Involving adults with learning disabilities in qualitative data analysis

1. Involving adults with learning disabilities in qualitative data analysis Joint World Conference Social Work and Social Development 2012 Dr. Se Kwang Hwang, Christine Atkinson and Phillip Walton

2. Acknowledgements • This research project was funded by Beacon North East and commissioned by a Learning Disability Partnership Board. • We wish to acknowledge all participants and a co-inquiry research steering group, with whom we worked side by side.

3. Content • Why involve participants in data analysis? • Overview of the project • The process of participatory data analysis • Learning from the project – twelve ‘top tips’

4. Why involve participants in data analysis? • Inclusion; • Getting deeper insider perspectives; • Equality: power sharing; • Empowerment: self-advocacy; • Increasing capacity and awareness. (Collerton, 2008; Tuffrey-Wijne & Butler, 2009; Nind, 2011; Kramer 2011)

5. The Study Practitioners/managers Helped to access people with learning disabilities; Supported co- researchers with learning disabilities; Supported participants with communication difficulties. Researchers with learning disabilities Involved in research design, data collection, data analysis and preparation of project report. Data collection Methods Activity day: participatory group activities Case studies: photography and picture placement Co– Inquiry Project Academic Researchers Literature review; Facilitated participatory research processes; Supported co-researchers to develop research skills; Prepared report together with co-researchers. Participants with learning disabilities Activity day exploring the use of leisure time (n=115) Took photographs of leisure time and used pictures to show what they did, what they would like to do and the barriers that restricted activities (n=10)

6. How Did We Use Participatory Analysis? • Phase -1 : Photo elicitation with participants, academic researcher, and researchers with learning disabilities C: Would you tell us more about this photo? (bicycle) Participant-2: me Bike P: Why did you take this photo? Participant-2: I like M (staff)'s bike. that one are his bike, small one is mine C: Do you like riding a bike? Participant -2: aye [yes], S: Do you ride a bike with M? Participant-2: aye [yes] sometimes, bike at school yard, me at school, a big yard.

7. Continued… • Phase -2 : Interpretation and thematic analysis with researchers with learning disabilities (Participant-2) C: I think the bike [photo] might be the best photo that shows what activity he is currently enjoying. P: yes, I agree. I guess if he got a chance to do more often, he might go more often. but may not try to do on his own because he rode a bike with staff.

8. Twelve top tips • Consider carefully necessary support, time, space; • Don’t assume/underestimate the ability of people with learning difficulties to understand complex concepts; • Pay attention to the skills, experiences and understanding that participants already have; • Use simple, clear and plain language; • Use multiple forms of communication; • Check to ensure mutual understanding;

9. Continued… 7. Engage with participants and their significant others would be helpful; 8. Involve participants with similar abilities as researchers to help them feel more at ease; 9. Don’t worry if it seems like hard work; 10. Always be clear about participant’s realistic contribution; 11. Consider how participant’s involvement could be more effective – always seek feedback from participants about the process of involvement; 12. Allow extra time.

10. Credibility and capacity building • “Because we took our time we were able to make sure that lots of people with learning disabilities were involved and this means that we can believe what we found out.” • “Nearly everyone who joined in told us they enjoyed taking part in the research. We think this shows that people with learning disabilities could be part of more research in the future.”

11. references • Cotterell, P. (2008) Exploring the value of service user involvement in data analysis: ‘Our interpretation is about what lies below the surface. Educational Action Research, 16, 5–17 • Kramer, J.M., Kramer, J. C., Garcı´a-Iriarte, E., & Hammel, J. (2011) Following Through to the End: The Use of Inclusive Strategies to Analyse and Interpret Data in Participatory Action Research with Individuals with Intellectual Disabilities, Journal of Applied Research in Intellectual Disabilities , 24, 263–273 • Nind, M. (2011) Participatory data analysis: a step too far? Qualitative Research, 11, 349-363 • Tuffrey-Wijne, I., & Butler, G. (2009) Co-researching with people with learning disabilities: an experience of involvement in qualitative data analysis. Health Expectations, 13, 174–184

12. Happy to talk more Contact: Dr. Se Kwang Hwang Northumbria University School of Health, Community & Education Studies Coach Lane Campus Coach Lane, Benton Newcastle upon Tyne NE7 7XA sekwang.hwang@northumbria.ac.uk