Being physically active with epilepsy: Insights from young people and their parents
Ann Mary Wilfred, Cathy Humphreys, Sarah Patterson, Denver M. Y. Brown, Daniela Pohl, Carinna Moyes, Peter Rosenbaum, Gabriel M. Ronen
Abstract
INTRODUCTION: Researchers have called for innovative tailored interventions to address specific challenges to physical activity (PA) engagement for young people with epilepsy (YPE). Working with YPE and their parents, this study aimed to identify barriers and facilitators to adoption and maintenance of PA among YPE prior to and during the COVID-19 pandemic. METHODS: Ten YPE (all female) and their 13 caregivers, and five additional caregivers to males (N = 18; 72% mothers), completed virtual focus group sessions prior to and during the COVID-19 pandemic. Trained Child Life specialists asked questions about barriers and facilitators of PA engagement experienced by YWE, which included a specific focus on the impact of epilepsy. RESULTS: Thematic analysis of the data identified both epilepsy-specific and generic themes that impact PA participation among YPE. These included: (i) epilepsy experience/impact and accommodation; (ii) safety precautions; (iii) concern about seizures; (iv) social connections and acceptance; (v) parent and family support; (vi) intrapersonal self-regulation and motivation; (vii) health benefits; and (viii) key factors in common with all youth. CONCLUSION: This study provides valuable insight into diverse social-ecological health factors that impact PA participation among YPE from two key stakeholder perspectives (YPE and their caregivers). By understanding these lived experiences, providers can better tailor individual support for YPE and their families to foster and maintain a healthy active lifestyle.