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- Dada, Shakila, et al.
(author)
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The involvement matrix as a framework for involving youth with severe communication disabilities in developing health education materials
- 2022
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In: Health Expectations. - : Wiley. - 1369-6513 .- 1369-7625. ; 25:3, s. 1004-1015
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Journal article (peer-reviewed)abstract
- Introduction: Involving youth with severe communication disabilities in health research is foregrounded in a perspective of rights and participation. Researchers aligned with a participatory and inclusive research agenda recommend that involving youth in health research should be a deliberate and well-planned process. However, limited examples exist of how researchers can facilitate the involvement of youth with severe communication disabilities in research projects.Method: The aim of this paper was to describe the application of the Involvement Matrix as a conceptual framework to guide the three phases of a research project with youth with severe communication disabilities.Results: Six youth aged 19–34 years consented to be involved in the project. All youth had a severe communication disability and used augmentative and alternative communication (AAC) to support their involvement in the research project. The Involvement Matrix provided a structure to delineate four involvement roles in three research phases: In Phase 1, youth were listeners to research information and advisors in the needs analysis. In Phase 2, as advisors and decision-makers, youth provided their opinions on selecting picture communication symbols for health materials. In Phase 3, as partners, they were copresenters at an online youth forum.Conclusion: The Involvement Matrix was used to plan and implement the involvement of youth with severe communication disabilities in codeveloping health materials for use during the COVID-19 pandemic. The Involvement Matrix can be applied together with AAC to enable meaningful involvement of youth in a health research project as listeners, advisors, decision-makers and partners.Patient or Public Contribution: This study project was codeveloped with youth with severe communication disabilities who use AAC in South Africa. A person with lived experience was involved as an advisor to the health material development process and in the drafting of the manuscript.
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