in such a course.</p><p><strong>Conclusion: </strong>Our team of intercultural PC educators adapted an advanced PC course to the unique context of Chilean providers.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-12-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10748680/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139032645","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}
Johan de Munter, Nikolina Dodlek, Ani Khmaladze, Sara Torcato Parreira, Helena Ullgren, Rik de Man, Floris A de Jong, Wendy H Oldenmenger
{"title":"The role of cancer nurses in cancer-related pain management in Europe.","authors":"Johan de Munter, Nikolina Dodlek, Ani Khmaladze, Sara Torcato Parreira, Helena Ullgren, Rik de Man, Floris A de Jong, Wendy H Oldenmenger","doi":"10.1177/26323524231216996","DOIUrl":"https://doi.org/10.1177/26323524231216996","url":null,"abstract":"<p><p>Cancer pain is a common symptom in patients with cancer and can largely affect their quality of life. Pain management is important to minimize the impact of pain on daily activities. Cancer nurses are significantly involved in all steps of pain management and contribute to the success of therapy through their knowledge and expertise. While they generally play an important role in the screening, assessment, diagnosis, treatment and follow-up of patients and their (pain) symptoms, this varies from country to country in Europe. An important aspect is their role in educating patients and their families about what pain is, what impact it can have, how it can be treated pharmacologically or non-pharmacologically and what effects or problems can occur during treatment. While there is a great discrepancy between education and training opportunities for cancer nurses in different European countries, there is a continued need for education and training in pain management. Cancer is increasingly becoming a chronic disease, and the management of pain in cancer survivors will be crucial to maintain an adequate quality of life. With this, the crucial role of cancer nurses is becoming even more important.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-12-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10725126/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138810849","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}
Natasha Bradley, Christopher Dowrick, Mari Lloyd-Williams
{"title":"Explaining how and why social support groups in hospice day services benefit palliative care patients, for whom, and in what circumstances.","authors":"Natasha Bradley, Christopher Dowrick, Mari Lloyd-Williams","doi":"10.1177/26323524231214549","DOIUrl":"10.1177/26323524231214549","url":null,"abstract":"<p><strong>Background: </strong>Palliative care aims to provide holistic support for people with life-limiting illness, responding to psychological, social and spiritual needs, as well as to clinical and physical. In the United Kingdom, hospice day services (including day care, group interventions, group activities, and social events for palliative care outpatients) aim to provide opportunities for patients to gain social support, which is thought to improve their quality of life.</p><p><strong>Objectives: </strong>This research explored social support within hospice day services, to explain in detail how and why social support obtained within a hospice day service could be beneficial to palliative care patients.</p><p><strong>Design: </strong>Qualitative research using observations of hospice day services and interviews with service providers.</p><p><strong>Methods: </strong>Data collection involved nineteen interviews with hospice service providers (<i>n</i> = 19) and researcher observations of hospice day services. The findings detail how patient and hospice context interact to produce mechanisms that lead to outcomes beyond the hospice day service.</p><p><strong>Results: </strong>Practical, clinical and social aspects of the hospice day service are important for patients feeling welcome and safe in the setting. The opportunity to connect with other people and work towards personal goals can boost self-confidence for patients who have lost access to meaningful activity. New friendships between patients encourages reciprocal support and feelings of belonging. It is beneficial to have permission to speak freely about topics deemed inappropriate elsewhere, because honest communication is helpful in accepting and adapting to their circumstances.</p><p><strong>Conclusion: </strong>Hospice day services facilitate group settings for reciprocal social support. This research proposes an initial programme theory that can be further developed and tested. It explains how and why, in some contexts, social support increases personal and practical resources to cope with illness and death, leading to changes outside of the hospice (to mood, interpersonal interactions and behaviour) that could improve quality of life.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-12-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10693225/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138478788","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}
Sita de Vries, Mary-Joanne Verhoef, Sigrid Cornelia Johanna Maria Vervoort, Yvette Milene van der Linden, Saskia Cornelia Constantia Maria Teunissen, Everlien de Graaf
