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We were a team of nine three academics, three family carers and two self-advocates and a support worker. Between us we work for the University of Oxford, Oxfordshire Family Support Network and Together All are Able and My Life My Choice. Over 6 weeks we designed training materials for people with learning disabilities and family carers to become co-researchers on projects where family carers and people with learning disabilities are research participants.  

The training focused on identifying the skills (watching, listening, and talking) the experience (of living your own life) and approaches (being respectful, and flexible) needed to do ethnographic research.

We think more people with learning disabilities and family carers should be, and could be, involved in research which is about them and their lives. They may not have the confidence to get involved and training can help with this.  Academics, usually the trainers, may not know what they need to convey in their training to this group of ‘students’. We decided creating a simple toolkit for everyone to use would be the best way forward. We have produced it and will now test it on the research project “Growing Older Planning Ahead” before sharing more widely.

These are our experiences, and what we learnt: 

 Putting the bid proposal together with Charlotte was a huge step for me. I know that family carers and people with learning disabilities can be excellent participants in research, engaged and insightful. I know too that we make good researchers – bringing experience and questioning minds to quality-of-life issues. However, claiming the co-researcher training space – traditional academic territory - and the power and responsibility that comes with it, felt a little daunting. The University team were honest – they hadn’t done this before either – and they were remarkably unfazed and openly excited.

We sorted the sheep from the goats - those who could say ‘ethnography’ - only to be flummoxed by the meaning of the ‘E’ word. “I quietly remembered my interview to study anthropology, in the 1980s at the School of Oriental and African Studies; prior to the interview I was required to watch an academic at work in the jungle with a ‘tribe’. I was as doubtful then as now about the ethics of such an approach. When we put the pet mini-ethnography into practice, it came as a relief and a delight. I was able to be with, chat and think about Charlotte and Gatsby her cat. I speak as no animal lover! For me, it was about their relationship, the motivation to have and keep a cat and the daily experience of ‘parenting’ him.

The co research project I found really interesting. I was asked to come into it by Sara Ryan. It was good to meet new people and listening to their experiences. It has also been an opportunity for me to share my experience and learn something new. It will be interesting to see what happens next with this project. 
[I would like to see] More people with Learning Disabilities and or Autism become researchers.

It was a bit unsettling to go into this project with no idea of what the end result might be, but I have had a lot of fun working on it. The meetings were creative chaos and it was sometimes hard to make sure everyone had equal time and space to contribute, so I do wish we had more time. Having said that, I am grateful for everyone’s generosity and commitment and I also feel quite proud of what we have achieved in such a short time. I hope what we produced will help people with learning disabilities and carers become more confident researchers.

E-Eth-Ethnography – or however say it! Is about doing things with people and learning about their lives. Lisa and I took part in a few meetings about this type of study. We found these meetings fun, chatty and a great of way of getting to grips with ethnography. We got to practice our skills of interviewing people. We were asked to find out about what it is like to have pets in lockdown. As we are sure you have found, living in lockdown has been tough. It has been tough for people, but it has also been tough for animals. Sara told us about her dog, Bess. The family takes her on walks in the local parks, and it seems like every other family are taking their pets for walks too! Sara said Bess has gotten confused a few times and followed other families’ home! The vets have been very different too. Pet owners have had to drop off their pets for treatment and come back to collect them after. For some, like myself, we have found this rather impersonal. I have enjoyed this experience of practicing by interview skills, and now feel very ready to interview people about their experiences of growing older. If anyone wants to get to grips more with ethnography or interviewing people, I definitely recommend this!

I was nervous but also excited starting this project, mainly because I really didn’t know what the result was going to be.  I teach research methods, and start sessions clearly sharing objectives of what we’re going to learn together…this really flipped that round, and instead of talking about what need to learn so we can do qualitative research, we talked about what we already knew, and what we thought we needed to know. I think the flexibility to take this approach meant we could make something together that can be genuinely useful and helpful.

The project underlined how important it is to work with people and how our role as researchers should involve a core strand of enablement and facilitation which is too often missing.

 

Having usually being in the situation when working on projects, where set questions had already being determined in order to elicit the information needed, it was really interesting to go back a step further and consider the bigger picture by thinking about a whole range of factors that needed to be taken in to consideration when doing ethnographic research and planning a project.  Working as a group meant that we were able to share and develop ideas that I hadn’t necessarily even considered.

What was also fun, was putting our discussions in to practice and conducting our own research – in our case “pets in lockdown”.  It made me more aware that talking about and actually doing the research are two very different things and that you need to be prepared to be adaptable as no situation is ever the same.  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!

My feeling is our modest start through this project, is part of a growing understanding that family carers and people with learning disabilities have the potential to be game changers in co-researcher training. My hope is that this way of working becomes ‘good practice’ – if it must be rated – or just the ‘everyday way of doing things around here’.