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The involvement mat...
The involvement matrix as a framework for involving youth with severe communication disabilities in developing health education materials
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Dada, Shakila (author)
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May, Adele (author)
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Bastable, Kirsty (author)
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Samuels, Alecia (author)
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Tönsing, Kerstin (author)
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- Wilder, Jenny, 1975- (author)
- Stockholms universitet,Specialpedagogiska institutionen,University of Pretoria, South Africa
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Casey, Maureen (author)
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Ntuli, Constance (author)
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Reddy, Vasu (author)
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(creator_code:org_t)
- 2022-02-11
- 2022
- English.
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In: Health Expectations. - : Wiley. - 1369-6513 .- 1369-7625. ; 25:3, s. 1004-1015
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Abstract
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- 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.
Subject headings
- SAMHÄLLSVETENSKAP -- Sociologi (hsv//swe)
- SOCIAL SCIENCES -- Sociology (hsv//eng)
Keyword
- augmentative and alternative communication
- COVID-19 pandemic
- involvement
- Involvement Matrix
- severe communication disabilities
- youth
- engagement
Publication and Content Type
- ref (subject category)
- art (subject category)
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- By the author/editor
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Dada, Shakila
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May, Adele
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Bastable, Kirsty
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Samuels, Alecia
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Tönsing, Kerstin
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Wilder, Jenny, 1 ...
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show more...
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Casey, Maureen
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Ntuli, Constance
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Reddy, Vasu
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show less...
- About the subject
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- SOCIAL SCIENCES
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SOCIAL SCIENCES
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and Sociology
- Articles in the publication
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Health Expectati ...
- By the university
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Stockholm University