Thesis (MSc)--Stellenbosch University, 2014. / 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.
| Identifer | oai:union.ndltd.org:netd.ac.za/oai:union.ndltd.org:sun/oai:scholar.sun.ac.za:10019.1/95976 |
| Date | 12 1900 |
| Creators | Joubert, Ninon |
| Contributors | Pretorius, Chrisma, Stellenbosch University. Faculty of Arts and Social Sciences. Department of Psychology. |
| Publisher | Stellenbosch : Stellenbosch University |
| Source Sets | South African National ETD Portal |
| Language | en_ZA |
| Detected Language | Unknown |
| Type | Thesis |
| Format | xiii, 193 p. |
| Rights | Stellenbosch University |
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