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

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

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. A total of 337 messages wr...

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Veröffentlicht in:Journal of health psychology 2021-03, Vol.26 (4), p.580-594
Hauptverfasser: Smedley, Richard M, Coulson, Neil S
Format: Artikel
Sprache:eng
Schlagworte:
Age of onset
Ambiguity
Genetic testing
Huntingtons disease
Information seeking behavior
Mental disorders
Social support
Symptoms
Uncertainty
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container_title Journal of health psychology
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creator Smedley, Richard M
Coulson, Neil S
description 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. A total of 337 messages written by 58 individuals were analysed using deductive thematic analysis. Discussions examined three themes: deciding to be tested (enquiring about symptoms and starting a new family), preparing for the test (information seeking and attending appointments) and receiving the results (positive and negative results). Forums can reduce the uncertainty of ambiguous symptoms and provide ongoing personalised support before, during and after a genetic test.
doi_str_mv 10.1177/1359105319826340
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source Applied Social Sciences Index & Abstracts (ASSIA); SAGE Complete
subjects Age of onset
Ambiguity
Genetic testing
Huntingtons disease
Information seeking behavior
Mental disorders
Social support
Symptoms
Uncertainty
title Genetic testing for Huntington’s disease: A thematic analysis of online support community messages
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