Young people’s experiences of epilepsy: a scoping review of qualitative studies

Research on childhood epilepsy has predominantly used quantitative methodologies to examine the impact of epilepsy on young people and their families. These studies generally give a negative picture of the condition which is at odds with a strengths-based social work perspective and provide little understanding of young people’s experiences of living with epilepsy. A systematic review of qualitative studies that explored young people’s perspectives was conducted. Inclusion criteria included: young people diagnosed with epilepsy, ages 13 to 18 years old; qualitative data collection methods; studies published in English-language peer-reviewed journals and grey literature. Of 501 abstracts identified, 52 full-texts were reviewed with 17 studies being included for final analysis. The emergent themes were: seizures and medications; relationships, issues and concerns involving their families, peers, and schools; young people’s reactions to epilepsy. Issues presented by young people are essential in improving practice and developing services, as it highlight areas for potential social work interventions. In addition, it is essential to adopt a strengths perspective when considering these findings and implications for hospital social work, as young people’s experiences were not always negative.