ArticleEpilepsy & behavior : E&B2022
A qualitative study of epilepsy self-management barriers and facilitators in Black children and caregivers in Arkansas.
Article in Epilepsy & behavior : E&B, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers, 1 of them a synthesis that pooled it.
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Who cites it
7 citing papers in PubMed, 1 synthesis or guideline pooled it, 13 citations in OpenAlex.
- Barriers and enablers to antiseizure medication adherence in children with epilepsy: a systematic review using the theoretical domains framework (TDF).BMJ paediatrics open · 2026Pooled it
- Psychological Burden Among Family Caregivers of People with Epilepsy in Limpopo and Mpumalanga Provinces, South Africa: A Qualitative Study.Behavioral sciences (Basel, Switzerland) · 2026Article
- Hidden labour of caregiving for persons with epilepsy in Limpopo and Mpumalanga provinces, South Africa: a qualitative study.Frontiers in psychiatry · 2026Article
- Barriers and facilitators of antiseizure medication adherence: a qualitative study among persons with epilepsy in Pakistan.BMC neurology · 2025Article
- Barriers to Medication Adherence in People Living With Epilepsy.Neurology. Clinical practice · 2025Article
- Identifying Facilitators and Barriers to Neonatal Intensive Care Unit Visitation in Mothers of Low Socioeconomic Status: A Qualitative Investigation.Children (Basel, Switzerland) · 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
Corrections and comments
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Authors and funding
5 authors at 4 institutions in 1 country.
Funding
Abstract
objectivesTo identify facilitators and barriers of epilepsy self-management practices among Black children and caregivers.
methodsQualitative semi-structured in-depth interviews were conducted with 11 child-caregiver dyads (11 children with epilepsy and 11 caregivers). A deductive-inductive analysis was undertaken to describe the range of barriers and facilitators significant to participants.
resultsThe barriers and facilitators were classified into 3 management themes: epilepsy-specific knowledge and information, treatment, and lifestyle. Within these themes, several important subthemes were identified. Two subthemes related to knowledge barriers emerged: children and caregivers' limited understanding and retention of complex written and spoken information and variable training and confidence in seizure first-aid. In contrast, facilitators for introducing and encouraging access to epilepsy self-management concepts were participants' eagerness to learn about this topic and a keen interest in using educational materials enriched with visual aids on a phone platform as an adjunct to in-person education. The second theme revealed various practical barriers to optimum treatment adherence, including mistrust of the healthcare system. In comparison, caregivers' collaborative approach and innovative strategies were identified as facilitators for treatment adherence. Finally, the lifestyle management barriers included a lack of defined processes to adopt healthy behaviors and challenges with disclosing epilepsy. Facilitators of this theme were comprised of building a team around the child to foster wellbeing and making healthy habits a fun and joyful experience for children. DISCUSSION: Qualitative evidence in this study highlights caregivers' mistrust in the healthcare system and the lack of community support. Culturally competent interventions may improve access to and quality and utilization of self-management programs in Black children and families while reducing disparities.
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Registered trials
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