{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,8]],"date-time":"2026-09-08T22:36:37Z","timestamp":1788906997740,"version":"build-2803163510"},"reference-count":44,"publisher":"JMIR Publications Inc.","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["JMIR Cancer"],"abstract":"Abstract<\/jats:title>\n \n Background<\/jats:title>\n Home-based hospice care offers patients with terminal cancer the comfort of receiving care in a familiar environment while enabling family members to provide personalised support. Despite the critical role families play, the literature remains underexplored in terms of their experiences, needs, and perceptions. A robust qualitative synthesis is needed to inform improvements in palliative care services.<\/jats:p>\n <\/jats:sec>\n \n Objective<\/jats:title>\n This meta-synthesis aims to systematically review and synthesize qualitative evidence regarding the experiences, needs, and perceptions of family caregivers in home-based hospice care for patients with terminal cancer. The goal is identifying key themes that can improve caregiver support and service delivery.<\/jats:p>\n <\/jats:sec>\n \n Methods<\/jats:title>\n A systematic search was conducted across MEDLINE, Embase, Scopus, PsycINFO, CINAHL, Google Scholar, and relevant gray literature sources up to March 14, 2025. Studies were included if they focused on family caregivers\u2019 experiences in home-based hospice care settings, excluding those that addressed only patients or health care providers. Two independent reviewers performed study selection, data extraction, and quality assessment using the Critical Appraisal Skills Programme checklist. Data were synthesized using a 3-step thematic synthesis approach, and the confidence in the findings was assessed via the GRADE-CERQual (Grading of Recommendations Assessment, Development, and Evaluation\u2013Confidence in the Evidence from Reviews of Qualitative Research) framework.<\/jats:p>\n <\/jats:sec>\n \n Results<\/jats:title>\n Five studies published between 1989 and 2022 from diverse geographical regions (including Asia and Western settings) met the inclusion criteria. Two major themes emerged: (1) being physically and emotionally present, where caregivers expressed a strong commitment to remain with their loved ones, providing emotional support and maintaining a sense of control; and (2) sharing responsibilities, which underscored the importance of both formal support from palliative care teams and informal support from family and friends in mitigating caregiver burden. These findings directly address the study\u2019s aims by illustrating how caregivers balance emotional commitment with the practical challenges of providing home-based care.<\/jats:p>\n <\/jats:sec>\n \n Conclusions<\/jats:title>\n Although family caregivers are dedicated to delivering high-quality, personalized care, they encounter significant emotional and logistical challenges. Variability in study settings, potential recall bias from retrospective interviews, and limited gray literature access may affect the generalizability of the findings. This meta-synthesis underscores the essential role of family involvement in home-based hospice care for patients with terminal cancer. The combined reliance on emotional commitment and shared responsibilities\u2014with support from professional care teams\u2014is vital for optimal care delivery. Future interventions should enhance formal and informal support systems to meet family caregivers\u2019 diverse needs better.<\/jats:p>\n <\/jats:sec>","DOI":"10.2196\/71596","type":"journal-article","created":{"date-parts":[[2025,4,15]],"date-time":"2025-04-15T11:25:06Z","timestamp":1744716306000},"page":"e71596-e71596","source":"Crossref","is-referenced-by-count":9,"title":["Family Experiences, Needs, and Perceptions in Home-Based Hospice Care for Patients With Terminal Cancer: Meta-Synthesis and Systematic Review"],"prefix":"10.2196","volume":"11","author":[{"ORCID":"https:\/\/orcid.org\/0009-0000-3349-6821","authenticated-orcid":false,"given":"Xin