ArticleBMC neurology2019
Barriers to epilepsy care in Central Uganda, a qualitative interview and focus group study involving PLWE and their caregivers.
Article in BMC neurology, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 20 papers, 1 of them a synthesis that pooled it.
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Who cites it
20 citing papers in PubMed, 1 synthesis or guideline pooled it, 37 citations in OpenAlex.
- Parents care needs with epileptic children: a hybrid model concept analysis.BMC pediatrics · 2025Pooled it
- Perceptions and experiences of caretakers of children with neurologic deficits after severe malaria in Uganda.International journal of qualitative studies on health and well-being · 2026Article
- Caregiver burden and associated factors among primary caregivers of children with epilepsy in southwestern Uganda.Epilepsy & behavior reports · 2026Article
- Factors Associated with Poor Health-Related Quality of Life Among Patients with Epilepsy at Mulago National Referral Hospital.Neuropsychiatric disease and treatment · 2026Article
- Hidden labour of caregiving for persons with epilepsy in Limpopo and Mpumalanga provinces, South Africa: a qualitative study.Frontiers in psychiatry · 2026Article
- Lived experiences and acceptability challenges among caregivers of people with epilepsy in Limpopo and Mpumalanga, South Africa.Frontiers in psychology · 2026Article
- Epilepsy in low- to middle-income countries.Current opinion in neurology · 2025Review
- Article
- Attitudes and perceptions towards epilepsy in an onchocerciasis-endemic region of Tanzania: a mixed approach to determine the magnitude and driving factors.BMC public health · 2024Article
- Stigma perception and health fatalism in parents of children with epilepsy: A cross-sectional study.Heliyon · 2024Article
- Role and knowledge of nurses in the management of non-communicable diseases in Africa: A scoping review.PloS one · 2024Article
- Epilepsy in Africa: a multifaceted perspective on diagnosis, treatment, and community support.Annals of medicine and surgery (2012) · 2024Article
- Caregivers' and Family Members' Knowledge Attitudes and Practices (KAP) towards Epilepsy in Rural Limpopo and Mpumalanga, South Africa.International journal of environmental research and public health · 2023Article
- Article
- Diagnosis of Epilepsy by Traditional Healers and Its Implications on Management in the Selected Rural Communities of Limpopo and Mpumalanga Provinces: A Qualitative Study.Neuropsychiatric disease and treatment · 2023Article
- Racial Disparities in Medication Adherence Barriers: Pediatric Epilepsy as an Exemplar.Journal of pediatric psychology · 2022Observational
- Article
- Article
- Feasibility, acceptability, and efficacy of an adopted novel self-management intervention among people with epilepsy in Uganda.Epilepsy & behavior : E&B · 2021Article
- Household poverty, schooling, stigma and quality of life in adolescents with epilepsy in rural Uganda.Epilepsy & behavior : E&B · 2021Article
Corrections and comments
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Authors and funding
8 authors at 3 institutions in 2 countries.
Funding
Abstract
backgroundEpilepsy is a common neurological disease with substantial impact on the subject and their caretakers. This exploratory study identified barriers to care for persons living with epilepsy (PLWE) to develop a culturally acceptable nurse led self-management intervention for PLWE previously developed in the United States.
methodsThe study involving 48 participants (31 PLWE and 17 caregivers) with in depth interviews and focus groups was conducted. We obtained insights into barriers to care in PLWE and their caregivers. Using a thematic analytic procedure emphasizing the dominant themes the qualitative responses were analyzed. Median age of PLWE was 24 years (IQR 19-30), and10 (52.6%) were male. The median age of epilepsy onset was 12 years (IQR 6-18), range of 1-37 years. The median age of caregivers was 50 years (IQR 45-50.5), with a range of 18-78 years. Seventy five percent of caregivers (6/8) were females.
resultsThree major areas of perceived barriers involving individual, family or community and provider and healthcare system barriers to epilepsy care emerged. Individual factors like limited epilepsy knowledge and medication non-adherence were reported to be key barriers to epilepsy care. Caregiver burden and lack of family support as well as poor health care access were identified from the family and health care systems.
conclusionsThe main barrier to epilepsy care is limited epilepsy knowledge in PLWE and their caregivers. Improving epilepsy care awareness and knowledge within communities and appropriate health care provider service for epilepsy would help reduce epilepsy barriers and improve care.
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