dc.contributor.author |
Dada, Shakila
|
|
dc.contributor.author |
May, Adele
|
|
dc.contributor.author |
Bastable, Kirsty
|
|
dc.contributor.author |
Samuels, Alecia E.
|
|
dc.contributor.author |
Tonsing, Kerstin Monika
|
|
dc.contributor.author |
Wilder, Jenny
|
|
dc.contributor.author |
Casey, Maureen Anne
|
|
dc.contributor.author |
Ntuli, Constance
|
|
dc.contributor.author |
Reddy, Vasu
|
|
dc.date.accessioned |
2022-05-23T10:25:53Z |
|
dc.date.available |
2022-05-23T10:25:53Z |
|
dc.date.issued |
2022-06 |
|
dc.description.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. |
en_US |
dc.description.department |
Centre for Augmentative and Alternative Communication (CAAC) |
en_US |
dc.description.department |
Sociology |
en_US |
dc.description.librarian |
hj2022 |
en_US |
dc.description.sponsorship |
UNICEF and South African Swedish University Forum. |
en_US |
dc.description.uri |
http://wileyonlinelibrary.com/journal/hex |
en_US |
dc.identifier.citation |
Dada S., May A., Bastable K., et al. The
involvement matrix as a framework for involving youth with
severe communication disabilities in developing health
education materials. Health Expectations 2022; 25: 1004‐1015.
doi: 10.1111/hex.13445. |
en_US |
dc.identifier.issn |
1369-6513 (print) |
|
dc.identifier.issn |
1369-7625 (online) |
|
dc.identifier.other |
10.1111/hex.13445 |
|
dc.identifier.uri |
https://repository.up.ac.za/handle/2263/85630 |
|
dc.language.iso |
en |
en_US |
dc.publisher |
Wiley Open Access |
en_US |
dc.rights |
© 2022 The Authors. Health Expectations published by John Wiley & Sons Ltd. This is an open access article under the terms of the Creative Commons Attribution License. |
en_US |
dc.subject |
Augmentative and alternative communication (AAC) |
en_US |
dc.subject |
COVID-19 pandemic |
en_US |
dc.subject |
Coronavirus disease 2019 (COVID-19) |
en_US |
dc.subject |
Involvement |
en_US |
dc.subject |
Involvement Matrix |
en_US |
dc.subject |
Severe communication disabilities |
en_US |
dc.subject |
Youth |
en_US |
dc.subject |
Engagement |
en_US |
dc.title |
The involvement matrix as a framework for involving youth with severe communication disabilities in developing health education materials |
en_US |
dc.type |
Article |
en_US |