ArticleJournal of advanced nursing2010
Huntington disease: families' experiences of healthcare services.
Article in Journal of advanced nursing, 2010. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 20 papers, 1 of them a synthesis that pooled it.
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Who cites it
20 citing papers in PubMed, 1 synthesis or guideline pooled it, 70 citations in OpenAlex.
- 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
- Huntington's disease caregivers: A qualitative exploration of caregivers experience.Journal of health psychology · 2026Article
- Evidence of inequities experienced by the rare disease community with respect to receipt of a diagnosis and access to services: a scoping review of UK and international evidence.Orphanet journal of rare diseases · 2025Article
- Maintaining psychological well-being when living at risk of Huntington's disease: An interpretative phenomenological analysis.Journal of genetic counseling · 2025Article
- Emotional speech markers of psychiatric disturbance in Huntington's disease.Frontiers in psychiatry · 2025Article
- Navigating competing needs: a qualitative study on parenthood with a partner with Huntington's disease.Health psychology and behavioral medicine · 2025Article
- A scoping review of health literacy in rare disorders: key issues and research directions.Orphanet journal of rare diseases · 2024Article
- Article
- Understanding the Burdens Associated with Huntington's Disease in Manifest Patients and Care Partners-Comparing to Parkinson's Disease and the General Population.Brain sciences · 2022Article
- The known burden of Huntington disease in the North of Scotland: prevalence of manifest and identified pre-symptomatic gene expansion carriers in the molecular era.Journal of neurology · 2021Article
- Psychiatric morbidity and poor follow-up underlie suboptimal functional and survival outcomes in Huntington's disease.BMC neurology · 2020Article
- 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
- An International Validation of a Clinical Tool to Assess Carers' Quality of Life in Huntington's Disease.Frontiers in psychology · 2019Article
- Palliative Care in Huntington Disease: Personal Reflections and a Review of the Literature.Tremor and other hyperkinetic movements (New York, N.Y.) · 2017Review
- Further evidence of reliability and validity of the Huntington's disease quality of life battery for carers: Italian and French translations.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2013Article
- 'All the burden on all the carers': exploring quality of life with family caregivers of Huntington's disease patients.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2012Article
- Key outcomes from stakeholder workshops at a symposium to inform the development of an Australian national plan for rare diseases.Orphanet journal of rare diseases · 2012Article
- Therapy in Huntington's disease: where are we?Current neurology and neuroscience reports · 2012Review
- Development of the HD-Teen Inventory.Clinical nursing research · 2012Article
- Family carer personal concerns in Huntington disease.Journal of advanced nursing · 2012Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors at 3 institutions in 2 countries.
Funding
Abstract
aimThis paper is a report of a study of the perceptions of family caregivers regarding the availability and adequacy of health and social care services for their family member with Huntington disease, and to compare findings from these reports in United Kingdom and United States of America samples.
backgroundHuntington disease is an inherited neurodegenerative condition. Family members often take responsibility for care of relatives with long-term conditions. Studies have demonstrated there are both positive and negative outcomes for carers.
methodsDuring 2006 and 2007, respondents from the United Kingdom (n = 108) and the United States (n = 119) who were caring for a relative affected with Huntington disease completed the Community Health Care Services Scale to identify areas of concern and the extent to which specific issues bothered carers. Data were analysed using statistical tests including chi-square, t-tests and factor analysis. Results were compared between carers in the two cohorts.
resultsThree main factors were derived: 'community resources', 'individualized care' and 'knowledge of Huntington disease'. Carers had concerns about the knowledge of healthcare professionals providing care and thought that there were insufficient services to support them and the affected person. There were different challenges for carers when the affected person had a long-term neurodegenerative condition because these carers were also likely to have responsibilities for earning and caring for children.
conclusionComprehensive facilities and resources are needed to support families affected by long-term complex conditions. Healthcare professionals need to be aware of the health needs of carers as well as those of the affected person.
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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.