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Development of a Digital Decision Support Tool to Aid Participation of Children With Disabilities in Pediatric
Elin Vinblad1, Ingrid Larsson2, Maria Lönn3
1Child and Youth Rehabilitation Services, Region Skåne, Kristianstad, Sweden.
Insights
Children with disabilities want to feel involved, independent, and partnered with healthcare professionals to achieve true participation in pediatric rehabilitation. This understanding is key for developing effective digital support tools.
Area of Science:
- Pediatric Rehabilitation
- Healthcare Accessibility
- Child Psychology
Background:
- Child-centered care and patient participation are crucial in healthcare systems.
- Developing digital tools to enhance participation for children with disabilities in rehabilitation is an ongoing project.
- This study investigates the perspectives of children with disabilities on their participation in pediatric rehabilitation.
Purpose of the Study:
- To explore the experiences of children and young people with disabilities regarding their participation in pediatric rehabilitation services.
- To gather insights for improving pediatric rehabilitation services through a child-centered approach.
- To inform the development of digital decision support tools tailored to the needs of children with disabilities.
Main Methods:
- Explorative qualitative study utilizing latent content analysis with an inductive approach.
- Interviews conducted with 20 children (aged 6-17) and 8 young people (aged 19-30) with disabilities.
- Focus on participants' lived experiences within pediatric rehabilitation services.
Main Results:
- Three core categories of participation emerged: feeling involved, feeling independent, and working in partnership.
- Feeling involved encompasses being listened to and connected; feeling independent involves being admitted and enabled.
- Working in partnership means receiving support and trusting decision-making processes, leading to empowerment.
Conclusions:
- Children and young people with disabilities desire empowerment through involvement, independence, and partnership in rehabilitation.
- These findings are vital for designing digital decision support tools that align with children's needs and perspectives.
- Empowering children in pediatric rehabilitation fosters a genuine sense of participation.
Background:
Building 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.
Objective:
The 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.
Methods:
The 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.
Results:
A 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.
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.
