Asian Carers' Experiences of Medical and Social Care: The Case of Cerebral Palsy

Abstract

Summary This paper discusses the experience of South Asian carers of a person with cerebral palsy. Previous research in this area has failed to explore carers’ perceptions of causation or their views on the quality of service support. Qualitative interviews were carried out with twenty carers in two localities in the north of England with the aim of providing in-depth contextualized data on their experiences over time, their attitudes towards cerebral palsy and their interactions with service provision. Results show that parents’ views on causation differ markedly from explanations based on a medical, genetic model of cause. Parental attitudes towards cerebral palsy are shown to be influenced both by interactions with service professionals and by parents’ ability to manage their situation. The absence of adequate material and emotional resources may foster a negative construction of disability by parents that, in turn, has detrimental effects on the individual with cerebral palsy. Parents’ religious beliefs can act as a source of emotional support that helps them develop a constructive perspective on disability and deal with future uncertainty. We conclude that developments in service provision need to build on the perspectives of South Asian individuals and communities to respond effectively to their needs. There is considerable evidence that inequality and exclusion are characteristic of the experience of South Asian communities in the UK. Socio-economic disadvantage is apparent in higher levels of poverty, poorer housing, and higher unemployment than is found in majority ethnic communities (Modood et al., 1997). In health and health care this inequality is replicated; socio-economic deprivation and differences in the quality of care received have been suggested as factors in the higher incidence of