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

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  • Additional Information
    • Source:
      Publisher: Wiley Country of Publication: England NLM ID: 9815926 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1369-7625 (Electronic) Linking ISSN: 13696513 NLM ISO Abbreviation: Health Expect Subsets: MEDLINE
    • Publication Information:
      Original Publication: Oxford, UK : Wiley, c1998-
    • Subject Terms:
      COVID-19* ; Communication Disorders*; Adult ; Communication ; Health Education ; Humans ; Pandemics ; Young Adult
    • 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.
      (© 2022 The Authors. Health Expectations published by John Wiley & Sons Ltd.)
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    • Contributed Indexing:
      Keywords: COVID-19 pandemic; Involvement Matrix; augmentative and alternative communication; engagement; involvement; severe communication disabilities; youth
    • Publication Date:
      Date Created: 20220211 Date Completed: 20220524 Latest Revision: 20220922
    • Publication Date:
      20240104
    • Accession Number:
      PMC9122401
    • Accession Number:
      10.1111/hex.13445
    • Accession Number:
      35146854