Personalised epilepsy education intervention for adolescents and impact on knowledge acquisition and psychosocial function

Abstract

Aim: Patients frequently have poor knowledge of epilepsy, and this is associated with low self-esteem in adolescence. There is a paucity of data determining whether education alone can improve psychosocial outcome. The study investigated whether an educational intervention in adolescence: 1 Increased understanding of epilepsy syndrome and general epilepsy knowledge. 2 Improved self-esteem, seizure self-efficacy and attitudes towards epilepsy. Methods: In session 1, adolescents were educated about their epilepsy syndrome in a one-on-one session, producing a personalised epilepsy medical record. In session 2, the impact of epilepsy on life-style was discussed. Pre-and post-intervention measures of knowledge, self-esteem, seizure self-efficacy and attitudes towards epilepsy were completed using validated scales. Focus groups explored the intervention's value. Results: Thirty adolescents with epilepsy participated (female: 24, male: 6; median age: 16 years; partial symptomatic epilepsy: 15, generalised idiopathic epilepsy: 15). Self-knowledge of syndrome (P < 0.0001), general knowledge of epilepsy (P < 0.0001), attitudes towards epilepsy (P = 0.008) and seizure self-efficacy (P = 0.049) improved. Focus group data indicated that sessions were enjoyable and valuable, and the medical record was helpful. Conclusions: The intervention significantly improved self-knowledge and general knowledge of epilepsy, attitudes towards epilepsy and seizure self-efficacy. This is the first study to demonstrate a positive impact on psychosocial outcomes following an educational intervention without a psychological component. The model has widespread application.

Individual and family factors associated with self-esteem in young people with epilepsy: A multiple mediation analysis

“…Findings from this study provide empirical evidence for developing psychosocial interventions that aim to support positive self-esteem by reducing stress, negative illness perceptions and enhancing family processes that promote resilience. Such interventions are likely to benefit young people and their families [44,45]. Our findings also highlight that young people who continue to experience seizures might require additional support and help in learning new strategies to deal with their reduced sense of control over their illness and circumstances.…”

Systematic review of epilepsy self‐management interventions integrated with a synthesis of children and young people's views and experiences

“…, Frizzell et al . , Wagner et al . ) were based on a theory that skill‐based intervention would enable children, young people and/or parents to learn how to take control, self‐manage seizures and the consequences of epilepsy.…”

“…Frizzell et al . () showed that delivering personalized educational intervention alone without psychosocial input can improve psychosocial outcomes.…”

Implementing a new adolescent epilepsy service: Improving patient experience and readiness for transition

“…Epilepsy education was delivered by the epilepsy clinical nurse consultant, epilepsy co‐ordinator, neurology fellow and transition staff. Our previously used face‐to‐face education for adolescents with epilepsy was updated to include: current evidence regarding teratogenicity and driving regulations, MH supports and the transition process via our transition service ( Trapeze ). Other topics included: seizures, epilepsy aetiology, investigations, triggers, medications, seizure first aid, living well and staying safe, drugs and alcohol, pregnancy and contraception, learning, employment and discrimination.…”