Emphasis on Parent Education and Engagement in Research to Increase Physical Activity Engagement for Ambulatory Children and Adolescents with Cerebral Palsy

Abstract

Existing studies of parents with children and adolescents with cerebral palsy, or other brain injuries early in life, focus on parents' perspectives about physical activity (PA) as well as barriers and facilitators that may hinder or support their children's participation. Less is known about parents' potential needs to better understand their children's PA needs, abilities, and potential. This project is part of the Game On Sports Multidimensional Framework that emphasizes parents' active engagement, education, and participation in developing and supporting PA for children and adolescents with CP. We use a community based participatory research design and provide perspectives of parents as research partners, research consultants, and research participants. We provide an example of a parent group (N=16), whose children attended a 5 day (5 hrs/day) Game On Summer Soccer Camp. During camp, we facilitated one session for parents to connect, share their origin stories, and appreciation for what they'd witnessed in their children at camp and outside of camp during the week. We present qualitative data from that group activity and from individual parents' interviews after their children completed the camp. Thematic analysis of the post camp individual interviews reveals that parents highly value: a) personnel responsiveness (i.e. coaches and camp leaders) to campers' abilities (not deficits); b) positive social interactions that PA engagement can provide for their children; c) the opportunity for their children to develop personal interests related to their bodies and self-monitor their goals; and d) the development of social relationship that are beyond the PA events.