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

Joubert, Ninon (2014-12)

Thesis (MSc)--Stellenbosch University, 2014.

Thesis

ENGLISH ABSTRACT: Aim: The aim of this qualitative study was to explore the experiences of individuals with Huntington’s disease (HD) in a South African context. The focus of the current study was not only on the challenges faced by individuals with HD, but also the resources/supports that help them cope with their neurological condition. Method: I conducted twelve semi-structured interviews with the participants and they transcribed verbatim. I then performed a thematic analysis. Results: Using Bronfenbrenner’s Ecological System’s Theory as the theoretical framework, several themes were identified that related to the participants’ experiences of living with HD. Challenges included: triad of symptoms, sleep problems, testing process, relationships, children, it’s a monster, employment, social support, partners and family members with HD, medical aid, life insurance, financial problems, lack of HD facilities, lack of understanding of HD, symptoms watching and the progression of HD. Several supports/resources were also identified and included: knowledge about HD, counselling, medication, coping, employment, social support, testing process, partners and family members with HD, medical aid, life insurance, cure, possible HD facilities, religion, grant and adaptation over time. Conclusion: This was the first study of this kind in a South African context, which set out to explore the experiences of individuals with HD in the Western Cape, South Africa. The findings from this study demonstrate that although these individuals with HD experience several challenges due to their debilitating condition, they also employ several resources to help 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 as a valuable foundation for tailor-made interventions for these unique individuals.

AFRIKAANSE OPSOMMING: Doel: Die doel van hierdie kwalitatiewe studie was om die ervaringe van individue met Huntington se siekte (HS) in 'n Suid-Afrikaanse konteks te verken. Die fokus van die huidige studie het verband gehou nie net met die uitdagings wat deur individue met HS ervaar word, maar ook die hulpbronne / ondersteuning wat hulp verleen met hulle neurologiese toestand om dit te beter te hanteer. Metode: Ek het twaalf semi- gestruktureerde onderhoude met die deelnemers gevoer en woordeliks getranskribeer , waarna tematiese analise uitgevoer is. Resultate: Met behulp van Bronfenbrenner se Ekologiese Sisteem Teorie as die teoretiese raamwerk , is verskeie temas wat verband hou met die deelnemers se ervarings van die lewe met HD geïdentifiseer. Uitdagings sluit in: drietal van die simptome, slaap probleme, toets-proses, verhoudings, kinders, dit is 'n monster, indiensneming, sosiale ondersteuning, metgeselle en familie-lede met HD, mediese fonds , lewensversekering, finansiële probleme, die gebrek aan HD fasiliteite, 'n gebrek aan begrip van HD, dophou van simptome en die vordering van HD. Verskeie ondersteuning / hulpbronne is ook geïdentifiseer en sluit in: kennis oor HD, berading, medisyne, hantering, werk, sosiale ondersteuning, toetsproses, vennote en familie -lede met HD, mediese fonds, lewensversekering, genesing, moontlike HD fasiliteite , godsdiens, staats-toelaag en aanpassing oor tyd. Gevolgtrekking: Dit was die eerste studie van hierdie aard in 'n Suid-Afrikaanse konteks wat die ervarings van individue met HD in die Wes-Kaap , Suid-Afrika uiteensit. Die bevindinge van hierdie studie toon dat, alhoewel hierdie individue met HD verskeie uitdagings as gevolg van hul aftakenlende toestand ondervind, is daar ook 'n paar hulpbronne in plek om hulle met die hantering van hierdie neurologiese toestand te help. Laastens , die bevindinge uit hierdie studie dra by tot die verhoging van bewustheid oor die ervarings van hierdie individue wat met HD lewe en kan as 'n waardevolle fondament vir pasgemaakte intervensies vir hierdie unieke individue dien.

Please refer to this item in SUNScholar by using the following persistent URL: http://hdl.handle.net/10019.1/95976
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