ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2012
'All the burden on all the carers': exploring quality of life with family caregivers of Huntington's disease patients.
Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT02464293 (A Pilot Evaluation of Mindfulness-based Cognitive Therapy for People With Huntington's Disease), which is not on this map. Cited by 29 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
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.
A Pilot Evaluation of Mindfulness-based Cognitive Therapy for People With Huntington's Disease
Who cites it
29 citing papers in PubMed.
- An app-based just-in-time-adaptive self-management intervention for care partners: The CareQOL feasibility pilot study.Rehabilitation psychology · 2022Trial
- 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
- 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
- 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
- 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
- Navigating competing needs: a qualitative study on parenthood with a partner with Huntington's disease.Health psychology and behavioral medicine · 2025Article
- Development of the Huntington Support App (HD-eHelp study): a human-centered and co-design approach.Frontiers in neurology · 2024Article
- Caring for Children with Dravet Syndrome: Exploring the Daily Challenges of Family Caregivers.Children (Basel, Switzerland) · 2023Article
- Brain, cognitive, and physical disability correlates of decreased quality of life in patients with Huntington's disease.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2023Article
- 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
- Needs of informal caregivers of people with a rare disease: a rapid review of the literature.BMJ open · 2022Review
- Psychosocial Impact of Huntington's Disease and Incentives to Improve Care for Affected Families in the Underserved Region of the Slovak Republic.Journal of personalized medicine · 2022Article
- Social cognition and quality of life in Huntington's disease.Frontiers in psychiatry · 2022Article
- An App-Based Just-in-Time Adaptive Self-management Intervention for Care Partners (CareQOL): Protocol for a Pilot Trial.JMIR research protocols · 2021Article
- Moving beyond family: unequal burden across mental health patients' social networks.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2021Article
- End of life care for long-term neurological conditions: A meta-ethnographic review of the experiences of informal carers.Palliative medicine · 2021Review
- Study Protocol for the Development of a European eHealth Platform to Improve Quality of Life in Individuals With Huntington's Disease and Their Partners (HD-eHelp Study): A User-Centered Design Approach.Frontiers in neurology · 2021Article
- 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
Corrections and comments
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Authors and funding
3 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundExisting research suggests that family caregivers of persons with Huntington's disease face a unique series of problems, linked to the complex nature of the disease. There is little research that explicitly investigates the impact of HD on the quality of life (QoL) of the family caregiver. The purpose of this study was to explore the quality of life issues for family carers of Huntington's disease patients in a focus group setting.
methodsParticipants were recruited via a Huntington's Disease Association (HDA) family conference day. Six semi-directed focus groups (n = 47) explored disease-specific aspects of QoL that were deemed important to family carers of this carer group. Data were analysed using Interpretative Phenomenological Analysis (IPA).
resultsAnalysis of the focus group data identified four superordinate themes: 'Levels of Support', 'Dissatisfaction with Caregiving Role', 'Practical Aspects of Caring' and 'Feelings and Emotional Well-being'.
conclusionsThese data provide evidence that QoL is compromised in many ways for HD family carers. The carers in this study often negated their own needs as their caregiving role overwhelmed them and 'took over' their lives.
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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.