Perspectives on epilepsy on the part of patients and carers in a South African urban township

Date
2016-12
Journal Title
Journal ISSN
Volume Title
Publisher
Stellenbosch : Stellenbosch University
Abstract
ENGLISH ABSTRACT: In a setting where epilepsy support services are available but are inaccessible and where the population is of low-socio economic background and where there are experiences of marginalization and oppression, people with epilepsy and their carers may have difficulties in accessing appropriate treatment and care. This qualitative study provides rich description of perspectives and subjective experiences of adults who have epilepsy and their carers in an urban Xhosa-speaking Black township in Cape Town, South Africa. The study sought to gain an understanding of how adults who have epilepsy and their carers understand the illness (epilepsy). Its aim was to explore their perspectives and subjective experiences and the objectives were to describe and analyse these aspects and to provide information that can be used to guide policy and future research. The study used Kleinman’s (1980) Explanatory Model Framework and his theoretical framework of understanding systems of health care and healing and the Socioecological theory of Bronfenbrenner (1994, 2005) to guide the inquiry process. A total of sixty one adults who had epilepsy and were on seizure medication and their carers such as medical doctors, home-based carers, traditional healers, family members who included wives, partners, siblings and parents and other carers such as friends and neighbours volunteered to take part in the study. Individual in-depth interviews, focus group discussions and direct observations of interactions between health care professionals and adult patients with epilepsy in a health care setting from which they received their treatment and care were conducted to gain insight into the problem. The findings point to differences in the way epilepsy is understood and experienced by people living with the illness and their carers from different sectors of health care. They show how lack of appropriate, empathetic, collaborative and integrated care can affect the health and well-being of adults who have epilepsy and their carers in the setting in which the study was conducted. The study concludes by providing a tentative conceptual model for future research and recommendations for actions that can inform and influence local policy and enable adults who have epilepsy and their carers to attain a good quality of life.
AFRIKAANSE OPSOMMING: In 'n omgewing waar epilepsie ondersteuningsdienste beskikbaar, maar nogtans ontoeganklik is, en waar die bevolking van ’n lae sosio-ekonomiese agtergrond met ervarings van marginalisering en onderdrukking bestaan, kan mense met epilepsie en hul versorgers probleme met toegang tot behoorlike behandeling en sorg ervaar. Hierdie kwalitatiewe studie bied 'n ryk beskrywing van die perspektiewe asook die subjektiewe ervarings van volwassenes met epilepsie en hul versorgers in 'n stedelike Xhosa-sprekende swart woonbuurt in Kaapstad, Suid-Afrika. Die studie het gesoek om 'n begrip van hoe volwassenes wat met epilepsie lewe en hul versorgers die siekte (epilepsie) verstaan. Die hoofdoel was om hulle perspektiewe en subjektiewe ervarings te verken, terwyl die hoof doelwitte die beskrywing en ontleding van sodanige aspekte om inligting wat gebruik kan word om die gids beleid en toekomstige navorsingsondernemings te voorsien. Hierdie studie gebruik Kleinman (1980) se verduidelikende model met sy teoretiese raamwerk oor die begrip van gesondheidsorg en genesings stelsels asook Bronfenbrenner (1994, 2005) se sosiologiese teorie om die ondersoek uitevoer. ‘n Totaal van een en sestig volwassenes met epilepsie wat medikasie ontvang en hul versorgers soos mediese dokters, tuisversorges, tradisionele genesers, familielede soos vrouens, broers, susters, eggenote, maats en ouers tot vriende en bure het aangebied om in hierdie studie deel te neem. Individu in-diepte onderhoude, fokusgroepbesprekings en direkte waarnemings van interaksies tussen wesopgeliede gesondheidswerkers en volwassenes pasiënte met epilepsie in die gesondheidsorg instelling waar hulle hul behandeling en versorging ontvang, is gedoen om insig in die probleem te kry. Die bevindings dui op die verskillende maniere hoe epilepsie verstaan en ervaar word deur volwassenes wat met epilepsie lewe en hul versorgers in die verskillende sektore van gesondheid. Dit wys hoe ‘n gebrek aan geskikte, empatiese, saamwerkende en geïntegreerde sorg die gesondheid en welstand van volwassenes met epilespsie en hul versorges in die omgewing waar die studie uitgevoer is kan bewerkstillig. Die studie sluit deur om ‘n voorlopige konseptuele model vir toekomstige navorsing, aanbevelings vir optredes wat kan inlig en plaaslike beleid kan beinvloed om vir volwassenes met epilepsie en hul versorgers te verskaf en in sodoene in staat stel om ‘n goeie lewensgehalte vir hulle te behaal.
Description
Thesis (PhD)--Stellenbosch University, 2016.
Keywords
Epilepsy -- Patients, Epilepsy -- Patients -- Socio-economics condition, Epileptics -- Care, Epileptic children -- Care, UCTD
Citation