The personal experience of parenting a child with Juvenile Huntington's Disease: Perceptions across Europe

Virginia Eatough, Helen Santini, Christine Eiser, Marie Louise Goller, Wioletta Krysa, 'Annunziata' De Nicola, Matteo Paduanello, Martina Petrollini, Maria Rakowicz, Ferdinando Squitieri, Aad Tibben, Katie Lee Weille, Bernhard Landwehrmeyer, Oliver Quarrell, Jonathan A. Smith

Research output: Contribution to journalArticle

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.

Original languageEnglish
Pages (from-to)1042-1048
Number of pages7
JournalEuropean Journal of Human Genetics
Volume21
Issue number10
DOIs
Publication statusPublished - Oct 2013

Fingerprint

Huntington Disease
Parenting
Parents
Poland
Sweden
Netherlands
Italy
Caregivers
Interviews
United Kingdom

Keywords

  • Juvenile Huntington's disease
  • parent
  • qualitative

ASJC Scopus subject areas

  • Genetics(clinical)
  • Genetics

Cite this

Eatough, V., Santini, H., Eiser, C., Goller, M. L., Krysa, W., De Nicola, A., ... Smith, J. A. (2013). The personal experience of parenting a child with Juvenile Huntington's Disease: Perceptions across Europe. European Journal of Human Genetics, 21(10), 1042-1048. https://doi.org/10.1038/ejhg.2013.15

The personal experience of parenting a child with Juvenile Huntington's Disease : Perceptions across Europe. / Eatough, Virginia; Santini, Helen; Eiser, Christine; Goller, Marie Louise; Krysa, Wioletta; De Nicola, 'Annunziata'; Paduanello, Matteo; Petrollini, Martina; Rakowicz, Maria; Squitieri, Ferdinando; Tibben, Aad; Lee Weille, Katie; Landwehrmeyer, Bernhard; Quarrell, Oliver; Smith, Jonathan A.

In: European Journal of Human Genetics, Vol. 21, No. 10, 10.2013, p. 1042-1048.

Research output: Contribution to journalArticle

Eatough, V, Santini, H, Eiser, C, Goller, ML, Krysa, W, De Nicola, A, Paduanello, M, Petrollini, M, Rakowicz, M, Squitieri, F, Tibben, A, Lee Weille, K, Landwehrmeyer, B, Quarrell, O & Smith, JA 2013, 'The personal experience of parenting a child with Juvenile Huntington's Disease: Perceptions across Europe', European Journal of Human Genetics, vol. 21, no. 10, pp. 1042-1048. https://doi.org/10.1038/ejhg.2013.15
Eatough, Virginia ; Santini, Helen ; Eiser, Christine ; Goller, Marie Louise ; Krysa, Wioletta ; De Nicola, 'Annunziata' ; Paduanello, Matteo ; Petrollini, Martina ; Rakowicz, Maria ; Squitieri, Ferdinando ; Tibben, Aad ; Lee Weille, Katie ; Landwehrmeyer, Bernhard ; Quarrell, Oliver ; Smith, Jonathan A. / The personal experience of parenting a child with Juvenile Huntington's Disease : Perceptions across Europe. In: European Journal of Human Genetics. 2013 ; Vol. 21, No. 10. pp. 1042-1048.
@article{cc1b72b1b6594663a579a49cdcd8132f,
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.",
keywords = "Juvenile Huntington's disease, parent, qualitative",
author = "Virginia Eatough and Helen Santini and Christine Eiser and Goller, {Marie Louise} and Wioletta Krysa and {De Nicola}, 'Annunziata' and Matteo Paduanello and Martina Petrollini and Maria Rakowicz and Ferdinando Squitieri and Aad Tibben and {Lee Weille}, Katie and Bernhard Landwehrmeyer and Oliver Quarrell and Smith, {Jonathan A.}",
year = "2013",
month = "10",
doi = "10.1038/ejhg.2013.15",
language = "English",
volume = "21",
pages = "1042--1048",
journal = "European Journal of Human Genetics",
issn = "1018-4813",
publisher = "Nature Publishing Group",
number = "10",

}

TY - JOUR

T1 - The personal experience of parenting a child with Juvenile Huntington's Disease

T2 - Perceptions across Europe

AU - Eatough, Virginia

AU - Santini, Helen

AU - Eiser, Christine

AU - Goller, Marie Louise

AU - Krysa, Wioletta

AU - De Nicola, 'Annunziata'

AU - Paduanello, Matteo

AU - Petrollini, Martina

AU - Rakowicz, Maria

AU - Squitieri, Ferdinando

AU - Tibben, Aad

AU - Lee Weille, Katie

AU - Landwehrmeyer, Bernhard

AU - Quarrell, Oliver

AU - Smith, Jonathan A.

PY - 2013/10

Y1 - 2013/10

N2 - 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.

AB - 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.

KW - Juvenile Huntington's disease

KW - parent

KW - qualitative

UR - http://www.scopus.com/inward/record.url?scp=84884587033&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=84884587033&partnerID=8YFLogxK

U2 - 10.1038/ejhg.2013.15

DO - 10.1038/ejhg.2013.15

M3 - Article

C2 - 23443023

AN - SCOPUS:84884587033

VL - 21

SP - 1042

EP - 1048

JO - European Journal of Human Genetics

JF - European Journal of Human Genetics

SN - 1018-4813

IS - 10

ER -