Decision-making experiences of patients receiving palliative care and their caregivers regarding transitions from hospital to community: A systematic review of qualitative studies

BACKGROUND: Transitioning from hospital to community represents a vulnerable stage in the palliative care journey for patients with advanced illness. The decision regarding care setting is often shaped by multiple factors and involves a range of challenges and burdens. AIM: To synthesise the decision-making experiences of patients with advanced illness and their caregivers during transitions from hospital to community palliative care. DESIGN: A systematic review of qualitative studies. Thomas and Harden's thematic analysis approach was used for data synthesis. The review protocol was registered in PROSPERO (CRD42023494617). DATA SOURCES: PubMed, Web of Science, The Cochrane Library, Embase, CINAHL, CNKI, WanFang and Vip were searched up to 22 November 2023. RESULTS: Ten papers were included in this review. Three themes emerged: (a) perceived insecurity of transfer, highlighting perceived risks associated with transitions and the resulting decision-making difficulties; (b) balancing priorities in care, reflecting how patients and caregivers weigh multiple considerations, including medical support, caregiving capacity and personal commitment; and (c) love and belonging-regaining meaning of lives, illustrating the spiritual meaning of care settings for patients and caregivers. CONCLUSIONS: Patients with complex psychosocial needs and their caregivers were particularly vulnerable during the decision-making process, especially when external support was insufficient. Therefore, healthcare providers are recommended to actively engage by enhancing communication skills and utilising decision aid tools to provide comprehensive and sufficient information to patients and caregivers.