Wenjing Zou, Wen Zhou, Jia Li, Zhengrong Xie, Chunlian Liao
Family caregivers endure multidimensional burdens spanning physical, psychological, familial, social, and service-access domains. This synthesis highlights sudden emotional outbursts and persistent hypervigilance as experiences warranting more systematic clinical attention, indicating that caregivers' needs extend beyond traditional instrumental support. Stroke rehabilitation and long-term care systems should embed systematic caregiver assessment at discharge, provide targeted education, establish respite and psychosocial referral pathways, and address economic and family-level factors to safeguard caregiver wellbeing and sustain their caregiving capacity.
BACKGROUND: Stroke is a leading cause of long-term disability globally, and many survivors rely on family for ongoing home-based care. Although existing systematic reviews have examined caregiver experiences, they typically encompass mixed populations or designs, indicating a need for a dedicated qualitative synthesis of family caregivers' lived experiences in this setting.
OBJECTIVE: To synthesize qualitative evidence on the experiences of family caregivers of stroke survivors, with particular attention to the challenges they face and their support needs.
METHODS: Following PRISMA 2020, four databases were searched for qualitative studies published from 2019 to 2024. Methodological quality was assessed using the Crowe Critical Appraisal Tool, and thematic synthesis (Thomas and Harden) was applied. The protocol was registered with PROSPERO (CRD420251064698).
RESULTS: Eight studies involving 139 caregivers from five countries were included. Study quality ranged from 87.5% to 97.5%. Five main themes and ten subthemes were generated: (1) Demanding daily caregiving burden; (2) Heavy psychological and emotional burden; (3) Family burden and relational strain; (4) Reduced social participation; (5) Needs and challenges in support services.
CONCLUSION: Family caregivers endure multidimensional burdens spanning physical, psychological, familial, social, and service-access domains. This synthesis highlights sudden emotional outbursts and persistent hypervigilance as experiences warranting more systematic clinical attention, indicating that caregivers' needs extend beyond traditional instrumental support. Stroke rehabilitation and long-term care systems should embed systematic caregiver assessment at discharge, provide targeted education, establish respite and psychosocial referral pathways, and address economic and family-level factors to safeguard caregiver wellbeing and sustain their caregiving capacity.