ORIGINAL ARTICLE
The added value of inclusive research
Jan Walmsley,
Iva Strnadová,
Kelley Johnson,
Corresponding Author
Jan Walmsley
Open University, Milton Keynes, UK
Correspondence
Jan Walmsley, Open University, Milton Keynes, UK.
Email: [email protected]
Search for more papers by this authorIva Strnadová
School of Education, University of New South Wales, Sydney, NSW, Australia
Search for more papers by this authorKelley Johnson
University of New South Wales, Sydney, NSW, Australia
Search for more papers by this authorJan Walmsley,
Iva Strnadová,
Kelley Johnson,
Corresponding Author
Jan Walmsley
Open University, Milton Keynes, UK
Correspondence
Jan Walmsley, Open University, Milton Keynes, UK.
Email: [email protected]
Search for more papers by this authorIva Strnadová
School of Education, University of New South Wales, Sydney, NSW, Australia
Search for more papers by this authorKelley Johnson
University of New South Wales, Sydney, NSW, Australia
Search for more papers by this authorAbstract
Background
The study asks when does inclusive research add value? The authors argue that this is important, given the additional time and cost of co-researching with people with intellectual disabilities. The study is situated in debates about a “second generation” of inclusive research which advocates focussing more on outcomes than process. The authors argue that this is premature, rather the authors propose that inclusive research is valuable when it helps to recognize, foster, and above all communicate the contributions people with intellectual disabilities can make.
Method
The authors conducted a literature review of 52 peer-reviewed journal articles about inclusive research and analysed them..
Results
The authors conclude that inclusive research adds value when there is a distinctive contribution which only co-researchers with intellectual disabilities can make, when it highlights the contributions people with intellectual disabilities make, and when it contributes to better lives for the wider population of people with intellectual disabilities.
Conclusions
The authors propose a revised definition of inclusive research to replace that published by Walmsley and Johnson in 2003.
REFERENCES
- Abell, S., Ashmore, J., Beart, S., Brownley, P., Butcher, A., Clarke, Z., … Hicks, K. (2007). Including everyone in research: The Burton Street research group. British Journal of Learning Disabilities, 35(2), 121–124. https://doi.org/10.1111/j.1468-3156.2006.00425.x
10.1111/j.1468-3156.2006.00425.x Google Scholar
- Aspis, S. (1999). A disabled woman with learning disabilities fights for her rights. In D. Atkinson, M. McCarthy, J. Walmsley, M. Cooper, S. Rolph, S. Aspis, P. Barette, M. Covenry & G. Ferris (Eds.), Good times, bad times: Women with learning difficulties telling their stories (pp. 73–86). Kidderminster, UK: BILD Publications.
- Aspis, S. (2000). Researching our history: Who is in charge? In L. Brigham, D. Atkinson, M. Jackson, S. Rolph, & J. Walmsley (Eds.), Crossing boundaries: Change and continuity in the history of learning disability (pp. 1–7). Kidderminster, UK: BILD Publications.
- Bane, G., Dooher, M., Flaherty, J., Mahon, A., McDonagh, P., Wolfe, M., … Shannon, S. (2012). Relationships of people with learning disabilities in Ireland. British Journal of Learning Disabilities, 40, 109–122. https://doi.org/10.1111/j.1468-3156.2012.00741.x
- Bigby, C., & Frawley, P. (2010). Reflections on doing inclusive research in the “Making Life Good in the Community” study. Journal of Intellectual and Developmental Disability, 35(2), 53–61. https://doi.org/10.3109/13668251003716425
- Booth, T., & Booth, W. (1994). Parenting under pressure: Mothers and fathers with learning difficulties. Buckingham, UK: Open University Press.
- Butler, G., Cresswell, A., Nikoletta, G., & Tuffrey-Wijne, I. (2012). Doing it together (DM special issue). British Journal of Learning Disabilities, 40, 134–142. https://doi.org/10.1111/j.1468-3156.2012.00744.x
- Cohen, J. (1960). A coefficient of agreement for nominal scales. Educational and Psychological Measurement, 20, 37–46. https://doi.org/10.1177/001316446002000104
- Cresswell, A., & Tuffrey-Wijne, I. (2008). The come back kid: I had cancer but got through it. British Journal of Learning Disabilities, 36, 152–156. https://doi.org/10.1111/j.1468-3156.2008.00515.x
10.1111/j.1468-3156.2008.00515.x Google Scholar
- Cumming, T. M., Strnadová, I., Knox, M., & Parmenter, T. (2014). Mobile technology in inclusive research: Tools of empowerment. Disability & Society, 29(7), 999–1012. https://doi.org/10.1080/09687599.2014.886556
- Deguara, M., Jelassi, O., Micallef, B., & Callus, A. (2012). How we like to live when we have the chance. British Journal of Learning Disabilities, 40, 123–127. https://doi.org/10.1111/j.1468-3156.2012.00743.x
- Dias, J., Eardley, M., Harkness, E., Townson, L., Brownlee-Chapman, C., & Chapman, R. (2012). Keeping Wartime Memory alive: An oral history project about the wartime memories of people with intellectual disabilities in Cumbria. Disability and Society, 27(1), 31–49. https://doi.org/10.1080/09687599.2011.618733
- Faulkner, A. (2013). Changing our worlds: Examples of user controlled research in action. Eastleigh, UK: INVOLVE.
