To explore barriers and facilitators to uptake of epilepsy surgery among children with drug-resistant epilepsy from U.S. families identifying as Black or Hispanic, as well as ideas for interventions to improve equitable care through qualitative interviews with youth and parents/caregivers. 

U.S. national-level quantitative research has revealed disparities in the uptake of epilepsy surgery among U.S. children with drug-resistant epilepsy, including reduced utilization among children identifying as Black or Hispanic compared with children identifying as White Non-Hispanic. To our knowledge, there are no prior qualitative studies exploring barriers, facilitators, and ideas for interventions to improve surgery uptake specifically among populations experiencing disparities. 

We recruited youth with drug-resistant epilepsy and parents/caregivers from 5 U.S. practices (Pittsburgh, Seattle, Austin, Boston, El Paso) and listservs of the Pediatric Epilepsy Surgery Alliance and Dravet Syndrome Foundation. We performed individual semi-structured interviews, which we audio-recorded and transcribed. Two coders analyzed all transcripts, following which we conducted a thematic analysis.  

We interviewed thirty-seven Black and Hispanic participants. Fifteen had undergone surgery. Barriers to surgery include financial, insurance-related, and logistical challenges, including childcare needs, fear of the unknown, and providers seeming dismissive, biased, or prejudiced (i.e., about race/ethnicity or the child's disability status), or untrustworthy, leading to a lack of confidence and trust in the surgical process. Facilitators included clinicians appearing trustworthy by engaging in thorough and open communication about surgery that appears empathetic, honest, consistent, and involves both parents and children. Ideas for improvement include improved communication and relationship-building practices, detailed education about surgery, and enhanced family and post-operative support to promote comfort and confidence in the surgical process.

Our findings support that improving equitable surgical care for pediatric epilepsy requires trust, education, and collaboration between families and clinicians. Communication, structural support, and increased knowledge ensure families are empowered in decision-making about surgery.