Accepted for/Published in: Journal of Participatory Medicine
Date Submitted: May 6, 2021
Open Peer Review Period: May 6, 2021 - Jul 1, 2021
Date Accepted: Nov 22, 2021
(closed for review but you can still tweet)
Designing Tools for Participation: A Norm-Creative Method for Co-constructing Personas with Children with Disabilities
ABSTRACT
Background:
An increased demand for child participation in health care requires tools that enable and empower children to be involved in co-production of their own care. Development of such tools should involve children, but participatory design and research with children raise challenges, particularly when involving children with disabilities where low participation is the norm. Using the right participatory approaches can bring more effective design solutions for this group. Personas is a design tool for creating and keeping a user perspective, and offers representation even when participants are absent. However, research on persona generation in this context is limited.
Objective:
The objective for this study was to develop a participatory persona generation method that suits children with disabilities.
Methods:
The method development was based on 3 rounds of image-based workshops involving 16 children with various disabilities 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 disability and 1 rehabilitation professional. Throughout the process a qualitative thematic design analysis was used.
Results:
The results consist of an image-based, iterative co-construction method, accompanied by examples of personas that were generated and validated within a games for health project. The results show effectiveness in enabling flexible communication and co-construction, and resonate with salutogenic and social model perspectives. The method is discussed in terms of norm-creative tradeoffs, participation levels, and salutogenic descriptions of barriers.
Conclusions:
The resulting method may influence future design projects towards more inclusiveness and enable increased representation for disabled children in research and design. Using this method to its full potential will need a norm-critical awareness as well as extensive facilitation. Suggestions for further research include application of the method to design studies in similar contexts or user groups.
Citation
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Copyright
© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.