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

Huntington’s Disease Association, London and School of Psychology, Birkbeck College, London, UK

Jonathan A. Smith, BA, MSc, DPhil

School of Psychology, Birkbeck College, London, UK

Virginia Eatough, BA, MA, PhD

School of Psychology, Birkbeck College, London, UK

Cath A. Stanley, RGN

Huntington’s Disease Association (England and Wales), London, UK

Neil W. Glendinning, MB, BS, MD

Huntington’s Disease Association, London, UK

Oliver W.J. Quarrell, BSc, MD, FRCP

Huntington’s Disease Association, London and North Trent, Clinical Genetics Service, Sheffield Children’s Hospital, Sheffield, UK

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.

Key Words: childhood illness • interpretative phenomenological analysis • Juvenile Huntington’s Disease • parent • qualitative • social support

Journal of Child Health Care, Vol. 11, No. 1, 40-52 (2007)
DOI: 10.1177/1367493507073060


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