The involvement matrix as a framework for involving youth with severe communication disabilities in developing health education materials

Abstract

IntroductionInvolving 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.MethodThe 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.ResultsSix 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.ConclusionThe 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 ContributionThis 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.