Year: 2014
Type: dissertation
Abstract: ENGLISH ABSTRACT: Aim: The aim of this qualitative study was to explore the experiences of individuals \nwith Huntington’s disease (HD) in a South African context. The focus of the current study \nwas not only on the challenges faced by individuals with HD, but also the resources/supports \nthat help them cope with their neurological condition. \nMethod: I conducted twelve semi-structured interviews with the participants and they \ntranscribed verbatim. I then performed a thematic analysis. \nResults: Using Bronfenbrenner’s Ecological System’s Theory as the theoretical \nframework, several themes were identified that related to the participants’ experiences of \nliving with HD. Challenges included: triad of symptoms, sleep problems, testing process, \nrelationships, children, it’s a monster, employment, social support, partners and family \nmembers with HD, medical aid, life insurance, financial problems, lack of HD facilities, lack \nof understanding of HD, symptoms watching and the progression of HD. Several \nsupports/resources were also identified and included: knowledge about HD, counselling, \nmedication, coping, employment, social support, testing process, partners and family \nmembers with HD, medical aid, life insurance, cure, possible HD facilities, religion, grant \nand adaptation over time. Conclusion: This was the first study of this kind in a South African context, which set \nout to explore the experiences of individuals with HD in the Western Cape, South Africa. The \nfindings from this study demonstrate that although these individuals with HD experience \nseveral challenges due to their debilitating condition, they also employ several resources to \nhelp 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 serve \nas a valuable foundation for tailor-made interventions for these unique individuals.
Author: Ninon Joubert
Language: English
Subfield: Cellular and Molecular Neuroscience
Field: Neuroscience
Domain: Life Sciences
Open Access status: green
OpenAlex ID: W2162997625