ArticleEuropean journal of human genetics : EJHG2013
The personal experience of parenting a child with juvenile Huntington's disease: perceptions across Europe.
Article in European journal of human genetics : EJHG, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers.
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Who cites it
10 citing papers in PubMed, 20 citations in OpenAlex.
- Review
- Clinical Review of Juvenile Huntington's Disease.Journal of Huntington's disease · 2024Review
- The Role of Parent/Caregiver with Children Affected by Rare Diseases: Navigating between Love and Fear.International journal of environmental research and public health · 2021Article
- A meta-ethnographic study of fathers' experiences of caring for a child with a life-limiting illness.Palliative medicine · 2021Article
- Juvenile Huntington's disease: two case reports and a review of the literature.Journal of medical case reports · 2020Review
- Diagnosing Juvenile Huntington's Disease: An Explorative Study among Caregivers of Affected Children.Brain sciences · 2020Article
- The experience of parents of children with rare diseases when communicating with healthcare professionals: towards an integrative theory of trust.Orphanet journal of rare diseases · 2019Article
- Huntington Disease as a Neurodevelopmental Disorder and Early Signs of the Disease in Stem Cells.Molecular neurobiology · 2018Review
- The supportive care needs of parents with a child with a rare disease: results of an online survey.BMC family practice · 2016Article
- Managing juvenile Huntington's disease.Neurodegenerative disease management · 2013Article
Corrections and comments
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Authors and funding
15 authors at 10 institutions in 6 countries.
Funding
No grant is acknowledged in the PubMed record.
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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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.