title: The personal experience of parenting a child with juvenile Huntington's disease: perceptions across Europe.
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.
authors: Department of Psychological Sciences, Birkbeck, University of London, London, UK.
authors: Virginia
authors: V
authors: Eatough
authors: Helen
authors: H
authors: Santini
authors: Christine
authors: C
authors: Eiser
authors: Marie-Louise
authors: ML
authors: Goller
authors: Wioletta
authors: W
authors: Krysa
authors: 'Annunziata'
authors: '
authors: de Nicola
authors: Matteo
authors: M
authors: Paduanello
authors: Martina
authors: M
authors: Petrollini
authors: Maria
authors: M
authors: Rakowicz
authors: Ferdinando
authors: F
authors: Squitieri
authors: Aad
authors: A
authors: Tibben
authors: Katie Lee
authors: KL
authors: Weille
authors: Bernhard
authors: B
authors: Landwehrmeyer
authors: Oliver
authors: O
authors: Quarrell
authors: Jonathan A
authors: JA
authors: Smith
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D005060:Europe; D005260:Female; D006801:Humans; D006816:Huntington Disease / Q000523:psychology*; D008297:Male; D010290:Parents / Q000523:psychology*