Ming","family":"Deng","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0208-6739","authenticated-orcid":false,"given":"Kanokwan","family":"Hounsri","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8844-0331","authenticated-orcid":false,"given":"Violeta","family":"Lopez","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0641-3060","authenticated-orcid":false,"given":"Wilson Wai-San","family":"Tam","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1010","published-online":{"date-parts":[[2025,6,19]]},"reference":[{"issue":"4","key":"R1","doi-asserted-by":"publisher","first-page":"754","DOI":"10.1016\/j.jpainsymman.2020.04.027","article-title":"Redefining palliative care-a new consensus-based definition","volume":"60","author":"Radbruch","journal-title":"J Pain Symptom Manage"},{"key":"R2","unstructured":"2023 edition: hospice facts and figures. National Hospice and Palliative Care Organization; 2023. URL: https:\/\/allianceforcareathome.org\/wp-content\/uploads\/NHPCO-Facts-Figures-2023.pdf [Accessed 05-06-2025]"},{"key":"R3","unstructured":"Palliative care. World Health Organization. 2020. URL: https:\/\/www.who.int\/news-room\/fact-sheets\/detail\/palliative-care [Accessed 05-08-2020]"},{"issue":"6","key":"R4","doi-asserted-by":"publisher","first-page":"394","DOI":"10.3322\/caac.21492","article-title":"Global cancer statistics 2018: GLOBOCAN estimates of incidence and mortality worldwide for 36 cancers in 185 countries","volume":"68","author":"Bray","journal-title":"CA Cancer J Clin"},{"issue":"5","key":"R5","doi-asserted-by":"publisher","first-page":"E359","DOI":"10.1002\/ijc.29210","article-title":"GLOBOCAN 2012: estimated cancer incidence, mortality and prevalence worldwide in 2012","volume":"136","author":"Ferlay","journal-title":"Int J Cancer"},{"issue":"3","key":"R6","doi-asserted-by":"publisher","first-page":"287","DOI":"10.1089\/jpm.2000.3.287","article-title":"Place of care in advanced cancer: a qualitative systematic literature review of patient preferences","volume":"3","author":"Higginson","journal-title":"J Palliat Med"},{"issue":"6","key":"R7","doi-asserted-by":"publisher","first-page":"1133","DOI":"10.1200\/JCO.2003.03.059","article-title":"Identifying potential indicators of the quality of end-of-life cancer care from administrative data","volume":"21","author":"Earle","journal-title":"J Clin Oncol"},{"key":"R8","unstructured":"What is hospice care? American Cancer Society. URL: https:\/\/www.cancer.org\/cancer\/end-of-life-care\/hospice-care\/what-is-hospice-care.html [Accessed 07-05-2024]"},{"issue":"4","key":"R9","doi-asserted-by":"publisher","first-page":"422","DOI":"10.1136\/bmjspcare-2012-000424","article-title":"Effect of a home-based end-of-life nursing service on hospital use at the end of life and place of death: a study using administrative data and matched controls","volume":"3","author":"Chitnis","journal-title":"BMJ Support Palliat Care"},{"issue":"2","key":"R10","doi-asserted-by":"publisher","first-page":"279","DOI":"10.1016\/j.jpainsymman.2012.02.017","article-title":"Do community specialist palliative care services that provide home nursing increase rates of home death for people with life-limiting illnesses? A systematic review and meta-analysis of comparative studies","volume":"45","author":"Luckett","journal-title":"J Pain Symptom Manage"},{"key":"R11","unstructured":"Leff B Montalto M . Hospitals at home: patients receive care at home to ease overcrowding. CBS News. 2023. URL: https:\/\/www.cbsnews.com\/news\/hospitals-at-home-patients-reduce-overcrowding [Accessed 07-05-2024]"},{"issue":"1","key":"R12","doi-asserted-by":"publisher","first-page":"23","DOI":"10.1089\/jpm.2016.0265","article-title":"The impact of a home-based palliative care program in an accountable care organization","volume":"20","author":"Lustbader","journal-title":"J Palliat Med"},{"issue":"2","key":"R13","doi-asserted-by":"publisher","first-page":"309","DOI":"10.1016\/j.jpainsymman.2020.03.015","article-title":"Low socioeconomic status associated with lower utilization of hospice care services during end-of-life treatment in patients with cancer: a population-based cohort study","volume":"60","author":"Lai","journal-title":"J Pain Symptom Manage"},{"issue":"5","key":"R14","doi-asserted-by":"publisher","first-page":"e356","DOI":"10.1016\/j.jpainsymman.2024.07.005","article-title":"Enhancing end-of-life care with home-based