Development of a Digital Decision Support Tool to Aid Participation of Children With Disabilities in Pediatric Rehabilitation Services: Explorative Qualitative Study.

Jens M Nygren,Emma Olsson,Elin Vinblad,Ingrid Larsson,Maria Lönn,Petra Svedberg

doi:10.2196/14493

Abstract

BackgroundBuilding a health care system in accordance with the rule of law requires child-centered care, where children and young people, regardless of ability, are allowed to participate in visits with their health care professionals. As part of an overall project focusing on developing and implementing a digital decision support tool to increase the participation of children with disabilities in pediatric rehabilitation, this study brings new knowledge as to how this specific patient group views participation.ObjectiveThe aim of this formative study was to explore the experiences of children and young people with disabilities concerning increasing their participation in the pediatric rehabilitation services.MethodsThe formative study had an explorative design, based on a latent qualitative content analysis with an inductive approach. Interviews were conducted with 20 children (6-17 years) and 8 young people (19-30 years) with disabilities about their experiences of participation in pediatric rehabilitation services.ResultsA total of 3 categories emerged reflecting the participants’ possibilities of participation in the pediatric rehabilitation services: to feel involved, to feel independent, and to work in partnership. To feel involved meant being listened to and being connected, to feel independent meant being admitted and being enabled, and to work in partnership meant being supported and being able to entrust others with the decision making. With the overall theme moving toward empowerment of children in pediatric rehabilitation, a true feeling of participation can be experienced.ConclusionsThe views of children and young people with disabilities are that children should be given the prerequisites for empowerment by being allowed to feel involved and independent as well as to work in partnership to experience true participation in the pediatric rehabilitation services. This finding is essential in the design of a digital decision support tool based on the children’s needs and perspectives.

Highlights

BackgroundThe Patient Act in Sweden [1] aims to protect the right of an individual to participate in health care decisions
The incorporation of the UNCRC into Swedish law, together with the Patient Act, further increases the pressure on pediatric rehabilitation services to involve the children in their care, as child participation becomes both a prerequisite for quality health care as well as an obligation by law
The children’s possibilities for moving toward empowerment in pediatric rehabilitation incorporated their experiences of participation in each of the categories

Summary

Introduction

BackgroundThe Patient Act in Sweden [1] aims to protect the right of an individual to participate in health care decisions. Conclusions: The views of children and young people with disabilities are that children should be given the prerequisites for empowerment by being allowed to feel involved and independent as well as to work in partnership to experience true participation in the pediatric rehabilitation services. This finding is essential in the design of a digital decision support tool based on the children’s needs and perspectives

Objectives

Methods

Results

Discussion

Conclusion