Preserving identity through caregiving: A systematic review and meta-synthesis of minority informal caregivers' experiences caring for older adults with neurological conditions.

Abstract

Neurological conditions, including dementia, Parkinson's disease, and stroke, are rising globally, increasing reliance on informal caregivers, particularly within ethnic minority communities. However, little is known about these caregivers' experiences in the European context. This review aimed to explore how ethnic minority informal caregivers construct meaning around and navigate their caregiving roles. A systematic search of four electronic databases in August 2024 identified 18 qualitative studies involving 258 caregivers from the UK (n = 14), Norway (n = 2), the Netherlands (n = 1), and Germany (n = 1). Thematic synthesis revealed two key caregiving narratives. First, preserving cultural identity through caregiving illustrates how caregiving serves as a means of upholding cultural values, reinforcing community identity, and maintaining the dignity and personhood of care recipients. Second, negotiating traditional expectations with modern realities highlights how caregivers balance inherited cultural norms with contemporary life demands, actively reinterpreting cultural beliefs and drawing upon resilience strategies shaped by migration experiences. Together, these findings indicate that caregiving among ethnic minority groups is both a means of preserving cultural identity and adapting to changing social norms. The findings are discussed and contextualized within existing theories and literature, offering implications for policy, healthcare services, and future research.