Self-management for people with poorly controlled epilepsy: Participants' views of the UK Self-Management in epILEpsy (SMILE) program

•Epilepsy is a long-term condition requiring individuals to learn to self-manage.•No well-evaluated self-management intervention exists in the United Kingdom.•Participant experience in a new epilepsy self-management program was examined.•Peer support by sharing knowledge and disclosure of experiences was important.•Participants felt more confident to discuss epilepsy with health-care professionals.

BackgroundEpilepsy is a long-term condition that requires self-management, but currently, there is no well-evaluated epilepsy self-education or self-management intervention in the United Kingdom (UK).AimThe aim of this study was to examine the views and experiences of the first participants of the Self-Management in epILEpsy UK (SMILE UK) program to assist the development of a full trial.MethodIn-depth semistructured interviews and group discussions were conducted with 10 people with poorly controlled epilepsy to explore their views and experiences of the self-management program. Interviews were audio-recorded, transcribed, and analyzed thematically.ResultsAll participants viewed the program positively. Three themes emerged: i) peer support was experienced through knowledge sharing, disclosure of experiences, and exchange of contact details; ii) participants felt better equipped to enter discussions with doctors and other health-care professionals about their condition; and iii) participants reported an improvement in their personal life through increased confidence to live with epilepsy and acceptance of their diagnosis.ConclusionA brief group self-management intervention increased knowledge and confidence in managing epilepsy.