Conceptual framework for caregivers' quality of life and well-being supporting children with special health and medical needs in East Asia: asystematic review and narrative synthesis.

PURPOSE

There is a growing need to understand how cultural, relational, and contextual factors shape the quality of life (QOL) and well-being of caregivers of children with special health and medical needs in East Asia. Currently, no culturally grounded conceptual framework exists, and the unique demands of caring for developmentally dependent children present distinct challenges. This study aimed to identify key factors influencing caregiver QOL and well-being in this context.

METHODS

We conducted a systematic review of qualitative studies examining QOL among caregivers of children with chronic or life-threatening conditions in East Asia. The databases searched included MEDLINE, Cochrane, EMBASE, PsycINFO, CINAHL, and Ichushi (to June 2024). Studies were included if they addressed informal caregiving for children and focused on QOL or well-being in East Asian countries. Existing reviews were used to identify relevant studies, with an additional search conducted for Japan. We applied a framework synthesis approach guided by the EQ-HWB conceptual model. Risk of bias was assessed using the CASP Qualitative Studies Checklist.

RESULTS

Fourteen studies met the inclusion criteria. Ten core themes emerged, including emotions, activity, role, social and family relationships, functioning, financial strain, and parenting. Role, family ties, and parenting were especially prominent in East Asian contexts.

CONCLUSIONS

Caregivers' experiences were deeply influenced by cultural factors such as collectivism, traditional norms, and stigma. These findings underscore the importance of culturally sensitive frameworks to assess caregiver QOL and to inform policies and interventions in East Asian health and social systems.