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

Aim. To determine the effectiveness of epilepsy self-management interventions and explore the views and experiences of medication and seizures by children and young people. Background. Experiencing seizures and side-effects from anti-epileptic medicines have negative impacts on children and young people managing their epilepsy. Children commonly experiment with not taking epilepsy medication as prescribed and engage in unhealthy lifestyles. Design/Review Methods. Mixed-method systematic review with theory development. Cochrane quantitative methods and thematic synthesis of qualitative and survey evidence. Data Sources. Eight databases were searched from earliest dates to July 2013. Results. Nineteen studies were included. Meta-analysis was not possible. Zero of nine intervention studies showed improvement in anti-epilepsy medication adherence. Skill-based behavioural techniques with activities such as role play and goal setting with young people increased epilepsy knowledge and seizure self-management (small effects). Intervention studies were methodologically weak and no studies reported if improvement in self-management was sustained over time. Synthesis of nine qualitative and one mixed-method studies generated six themes encapsulating anti-epilepsy medication and epilepsy effects. There was a lack of fidelity between intervention programme theories and what children and young people found difficult with medication self-management and managing the effects of epilepsy. Conclusion. Children and young people knowingly and/or unknowingly take risks with their epilepsy and give reasoned explanations for doing so. There are no effective interventions to change epilepsy medication adherence behaviours. There is an urgent need for more innovative and individually tailored interventions to address specific challenges to epilepsy self-management as identified by children and young people themselves.