ArticleJournal of advanced nursing2012
Family carer personal concerns in Huntington disease.
Article in Journal of advanced nursing, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 22 papers, 1 of them a synthesis that pooled it.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
22 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Person-centred integrated care for people living with Parkinson's, Huntington's and Multiple Sclerosis: A systematic review.Health expectations : an international journal of public participation in health care and health policy · 2024Pooled it
- The holistic burden of Huntington's disease: A qualitative study of multigenerational impact on individuals and family caregivers across Europe.Journal of Huntington's disease · 2026Article
- Higher educational attainment in Huntington disease families: evidence from the Enroll-HD study.Orphanet journal of rare diseases · 2026Article
- 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
- Huntington's disease caregivers: A qualitative exploration of caregivers experience.Journal of health psychology · 2026Article
- Living with Risk, Aging with Uncertainty: A Narrative Review of Health and Genetic Vulnerability in Huntington's Disease.Biomedicines · 2025Review
- Navigating competing needs: a qualitative study on parenthood with a partner with Huntington's disease.Health psychology and behavioral medicine · 2025Article
- Article
- Primary health care professionals' experiences with caring for patients with advanced Huntington's disease: a qualitative study.BMC primary care · 2024Article
- Layers of Loss: A Scoping Review and Taxonomy of HD Caregivers' Spiritual Suffering, Grief/Loss and Coping Strategies.Journal of pain and symptom management · 2023Article
- Health related quality of life, service utilization and costs for patients with Huntington's disease in Norway.BMC health services research · 2022Article
- Social cognition and quality of life in Huntington's disease.Frontiers in psychiatry · 2022Article
- A framework for youth-friendly genetic counseling.Journal of community genetics · 2020Article
- Health state utility values (QALY weights) for Huntington's disease: an analysis of data from the European Huntington's Disease Network (EHDN).The European journal of health economics : HEPAC : health economics in prevention and care · 2019Article
- Exploring the Reliability and Validity of the Huntington's Disease Quality of Life Battery for Carers (HDQoL-C) within A Polish Population.International journal of environmental research and public health · 2019Article
- Life priorities in the HIV-positive Asians: a text-mining analysis in young vs. old generation.AIDS care · 2017Article
- Families Affected by Huntington's Disease Report Difficulties in Communication, Emotional Involvement, and Problem Solving.Journal of Huntington's disease · 2017Article
- The Spectrum of Caregiving in Palliative Care for Serious, Advanced, Rare Diseases: Key Issues and Research Directions.Journal of palliative medicine · 2016Article
- Development of the HD-Teen Inventory.Clinical nursing research · 2012Article
Corrections and comments
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Authors and funding
4 authors.
Funding
Abstract
aimTo examine and compare the personal concerns of family members providing care for people with Huntington disease in the United Kingdom and the United States.
backgroundFamily carers of people with Huntington disease may feel burdened by caregiving responsibilities and concerned about illness risk for relatives.
methodA mailed personal concerns survey was completed by 108 United Kingdom and 119 United States adult family carers of people with Huntington disease in 2006 and 2007. Survey responses included frequency and intensity of concerns, and narrative comments. Data were analysed using descriptive statistics of the products of frequency and intensity of reaction scores to identify a personal concerns index for items with the twelve highest combined scores. Factor analysis identified three factors, which were compared between respondents by factor and items within factors using t tests mean frequency by intensity scores. Narrative comments were thematically analysed.
resultsThree main factors were labelled impact of role change, sense of isolation and concerns for children. Within the role change factor, United States family caregivers had significantly higher concerns about family finances and United Kingdom carers expressed significantly greater personal sadness. Both groups expressed concern about isolation from family. Although family carers in both countries expressed concern about their children, those of United States caregivers were significantly higher.
conclusionFurther studies are required to identify benefits of support services that are specific to carer concerns and consistent with national healthcare systems.
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