{"title":"Barriers and facilitators that hospital clinicians perceive to discuss the personal values, wishes, and needs of patients in palliative care: a mixed-methods systematic review.","authors":"Sita de Vries, Mary-Joanne Verhoef, Sigrid Cornelia Johanna Maria Vervoort, Yvette Milene van der Linden, Saskia Cornelia Constantia Maria Teunissen, Everlien de Graaf","doi":"10.1177/26323524231212510","DOIUrl":"10.1177/26323524231212510","url":null,"abstract":"<p><strong>Background: </strong>The exploration and monitoring of the personal values, wishes, and needs (VWN) of patients in the palliative phase by hospital clinicians is essential for guiding appropriate palliative care.</p><p><strong>Objective: </strong>To explore the barriers and facilitators concerning communication with patients in the palliative phase about their VWN as perceived by hospital clinicians.</p><p><strong>Design: </strong>A mixed-methods systematic review following the Joanna Briggs Institute guidelines for mixed-method systematic reviews and Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guidelines was conducted (PROSPERO ID: CRD42021216693).</p><p><strong>Data sources and methods: </strong>Eight databases, including PubMed, Embase, and CINAHL, were searched without time restrictions. The search string was built using the search Palliative cAre Literature rEview iTeraTive mEthod (PALETTE) framework. Eligible studies focused on (1) hospital clinicians and (2) perceived barriers and facilitators regarding the exploration and monitoring of the VWN of adult patients in the palliative phase. Two researchers independently selected articles and evaluated the quality. Findings were synthesized using a convergent integrated approach.</p><p><strong>Results: </strong>In total, 29 studies were included: 14 quantitative, 13 qualitative, and 2 mixed methods. Five synthesized findings were identified: (1) the clinician's professional manners, (2) the image formed of the patient and loved ones, (3) the human aspect of being a clinician, (4) the multidisciplinary collaboration, and (5) the contextual preconditions. Most studies seemed focused on communication about treatment decision making.</p><p><strong>Conclusion: </strong>A patient-centered approach seems lacking when clinicians discuss the patient's VWN, since most studies focused on treatment decision making rather than on the exploration and monitoring of the multidimensional well-being of patients. This review emphasizes the need for the development and integration of a systematic approach to explore and monitor the patients' VWN to improve appropriate palliative care in hospitals.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10693227/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138478786","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}
Lorraine Hansford, Katrina Wyatt, Siobhan Creanor, Jennie Davies, Gillian Horne, Amanda Lynn, Sheena McCready, Susie Pearce, Anna Peeler, Ann Rhys, Libby Sallnow, Richard Harding
{"title":"Engaging with communities in rural, coastal and low-income areas to understand barriers to palliative care and bereavement support: reflections on a community engagement programme in South-west England.","authors":"Lorraine Hansford, Katrina Wyatt, Siobhan Creanor, Jennie Davies, Gillian Horne, Amanda Lynn, Sheena McCready, Susie Pearce, Anna Peeler, Ann Rhys, Libby Sallnow, Richard Harding","doi":"10.1177/26323524231212514","DOIUrl":"10.1177/26323524231212514","url":null,"abstract":"<p><strong>Background: </strong>England's South-west Peninsula is largely rural, has a high proportion of over 65s, and has areas of rural and coastal deprivation. Rural and low-income populations face inequities at end of life and little is known about the support needs of rural, coastal and low-income communities.</p><p><strong>Objectives: </strong>To understand how to foster community support for dying and grieving well, a regional, multi-sectoral research partnership developed a community engagement programme to explore experiences of seeking support, issues important to people and the community support they valued. This article shares what people told us about the role that communities can play at end of life, and reflects on learning from our process of engaging communities in conversations about dying.</p><p><strong>Design and methods: </strong>A programme of varied community engagement which included: the use of the 'Departure Lounge' installation and four focus groups with interested individuals in a range of community settings; the co-creation of a 'Community Conversation' toolkit to facilitate conversations with individuals with experience of end-of-life care and their carers with Community Builders; a focus group with Community Builders and a storytelling project with three bereaved individuals.</p><p><strong>Results: </strong>People valued community support at the end of life or in bereavement that offered connection with others, peer support without judgement, responded to their individual needs and helped them to access services. Creative methods of engagement show potential to help researchers and practitioners better understand the needs and priorities of underserved populations. Collaboration with existing community groups was key to engagement, and contextual factors influenced levels of engagement.</p><p><strong>Conclusion: </strong>Local community organizations are well placed to support people at end of life. This work highlighted the potential for partnership with palliative care and bereavement organizations, who could offer opportunities to develop people's knowledge and skills, and together generate sustainable solutions to meet local need.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":2.7,"publicationDate":"2023-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10693214/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138478787","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":"Facilitators and barriers to implementation of a patient and staff reported measure for screening of palliative concerns of patients with heart failure: a qualitative analysis using the Consolidated Framework for Implementation Research.","authors":"Shirlyn Hui-Shan Neo, Jasmine Yun-Ting Tan, Elaine Swee-Ling Ng, Sungwon Yoon","doi":"10.1177/26323524231214814","DOIUrl":"10.1177/26323524231214814","url":null,"abstract":"<p><strong>Background: </strong>Screening patients with patient-reported outcome measures allows identification of palliative care concerns. The Integrated Palliative Care Outcome Scale (IPOS) was developed in the United Kingdom for this purpose. Tools developed in another setting might not be readily usable locally. We previously evaluated the validity and reliability of the IPOS in our cardiology setting. However, it remains uncertain what factors would influence the subsequent implementation of IPOS for routine screening of patients with advanced heart failure in future practice.