The personal experience of parenting a child with Juvenile Huntington’s Disease: perceptions across Europe

Eatough, Virginia and Santini, H. and Eiser, C. and Goller, M.-L. and Krysa, W. and de Nicola, A. and Paduanello, M. and Petrollini, M. and Rakowicz, M. and Squitieri, F. and Tibben, A. and Lee Weille, K. and Landwehrmeyer, B. and Quarrell, O. and Smith, Jonathan A. (2013) The personal experience of parenting a child with Juvenile Huntington’s Disease: perceptions across Europe. European Journal of Human Genetics 21 , pp. 1042-1048. ISSN 1018-4813.

Abstract

The study reported here presents a detailed description of what it is like to parent a child with juvenile Huntington’s disease in families across four European countries. Its primary aim was to develop and extend findings from a previous UK study. The study recruited parents from four European countries: Holland, Italy, Poland and Sweden,. A secondary aim was to see the extent to which the findings from the UK study were repeated across Europe and the degree of commonality or divergence across the different countries. Fourteen parents who were the primary caregiver took part in a semistructured interview. These were analyzed using an established qualitative methodology, interpretative phenomenological analysis. Five analytic themes were derived from the analysis: the early signs of something wrong; parental understanding of juvenile Huntington’s disease; living with the disease; other people’s knowledge and understanding; and need for support. These are discussed in light of the considerable convergence between the experiences of families in the United Kingdom and elsewhere in Europe.

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