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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
- Article/chapterEnglish2022
Publisher, publication year, extent ...
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2022-02-11
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Wiley,2022
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printrdacarrier
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LIBRIS-ID:oai:DiVA.org:su-202730
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https://urn.kb.se/resolve?urn=urn:nbn:se:su:diva-202730URI
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https://doi.org/10.1111/hex.13445DOI
Supplementary language notes
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Language:English
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Summary in:English
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Subject category:ref swepub-contenttype
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Subject category:art swepub-publicationtype
Notes
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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.
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Added entries (persons, corporate bodies, meetings, titles ...)
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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-Stockholms universitet,Specialpedagogiska institutionen,University of Pretoria, South Africa(Swepub:su)jewi2585
(author)
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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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Stockholms universitetSpecialpedagogiska institutionen
(creator_code:org_t)
Related titles
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In:Health Expectations: Wiley25:3, s. 1004-10151369-65131369-7625
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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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- 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