</p><p><strong>Objectives: </strong>This study aimed to identify the factors that could affect the IPOS implementation for patients with advanced heart failure.</p><p><strong>Design: </strong>This was a qualitative study conducted at the National Heart Centre Singapore.</p><p><strong>Methods: </strong>Patients with advanced heart failure who participated in our previous IPOS validation study were purposively recruited for semi-structured interviews. Healthcare workers caring for these patients and involved in the testing of the IPOS tool were also invited for interviews. The interviews were analyzed thematically and mapped to the Consolidated Framework for Implementation Research (CFIR).</p><p><strong>Results: </strong>Our analysis identified six potential facilitators and six potential barriers to implementation across five major domains of the CFIR (intervention characteristics, inner setting, outer setting, individual characteristics, and process). Facilitators include: (i) perception of utility, (ii) perception of minimal complexity, (iii) perception of relatability, (iv) conducive culture, (v) dedicated resources, and (vi) advocates for implementation. Barriers include: (i) need for adaptation, (ii) mindsets/role strains, (iii) resource constraints, (iv) cultural concerns, (v) individual needs, and (vi) change process.</p><p><strong>Conclusion: </strong>Institutions could focus on cultivating appropriate perceptions and conducive cultures, providing dedicated resources for implementation and introducing facilitators to advocate for implementation. Adaptation of IPOS to suit workflows and individual needs, consideration of change processes, and systemic changes to alleviate cultural, resource, and staff role strains would improve IPOS uptake during actual implementation in clinical services.</p><p><strong>Trial registration: </strong>Not applicable.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10693212/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138478789","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":"Factors associated with living will among older persons receiving long-term care in Finland.","authors":"Paula Andreasen, Leena Forma, Ilkka Pietilä","doi":"10.1177/26323524231212513","DOIUrl":"10.1177/26323524231212513","url":null,"abstract":"<p><strong>Background: </strong>A living will document is known to be an important tool for preparing for future care together with healthcare professionals. A living will supports an older person's self-determination and autonomy. Only a few studies have approached the underlying factors of a living will document among older long-term care recipients.</p><p><strong>Objectives: </strong>To explore how common having a living will was among older persons receiving home care or round-the-clock long-term care, as well as to evaluate associations between socio-demographical factors and functional capacity with a living will.</p><p><strong>Design: </strong>The study population consisted of older persons receiving long-term care in Finland in 2016-2017. Data were collected <i>via</i> individual assessments at home or at a care facility. The questions in the assessment covered health, functional capacity, service use, and social support.</p><p><strong>Methods: </strong>Primary outcome 'living will' and associated factors were identified for each person aged 65 or older from RAI-assessment data (Resident Assessment Instrument, RAI). Cross-tabulations with χ²-tests and adjusted binary logistic regression models were performed to evaluate the association between the factors and a living will.</p><p><strong>Results: </strong>Of the 10,178 participants, 21% had a living will - a greater proportion were female (22%) than male (18%), and a greater proportion of residents in assisted living (25%) and residential care homes (20%) compared with home care residents (15%) had a living will. Female gender (<i>p</i> < 0.001), having a proxy decision-maker (<i>p</i> = 0.001), increasing age (<i>p</i> = 0.003), impairing functional capacity (activities of daily living hierarchy <i>p</i> < 0.001, Cognitive Performance Scale <i>p</i> < 0.001), instability of health status (Changes in Health, End-Stage Disease and Signs and Symptoms <i>p</i> < 0.001), and closeness of death (<i>p</i> < 0.001) were significantly associated with a living will among older persons. Extensive differences in results were found between home care clients and clients of round-the-clock long-term care.</p><p><strong>Conclusion: </strong>Preparedness for the future with a living will varies according to services and on individual level. To reduce inequalities in end-of-life care, actions for advance care planning with appropriate timing are warranted.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-11-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10687943/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138463216","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}
Rachel Z Carter, Eman Hassan, Pat Porterfield, Doris Barwich
