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 language | English |
|---|---|
| Pages (from-to) | 1042-1048 |
| Number of pages | 7 |
| Journal | European Journal of Human Genetics |
| Volume | 21 |
| Issue number | 10 |
| DOIs | |
| Publication status | Published - Oct 2013 |
Fingerprint
Keywords
- Juvenile Huntington's disease
- parent
- qualitative
ASJC Scopus subject areas
- Genetics(clinical)
- Genetics
Cite this
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 journal › Article
}
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 -