palliative interventions: a systematic review","volume":"68","author":"Feliciano","journal-title":"J Pain Symptom Manage"},{"key":"R15","unstructured":"2024 outlook: home health, hospice and personal care. HealthCare Appraisers. URL: https:\/\/healthcareappraisers.com\/2024-outlook-home-health-hospice-and-personal-care [Accessed 07-05-2024]"},{"issue":"6","key":"R16","doi-asserted-by":"publisher","first-page":"628","DOI":"10.1177\/1049909113499603","article-title":"Providing hospice home care to the terminally ill elderly people with cancer in Taiwan: family experiences and needs","volume":"31","author":"Lee","journal-title":"Am J Hosp Palliat Care"},{"key":"R17","doi-asserted-by":"publisher","DOI":"10.3389\/fpsyg.2021.787724","article-title":"A cross-cultural study of filial piety and palliative care knowledge: moderating effect of culture and universality of filial piety","volume":"12","author":"Li","journal-title":"Front Psychol"},{"key":"R18","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.n71","article-title":"The PRISMA 2020 statement: an updated guideline for reporting systematic reviews","volume":"372","author":"Page","journal-title":"BMJ"},{"key":"R19","doi-asserted-by":"crossref","unstructured":"Major C Savin-Baden M . An Introduction to Qualitative Research Synthesis: Managing the Information Explosion in Social Science Research. Routledge; 2010. [doi: 10.4324\/9780203497555]","DOI":"10.4324\/9780203497555"},{"key":"R20","doi-asserted-by":"crossref","unstructured":"Noblit GW Hare RD . Meta-Ethnography: Synthesizing Qualitative Studies. Sage Publications; 1988. ISBN: 978-0803934418","DOI":"10.4135\/9781412985000"},{"key":"R21","unstructured":"Sandelowski M Barroso J . Handbook for Synthesizing Qualitative Research. Springer Publishing Company; 2007. ISBN: 978-0826156945"},{"issue":"4","key":"R22","doi-asserted-by":"publisher","first-page":"671","DOI":"10.1016\/s0277-9536(02)00064-3","article-title":"Evaluating meta-ethnography: a synthesis of qualitative research on lay experiences of diabetes and diabetes care","volume":"56","author":"Campbell","journal-title":"Soc Sci Med"},{"key":"R23","doi-asserted-by":"publisher","DOI":"10.1186\/1471-2288-8-21","article-title":"Conducting a meta-ethnography of qualitative literature: lessons learnt","volume":"8","author":"Atkins","journal-title":"BMC Med Res Methodol"},{"issue":"10","key":"R24","doi-asserted-by":"publisher","first-page":"1435","DOI":"10.1177\/1049732312452938","article-title":"Beyond PICO: the SPIDER tool for qualitative evidence synthesis","volume":"22","author":"Cooke","journal-title":"Qual Health Res"},{"key":"R25","unstructured":"Thomas J Chandler J Cumpston M Li T Page MJ Welch VA , editors. Cochrane Handbook for Systematic Reviews of Interventions, Version 6.4. Cochrane; 2023. URL: https:\/\/training.cochrane.org\/handbook [Accessed 05-06-2025]"},{"key":"R26","unstructured":"EndNote. URL: https:\/\/endnote.com [Accessed 07-05-2024]"},{"issue":"1","key":"R27","doi-asserted-by":"publisher","DOI":"10.1186\/s13643-016-0384-4","article-title":"Rayyan-a web and mobile app for systematic reviews","volume":"5","author":"Ouzzani","journal-title":"Syst Rev"},{"key":"R28","unstructured":"CASP qualitative checklist. Critical Appraisal Skills Programme (CASP). 2019. URL: https:\/\/casp-uk.net\/casp-tools-checklists\/qualitative-studies-checklist [Accessed 07-05-2024]"},{"issue":"2","key":"R29","doi-asserted-by":"publisher","first-page":"77","DOI":"10.1191\/1478088706qp063oa","article-title":"Using thematic analysis in psychology","volume":"3","author":"Braun","journal-title":"Qual Res Psychol"},{"issue":"Suppl 1","key":"R30","doi-asserted-by":"publisher","DOI":"10.1186\/s13012-017-0688-3","article-title":"Applying GRADE-CERQual to qualitative evidence synthesis findings: introduction to the series","volume":"13","author":"Lewin","journal-title":"Implement Sci"},{"issue":"1","key":"R31","doi-asserted-by":"publisher","DOI":"10.1186\/s12904-020-00705-y","article-title":"A qualitative study of bereaved family caregivers: feeling of security, facilitators and barriers for rural home care and death for persons with advanced cancer","volume":"20","author":"Barlund","journal-title":"BMC Palliat Care"},{"key":"R32","unstructured":"Hull MM . A family experience: hospice supported home care of a dying relative [Dissertation]. Rochester, NY: University of Rochester; 1989."