ABSTRACT
The effects of epilepsy on children and their families, factors influencing the treatment and education gap and socio-cultural beliefs about epilepsy in children in rural sub-Saharan Africa are not clearly defined. We conducted a qualitative study, with 38 in-depth interviews and 2 focus group discussions with carers of children with epilepsy (CWE) in Tanzania. Discrimination, isolation and lack of hope were identified as major issues. Poor school attendance was attributed to learning difficulties, behavior problems, ongoing seizures and restricted school access. The treatment gap was related to misdiagnosis, preferential use of traditional treatment and cost of biomedical treatment. The hopes expressed for the future centered on access to treatment and education. Improved access to diagnosis, cost-effective treatment, sensitization of the community on epilepsy, collaborative care provision with traditional and faith healers and improved access to specialist schooling could improve the quality of life and future of CWE in this region.
Subject(s)
Educational Status , Epilepsy , Health Knowledge, Attitudes, Practice , Patient Acceptance of Health Care , Perception , Social Behavior , Adolescent , Age Factors , Child , Epilepsy/epidemiology , Epilepsy/psychology , Epilepsy/therapy , Family Health , Female , Focus Groups , Humans , Male , Quality of Life , Residence Characteristics , Sex Factors , Surveys and Questionnaires , Tanzania/epidemiologyABSTRACT
OBJECTIVE: Understanding the social-cultural aspects of epilepsy in sub-Saharan Africa will help to improve the situation of people with epilepsy (PWE) in this region. METHODS: This qualitative study comprised interviews with 41 PWE and their carers. Participants were identified from a large community-based epidemiological study of epilepsy conducted in 2009. RESULTS: Epilepsy was commonly ascribed to witchcraft and curses. Nearly all PWE demonstrated pluralistic care-seeking behavior, including the use of prayers and traditional healers alongside modern care. PWE reported discrimination as a result of their condition. The majority of PWE had suffered burns during seizures. CONCLUSIONS: Poor knowledge and strong cultural and religious beliefs characterize the experience of PWE in this population. Epilepsy-related stigma contributes to overall disease burden, and PWE face exclusion across major life domains. There is a need to educate communities and inculcate perceptions and attitudes that promote early detection of epilepsy and early care-seeking behavior.
