Understanding the Participation in Home, School, and Community Activities Reported by Children with Disabilities and Their Parents: A Pilot Study

Participation has significant impact on children's health and well-being. Knowledge is limited on how children with disabilities perceive their participation and whether their perceptions differ from their parents. This pilot study aimed to explore whether self-reported frequency of participation and prioritized activities differ between children with disabilities and their parents. Thirty children with disabilities eligible for special education in elementary school and their parents were included. Each of them were interviewed with the Chinese version of Picture My Participation (PMP), separately, to identify the child's participation frequency in 21 activities at home, school, and community, desire-to-change activities, and the level of involvement in these activities. The results indicated that children's ratings of participation frequency were significantly lower than parents' ratings in home activities but not in school and community activities, as analyzed by the Wilcoxon Signed Ranked test. Nineteen (63%) child-parent pairs had selected entirely different items as their desire-to-change activities. Children selected the activities that they were somewhat to very involved in; while parents selected the activities they thought their children were less involved in. Our findings suggest that children with disabilities had unique views on life and this should be supported in their health care and individualized education plans.