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

Smedley, Richard M.; Coulson, Neil S.

Authors

Richard M. Smedley



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.

Journal Article Type Article
Publication Date Jan 30, 2019
Journal Journal of Health Psychology
Print ISSN 1359-1053
Electronic ISSN 1461-7277
Publisher SAGE Publications
Peer Reviewed Peer Reviewed
APA6 Citation Smedley, R. M., Smedley, R., & Coulson, N. S. (2019). Genetic testing for Huntington’s disease: A thematic analysis of online support community messages. Journal of Health Psychology, https://doi.org/10.1177/1359105319826340
DOI https://doi.org/10.1177/1359105319826340
Publisher URL https://journals.sagepub.com/doi/abs/10.1177/1359105319826340

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