‘Working together is like a partnership of entangled knowledge’: exploring the sensitivities of doing participatory data analysis with people with learning disabilities

ABSTRACT

While there have been significant developments in the field of inclusive research with people with learning disabilities, there is limited knowledge about the ways inclusive research teams have conducted participatory data analysis. The authors argue this is inherently tied to the sensitivities involved in the inclusive research process. In this article, we present the experiences of two inclusive research teams (from the UK and Australia) who developed ways of working together to collaborate on data analysis. Both studies touched upon sensitive topics and crossed disciplinary boundaries. One was an evaluation of a series of history workshops with young people with learning disabilities; the other was an exploration of effective models of peer support for parents with learning disabilities. The authors explore different approaches to data analysis in inclusive research teams, and reflect on the politics of ‘sensitive’ research in this field, especially in relation to expectations of funders, ethics committees, and stakeholders.

KEYWORDS:

• Intellectual/learning disabilities
• inclusive research
• participatory data analysis
• collaborative data analysis
• sensitive research

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Notes on contributors

Elizabeth Tilley

Elizabeth Tilley is a Senior Lecturer in Health and Social Care; School of Health, Wellbeing and Social Care; Faculty of Wellbeing, Education and Language Studies, The Open University, UK, and chairs the Social History of Learning Disability Research Group, The Open University, UK. ORCID: 0000-0003-4665-394X

Iva Strnadová

Iva Strnadová is Professor in Special Education and Disability Studies; School of Education, Faculty of Arts and Social Sciences, University of New South Wales Sydney, Australia; AND Academic Lead Research, UNSW Disability Innovation Institute, University of New South Wales Sydney, Australia. ORCID 0000-0002-8513-5400

Sue Ledger

Sue Ledger is a Visiting Research Fellow in Health and Social Care, School of Health, Wellbeing and Social Care; Faculty of Wellbeing, Education and Language Studies, The Open University, UK. Sue has a background in social work and is particularly interested in supporting the inclusion of people with complex learning disabilities in research and the co-development of support services. ORCID 0000-0002-5927-6963

Jan Walmsley

Jan Walmsley is a visiting professor at the Open University and a researcher with a particular interest in inclusive methodology.

Julie Loblinzk

Julie Loblinzk is a self-advocate at Self Advocacy Sydney, Inc., Australia, and Adjunct Lecturer at School of Education, Faculty of Arts and Social Sciences, University of New South Wales Sydney, Australia. ORCID 0000-0003-1350-6089

Paul Anthoney Christian

Paul Anthoney Christian is a qualified performer and trustee from Access All Areas, a UK based theatre company for people with learning disabilities. Paul was also a researcher on the MADHOUSE re:exit Evaluation.

Zara Jane Arnold

Zara Jane Arnold is an actor and member of Access All Areas. She was a researcher on the MADHOUSE re:exit Evaluation.