The experiences of British South Asian carers caring for a child with developmental disabilities in the UK

Abstract

Purpose – The purpose of this paper is to explore the role of culture in shaping the caregiving experiences of British South Asian families caring for a child with developmental disabilities in the UK. In particular it explores how the coexistence of two distinct cultures (British/South Asian) impacts upon these caregiving experiences. Design/methodology/approach – A qualitative design using in-depth interviews and interpretative phenomenological analysis was used with seven parents identifying as British South Asian who had been born in the UK or had moved to the UK as young people. Findings – Three master themes emerged: living with loss, uncertainty and overwhelming responsibility; learning about disability and facing stigma; and having to cope. Research limitations/implications – Using a relatively homogeneous sample of carers this study provides an insight into how exposure to two different cultures shapes the understanding and adaptations of British South Asian carers in the UK. Social implications – Issues in the acculturation of these parents emerge which demonstrate the tensions they face in relating to both South Asian and Western cultural influences. The study makes recommendations for how services can work with such families in order to help them make sense of their children’s disability, access culturally appropriate support and cope with the numerous demands of being a caregiver. Originality/value – This paper contributes to a growing literature on the experience of South Asian parents who care for children with intellectual disabilities. It has important messages for workers about how to support these individuals most effectively.