RESUMO
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. RESULTS: The results consisted of an image-based and iterative co-construction method. It was accompanied by examples of personas that were generated and validated within a games for health case. The method showed effectiveness in enabling flexible co-construction and communication. The data resonated with social model perspectives, and the development is discussed in terms of participation levels, salutogenic descriptions of barriers, and norm-creative tradeoffs. CONCLUSIONS: The resulting method may influence future design projects toward more inclusiveness and enable increased representation for children with disabilities in research and design. Using this method to its full potential requires a norm-critical awareness as well as extensive facilitation. Suggestions for further research include the application of the method to design processes in similar contexts or user groups.
RESUMO
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.
