Evidence Library

Title: Parents as co-researchers: A participatory action research initiative involving parents of people with intellectual disabilities in Ireland.
Author: Walmsley, J. & Mannan, H.
Date Published: 2009
Reference: British Journal of Learning Disabilities, 37, 271-276.
Are service users or carers authors: No/Not Known


In this project, parents of people with intellectual disabilities were recruited and trained to facilitate focus groups of similar parents in Ireland. The aim was to learn about the parents' experiences to inform service providers about how they could support families better.

Having the parents as co-researchers made a difference to the way the focus group discussions developed:

  • by being prepared to talk frankly about their own experiences, they created a sense of safety for others to follow
  • by taking a lead in initiating discussions they helped draw out important insights into people's experience of services.

The co-researchers also contributed to planning the focus groups which helped maximise attendance. They also co-presented the findings to an invited audience of the CEOS of local service providers. This gave them a sense of their collective power.   

As a result of their experience two of the co-researchers talked about how they would like to sustain the momentum of the project by creating sustainable local groups of parents. They hoped this would enable parents to lead change in their own localities. One of the CEOs said they would be in favour of creating leadership training and opportunities for parents, to help bring about changes in attitude amongst service providers. However, at the time of writing, this had not yet been achieved.

The authors conclude that it might be helpful to plan for sustainability from the outset, as a way of enhancing the impact of this kind of research.

Related entry: none currently available

Categories: impact of public involvement

Date Entered: 2010/09/28

Date Edited: 2012/11/20

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