What Makes a Good Self
Advocacy Project:
The
added value of co-production
What this Learning Report is about
This
is about co-produced research funded by DRILL to define what makes a good self
advocacy project and to make an Evaluation Toolkit for self advocates and
funders to use.
The
five people who did the DRILL funded research together are:
·
two independent academic
researchers (Jan, who was subcontracted by All Wales People First, and Bryan,
who worked as part of BAROD),
·
two activist researchers (Alan
and Simon)
·
one supporter / technical
advisor (Mal).
We
also had support from Anne Collis, BAROD
The four
researchers all had equal roles and equal responsibilities.
The
Report explains how we all worked together to co-produce the research and the
Toolkit.
The
Report considers what made it possible for co-production to work well.
How the Project started
This project started with All Wales People
First. This is unusual. Research usually starts in universities. This means
people with learning disabilities do not usually control what gets researched.
The Director of All Wales People First had
an idea for some research. DRILL (Disability Research for Independent Living
and Learning) were offering research money for research controlled by disabled
people. This meant there was a chance to
put the idea into practice. The Director talked to Barod about his idea.
Barod is a cooperative set up and run by a
mix of people with and without learning disabilities who met through the People
First movement. Barod put the Director in touch with Jan, a self-employed academic
researcher, who had just the right experience to work with the Director and
BAROD to develop the research idea into a good research proposal.
Why was this research project the top research priority for All Wales People First?
The idea was to develop a toolkit so self advocates could evaluate self
advocacy projects for themselves. It would help them plan and run better
projects. It would prove to funders and commissioners that the projects were
worth funding. This is really important for self advocacy, because it is
getting harder to get funding. Groups are closing all over the UK because they
cannot get funding.
Getting the money and getting ready
All
Wales People First, Barod and Jan co-designed the project. All Wales People
First sent the research proposal to DRILL. We were delighted that they chose to
fund this project.
Barod has experience
thinking about what ‘researching ethically’ means, and making accessible
consent forms. Jan has experience with research ethics committees. We put our
skills together, and got ethical approval from the Open University research
ethics committee.
Training
We
needed to improve our research skills and get to know each other so we could
work together as a team.
We
met in Cardiff in March 2017 for 24 hours. We practised asking questions. This
was videoed. The first practices did not go well, but we got better.
We
had not budgeted to run a pilot focus group, but we decided we needed to do one
to test the changes we had agreed. A self advocacy organisation in England let
us practise with them.
It
really helped to have a project budget and timetable which allowed us time to
train before we had to start the research.
The
24 hour meetings gave us all a chance to spend time together, getting to know
one another over a meal.
Doing
the training together gave us a lot to think about and reflect on.
Doing the Research
We
set up two teams, each with one academic and one activist researcher. We
designed the focus groups and interviews together. One team ran focus groups
with self advocates about their projects. The other team interviewed
commissioners and supporters of self advocacy projects.
We
did the data analysis together at a 24 hour research group meeting. We watched
back parts of the videos and compared our notes. We broke the notes down and then merged them
together using post-its spread out across a large table. We designed the
toolkit together using a mixture of meetings and email. We made all the key
decisions together.
We
took the toolkit to self advocacy organisations around Wales and asked them to
test it with us. Then we made changes to the toolkit. The toolkit was launched
October 2018 at the All Wales People First annual conference.
How co-production added value
Academic researchers, Melanie Nind and Hilra
Vinha (2012) worked with over 60 inclusive researchers to create a list of
essentials for inclusive, high quality research. We have used that
list to help explain how coproduction made this research work better and
give us better results than if we had used more traditional research
methods.
Answering
the right questions
The
activist researchers and academic researchers had different ideas of what was
most important to ask. By coproducing the focus groups and interviews, we
worked out what to ask and how to ask it. This meant it was easier for self
advocates to tell us what really mattered to them about self advocacy projects.
Getting
to hear from the right people
Working
together made it easier to recruit participants. Between us, we knew most of
the leading self advocates and groups in Wales. We were already known and trusted.
Jan knew a group in England who trusted her enough to let us practise with
them.
Listening
to and understanding what people with learning disabilities say
Alan
used his experience as a self advocate to put people at their ease so they
talked openly. Bryan and Simon found interviewees (without learning
disabilities) were responding more thoughtfully because one of the interviewers
has a learning disability.
Based
on our experience we would say that you should not do research about people
with learning disabilities unless you have researchers with learning
disabilities as part of the team, because you will not good quality data.
The
research makes sense to the people it is about
The
morning part of the focus groups had people doing activities and talking.
Having a self advocate explaining activities made it clear that the activities
were designed for self advocates.
Over
lunch, Jan and Alan talked and agreed what they thought the key points were.
They wrote these down in plain English.
In
the afternoon, participants used activities and voting to look at the key
points. They checked Jan and Alan had understood what the participants wanted
to say.
The draft toolkit has
made sense to the self advocacy groups who tested it. We believe this is
because of our co-productive method of collecting and analysing data.
The
research has an impact on the lives of people with learning disabilities
It
is too early to say if the research will have an impact on self advocacy groups
and self advocacy projects.
We
know that people with learning disabilities are excited by the toolkit, and are
looking forward to using it.
We know doing the research
changed all four researchers, not just the researchers with learning
disabilities.
How we wrote this Learning Report
We
wrote the Report as a team.
When
we met near the end of the project we made a timeline of what we had done, and
we all added our thoughts about it. Jan then went away and wrote a draft
Report. The team made some changes, added ideas and put it into plainer
language. Then Jan went off to write the final version. The team did a final
check and made final changes before sending the Report to Joe Powell, Director
of All Wales People First. Joe checked it and sent it to DRILL.
This
report has all of our voices.
Conclusion
We have a toolkit that works and uses self
advocates’ ideas about what makes a good project. It should help self advocacy groups apply for
funding for future work. We think this research has benefited people with
learning disabilities.
The way we did this research gave us a
better Toolkit than if the academics or activists had done the research by
themselves. We think everything on Nind and Vinha's list is important. When we checked our work, we had done all these things. We think doing these things made our research more useful and better quality than if a team just of academics had done the research.
Our funder, DRILL, gave us the space to
start working together from the start. This meant we could make sure we asked
the right research questions. We think this should be added to Nind and Vinha’s
list of essentials.
Reference
Nind, M., & Vinha, H. (2012). Doing
research inclusively, doing research well? Report of the study: quality and
capacity in inclusive research with people with learning disabilities. University
of Southampton. http://www.southampton.ac.uk/education/research/projects/quality_and_capacity_in_inclusive_research_with_learning_disabilities.page
For more information about the
Toolkit, please email joe@allwalespeople1st.co.uk
For more information about the
research methods, please email janwalmsleyassociates@gmail.com
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