{"title":"A model for community-led peer-facilitated advance care planning workshops for the public.","authors":"Rachel Z Carter, Eman Hassan, Pat Porterfield, Doris Barwich","doi":"10.1177/26323524231212515","DOIUrl":"10.1177/26323524231212515","url":null,"abstract":"<p><strong>Background: </strong>The core to successful advance care planning (ACP) facilitation is helping people determine their values, beliefs and wishes, and understand substitute decision-making. Recognizing the potential for community members to support public awareness and education we developed a model of ACP education, whereby peer facilitators associated with community organizations host workshops that educate and assist members of the public with ACP.</p><p><strong>Objectives: </strong>Describe the development and evaluation of the model for community-led peer-facilitated ACP workshops for the public.</p><p><strong>Design: </strong>Descriptive mixed methods.</p><p><strong>Methods: </strong>A training curriculum and program model were co-developed with two community organizations that had been successful in delivering ACP workshops independently in their communities. Herein we describe a mixed-methods evaluation of three cycles of implementation and improvement of the model.</p><p><strong>Results: </strong>The model centers on three key concepts; the right content (based around three steps Think, Talk, Plan), the right facilitator, and the right approach. A suite of tools was designed to support the three groups involved in the delivery of the ACP workshops: the public participants, the peer facilitators, and the community-based organizations. The peer-facilitator training addresses the facilitator's learning needs of ACP content knowledge, facilitation skills, and understanding change behavior. Training evaluation data from 106 facilitators confirmed that the curriculum prepared them to facilitate the workshops. Qualitative data revealed that support from organizations with established reputations in their community is critical, with mentoring from more experienced facilitators beneficial.</p><p><strong>Conclusion: </strong>Our model demonstrates the potential of community-led, peer-facilitated ACP initiatives to enhance the capacity of community to upstream ACP conversations. Reaching a broader audience and creating a supportive, inclusive environment for individuals to comfortably learn about ACP can drive the much-needed culture shift to normalize ACP. Meaningful community engagement, empowerment, and partnerships are essential for the successful development and widespread impact of these initiatives.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-11-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10685751/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138463215","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":"Family caregivers bereaved by voluntary-assisted dying with a focus on motor neurone disease: the hidden patients.","authors":"Margaret Sealey, Samar M Aoun","doi":"10.1177/26323524231212512","DOIUrl":"https://doi.org/10.1177/26323524231212512","url":null,"abstract":"","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-11-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10666550/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138463217","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}
Robyn Thomas, Barbara Pesut, Hal Siden, Michael Treschow, Gloria Puurveen
{"title":"Developing competencies for volunteer navigators to support caregivers of children living with medical complexity: a mixed-method e-Delphi study.","authors":"Robyn Thomas, Barbara Pesut, Hal Siden, Michael Treschow, Gloria Puurveen","doi":"10.1177/26323524231209060","DOIUrl":"10.1177/26323524231209060","url":null,"abstract":"<p><strong>Background: </strong>Providing specially trained volunteer navigators is one promising strategy for supporting the increasing number of family caregivers who are caring for children living with medical complexity.</p><p><strong>Objective: </strong>The objective of this study was to develop consensus on the role and competencies required for volunteer navigators who support caregivers of children living with medical complexity.</p><p><strong>Design: </strong>This was a mixed-method study using modified e-Delphi and focus group methods. In phase 1, a modified e-Delphi survey with 20 family caregivers and a focus group with 4 family caregivers were conducted to develop consensus on their unmet needs and the potential roles of a volunteer to meet those needs. In phase 2, a modified e-Delphi survey was conducted with experts to develop consensus on the volunteer competencies required to meet the roles identified by family caregivers in phase 1.</p><p><strong>Results: </strong>Findings from phase 1 resulted in 36 need-related items over 8 domains: communication, daily life and chores, emotional support, information and knowledge, respite, support with decision-making, and sharing the caregiving experience. Concerns about the volunteer role included the potential lack of commitment in the absence of remuneration, the complexity of the child's condition that was beyond the role of a volunteer, and a preference for support from individuals they knew. Findings from the phase 2 Delphi survey with professionals resulted in 22 competencies, derived from the roles identified in phase 1, that would be required of volunteers who wished to support these family caregivers.</p><p><strong>Conclusion: </strong>This study provides insight into a role for volunteers in meeting the needs of family caregivers of children living with medical complexity. A volunteer with lived experience and adequate preparation can assist with meeting some of these important needs. Further research is required to better understand the feasibility and acceptability of such a role.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-11-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10634257/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"89719871","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}