Evidence
Alert

With the right training, people with learning disabilities can become partners in research

A training course for students with learning disabilities succeeded in increasing their knowledge of research and their research skills. The course also increased their confidence and self-esteem. Several of the students went on to take up new work opportunities.

The authors recommend that funding should be made available to help run more of these courses in future.

What’s the issue?

Involving people with learning disabilities in research on learning disability would help make sure that the research addresses the most pressing and relevant issues. Inclusive research would respect this group’s views and represent their needs.

But people with learning disabilities need support for the demands of rigorous, academic work. There is little formal training on offer to help them learn about the research process or gain the necessary skills for taking part.

Researchers wanted to give people with learning disabilities a taster of research by introducing them to basic methods and skills. They hoped that trainees would then be able to decide whether they wanted to become researchers themselves. A second aim was to widen the pool of people with learning disabilities ready to work as partners in research or to join research advisory groups.

What’s new?

The research team developed and piloted a free training course for people with mild to moderate learning disabilities. They called it “Learning how to do research”. The weekly training sessions each lasted two hours. They ran for eight weeks at Kingston & St George's University in 2019. The students were also given homework.

Twenty-five people applied after seeing a call-out on Twitter. Researchers selected ten people to take part, ensuring a balance of genders and ages.

The course focused on understanding the research process and gaining practical skills in collecting, analysing, and presenting data. Training methods were experimental, with an emphasis on interactive, hands-on learning. Students developed their own research questions, gathered data, and presented their findings.

Most of the students were nervous about taking part, but all completed the course with enthusiasm. Eight of the students worked alongside the researchers to co-write the paper that reported the results.

Six months after completing the course, the graduates reported that they had better knowledge of research and had increased their skills. The students had greater self-esteem. Several of the students went on to take up new work opportunities.

Specific outcomes included:

  • several of the students' relatives reported that the students showed significantly more confidence in their daily lives
  • students gained confidence in being involved in advocacy meetings with peers and one student took on a new leadership role in advocacy
  • four of the students became involved in research‐related projects as a direct result of having completed the course
  • students found the session on interview skills particularly helpful and reported using their new skills when attending job interviews or being on interview panels.

Why is this important?

This pilot course shows that people with learning disabilities can become skilled researchers.

The researchers suggest that funders, universities and colleges could run similar courses to help people with learning disabilities take part in research. The course materials are available on request from the lead author.

What’s next?

The researchers would like to run the course again. They would like to develop more advanced training for graduates with a serious interest in becoming researchers. They are seeking funding to allow them to run such courses free of charge.

The researchers would look to improve certain aspects of the course, including:

  • longer sessions, to help cover large volumes of information
  • more content on literature reviews, data analysis and research ethics
  • pairing students with learning disability nursing students, so they can learn together
  • setting up an inclusive university‐based research and education group as a forum to inform education.

There is an appetite for training courses like this, both from potential students and from learning disability research teams. The lead researcher has received enquiries from researchers who are looking for people with learning disabilities to be co-researchers or advisors on projects they are planning.

You may be interested to read

The full paper: Tuffrey‐Wijne I, and others. Developing a training course to teach research skills to people with learning disabilities: “It gives us a voice. We CAN be researchers!” Br J Learn Disabil. 2020;00:1-14

Blogpost: “Our hypothesis was wrong”: How people with learning disabilities can become great researchers.

Video of one of the training sessions from the course: “A very bad research interview”

White EL & Morgan MF. Yes! I am a researcher. The research story of a young adult with Down syndrome. Br J of Learn Disabil. 2012;40:101-108

Funding

This project was funded by the NIHR Innovations Small Grants Scheme.

Commentaries

Study author and course trainer

Including co-researchers will make for the most brilliant research.

I was completely blown away by the students’ enthusiasm and eagerness to learn, and by the impact this short course had on them. In 16 hours, they have increased their confidence, demonstrated real insight and skill, come up with their own research priorities, and started to design and conduct their own studies.

These students are not stupid. They really can learn, and they did. It is just that they had never had an opportunity like this before, to learn complex skills in a serious but accessible way. They are rightly proud of their success, and we congratulate them.

Irene Tuffrey‐Wijne, Professor of Intellectual Disability and Palliative Care, Kingston University London

Study author and course trainee 

I have a mild learning disability. I beat myself up because I think I didn’t do it right. I was also nervous about meeting new people. Knowing what to expect. Will I understand it? Each week I was petrified. I might not have shown it, but I was. Can I do the homework? Am I doing it right? Even though I knew Irene and we’ve worked together before, I was still nervous.

But it was also exciting. We’re not all perfect, but we all learn. And at the end of it, we all got our certificate!

Michelle McDermott, Trainee, London

Lived experience of learning disabilities

I think it is a good idea for people with learning disabilities to be researchers. They might have different views and experiences than those without disabilities. They would be able to highlight things that are important for people with learning disabilities.

They will gain skills to research things on their own accord. It will give people confidence, skills and self-esteem as well as introducing new conversations into their lives. It means people with learning disabilities could get paid and do this as a job in the future.

Some people might need support to start researching and might need help getting on to the internet but by working together, people with learning disabilities can really get involved.

It is important for everyone to learn from each other and know that people with learning disabilities can be just as talented as those without disabilities.

Katie Harrison, Banbury, Oxfordshire, Trustee of My Life My Choice

Conflicts of Interest

None declared.