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Exploring Barriers to Participation in Pediatric Rehabilitation: Voices of Children and Young People with Disabilities, Parents, and Professionals
Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).ORCID iD: 0000-0002-3064-0442
Child and Young Rehabilitation Services Kristianstad, Region Skåne, Kristianstad, Sweden.ORCID iD: 0000-0003-2466-9107
Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).ORCID iD: 0000-0003-4438-6673
Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).ORCID iD: 0000-0002-3576-2393
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2021 (English)In: International Journal of Environmental Research and Public Health, ISSN 1661-7827, E-ISSN 1660-4601, Vol. 18, no 19, article id 10119Article in journal (Refereed) Published
Abstract [en]

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. © 2021 by the authors. Licensee MDPI, Basel, Switzerland.

Place, publisher, year, edition, pages
Basel: MDPI, 2021. Vol. 18, no 19, article id 10119
Keywords [en]
children, disabilities, barriers, participation, pediatric rehabilitation
National Category
Health Sciences
Identifiers
URN: urn:nbn:se:hh:diva-45722DOI: 10.3390/ijerph181910119ISI: 000717230400001PubMedID: 34639419Scopus ID: 2-s2.0-85115720467OAI: oai:DiVA.org:hh-45722DiVA, id: diva2:1602369
Available from: 2021-10-12 Created: 2021-10-12 Last updated: 2025-10-08Bibliographically approved
In thesis
1. Facilitating Child Participation in Care Contexts – A Norm Critical Design Approach
Open this publication in new window or tab >>Facilitating Child Participation in Care Contexts – A Norm Critical Design Approach
2025 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

This thesis explores how a norm-critical design approach can support the transformation of norms surrounding child participation in care contexts, with a focus on paediatric and social care. It illustrates how such an approach can generate impact in care contexts if applied in related research and tool development. Since a persistent gap remains between the ambition of increased child participation and its realisation in practice, it poses the questions: How can barriers to child participation in care be understood based on the perspectives of key actors? and How can a norm-critical design approach facilitate a shift in norms related to child participation in care, design, and research contexts? Rooted at the intersection of design, critical theory, and health science, the thesis applies a sociotechnical perspective on participation. It compiles five qualitative studies involving children and young adults, parents, care professionals, nursing students, and nursing teachers. Together, the studies provide practical insights into how design can counteract exclusionary norms and structures in care, design, and research contexts—contexts that are still largely defined by adult-centric and biomedical paradigms. The results underscore the importance of enabling children's voices when shaping the systems meant to support them, and putting the spotlight on norms, situated perspectives, and power positions when designing for participation. The comprehensive understanding includes a theoretical model visualising the role of norm-critical approaches in norm change and suggests four ways for design to facilitate norm transformation. While norm-critical design approaches have previously not been used to address the issue of child participation in care, this thesis shows great potential for such approaches to generate impact in care contexts if applied in related research and tool development. 

Place, publisher, year, edition, pages
Halmstad: Halmstad University Press, 2025. p. 144
Series
Halmstad University Dissertations ; 138
Keywords
Children, Participation, Norm Critique, Design, Healthcare, Care
National Category
Design Other Health Sciences Science and Technology Studies
Identifiers
urn:nbn:se:hh:diva-57488 (URN)978-91-89587-94-6 (ISBN)
Public defence
2025-11-07, S1022, Kristian IV:s väg 3, Halmstad, Halmstad, 09:15 (English)
Opponent
Supervisors
Available from: 2025-10-08 Created: 2025-10-08 Last updated: 2025-10-08Bibliographically approved

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Teleman_Vinblad_Svedberg_Nygren_Larsson. 2021_Exploring Barriers to Participation in Pediatric Rehabilitation: Voices of Children and Young People with Disabilities, Parents, and Professionals(337 kB)330 downloads
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Teleman, BrittaSvedberg, PetraNygren, Jens M.Larsson, Ingrid

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