Learning Report from the DRILL funded Self Advocacy Toolkit research

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