March TCAID: In Focus - Trinity Health and Education International Research Conference 2022 (THEconf2022):Resilience, Rehabilitation and Reablement

Symposium on including people with intellectual disabilities in research.

Andrew P. Allen, Christina Corr, Holly Dennehy, Karen Mogendorff

A highlight of the Trinity Health and Education International Research Conference 2022 was a symposium focusing on the involvement of people with intellectual disabilities in research.

This session included presentations from Dr Karen Mogendorff, advisor participation in research, Healthy Ageing with Intellectual Disabilities (HA-ID), Erasmus MC, Rotterdam, The Netherlands, and Ms Christina Corr, research assistant at the Trinity Centre for Ageing and Intellectual Disability. The symposium was very interactive, with a lively and in-depth discussion about including people with intellectual disabilities in research, both as participants and as researchers.

Christina Corr presented on her work on an accessible researcher career development framework (based on a framework from Vitae in the UK). The Vitae document is focused on helping researchers to learn about skills they need and to update them in a structured manner.

Christina talked about developing easy read, accessible guidelines. These can be used for people who would benefit from the availability of such documents. The framework can be used not only for researchers to structure their own skill development, but also as a means for communicating what they have learnt.

Christina selected a number of areas she wanted to develop as a member of research staff (for example, subject knowledge), and created easy-read information on this. Given the general point in this session that people with intellectual disability should be included as part of research teams, the resources Christina has developed with us will be of great use.

"I was excited to take part in this symposium, but a bit nervous as well.

It was my first conference at Trinity.

I learned a lot and especially about preparing presentations.

I thought it was interesting and it I really enjoyed the experience of the conference.”

Ms Christina Corr, Research Assistant

Holly Dennehy, who has worked closely with Christina Corr, notes:

"Developing an accessible version of the Vitae Researcher Development Framework was a great learning experience for me.

Christina and I had worked together developing accessible material previously.

However, mapping the development of accessible material to a framework, which can hopefully be helpful for other people in the future was a great goal to work towards.

The framework is a good way to evidence how an individual is developing their skills as a researcher, and to have this in an accessible format will provide greater access to the framework..”

Ms Holly Dennehy, Research Assistant

Dr. Karen Mogendorff gave an exciting and thought-provoking presentation on integrating people with intellectual disabilities in medical research. She spoke about the value of input by experts by experience in medical research, allowing for grater empowerment of people with intellectual disability, as well as better fit between the research and the lived experience of people who are intended to ultimately benefit from its outcomes.

Dr Mogendorff highlighted key conditions to be met (such as accessible information, and having mutual learning, respect and acknowledgment of others’ experience). She also sounded a cautionary note about pitfalls to avoid (such as wanting too much too soon, or scientism with regard to lived experience).

Dr Mogendorff’s talk was very interactive, and it was good to see attendees who are involved in PPI in Trinity College Dublin and other organisations feed into this discussion. There was some discussion about concerns around paternalism towards people with intellectual disability, for example in terms of reimbursing them for their time in research participation. Hopefully, increased visibility of work such as that being conducted by Dr Mogendorff and Christina Corr will help to counteract ableism in research.

Karen notes:

"It was great to meet people equally committed to involve experts by experience in research at the THEconf2022. It was even nicer to get to know members of the Trinity Centre for Ageing and Intellectual Disability (TCAID). Colleagues had worked before together with TCAID in the Get Wise project, but I had not met them.

I especially liked to share and discuss ideas to integrate people with intellectual disabilities in quantitative medical research. It was great to be given the opportunity to exchange ideas at a lively interactive symposium at THEconf2022.

Dialogue and discussion are important. Only together we may ensure that experts by experience are structurally involved in research in a way that does justice to their knowledge and circumstances. Involvement of experts by experience will also make research more fun and more relevant. I hope to meet in person next time instead of online.”

Dr Karen Mogendorff, Healthy Ageing with Intellectual Disabilities (HA-ID), Erasmus MC, Rotterdam,

Rewatch Ms Christina Corr's presentation now - Making an accessible version of the vitae researcher development framework