The experience of individuals with Huntingtons disease in the Western Cape, South Africa

[摘要] ENGLISH ABSTRACT: Aim: The aim of this qualitative study was to explore the experiences of individualswith Huntington's disease (HD) in a South African context. The focus of the current studywas not only on the challenges faced by individuals with HD, but also the resources/supportsthat help them cope with their neurological condition.Method: I conducted twelve semi-structured interviews with the participants and theytranscribed verbatim. I then performed a thematic analysis.Results: Using Bronfenbrenner's Ecological System's Theory as the theoreticalframework, several themes were identified that related to the participants' experiences ofliving with HD. Challenges included: triad of symptoms, sleep problems, testing process,relationships, children, it's a monster, employment, social support, partners and familymembers with HD, medical aid, life insurance, financial problems, lack of HD facilities, lackof understanding of HD, symptoms watching and the progression of HD. Severalsupports/resources were also identified and included: knowledge about HD, counselling,medication, coping, employment, social support, testing process, partners and familymembers with HD, medical aid, life insurance, cure, possible HD facilities, religion, grantand adaptation over time.Conclusion: This was the first study of this kind in a South African context, which setout to explore the experiences of individuals with HD in the Western Cape, South Africa. Thefindings from this study demonstrate that although these individuals with HD experienceseveral challenges due to their debilitating condition, they also employ several resources tohelp them cope with HD. Lastly, the findings that emerged from this study contribute to raising awareness about the experiences of these individuals living with HD and could serveas a valuable foundation for tailor-made interventions for these unique individuals.

[发布机构] Stellenbosch University