Moving forward with participatory research with people with

learning disabilities

Key Findings (Accessible Version) of ESRC funded seminar series
Towards equal and active citizenship: pushing the boundaries of
participatory research with people with learning disabilities:
(ES/JO2175X/2)

Jane Seale, Melanie Nind, Liz Tilley and Rohhss Chapman

July 2015

1. Introduction

This report tells the story of a group of about thirty people who met five times to talk
about how to be better at including people with learning disabilities in research about
their lives. This is called participatory or inclusive research.

The meetings were organized by Jane Seale, Melanie Nind, Rohhss Chapman and
Liz Tilley and funded by the Economic and Social Science Research Council
(ESRC).

Lots of different kinds of people came to the five meetings (we called them
seminars). There were researchers, practitioners (for example support workers,) and
of course people with learning disabilities.
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What?
We ran five seminars over two years, each seminar talked about a different topic.

Seminar

January

The story so far

1

2013

Seminar

April

2

2013

Seminar

November High support needs

3

2013

Seminar

April

Learning from other kinds

4

2014

of

Data analysis

participatory research

Seminar

November Sharing research ideas

5

2014

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Why?
The main aim of the meetings was to talk about participatory
research with people with learning disabilities; the things that
make it difficult to do well and new ways of doing it well.

How?
In

each of our five seminars we tried to do different things so that everyone had a

chance to have a say and join in. This included:
 Listening to speakers and asking questions;
 Sharing experiences in discussion groups or “round-tables”.

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After each seminar we put copies of all the presentations on our website. You can
access them using this address:
http://participat.blogspot.co.uk/

Who?

Lots of different people gave the presentations or lead the discussions including
people with learning disabilities, practitioners and researchers.

2. Our main conclusions

When all the seminars had finished we thought about what we
had learnt about doing a better job of including people with
learning disabilities in research.

We also thought about who we could tell about what we had
learnt. Two groups of people who can learn from our research
are:

1. Participatory researchers (those with and without a learning disability)
2. Learning disability support services and support workers

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Participatory Researchers

There is no one ‘right’ way to do participatory research
with people with learning disabilities.

It is important not to let the fear of failure stop you
trying to do participatory research.

People with learning disabilities, including high support
needs can be involved in all parts of research
including data analysis, but this depends on them
receiving the right kind of support.

 It does not always have to be people from universities who start off participatory
research projects. People with learning disabilities can start them.
 We need to spend more time sharing the results of participatory research with
people with learning disabilities so that we can show how it can make a difference
to people’s lives.
 Doing participatory research is not always easy. People do not always agree.
We need to keep on talking about how to make participatory research better.

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Learning disability support services and workers

 High quality participatory research happens when there is high quality support
from good support workers.
 If we develop new ways of supporting people with learning disabilities we can
contribute to new ways of doing research.
 Support for participating in research should be part of funded support
packages for people with learning disabilities.

3. Contact Us
If you would like to talk to us about our research our contact
details are:

Jane Seale, Graduate School of Education, St Luke's Campus,
University of Exeter, Heavitree Road, Exeter, EX1 2LU j.seale@exeter.ac.uk

Melanie Nind, School of Education, University of Southampton, Highfield,
Southampton, SO17 1BJ, M.A.Nind@soton.ac.uk

Liz Tilley, Faculty of Health & Social Care, , Open University, Walton Hall, Milton
Keynes, MK7 6AA, elizabeth.tilley@open.ac.uk

Rohhss Chapman, Carlisle People First Research Team Ltd, Cambeck Bridge
Cottage, Brampton, Cumbria, CA8 2AU, rohhss@yahoo.com
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