Under a cloud: carers' experiences of Huntington's disease

Abstract

This paper explores the unique blend of social, emotional and practical issues faced by family members of people with Huntington's disease (HD), highlighting how social workers can provide support. It is based on doctoral research into the experiences of carers of people with Huntington's disease. This was a qualitative study of 31 participants in single semi‐structured interviews, using a grounded theory methodology.After a brief introduction to Huntington's disease, the focus shifts to how Huntington's disease impacts on family members from pre‐diagnosis to death. The discussion then considers how practitioners could assist at various stages in this process. As well as providing practitioners with an insight into carers' experiences, the paper highlights how social workers can ameliorate some of the impacts on their relationships. The paper concludes that services' preoccupation with the practical and emotional burden of caring neglects the social relationships that form the context in which illness and disease are experienced and meanings are generated. The sense that is made from a situation has a significant impact on the degree to which people feel able to continue to care.

Citation

Mantell, A. (2010), "Under a cloud: carers' experiences of Huntington's disease", Social Care and Neurodisability, Vol. 1 No. 2, pp. 33-42. https://doi.org/10.5042/scn.2010.0431