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Caring through the final phase : a meta-synthesis of family experiences, needs and perceptions in home-based hospice care for terminal cancer patients
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BACKGROUND: Home-based hospice care offers terminal cancer patients 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.
OBJECTIVE: This meta-synthesis aims to systematically review and synthesise qualitative evidence regarding the experiences, needs, and perceptions of family caregivers in home-based hospice care for terminal cancer patients. The goal is identifying key themes that can improve caregiver support and service delivery.
METHODS: A systematic search was conducted across MEDLINE, EMBASE, SCOPUS, PsycINFO, CINAHL, Google Scholar and relevant grey literature sources up to 14 March 2025. Studies were included if they focused on family caregivers' experiences in home-based hospice care settings, excluding those that addressed only patients or healthcare providers. Two independent reviewers performed study selection, data extraction, and quality assessment using the Critical Appraisal Skills Programme (CASP) checklist. Data were synthesised using a three-step thematic synthesis approach, and the confidence in the findings was assessed via the GRADE-CERQual framework.
RESULTS: 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's aims by illustrating how caregivers balance emotional commitment with the practical challenges of providing home-based care.
CONCLUSIONS: While family caregivers are dedicated to delivering high-quality, personalised care, they encounter significant emotional and logistical challenges. Variability in study settings, potential recall bias from retrospective interviews, and limited grey literature access may affect the generalisability of the findings. This meta-synthesis underscores the essential role of family involvement in home-based hospice care for terminal cancer patients. The combined reliance on emotional commitment and shared responsibilities-with support from professional care teams-is vital for optimal care delivery. Future interventions should enhance formal and informal support systems to meet family caregivers' diverse needs better.
CLINICALTRIAL: Prospero: CRD42023486012.
http://dx.doi.org/10.2196/71596
Autres numéros de la revue «JMIR cancer»
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