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Evaluation of a Co-Research Program: Optimising Engagement in Research

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Title: Evaluation of a Co-Research Program: Optimising Engagement in Research
Language: English
Authors: Ashley Scott (ORCID 0009-0009-0727-8914), Sophie Rowland, Aniqua Mehdi, Eric Rubenstein (ORCID 0000-0002-9146-4497)
Source: British Journal of Learning Disabilities. 2026 54(1):28-38.
Availability: Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
Peer Reviewed: Y
Page Count: 11
Publication Date: 2026
Sponsoring Agency: National Institute on Aging (NIA) (DHHS/NIH)
Contract Number: R01AG073179
Document Type: Journal Articles
Reports - Research
Descriptors: Research Methodology, Program Evaluation, Intellectual Disability, Developmental Disabilities, Down Syndrome, Inclusion, Medical Research, Research Assistants, Cooperation, Researchers, Participatory Research
DOI: 10.1111/bld.70012
ISSN: 1354-4187
1468-3156
Abstract: Background: Co-research methods have improved the inclusion of people with intellectual and developmental disabilities on research teams. This article presents the evaluation of the DS-TO-THE-MAX Co-Research Program to assess program process and outcomes. The team consists of co-researchers with Down syndrome and academic researchers who collaborate on health research projects important to the Down syndrome community. Methods: We developed a logic model to map program components and outcomes. From the model, we identified and assessed five key areas. We interviewed seven co-researchers with Down syndrome and conducted a focus group with research assistants based on key areas. We analysed using thematic analysis. Findings: We found that mutual recognition of contributions and multiple communication modes facilitated engagement and team connectedness. Co-researchers reported their interests and experiences drove contributions, and they saw benefits from collaborating with each other. Co-researchers noticed accessible team practices and described self-advocating. Though co-researchers did not explicitly identify as researchers, they reported making decisions and feeling heard and valued. They shared barriers such as difficult vocabulary. Conclusions: Our evaluation showed that relationships and co-researchers' experiences and interests were central to research engagement. Co-research team evaluations are feasible mechanisms to improve inclusive collaboration for research team members with intellectual and developmental disabilities.
Abstractor: As Provided
Entry Date: 2026
Accession Number: EJ1496563
Database: ERIC
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  Data: Evaluation of a Co-Research Program: Optimising Engagement in Research
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  Data: <searchLink fieldCode="AR" term="%22Ashley+Scott%22">Ashley Scott</searchLink> (ORCID <externalLink term="https://orcid.org/0009-0009-0727-8914">0009-0009-0727-8914</externalLink>)<br /><searchLink fieldCode="AR" term="%22Sophie+Rowland%22">Sophie Rowland</searchLink><br /><searchLink fieldCode="AR" term="%22Aniqua+Mehdi%22">Aniqua Mehdi</searchLink><br /><searchLink fieldCode="AR" term="%22Eric+Rubenstein%22">Eric Rubenstein</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0002-9146-4497">0000-0002-9146-4497</externalLink>)
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  Data: <searchLink fieldCode="SO" term="%22British+Journal+of+Learning+Disabilities%22"><i>British Journal of Learning Disabilities</i></searchLink>. 2026 54(1):28-38.
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  Data: Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
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  Data: 11
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  Data: 2026
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  Data: National Institute on Aging (NIA) (DHHS/NIH)
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  Data: Journal Articles<br />Reports - Research
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  Data: <searchLink fieldCode="DE" term="%22Research+Methodology%22">Research Methodology</searchLink><br /><searchLink fieldCode="DE" term="%22Program+Evaluation%22">Program Evaluation</searchLink><br /><searchLink fieldCode="DE" term="%22Intellectual+Disability%22">Intellectual Disability</searchLink><br /><searchLink fieldCode="DE" term="%22Developmental+Disabilities%22">Developmental Disabilities</searchLink><br /><searchLink fieldCode="DE" term="%22Down+Syndrome%22">Down Syndrome</searchLink><br /><searchLink fieldCode="DE" term="%22Inclusion%22">Inclusion</searchLink><br /><searchLink fieldCode="DE" term="%22Medical+Research%22">Medical Research</searchLink><br /><searchLink fieldCode="DE" term="%22Research+Assistants%22">Research Assistants</searchLink><br /><searchLink fieldCode="DE" term="%22Cooperation%22">Cooperation</searchLink><br /><searchLink fieldCode="DE" term="%22Researchers%22">Researchers</searchLink><br /><searchLink fieldCode="DE" term="%22Participatory+Research%22">Participatory Research</searchLink>
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  Data: 10.1111/bld.70012
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  Data: 1354-4187<br />1468-3156
– Name: Abstract
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  Data: Background: Co-research methods have improved the inclusion of people with intellectual and developmental disabilities on research teams. This article presents the evaluation of the DS-TO-THE-MAX Co-Research Program to assess program process and outcomes. The team consists of co-researchers with Down syndrome and academic researchers who collaborate on health research projects important to the Down syndrome community. Methods: We developed a logic model to map program components and outcomes. From the model, we identified and assessed five key areas. We interviewed seven co-researchers with Down syndrome and conducted a focus group with research assistants based on key areas. We analysed using thematic analysis. Findings: We found that mutual recognition of contributions and multiple communication modes facilitated engagement and team connectedness. Co-researchers reported their interests and experiences drove contributions, and they saw benefits from collaborating with each other. Co-researchers noticed accessible team practices and described self-advocating. Though co-researchers did not explicitly identify as researchers, they reported making decisions and feeling heard and valued. They shared barriers such as difficult vocabulary. Conclusions: Our evaluation showed that relationships and co-researchers' experiences and interests were central to research engagement. Co-research team evaluations are feasible mechanisms to improve inclusive collaboration for research team members with intellectual and developmental disabilities.
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        Value: 10.1111/bld.70012
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