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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Acknowledgements
Thanks to the European Huntington’s Disease Network (EHDN) for funding this project. The study was initiated by the EHDN JHD Working Group. We acknowledge and thank Dr Elżbieta Zdzienicka from Poland who had a major interest in Huntington’s disease and has helped with this project; she died earlier this year. Thanks to the two anonymous reviewers for helpful comments on an earlier version of this paper.
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Eatough, V., Santini, H., Eiser, C. et al. The personal experience of parenting a child with Juvenile Huntington’s Disease: perceptions across Europe. Eur J Hum Genet 21, 1042–1048 (2013). https://doi.org/10.1038/ejhg.2013.15
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DOI: https://doi.org/10.1038/ejhg.2013.15
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