Genetic testing for Huntington’s disease: A thematic analysis of online support community messages

Smedley, Richard M.; Coulson, Neil S.

Abstract

Huntington’s disease is a fatal late-onset genetic illness that causes motor, cognitive and psychiatric disorders. Individuals considering genetic testing may benefit from online social support. This study investigates how genetic testing is discussed within health forums. 337 messages written by 58 individuals were analysed using deductive thematic analysis. Discussions examined three themes: deciding to be tested (enquiring about symptoms, starting a new family), preparing for the test (information seeking, attending appointments), and receiving the results (positive results, negative results). Forums can reduce the uncertainty of ambiguous symptoms, and provide ongoing personalized support before, during and after a genetic test.

Citation

Smedley, R. M., & Coulson, N. S. (2021). Genetic testing for Huntington’s disease: A thematic analysis of online support community messages. Journal of Health Psychology, 26(4), 580-594. https://doi.org/10.1177/1359105319826340

• Journal Article Type: Article
• Acceptance Date: Dec 27, 2018
• Online Publication Date: Jan 30, 2019
• Publication Date: 2021
• Deposit Date: Jan 3, 2019
• Publicly Available Date: Jan 4, 2019
• Journal: Journal of Health Psychology
• Print ISSN: 1359-1053
• Electronic ISSN: 1461-7277
• Publisher: SAGE Publications
• Peer Reviewed: Peer Reviewed
• Volume: 26
• Issue: 4
• Pages: 580-594
• DOI: https://doi.org/10.1177/1359105319826340
• Public URL: https://nottingham-repository.worktribe.com/output/1440726
• Publisher URL: https://journals.sagepub.com/doi/abs/10.1177/1359105319826340
• Contract Date: Jan 3, 2019