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

Abstract

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.

Exploring Barriers to Participation in Pediatric Rehabilitation: Voices of Children and Young People with Disabilities, Parents, and Professionals

“…At the same time, they conclude that some medical issues need to be discussed among adults in an efficient manner, indicating that child participation is not valid for all topics. Discussions about what participation in pediatric rehabilitation should contain is clearly needed [ 5 ]. The findings also highlight a need for discussions about social versus medical models [ 22 ] and indicates that a social model might be favorable when addressing barriers related to norms within the practice and prerequisites for child participation [ 5 ].…”

“…Discussions about what participation in pediatric rehabilitation should contain is clearly needed [ 5 ]. The findings also highlight a need for discussions about social versus medical models [ 22 ] and indicates that a social model might be favorable when addressing barriers related to norms within the practice and prerequisites for child participation [ 5 ]. Future research may thus benefit from using this perspective.…”

“…Aligned with principals in shared decision-making (SDM) tools [ 39 ], we suggest that support for participation should go beyond alternative and augmentative communication (AAC) and also facilitate a higher level of participation—in helping identifying goals, making choices, shaping opinions and setting agendas. Digital tools can bridge interaction barriers for people with disabilities [ 40 , 41 ] and might be superior to face-to-face interaction for children in healthcare contexts [ 5 , 16 ]. We thus suggest the development of digital support tools to address some of the barriers described in this paper, such as parents’ difficulties to share control, something which was expressed by all participant groups, indicating a need for new participatory formats.…”

“…Legislation and conventions focus on the individual patient’s right to take part in decision-making regarding their treatment [ 2 , 3 ], while social models hold a broader view, including the individual’s whole life situation [ 4 ]. The focus of research on participation for people with disabilities has shifted; while early research focused on physical access, recent studies emphasize the patients’ experience of involvement both in their care [ 5 , 6 , 7 ] and in daily life [ 8 , 9 , 10 ]. Most research on participation for this target group has, however, focused on home, school, and community contexts [ 9 , 11 , 12 ].…”

“…Although the widely recognized UN Convention on the Rights of the Child (UNCRC) states that all children have the right to express their opinions in matters that affect them [ 3 ], it remains unclear what the term ‘participation’ in pediatric rehabilitation services means and how it should be translated into practice. The concept of child participation has proven problematic for professionals in pediatric rehabilitation services to grasp, both in terms of what characterizes participation for children with disabilities, and what could be considered to be a suitable level of participation for an individual child with her/his unique disability and context [ 5 , 10 , 20 ]. Professionals and parents tend to identify children’s severe physical limitations, lack of energy, and low motivation as contributing factors when asked to explain what hinders participation for a child with a given disability [ 21 ].…”