Parents’ Perceptions of the Value of Children’s Participation in Pediatric Rehabilitation Services: A Phenomenographic Study

Abstract

Ensuring that children have opportunities to be involved in decision-making regarding their own care is associated with quality improvement in pediatric rehabilitation. The aim of the study was to explore parents’ perceptions of the value of children’s participation in pediatric rehabilitation services. Semi-structured interviews were conducted with 17 parents of children with disabilities who visited pediatric rehabilitation services. A phenomenographic analysis method was used. Three categories developed from the analysis describing how participation generated value in terms of empowerment, self-awareness, and independence. The outcome space describes a hierarchical relationship between the categories and their influence on each other. Independence achieved through participation was a core aspect and is at the highest level in the hierarchy since it includes and depends on the outcomes from both empowerment and self-awareness. Parents’ perceptions of the value of children’s participation in pediatric rehabilitation services include the possibility for the child to use their entire capacity through values created in terms of empowerment, self-awareness, and independence, in order to live the best life possible. Children with disabilities are diverse as a group, and further research to identify barriers and facilitators of participation is needed to adjust interventions within pediatric rehabilitation services to ensure that children with disabilities can be increasingly empowered, self-aware, and independent.