“Capability and Capacity Are Two Different Things” : Understanding the Lived Experience of Children With Cerebral Palsy and Their Caregivers on Physical Activity and Exercise

Abstract

Children and adolescents with cerebral palsy (CP) are at increased risk of sedentary behaviour, yet sustained participation in physical activity and exercise remains challenging despite well-established health benefits. This study examined the lived experiences of children and adolescents with CP and their caregivers regarding engagement, perceptions, and evaluation of physical activity and exercise. Thirty dyadic semi-structured interviews were conducted with pediatric patients with CP (n = 30) and caregivers (n = 33), exploring daily physical activity, structured exercise, perceived challenges and preferences, affective responses, and family involvement. Interview transcripts were analyzed using thematic analysis, with brief survey data used to contextualize findings. Five themes emerged: facilitators, barriers, family perspectives, caregiver burden, and patient emotion. Limited resources were frequently identified as barriers to participation, often increasing caregiver burden. Findings highlight the importance of incorporating patient and caregiver perspectives when designing physical activity and exercise opportunities for children and adolescents with CP.