- Flood, S., Bennett, D., Melsome, M., & Northway, R. (2012). Becoming a researcher. British Journal of Learning Disabilities, 41, 288–295. https://doi.org/10.1111/j.1468-3156.2012.00756.x
- Freire, P. (1996). Pedagogy of the oppressed. Harmondsworth, UK: Penguin.
- Fyson, R., & Fox, L. (2014). Inclusion or outcomes? Tensions in the involvement of people with learning disabilities in strategic planning. Disability & Society, 29(2), 239–254. https://doi.org/10.1080/09687599.2013.776491
- Grant, G., & Ramcharan, P. (2007). Valuing people and research: The learning disability research initiative: Overview report. London: The Stationery Office.
- Herron, D., Priest, H. M., & Read, S. (2015). Working alongside older people with a learning disability: Informing and shaping research design. British Journal of Learning Disabilities, 43(4), 261–269. https://doi.org/10.1111/bld.12147
- Inglis, P., & Cook, T. (2011). Ten top tips for effectively involving people with a learning disability in research. Journal of Learning Disabilities and Offending Behaviour, 2(2), 98–104. https://doi.org/10.1108/20420921111152441
10.1108/20420921111152441 Google Scholar
- Johnson, K., Minogue, G., & Hopklins, R. (2014). Inclusive research: Making a difference to policy and legislation. Journal of Applied Research in Intellectual Disabilities, 27(1), 76–84. https://doi.org/10.1111/jar.12085
- Koenig, O. (2012). Any added value? Co-constructing life stories of and with people with intellectual disabilities. British Journal of Learning Disabilities, 40(30), 213–221. https://doi.org/10.1111/j.1468-3156.2011.00695.x
10.1111/j.1468-3156.2011.00695.x Google Scholar
- Kramer, J. M., Kramer, J. C., García-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(3), 263–273. https://doi.org/10.1111/j.1468-3148.2010.00602.x
- Ledger, S. (2012). Staying Local: support for people with learning difficulties in Inner London 1971-2007unpublished PhD thesis, Open University, Milton Keynes
- McHugh, M. L. (2012). Interrater reliability: The kappa statistic. Biochemia Medica, 22(3), 276–282. https://doi.org/10.11613/BM.2012.031
- Meyer, M., Donelly, M., & Weerakeon, P. (2007). ‘They're taking the place of my hands’: Perspectives of people using personal care. Disability and Society, 22(6), 595–608. https://doi.org/10.1080/09687590701560204
- Michell, B. (2012). Checking up on DES: My life my choice's research into annual health checks for people with learning disabilities in Oxfordshire. British Journal of Learning Disabilities, 40(2), 152–161. https://doi.org/10.1111/j.1468-3156.2012.00742.x
- Minogue, G., Rynne, J., Johnson, K., Cooney, L., Luque, P., … Kearney, P. (2007). The garden story. Ennis: Brothers of Charity County Clare.
- National Institute for Health Research. (n.d.). Adding value in research. Retrieved from https://www.nihr.ac.uk/about-us/our-purpose/principles/adding-value-in-research.htm
- Nind, M. (2014). What is inclusive research? London, UK: Bloomsbury.
10.5040/9781849668149 Google Scholar
- Nind, M. (2016). Towards a second generation of inclusive research. In T. Buchner, O. Koenig, & S. Schuppener (Eds.), Inklusive Forschung (pp. 186–198). Bad Heilbrunn: Verlag Julius Klinkhardt.
- Nind, M., & Vinha, H. (2012). Doing research inclusively, doing research well? Report of the study: Quality and capacity in inclusive research with people with learning disabilities. University of Southampton. Retrieved from http://www.southampton.ac.uk/education/research/projects/quality_and_capacity_in_inclusive_research_with_learning_disabilities.page
- Nind, M., & Vinha, H. (2014). Doing research inclusively: Bridges to multiple possibilities in inclusive research. British Journal of Learning Disabilities, 42(2), 102–109. https://doi.org/10.1111/bld.12013
- Oliver, M. (1992). Changing the social relations of research production? Disability, Handicap & Society, 7(2), 101–114. https://doi.org/10.1080/02674649266780141
10.1080/02674649266780141 Google Scholar
- Ollerton, J., & Horsfall, D. (2013). Rights to research: Utilising the convention on the rights of persons with disabilities as an inclusive participatory action research tool. Disability & Society, 28(5), 616–630. https://doi.org/10.1080/09687599.2012.717881
- Povee, K., Bishop, B. J., & Roberts, L. D. (2014). The use of photovoice with people with intellectual disabilities: Reflections, challenges and opportunities. Disability & Society, 29(6), 893–907. https://doi.org/10.1080/09687599.2013.874331
- Race, D. (1999). Social role valorisation and the English experience. London: Whiting and Birch.
