Perceptions of informal stroke caregivers’ regarding respite care in Kedah, Malaysia: an exploratory qualitative study

Respite care offers vital temporary relief for informal caregivers, yet it remains severely underutilized in Asian societies, including Malaysia, where family caregiving typically defaults to the norm. This qualitative study explores the perceptions of informal stroke caregivers in Kedah, Malaysia, regarding their awareness of, barriers to, and utilization of respite care. An exploratory qualitative approach was used, involving semi-structured in-depth interviews (IDIs) with 18 purposively sampled informal stroke caregivers recruited from public stroke step-down clinics. To mitigate positionality and social desirability bias, interviews were conducted in neutral environments by a researcher with no clinical relationship to the participants. Data management was assisted by ATLAS.ti 25 software. Thematic analysis followed a hybrid deductive and inductive approach, theoretically guided by the Andersen Behavioral Model of Health Services Use (BMHSU) to systematically categorize caregiving experiences into predisposing, enabling, and need factors. Five key themes emerged: (1) limited awareness and fragmented communication (2), dual benefits of caregiver restoration and professional skill acquisition (3), financial challenges and socioeconomic vulnerability (4), emotional, logistical, and administrative barriers, and (5) filial responsibility and cultural dynamics. Applying the BMHSU revealed that while caregivers reported substantial perceived need (caregiver strain), service utilization was overridden by restrictive enabling factors and predisposing cultural barriers. To transition from “familialism by default” to “supported familialism” in rural Malaysia, health systems must resolve these multi-dimensional barriers. This requires a dual-tiered strategy: immediately integrating respite referrals as clinician-led “social prescriptions” in primary care while deploying mobile respite units, alongside long-term reforms focusing on social insurance financing, strict workforce accreditation, and decentralized welfare subsidies.