},{"issue":"E","key":"R33","doi-asserted-by":"publisher","first-page":"1623","DOI":"10.3889\/oamjms.2022.8573","article-title":"The suffering experiences: family caregiver of home based palliative care in Malaysia","volume":"10","author":"Albert","journal-title":"Open Access Maced J Med Sci"},{"issue":"9","key":"R34","doi-asserted-by":"publisher","first-page":"605","DOI":"10.1002\/pon.774","article-title":"Exploring comprehensibility and manageability in palliative home care: an interview study of dying cancer patients\u2019 informal carers","volume":"13","author":"Milberg","journal-title":"Psychooncology"},{"key":"R35","doi-asserted-by":"publisher","DOI":"10.1186\/s13643-020-01388-2","article-title":"Enablers and barriers of people with chronic musculoskeletal pain for engaging in telehealth interventions: protocol for a qualitative systematic review and meta-synthesis","volume":"9","author":"Fernandes","journal-title":"Syst Rev"},{"issue":"Suppl 1","key":"R36","doi-asserted-by":"publisher","DOI":"10.1186\/s13012-017-0690-9","article-title":"Applying GRADE-CERQual to qualitative evidence synthesis findings-paper 3: how to assess methodological limitations","volume":"13","author":"Munthe-Kaas","journal-title":"Implement Sci"},{"issue":"Suppl 1","key":"R37","doi-asserted-by":"publisher","DOI":"10.1186\/s13012-017-0691-8","article-title":"Applying GRADE-CERQual to qualitative evidence synthesis findings-paper 4: how to assess coherence","volume":"13","author":"Colvin","journal-title":"Implement Sci"},{"key":"R38","unstructured":"Glenton C Bohren MA Downe S Paulsen EJ Lewin S . Cochrane Qualitative Evidence Synthesis: Protocol and Review Template Version 14b. Cochrane; 2023. [doi: 10.5281\/zenodo.5101812]"},{"key":"R39","doi-asserted-by":"crossref","unstructured":"Noyes J Booth A Cargo M et al. Qualitative evidence. In: Higgins JPT Thomas J Chandler J et al, editors. Cochrane Handbook for Systematic Reviews of Interventions. Wiley; 2019:525-545. [doi: 10.1002\/9781119536604]","DOI":"10.1002\/9781119536604.ch21"},{"issue":"1","key":"R40","doi-asserted-by":"publisher","DOI":"10.1186\/s12904-017-0206-z","article-title":"Quality of life, psychological burden, needs, and satisfaction during specialized inpatient palliative care in family caregivers of advanced cancer patients","volume":"16","author":"Ullrich","journal-title":"BMC Palliat Care"},{"issue":"2","key":"R41","doi-asserted-by":"publisher","first-page":"145","DOI":"10.1177\/0022146510395592","article-title":"Mechanisms linking social ties and support to physical and mental health","volume":"52","author":"Thoits","journal-title":"J Health Soc Behav"},{"issue":"5","key":"R42","doi-asserted-by":"publisher","first-page":"495","DOI":"10.1089\/jpm.2015.0322","article-title":"Cultural meanings of pain and palliative care: a systematic review and implications for practice","volume":"19","author":"Koffman","journal-title":"J Palliat Med"},{"issue":"1","key":"R43","doi-asserted-by":"publisher","first-page":"48","DOI":"10.1186\/s12904-024-01308-1","article-title":"Family caregivers\u2019 support needs in home-based palliative care: a qualitative study","volume":"23","author":"Liu","journal-title":"BMC Palliat Care"},{"issue":"4","key":"R44","doi-asserted-by":"publisher","DOI":"10.1136\/bmjspcare-2017-001407.2","article-title":"Palliative home care: a systematic review of caregivers\u2019 experiences","volume":"7","author":"Brandt","journal-title":"BMJ Support Palliat Care"}],"container-title":["JMIR Cancer"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/cancer.jmir.org\/2025\/1\/e71596","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,6,30]],"date-time":"2026-06-30T18:01:10Z","timestamp":1782842470000},"score":1,"resource":{"primary":{"URL":"https:\/\/cancer.jmir.org\/2025\/1\/e71596"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,6,19]]},"references-count":44,"URL":"https:\/\/doi.org\/10.2196\/71596","relation":{},"ISSN":["2369-1999"],"issn-type":[{"value":"2369-1999","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,6,19]]},"article-number":"v11i4e71596"}}