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

[摘要] ENGLISH ABSTRACT: In a setting where epilepsy support services are available but are inaccessible andwhere the population is of low-socio economic background and where there areexperiences of marginalization and oppression, people with epilepsy and their carersmay have difficulties in accessing appropriate treatment and care. This qualitativestudy provides rich description of perspectives and subjective experiences of adultswho have epilepsy and their carers in an urban Xhosa-speaking Black township inCape Town, South Africa. The study sought to gain an understanding of how adultswho have epilepsy and their carers understand the illness (epilepsy). Its aim was toexplore their perspectives and subjective experiences and the objectives were todescribe and analyse these aspects and to provide information that can be used toguide policy and future research.The study used Kleinman's (1980) Explanatory Model Framework and his theoreticalframework of understanding systems of health care and healing and the Socioecologicaltheory of Bronfenbrenner (1994, 2005) to guide the inquiry process. A totalof sixty one adults who had epilepsy and were on seizure medication and their carerssuch as medical doctors, home-based carers, traditional healers, family members whoincluded wives, partners, siblings and parents and other carers such as friends andneighbours volunteered to take part in the study. Individual in-depth interviews, focusgroup discussions and direct observations of interactions between health careprofessionals and adult patients with epilepsy in a health care setting from which theyreceived their treatment and care were conducted to gain insight into the problem. Thefindings point to differences in the way epilepsy is understood and experienced bypeople living with the illness and their carers from different sectors of health care. Theyshow how lack of appropriate, empathetic, collaborative and integrated care can affectthe health and well-being of adults who have epilepsy and their carers in the setting inwhich the study was conducted. The study concludes by providing a tentativeconceptual model for future research and recommendations for actions that can informand influence local policy and enable adults who have epilepsy and their carers to attain a good quality of life.

[发布机构] Stellenbosch University