A qualitative study of epilepsy self-management barriers and facilitators in Black children and caregivers in Arkansas.

OBJECTIVES: To identify facilitators and barriers of epilepsy self-management practices among Black children and caregivers. METHODS: Qualitative 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. RESULTS: The 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.

Healthcare professionals' knowledge, attitude, and perception of epilepsy surgery: A systematic review.

OBJECTIVE: The epilepsy surgery treatment gap is well defined and secondary to a broad range of issues, including healthcare professionals' (HCPs') knowledge, attitude, and perception (KAP) toward epilepsy surgery. However, no previous systematic reviews investigated this important topic. METHODS: The systematic review was conducted according to Preferred Reporting Items for the Systematic Reviews and Meta-Analyses (PRISMA) guidelines. We identified a total of 652 articles from multiple databases using database-specific queries and included 65 articles for full-text review after screening the titles and abstracts of the articles. Finally, we selected 11 papers for qualitative analysis. We critically appraised the quality of the studies using the Joanna Briggs critical appraisal tool. RESULTS: The qualitative analysis of the content identified several key reasons causing healthcare professional-related barriers to epilepsy surgery: inadequate knowledge and awareness about the role of epilepsy surgery in drug-resistant epilepsy (DRE), poor identification and referral of patients with DRE, insufficient selection of candidates for presurgical workup, negative or ambivalent attitudes and perceptions regarding epilepsy surgery, deficient communication practices with patients regarding risk-benefit analysis of epilepsy surgery, and challenging coordination issues with the surgical referral. Neurologists with formal instruction in epilepsy, surgical exposure during training, participation in high volume epilepsy practice, or prior experience in surgical referral may refer more patients for surgical evaluation. CONCLUSIONS: While significant work has been conducted in a limited number of studies to explore HCPs' knowledge gap and educational need regarding epilepsy surgery, further research is needed in defining the learning goals, assessing and validating specific learning gaps among providers, defining the learning outcomes, optimizing the educational format, content, and outcome measures, and appraising the achieved results following the educational intervention.