‘'Ethno…graphy?!? I can't even say it”: Co‐designing training for ethnographic research for people with learning disabilities and carers

Abstract

Accessible Summary We are a team of academic researchers, people with learning disabilities and carers. We worked together to design training materials for people with learning disabilities and carers to work as co‐researchers on research projects. The training was for doing a type of research called ethnography. When you do ethnography, you spend time with people to learn about their lives. In this article, we describe what we did and what we learnt. We think more people with learning disabilities and carers should be involved in research but many do not have the confidence to do it. Training can help with that. We also think that ethnography is a type of research that can be easier to do than other types of research. This is because ethnography uses the skills lots of us already have the following: watching, listening and talking to people. Abstract Background There is a strong ethical case and an urgent need for more participatory research practices in disability research but a lack of resources to support this. It is important to involve people with learning disabilities and carers at all stages, including when designing training for co‐research. Methods We co‐developed training materials to support people with learning disabilities and carers to work as ethnographic co‐researchers and for academic researchers to facilitate co‐research. We focused on what people with learning disabilities and carers thought was important to learn. Findings Whilst not all types of research methods are easy to democratise, ethnographic observation is a research method that lends itself well to participatory co‐research. Conclusions For people to be able to meaningfully participate, research processes need to become more accessible and transparent. Training that considers the needs and priorities of people with learning disabilities and carers and addresses the confidence gap is key for meaningful co‐research.

In response to “‘Ethno…graphy?!? I can't even say it’: Co‐designing training for ethnographic research for people with learning disabilities and carers”

“…They wanted to say that this shows that people, who might not think of themselves as researchers, are using research skills in everyday life when asking about things and weighing up advice before deciding what to do. In that sense we didn't agree with the statement in the article's Ethno‐Guide 1: You don't need research skills (Mikulak et al, 2021).…”

“…We talked about critical disability studies. We agreed this was a strong idea and members agreed this study goes some way to meeting the challenge offering “ possibilities of representation and accountability ” (Mikulak et al, 2021, p. 3, citing Goodley, 2018, p. 6).…”

“…CIRG reviewers agreed with the view in the reflections: “ Overall, it was a really interesting project, and has made me realise that research isn't just about asking questions—it's also the why and how !” (Mikulak et al, 2021, p. 5).…”

“…However, they stuck to their guns: “When you are learning a new skill it can also be good to have a new word to help remember it by.” We agreed to differ as we still felt the article did not explain the reasoning behind keeping the word. They had written “ the core elements of ‘ethnography’: (are) asking questions, looking, listening and ‘hanging out/spending time’ with people to find out about them and their lives ” (Mikulak et al, 2021, p. 4) but this definition did not include the reason for finding out about people and their lives.…”

“…Reflecting on their own experience of being involved in advocacy and some of their own early research activities a CIRG member said: “ Some people felt they had contributed when they hadn't contributed anything. They were just coasting .” CIRG members wanted to stress it was up to the research coordinators to be proactive and encouraging as per the instructions in the Ethno‐Guide: Involve your co‐researcher/‐s at all stages of the process (Mikulak et al, 2021).…”