ArticleJournal of community genetics2020
Improving follow up after predictive testing in Huntington's disease: evaluating a genetic counselling narrative group session.
Article in Journal of community genetics, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 papers, 2 of them syntheses that pooled it.
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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.
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Who cites it
16 citing papers in PubMed, 2 syntheses or guidelines pooled it, 23 citations in OpenAlex.
- Current knowledge of Huntington's disease-like 2 genetic testing, clinical presentation, and patient experiences: A systematic review.Journal of Huntington's disease · 2026Pooled it
- Psychological Interventions for People with Huntington's Disease: A Call to Arms.Journal of Huntington's disease · 2020Pooled it
- Psychological interventions for individuals affected by Huntington's disease: effects on depression, anxiety, and emotional well-being.Journal of community genetics · 2026Article
- Family-oriented support in genetic counselling: a scoping review of clinical practice and psychotherapeutic interventions.European journal of human genetics : EJHG · 2026Review
- Narratives before numbers: Reimagining conversations about race, ethnicity, and ancestry information in genetic counseling practice.Journal of genetic counseling · 2025Article
- Counseling supervision for genetic counselors: A proposed outsider witness structure.Journal of genetic counseling · 2025Article
- Maintaining psychological well-being when living at risk of Huntington's disease: An interpretative phenomenological analysis.Journal of genetic counseling · 2025Article
- Narrative therapy and family therapy in genetic counseling: A scoping review.Journal of genetic counseling · 2025Article
- A pilot evaluation of an 8-week mindfulness-based stress reduction program for people with pre-symptomatic Huntington's disease.Journal of community genetics · 2023Article
- Identification of psychoeducation needs and an intervention response for pre-symptomatic Huntington's disease.Journal of community genetics · 2023Article
- 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
- Genetic counseling and diagnostic genetic testing for familial amyotrophic lateral sclerosis and/or frontotemporal dementia: A qualitative study of client experiences.Journal of genetic counseling · 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
- Inhibitory control, working memory and coping with stress: Associations with symptoms of anxiety and depression in adults with Huntington's disease.Neuropsychology · 2022Article
- Role of older generations in the family's adjustment to Huntington disease.Journal of community genetics · 2021Article
- A family systems approach to genetic counseling: Development of narrative interventions.Journal of genetic counseling · 2021Article
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 4 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Recently updated Huntington's disease (HD) predictive testing guidelines emphasise clinicians' responsibility to facilitate emotional support following testing, regardless of the result. Yet models of post-test counselling support are poorly defined. Moreover, it is unclear how these might be best delivered. In this project, a genetic counsellor and clinical psychologist developed standalone group sessions using collective narrative practices for individuals post-predictive testing. Here we present an evaluation of the experiences of one group of six people who have tested mutation positive for HD and remain pre-symptomatic. Two partners also attended the session. Observations, evaluation forms and telephone interviews were used in data collection. Interview data was available from five mutation-positive individuals and one partner. Qualitative data were analysed using a thematic framework approach. Responses were overwhelmingly positive, emphasising the importance of a specifically arranged time and space to share experiences in a structured way. This was typically the first time participants had spoken openly with someone in their situation. Narrative facilitation of discussion encouraged participants to re-discover their strengths and resiliences, with similar experiences being discovered through connections with others. The evaluation was successful in implementing group narrative interventions as part of the predictive test counselling support for Huntington's disease. Participants suggested that the approach could be extended and adopted for other genetic conditions.
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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.