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

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.

PPIE in a technical research study: Using public involvement to refine the concept and understanding and move towards a multidimensional concept of disability

“…Like recent work, our findings advocate for co‐produced or collaboratively conducted research on disability with those who have and continue to experience disability. 40 , 42 Several publications show that doing so successfully and inclusively requires flexibility in public involvement methods to support the access needs of disabled members of the public and the pursuits of the research. 39 , 40 , 43 …”

“… 40 , 42 Several publications show that doing so successfully and inclusively requires flexibility in public involvement methods to support the access needs of disabled members of the public and the pursuits of the research. 39 , 40 , 43 …”

Co-Design of an Intervention to Increase the Participation in Leisure Activities Including Adolescents with Cerebral Palsy with GMFCS Levels IV and V: A Study Protocol

“…Using this study, it could be possible to guide the intervention based on their real needs, motivations and interests. The implementation in both countries will allow a comparison of the differences and similarities between both preliminary intervention protocols designed, the needs of some adolescents with CP regarding participation in the community, what were the roles chosen by all the participants, the relationships and dialogues established in the different dialogue groups created and the results obtained regarding the co-design of the intervention protocol and their own perspectives on the use of the IM [14,40,41].…”

Co-design and delivery of a relational learning programme for nursing students and young people with severe and complex learning disabilities

“…In terms of levels of involvement and influence (Dada et a., 2022) young people with ILDs were listeners to information about the project, and advisors in deciding the approach (via parent communication). They provided their opinions on whether they wanted to join the programme and the format of the drama based online sessions.…”