Caring for a child with Juvenile Huntington’s Disease: helpful and unhelpful support

Abstract

There has been little research into the psychosocial impact of Juvenile Huntington’s Disease on the child and family. This study investigates the social and health care needs of those affected by Juvenile Huntington’s Disease. Ten semi-structured interviews with carers were analysed using the qualitative methodology interpretative phenomenological analysis. This article reports three themes on the social support that families received. The first theme describes how parents perceived the support that they received from family and friends. The second and third themes describe how parents perceived helpful and unhelpful experiences of professional support. This corresponds to the view that social support is a ‘double-edged sword’, which can both ameliorate the effects of, and be a source of, stress. This information should be useful to those supporting the family of a child with a chronic or terminal illness.

Keywords

childhood illness interpretative phenomenological analysis Juvenile Huntington’s Disease parent qualitative social support

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