As part of the Trinity Health & Education International Research conference, I was excited to participate in an interactive session about including people with intellectual disability in research. Dr Karen Mogendorff presented about her work on the project Healthy Ageing in Intellectual Disability (HA-ID) Academic Collaborative Centre, and spoke more broadly about the value of including people with intellectual disability in research.
Dr Mogendorff highlighted the value of input from experts by experience into research, including greater mutual understanding and empowerment of people with lived experience to contribute. At the same time, she highlighted there are conditions required for this: motivation, know-how of how/when to collaborate, accessible information, and valuing and reward participation in academia. (I made a point on this, within the session, about how a paternalistic attitude from {some} universities {some of the time} can lead to almost any form of reimbursement within research being shut down as an "inducement"; another panellist chimed that she had experience of refusal to reimburse participants).
Dr Mogendorff also spoke about pitfalls to avoid: wanting too much too soon (one has to take time to get everyone up to speed, including people within a research team without intellectual disability who are not used to working with people with intellectual disability), or involving people at too late in the research cycle (a common issue). There was an interesting point made about "onlyness"- where someone is the only person in team with disability, having to kinda represent everyone with a disability. This can be a lonely place for the individual, and probably doesn't make a lot of sense from an inclusion perspective, as other people with "the same disability" in a broad sense may have quite different experiences.
Christina Corr presented on her work on an accessible researcher career development framework (based on framework from Vitae in the UK). I've written a bit previously about frameworks in Ireland, where such frameworks are more focused on progression to different career titles etc., but the Vitae doc is more focused on helping researchers to learn about skills they need and update them in a structured manner.
Christina talked about developing easy read, accessible guidelines, that can be used for people who benefit from the availability of such documents. Christina talked about her work collaborating on the project team (including yours truly, as well as our colleague Holly Dennehy, who worked closely with Christina on this). Christina selected a number of areas she wanted to develop as a member of research staff. (e.g. 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 resource Christina has developed with us will be of great use. It should also be noted that it shouldn't necessarily be seen as being just for people with intellectual disability; there are many people with limited literacy for whom such resources can be useful - 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.
Related posts
If you like this post, follow me on Twitter: @ArchivePsych
an 1 | snipers vs thieves mod apk | fruit ninja 2 mod apk
ReplyDeleteThanks for this wonderful educative piece. It’s quite informative post and I sincerely appreciate you for this well written help article. Thanks so much for sharing. lascon post utme format
ReplyDelete