Abstract
BackgroundAn 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.ObjectiveThe 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.MethodsThe 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.ResultsThe 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.ConclusionsThe 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.
Highlights
Recent research has shown that while participation is on the agenda of health care professionals, practical guidelines and tools for child participation are lacking [1,2,3,4,5]
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 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
Summary
Ethical approval was granted by the Regional Ethical Review Board at Lund University, Sweden (No: 2017/707). The interview transcripts analyzed in Phase 1 included the following 4 groups: children with disabilities, young adults with disabilities, parents of children with disabilities, and professionals working in pediatric rehabilitation (Figure 1). An additional group of children aged 10 to 12 years without disabilities was recruited through a local school for some validation workshops (question-led brainstorming). These workshops aimed to assess the personas’ usability in a design activity, which could involve people outside of the target group (see the Ethics section). The validation phase involved 1 young adult with a disability (ie, formerly in the target group) and 1 professional working in pediatric rehabilitation. J Particip Med 2022 | vol 14 | iss. 1 | e29743 | p. 4 (page number not for citation purposes)
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