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.

Background: An increase in the demand for child participation in health care requires tools that enable and empower children to be involved in the co-production of their own care. The development of such tools should involve children, but participatory design and research with children have challenges, in particular, when involving children with disabilities where a low level of participation is the norm. Norm-creative and participatory approaches may bring more effective design solutions for this group. “Personas” is a methodology for increasing user perspectives in design and offers representation when users are absent. However, research on participatory persona generation in this context is limited.

Objective: The objective of this study was to investigate how norm-creative and participatory design approaches can be integrated in a persona generation method to suit children with disabilities in the design of games for health that target this group.

Methods: The method development involved interview transcripts and image-based workshops. Sixteen children with various disabilities participated in persona generation through co-creation of characters and scenarios. The results from the workshops were validated together with 8 children without disabilities, 1 young adult with a disability, and 1 rehabilitation professional. A qualitative thematic design analysis was iterated throughout the process.

This study addresses the knowledge gap concerning whether and how digital support tools can amplify children’s perspectives in care contexts while counteracting adult-centric and healthcare-grounded norms. Acknowledging the influential role and power position of care professionals, this paper explores 11 professionals’ perceptions of how a digital communication tool affected child participation in pediatric and social care meetings. Professionals’ narratives were analysed from a socio-technical perspective using Interpretive Description. We found that the tool’s affordances and materiality were perceived to improve the participation conditions for some children, though not all. In cases where professionals felt the tool helped facilitate participation, they described how conversing through the tool influenced topics, meeting dynamics, and parental involvement. Based on these experiences, professionals identified shortcomings in current approaches and practices, expressed an increased openness toward new tools, and ideated alternative ways of working. We discuss how design, affordances, and materiality were perceived to facilitate immediate participation, and what implications these experiences may have for norm transformation in care contexts over time. The insights can inform designers and care professionals aiming to enhance child participation in care settings. © 2025 Teleman, Isaksson, Nygren, & Svedberg.

Engaging individuals with lived experience in research and design without incorporating critical perspectives on norms in knowledge production may result in tokenism and disempowerment. This scoping review pulls together method contributions from 38 recent health-related studies that involved children or young people in marginalized or vulnerable positions, to assist researchers and designers in methodological decisions and planning. We explore participation levels and norm-critical aspects of the studies and map their rationales for participation, theoretical frameworks, output types, and participatory tools. The analytical framework was based on youth participation models and literature in norm-critical innovation and critical participatory and health-related research. Patterns and variations in participation levels and norm-critical aspects are discussed in relation to the studies’ methodological differences and the ages of participants involved. We illustrate where high levels of both participation and norm-critical aspects were found and what signified these studies. © The Authors