What is research? Promoting the role of adults with an intellectual disability in conducting and participating in research

Adults with an intellectual disability (ID) have an important role to play in setting the research agenda in health and social care settings, and in society. However, they may experience limited opportunities to engage in research and even less opportunity to be a researcher and identify research priorities. St Michael’s House (SMH) has a history of supporting individuals with ID to achieve their potential as a member of their community.  Some adults in SMH engage in research as part of their lifelong learning and development. However, they may not understand that this is research, or recognise its wider value. For these individuals it is important to expand their experience of research and for others to introduce research as an area they can contribute to.

This project will build capacity and confidence amongst adults with ID to participate in and lead research. It adopts a staged approach by developing and delivering a series of accessible workshops supporting adults with ID to understand what research is, how to set a research goal, how research is conducted, and how they can influence the research agenda more broadly. 

Adults within SMH have already had the opportunity to engage in research locally and nationally. These adults will be part of this project, supporting and guiding the planning process, creating accessible workshop content and co-facilitating their delivery, thus enabling peer-to-peer learning and support. They will input as a group of Experts by Experience. 

Accessible workshop content will act as a template that can be modified for other groups across the organisation and the sector. SMH has advisory groups led by persons using services and supports. These groups are available as partners in this project and can advise on facilitating engagement with their peers, developing introductory information, and contribute to development of the workshop, template and resources. They have the opportunity to share their knowledge and experience of research during the project. 

A broader understanding of research will give participants more confidence to engage in their learning and to share findings with the wider organisation and beyond. This project has been developed as part of a longstanding research and teaching memorandum between SMH and UCD. Developing a formal framework to support the contribution of people with ID to the development of research will add significantly to this partnership.

The project promotes equality by bringing together staff with backgrounds in social care, advocacy, psychology and speech and language therapy and individuals with ID who have experience supporting research as part of the ACT and Information Transformers groups in SMH. The project also has the potential to increase equality beyond the direct impact of the workshops. Some participants may be accompanied to the accessible workshops by staff members . In this way the project can also impact on wider staff knowledge and attitudes about the role of people with ID in research, supporting them to be more involved in research.

Team: Caroline Howorth (SMH), Prof Suzanne Guerin (UCD), ACT Service User Consultation Group (SMH); Information Transformers Consultation Group (SMH) with Teresa Gadd, Sabrina Barrett & Sarah Hewitt (SMH Staff Members)