Progress Report: Towards equal and active citizenship: pushing the boundaries of participatory research with people with learning disabilities

ESRC Seminar SeriesES/J02175X/1

Jane Seale, Melanie Nind, Rohss Chapman, Liz Tilley

This seminar series is focusing on participatory research with people with learning disabilities and in particular the challenges related to two complex but relatively under-explored issues in participatory research:involving people with learning disabilities in data analysis, and involving people with learning disabilities who have high support needs. The aims are to critically examine the unacknowledged or underexplored tensions and challenges to what might be considered full or genuine participation by people with learning disabilities in research, and to stimulate innovative developments in methods. Our approach involves synthesising the achievements in relation to participatory research with people with learning disabilities to date and acting as a catalyst for thinking and action in the two identified areas needing development.

Currently, two seminars have taken place. The first, University of Plymouth 10th January 2013, scoped the boundaries of participatory research and did much of the synthesis work. This was important for establishing a common platform from which to move forward. The second, University of Manchester 23rd April 2013, showcased and debated participatory data analysis methods. This had a more practical focus and highlighted how challenges were being met. Speakers have included:

  • academics with a long track record who are well-placed to reflect on the state of the art (Profs Jan Walmsley, Dorothy Atkinson, Gordon Grant);
  • early career researchers in the thick of pushing the boundaries of participatory research in their particular domains (Hanna Bertilsdottir, Ruth Gabutt);
  • partnerships of academics and people with learning disabilities researching and presenting together (Manchester Partnership Steering Group, Carlisle People First research cooperative, Val Williams and Andrew Barbour); and
  • international groups (the Irish Inclusive Research Network and Gudrun Steffansdottir and team from Iceland) and individuals ((Hanna Bertilsdottir doctoral researcher from Sweden).

The next seminars are planned and the third, University of Southampton 28th November 2013 will address participatory research with people with high support needs. The final seminar, The Open University 10th April 2014, will foster making connections across different disciplinary areas and groups. This will be an important catalyst for conceptual thinking.

Interest in the seminars has been high with 32participating in seminar 1 and 62 in seminar 2 with a waiting list and additional 20 seeking information but unable to attend. 15 bursaries have been awarded, allowing for those with poor financial resources or high support costs to be involved. The intended mix of people with learning disabilities, their support workers, PhD students, early career researchers and experienced researchers and co-researchers coming together to present and contribute to discussions is being realised. The disciplines of health and social care, social policy, education, social work, disability studies and psychology have been represented. One objective was that the seminar series would be accessible and interactive. We have been achieving this through publicity in a mix of traditional academic and ‘easy read’ formats, engaging presentations, and on-going, constructive guidance from those involved about the relative merits of various approaches to fostering understanding and dialogue.

We wanted the seminar series to build further knowledge exchange and development from previous ESRC funded projects in this area and to advance our theorisation of inclusion, participation and co-production. This is happening through the mix of people who have worked together previously with new colleagues and through interaction during and between seminars. Further interaction and time is needed to maximise the outcomes from this. To date, though, one Methods Review paper for the well-used National Centre for Research Methods series, has been produced and is under review. This builds on Nind's earlierreview paper, 'Conducting qualitative research with people with learning, communication and other disabilities: Methodologicalchallenges' and recent ESRC study ‘Quality and capacity in inclusive research with people with learning disabilities’, combining with seminar input to provide practical guidance on methodological new ground. In addition we have created a project blog and uploaded speaker slides to slideshare. The slides have to date achieved 506 views.

Jane Seale & Melanie Nind, 24 July 2013