Real participation - #RKEFest23

We’re working on research about how voluntary and community sector (VCS) organisations use digital technology, like videoconferencing, instant messaging and social media, as well as (or instead of) face-to-face methods to provide health and care services to adults with learning disabilities and/or autism. Our research looks at what works and what doesn’t, for who, and when – as well as at things that do and don’t help. We are focusing on people who have learning disabilities and/or are autistic, because that’s how they’re typically grouped together by services.

We are working on this research with the Leeds Autism and Learning Disability Digital Inclusion Network (ALaDDIN), a group of VCS organisations providing services to people with learning disabilities and/or who are autistic. We are also working with the ALaDDIN Consultation Group which comprises people who have lived experience of learning disability and/or autism.

The research design we have chosen to use is a Participatory Realist Review. We chose this method because, by doing the research in this way, we are following the tenets of evidence-based practice, in which research evidence is combined with experiential evidence from people with lived experience and from practitioners who work with them.

There is not much research published yet about digital and hybrid services for people with learning disabilities and/or autistic people, so we need to find transferable learning from other areas. Realist reviews were, of course, developed by Professor Ray Pawson (just up the road from us at the University of Leeds) to apply the systematic review process to complex policy interventions.

Realist reviews seek to explain and analyse what works, for whom and in what circumstances, and how and why it works. Bear with me while I break the Participatory Realist Review process down:

• Participatory: The process is participatory as the academic team works in partnership with people and organisations to design and carry out the research. In addition, there is an Expert Advisory Group of people with lived experience that supports the project.
• Realist: Realist reviews look at what works, for whom, and in what circumstances, and are often used to look at policy. Instead of looking just at whether something works and how much it works, they look at how things work (the mechanism of action) and why they work, to learn lessons that are transferable to other circumstances.
• Review: This methodology involves following a rigorous process to bring together published research about issues that affect the topic being researched.

The first step of a Participatory Realist Review is to develop the ’programme theory’ by making explicit any assumptions about the intervention and how it is expected to work. We do this via participatory workshops with members of the ALaDDIN groups. We then look at the published research on the use of technology to deliver services, and how services work, for adults with learning disabilities and/or who are autistic.

We see how this supports the programme theory, or theories, modifying these as we go. The results of the review – ‘middle range theories’ – then explain the relationship between the context in which the intervention happens, the mechanisms by which it works, and the outcomes produced.

We discuss these with the ALaDDIN groups and find out how they relate to their circumstances. This makes the findings transferable and able to be applied in different circumstances, such as when planning and implementing policy. We do extra literature searches to explore any relevant theories that emerge either from the literature or from the participatory workshops. Finally, we bring everything all together to make recommendations and produce guidance and toolkits for practice and policy.

At the moment there is not enough information to help VCS organisations use technology in the best way to deliver services. Technology is being seen, in some sectors, as a way to improve quality and reduce the cost of health and care services. VCS organisations are also getting more involved in delivering services to adults with learning disabilities and/or who are autistic.

Although, technology was used more during the COVID-19 pandemic, very few organisations, or the people they work with, were properly prepared for this. Now they are trying to figure out how to combine technology and in-person activities in the most appropriate way. This research will help VCS organisations know how to do this.

The team delivering this research are: Professor Anne-Marie Bagnall, Dr Kris Southby, Dr Jo Trigwell, Sally SJ Brown and Danielle Varley from the LBU Centre for Health Promotion Research; Nicky Lines, ALaDDIN coordinator; and Amy Hearn from 100% Digital Leeds. 

This project is funded by the National Institute for Health and Care Research (NIHR) under its Research for Patient Benefit (RfPB) Programme (Grant Reference Number NIHR204244). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.