- Robinson, S., Fisher, K. R., & Strike, R. (2014). Participatory and inclusive approaches to disability program evaluation. Australian Social Work, 67(4), 495–508. https://doi.org/10.1080/0312407X.2014.902979
- Seale, J., Nind, M., Tilley, L., & Chapman, R. (2015). Negotiating a third space for participatory research with people with learning disabilities: An examination of boundaries and spatial practices. Innovation: The European Journal of Social Science Research, 28(4), 483–497. https://doi.org/10.1080/13511610.2015.1081558
- Slaley, K. (2009). Exploring impact: Public involvement in NHS, Social Care and Public Health Research. Eastleigh: INVOLVE.
- Stevenson, M. (2014). Participatory data analysis alongside co-researchers who have Down Syndrome. Journal of Applied Research in Intellectual Disabilities, 27(1), 23–33. https://doi.org/10.1111/jar.12080
- Strnadová, I., Cumming, T. M., Knox, M., & Parmenter, T., & Welcome to Our Class Research Group. (2014). Building an inclusive research team: The importance of team building and skills training. Journal of Applied Research in Intellectual Disabilities, 27(1), 13–22https://doi.org/10.1111/jar.12076
- Strnadová, I., & Walmsley, J. (2017). Peer-reviewed articles on inclusive research: Do co-researchers with intellectual disabilities have a voice? Journal of Applied Research in Intellectual Disabilities. https://doi.org/10.1111/jar.12378
- Tilly, L., & ‘Money, Friends and Making Ends Meet’ Research Group. (2012). Having friends – They help you when you're stuck from money, friends and making ends meet research group. British Journal of Learning Disabilities, 40, 128–133. https://doi.org/10.1111/j.1468-3156.2012.00739.x
- Tilly, L., & ‘Money, Friends and Making Ends Meet’ Research Group. (2015). Being researchers for the first time: Reflections on the development of an inclusive research group. British Journal of Learning Disabilities, 43(2), 121–127. https://doi.org/10.1111/bld.12132 https://doi.org/10.1111/bld.12132
- Townson, L., Macauley, S., Harkness, E., Chapman, R., Docherty, A., Dias, J., … McNulty, N. (2004). We are all in the same boat: Doing ‘people-led research’. British Journal of Learning Disabilities, 32(2), 72–76. https://doi.org/10.1111/j.1468-3156.2004.00282.x
10.1111/j.1468-3156.2004.00282.x Google Scholar
- Tuffrey-Wijne, I., Bernal, J., & Hollins, S. (2008). Doing research on people with learning disabilities, cancer and dying: Ethics, possibilities and pitfalls. British Journal of Learning Disabilities, 36(3), 185–190. https://doi.org/10.1111/j.1468-3156.2008.00519.x
10.1111/j.1468-3156.2008.00519.x Google Scholar
- University of London. (n.d.). Adding value through collaboration. Some examples of collaboration from the University of London. Retrieved from www.london.ac.uk/fileadmin/documents/about/vicechancellor/Collaboration.pdf
- Walmsley, J. (2011). An investigation into the implementation of Annual Health Checks for people with intellectual disabilities. Journal of Intellectual Disabilities, 15(3), 157–166. https://doi.org/10.1177/1744629511423722
10.1177/1744629511423722 Google Scholar
- Walmsley, J. & The Central England People First History Project Team. (2014). Telling the history of self-advocacy: A challenge for inclusive research. Journal of Applied Research in Intellectual Disabilities, 27(1), 34–43https://doi.org/10.1111/jar.12086
- Walmsley, J., & Johnson, K. (2003). Inclusive research with people with learning disabilities: Past, present and futures. London: Jessica Kingsley Publishers.
- Williams, V., Ponting, L., Ford, K., & Rudge, P. (2010). Skills for support: Personal assistants and people with learning disabilities. British Journal of Learning Disabilities, 38(1), 59–67. https://doi.org/10.1111/j.1468-3156.2009.00570.x
- Williams, V., & Simons, K., & Swindon People First Research Team. (2005). More researching together: The role of nondisabled researchers in working with people first members. British Journal of Learning Disabilities, 33(1), 6–14. https://doi.org/10.1111/j.1468-3156.2004.00299.x
10.1111/j.1468-3156.2004.00299.x Google Scholar
- Wolfensberger, W. (1980). The definition of normalization: Update, problems disagreements and misunderstandings. In R. Flynn, & K. Bitsch (Eds.), Normalisation, social integration and community services (pp. 71–115). Baltimore, MD: University Park Press.
- Zarb, G. (1992). On the road to Damascus: First steps towards changing the relations of disability research production. Disability, handicap and society, 7, 125–138. https://doi.org/10.1080/02674649266780161
10.1080/02674649266780161 Google Scholar
