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.
Highlights
The Convention on the Rights of the Child (UNCRC) [1] is of great significance for a child in a vulnerable situation and need of healthcare [2]
Even though the intentions in the UNCRC have largely been incorporated in legislation and regulations and the importance of patient participation has found general acceptance, challenges remain in translating these ambitions into practice [3,4]
The parents spoke of several ways of understanding the value of children’s participation in pediatric rehabilitation services
Summary
The Convention on the Rights of the Child (UNCRC) [1] is of great significance for a child in a vulnerable situation and need of healthcare [2]. Participation within healthcare includes planning for specific activities, training, or treatment [5], as well as the involvement of children in decisions regarding their care [3,4]. For children with disabilities, whose care is characterized by frequent meetings with rehabilitation services, the enabling of their participation by healthcare professionals becomes even more important in terms of safety, care outcomes, and perceived quality. Children who are involved in decision-making feel more prepared and less anxious [6,7], whereas those who are not included in decisions about their care have poorer compliance with treatment recommendations and care plans [4,8]. Ensuring that children have the possibility of being involved in consultations and decision-making regarding their care [4] is highly associated with quality improvement in pediatric rehabilitation
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