Self-management education for children with epilepsy and their caregivers. A scoping review

Self-management education programs have been highly successful in preparing people to manage medical conditions with recurring events. A detailed curriculum for epilepsy patients, and their caretakers, is lacking. Here we assess what is available for patients who have disorders with recurring events and offer an approach to developing a potential self-care curriculum for patients with seizures and their caregivers. Among the anticipated components are a baseline efficacy assessment and training tailored to increasing self-efficacy, medication compliance, and stress management. Those at risk of status epilepticus will also need guidance in preparing a personalized seizure action plan and training in how to decide when rescue medication is appropriate and how to administer the therapy. Peers, as well as professionals, could teach and provide support. To our knowledge, no such programs are currently available in English. We encourage their creation, dissemination, and widespread use.