ArticleJournal of genetic counseling2014
An exploration of the experience of Huntington's disease in family dyads: an interpretative phenomenological analysis.
Article in Journal of genetic counseling, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers, 1 of them a synthesis that pooled it.
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Who cites it
13 citing papers in PubMed, 1 synthesis or guideline pooled it, 21 citations in OpenAlex.
- Experiences of young people growing up in a family with Huntington's disease: A meta-ethnography of qualitative research.Journal of genetic counseling · 2025Pooled it
- Psychosocial Impacts of Huntington's Disease on Individuals, Relatives and Family Systems: A Thematic Synthesis.Clinical genetics · 2026Review
- A Scoping Review of the Lived Experiences of Individuals With Huntington's Disease, Their Informal Caregivers and Offspring.Journal of advanced nursing · 2026Article
- Acceptance and commitment therapy with Huntington's disease: A narrative review and case report of a caregiver-assisted intervention.Journal of Huntington's disease · 2025Review
- Fluctuating salience in those living with genetic risk of motor neuron disease: A qualitative interview study.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- A qualitative study utilizing Interpretative phenomenological analysis to explore disclosure in adolescents with turner syndrome.British journal of health psychology · 2022Article
- Using a Clinical Formulation to Understand Psychological Distress in People Affected by Huntington's Disease: A Descriptive, Evidence-Based Model.Journal of personalized medicine · 2022Article
- Perceived Effects of Neuropsychiatric Symptoms on Functional Status in Early-stage Huntington Disease.Western journal of nursing research · 2022Article
- More than Just a Brain Disorder: A Five-Point Manifesto for Psychological Care for People with Huntington's Disease.Journal of personalized medicine · 2022Article
- Investigating the interplay of working memory, affective symptoms, and coping with stress in offspring of parents with Huntington's disease.Neuropsychology · 2020Article
- Article
- Families Affected by Huntington's Disease Report Difficulties in Communication, Emotional Involvement, and Problem Solving.Journal of Huntington's disease · 2017Article
- Irritability in Huntington's Disease: Factor Analysis of Snaith's Irritability Scale.Movement disorders clinical practiceArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Huntington's disease (HD) is a hereditary, late onset, neurodegenerative disorder. Children of affected parents have a 50 % chance of inheriting HD. Research into the psychological consequences of HD for the family has focussed on individual family members, but little is known about the ways in which its impact is jointly experienced by members of these families. This is particularly important due to the hereditary nature of HD. To address this, the current study examined the experiences of dyads within affected families. Seven parent/adult child dyads were interviewed jointly about their experiences and relationships with their family and each other and interpretative phenomenological analysis was used to analyse the resultant data. Identified themes were: "A spectre hanging over us": HD as a presence within the family, "Us against the world": Protection, knowledge and control, and "That could be me in 50 years": Cyclical changes in identity and role. These findings are examined in relation to previous research and indicate the need for an increased understanding of the needs of HD families. Clinical implications and suggestions for further research are discussed.
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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.