ArticleJournal of genetic counseling2008
Experiences of teens living in the shadow of Huntington Disease.
Article in Journal of genetic counseling, 2008. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 25 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
25 citing papers in PubMed, 1 synthesis or guideline pooled it.
- 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
- Maintaining psychological well-being when living at risk of Huntington's disease: An interpretative phenomenological analysis.Journal of genetic counseling · 2025Article
- Through their eyes: A retrospective mixed-methods study on the experiences and support needs of children growing up with a parent with Huntington's disease.Journal of Huntington's disease · 2025Article
- 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
- Dilemmas when talking about Huntington's disease: A qualitative study of offspring and caregiver experiences in Norway.Journal of genetic counseling · 2022Article
- 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
- 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
- Searching for Answers: Information-Seeking by Young People At-Risk for Huntington's Disease.Journal of Huntington's disease · 2022Article
- The Ripple Effect: A Qualitative Overview of Challenges When Growing Up in Families Affected by Huntington's Disease.Journal of Huntington's disease · 2020Article
- "This could be me": exploring the impact of genetic risk for Huntington's disease young caregivers.Journal of community genetics · 2019Article
- The Changing Age of Individuals Seeking Presymptomatic Genetic Testing for Huntington Disease.Journal of genetic counseling · 2018Article
- Psychiatric Genomics and Public Mental Health in the Young Mind.The American journal of bioethics : AJOB · 2017Article
- An exploration of the experience of Huntington's disease in family dyads: an interpretative phenomenological analysis.Journal of genetic counseling · 2014Article
- Ethics in prion disease.Progress in neurobiology · 2013Article
- Development of the HD-Teen Inventory.Clinical nursing research · 2012Article
- Family carer personal concerns in Huntington disease.Journal of advanced nursing · 2012Article
- Communication of genetic risk information to daughters in families with fragile X syndrome: the parent's perspective.Journal of genetic counseling · 2011Article
- A qualitative study exploring genetic counsellors' experiences of counselling children.European journal of human genetics : EJHG · 2010Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors.
Funding
Abstract
Research on families with Huntington Disease (HD) has primarily focused on adult decision-making surrounding predictive genetic testing and caregiver stress. Little is known about the experiences of teens living in these families. This qualitative study explored the experiences of 32 teens living in families with HD. Six focus groups were conducted across the U.S. and Canada. Data were analyzed using descriptive qualitative analysis. Huntington disease appeared to cast a shadow over the experiences described by teens. Four themes were identified: watching and waiting; alone in the midst of others; family life is kind of hard; and having to be like an adult. These experiences highlight the need for genetic counselors, health care providers, and school personnel to be aware of issues facing teens living in families with HD. Recognizing patterns of teen experiences may help health care providers develop strategies to support coping by teens in HD families.
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What OpenQuestion holds
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.