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The involvement matrix as a framework for involving youth with severe communication disabilities in developing health education materials.
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- Author(s): Dada S;Dada S; May A; May A; Bastable K; Bastable K; Samuels A; Samuels A; Tönsing K; Tönsing K; Wilder J; Wilder J; Wilder J; Casey M; Casey M; Ntuli C; Ntuli C; Reddy V; Reddy V
- Source:
Health expectations : an international journal of public participation in health care and health policy [Health Expect] 2022 Jun; Vol. 25 (3), pp. 1004-1015. Date of Electronic Publication: 2022 Feb 11.- Publication Type:
Journal Article; Research Support, Non-U.S. Gov't- Language:
English - Source:
- 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:
- 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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Health Expect. 2014 Oct;17(5):637-50. (PMID: 22809132) - 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
- Source:
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