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

Abstract

In order to develop suitable support for participation in pediatric rehabilitation, it is important to understand what barriers need to be bridged from the perspectives of both children and adults. The aim of this study was to explore barriers to participation in pediatric rehabilitation services, according to children and young people with disabilities, parents to children with disabilities, and professionals. Data was collected in individual interviews (n = 48) and focus groups (n = 8), which were analyzed with qualitative content analysis to extract barriers to participation. Identified barriers include three categories: (1) insufficient access (controlling adults, adult-centered healthcare); (2) insufficient trust (low level of trust in adults, low level of trust in children, low self-confidence in children); and (3) insufficient involvement (norms of non-participation, low level of commitment in children). The participant groups had divergent conceptions of where and how barriers originate, and for what situations child participation is appropriate. Adult-centered healthcare and parental presence were described as barriers by all participant groups. Understanding differences in the perceptions of barriers and their origins is crucial when striving to change norms of non-participation. The findings can inform the development of new support tools and participatory formats in pediatric rehabilitation.

Parents’ Perceptions of the Value of Children’s Participation in Pediatric Rehabilitation Services: A Phenomenographic Study

“…This supports the idea that children who are not included in decisions about their care may be less willing to follow treatment recommendations and care plans [4,8]. Thus, from a child perspective, meetings with healthcare professionals need to be adapted to them and include alternative and augmentative communication tools in order to be engaging and motivating [27]. When a person's motivation is autonomous, they experience better behavioral outcomes as well as improved wellbeing and mental health [30].…”

“…Although parents can provide support in detecting barriers for the children's participation by being present at rehabilitation meetings, some parents expressed the importance of not stepping in and allowing the children to practice how to be more independent and develop their capacity to take more responsibility for their rehabilitation. This relates to other research describing how parents both serve as facilitators and barriers for their child's possibility to participate [8,27,33]. It also relates to the importance of the settings and the healthcare professionals' approaches towards the child's participation and independence from their parent, for the children's participation to take place [8,33].…”

“…Previous research has concluded that healthcare professionals often fail to provide opportunities for children to understand their conditions, share their views, and participate in decisions regarding their care [3,4]. A newly published study [27] reveals that the significant obstacles for child participation are that the rehabilitation services are adult-centered and inflexible with norms of non-participation. A conclusion from this study, based on the perspectives of children and young people, is that there is a risk that norms are being reinforced unless children are allowed and educated to participate from an early age [27].…”

“…A newly published study [27] reveals that the significant obstacles for child participation are that the rehabilitation services are adult-centered and inflexible with norms of non-participation. A conclusion from this study, based on the perspectives of children and young people, is that there is a risk that norms are being reinforced unless children are allowed and educated to participate from an early age [27]. Young people have described services to be helpful when they are individualized and flexible in the amount and type of support according to current needs [28].…”

A Norm-Creative Method for Co-constructing Personas With Children With Disabilities: Multiphase Design Study

“…Recent research has shown that while participation is on the agenda of health care professionals, practical guidelines and tools for child participation are lacking [ 1 - 5 ]. This affects children whose lifestyles involve a close relationship with health care services.…”