Accepted for/Published in: JMIR Formative Research
Date Submitted: Apr 25, 2019
Open Peer Review Period: Apr 30, 2019 - May 29, 2019
Date Accepted: Jul 28, 2019
(closed for review but you can still tweet)
Children and young people’s experiences of how to achieve participation within pediatric rehabilitation services: A formative qualitative study for the development of a digital decision support tool for children with disabilities
ABSTRACT
Background:
Building a health-care system of justice requires a child-centered care where children and young people, regardless of ability, are allowed to participate in their contact with their healthcare professionals. Implementation of interventions that support children’s participation in healthcare is still rare, and especially so when it comes to children with disabilities. Yet the consequences of insufficient participation are particularly severe for children with disabilities, as their needs for extensive care place greater demands on efficient interaction with professionals.
Objective:
As part of an overall project focusing on developing and implementing a digital decision support tool to increase participation within pediatric rehabilitation, the aim of this formative study was to explore the experiences of children and young people with disabilities regarding how to achieve participation within the pediatric rehabilitation services.
Methods:
The formative study has an explorative design, based on a latent qualitative content analysis with an inductive approach. Interviews were conducted with 20 children (6-17 years) and eight young people (19-30 years) with disabilities about their experiences of participation within pediatric rehabilitation services.
Results:
Three categories emerged reflecting the participants’ possibilities of participation within the pediatric rehabilitation services: to feel involved; to feel independent, and to feel partnership. To feel involved meant being listened to and to being connected; to feel independent meant being admitted and being enabled, and to feel partnership meant being supported and being able to entrust others with the decision-making. Through the overall theme “moving toward empowerment for children in pediatric rehabilitation”, a true feeling of participation can be experienced.
Conclusions:
The views of children and young people with disabilities are that children within the pediatric rehabilitation services must be given prerequisites for empowerment through being allowed to feel involved, independent, and in partnership, in order to experience true participation within their pediatric rehabilitation services. This finding will become imperative when designing a forthcoming digital decision support tool based on the children’s needs and perspectives.
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Copyright
© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.