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

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. 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.

Life ‘on high alert’: how do people with a family history of motor neurone disease make sense of genetic risk? insights from an online forum

“…Online forum data present an alternative to researcher-led methods and retrospective accounts (Coulson et al, 2007), providing a naturalistic account of how people respond to challenges in their lives and navigate complex decisions (Kenen et al, 2007). Due in part to their (perceived) anonymity, online forums may aid the discussion of sensitive subjects (Frank, 2012;Smedley & Coulson, 2019). They may be particularly relevant for people with MND, who may be geographically distant from others with the condition, and who face increasing difficulties with communication and mobility.…”

“…Researchers have explored forum use by people with a range of health conditions. These online spaces have been identified as sites for social support and connectivity, where people can interact with others in a similar situation to themselves, who understand what they are going through (Kingod et al, 2017;Smedley & Coulson, 2019). Forums provide a place where people can find emotional support, share their fears and distress, and find ways to cope (Coulson et al, 2007;Kazmer et al, 2014;Kenen et al, 2007;Radin, 2006).…”

“…Acting as an information repository (Kazmer et al, 2014), the value of forums in providing informational support has also been emphasised (Frank, 2012;Kenen et al, 2007;Novas & Rose, 2000). As pragmatic spaces for seeking help (Hargreaves et al, 2018), forums facilitate the sharing of resources and strategies around a variety of issues (Locock & Brown, 2010;Radin, 2006), including personalised advice and guidance (Hargreaves et al, 2018;Smedley & Coulson, 2019). Crucial here is the sharing of experiential knowledge, through the exchange of rich, embodied and situated accounts grounded in personal experiences (Kingod et al, 2017).…”

“…Research on the use of forums around hereditary conditions has been carried out amongst those affected by Huntington's disease (Coulson et al, 2007;Novas & Rose, 2000;Smedley & Coulson, 2019) and hereditary breast and ovarian cancer (HBOC) (Frank, 2012;Kenen et al, 2007). This literature highlights forums as sites where people constitute themselves, and are constituted by others, as 'at risk'.…”

Genomitieto muistisairauksissa

“…Geenitestiin hakeutuminen tai testin tekemättä jättäminen on yksilölle eettinen dilemma. Tavallisia syitä esimerkiksi Huntingtonin taudin geenitestin tekemiselle ovat paitsi mahdolliseen tautiin liittyvät oireet (Smedley & Coulson 2019) myös tulevaisuudensuunnitelmat, perheen perustamisaikeet sekä tarve tietää (Scuffham ym. 2014).…”