Experiences and perspectives of peer support among young adults with epilepsy.

Abstract

Young adulthood is a critical developmental period which having epilepsy tends to complicate, suggesting support could be useful. This study aimed to examine the experiences and perspectives of peer support among young adults with epilepsy (YAWE). An online survey was completed by 144 YAWE. Most YAWE reported not having access to peer support but perceived several potential benefits which could support their mental health including mutual understanding, fostering friendships and reducing loneliness, and promoting self-management and coping strategies. Reported barriers to accessing peer support included practical barriers such as travel and time constraints, emotional barriers (e.g., anxiety), and peers not feeling confident or skilled enough to support others. The need for epilepsy peer support groups specifically designed for young adults, university students, and individuals with co-occurring conditions such as autism and attention deficit hyperactivity disorder were also recognised as well as online delivery to address some of the identified barriers. Appropriate training for facilitators and group moderation were noted as important. Overall, these preliminary findings support the acceptability of peer support among YAWE, indicating peer support could be a worthy focus of policy and care pathway development. However, future research is needed to evaluate the effectiveness of peer support for epilepsy populations.