An Introduction to Inclusive Research
An Introduction to Inclusive Research
By Jan Walmsley
I have been practising 'inclusive research' with people with learning (intellectual) disabilities since the early 1990s. I coined the term in an article published in 2001, and have been amazed to see it blossom into an international phenomenon, and to spread to research with other groups of people. This article introduces the range of approaches known as inclusive research, explains what makes them distinctive, gives some examples of how inclusive approaches have been used, their benefits, and some of the challenges inherent in this type of research.
What is Inclusive Research?
Inclusive research is a term that was coined in the early twenty first century to embrace participatory and emancipatory approaches to research with people with learning/intellectual disabilities (Walmsley 2001). It has subsequently been adopted in work with children, young people, older people, and survivors of the mental health system (Nind 2014). Although a family of methods, rather than a single approach, what inclusive research projects share is a reconfiguration of the relationship between professional researchers and those usually positioned as the 'subjects' of research, a shaking up of the hierarchy which traditionally
positions researchers as expert commentators on the lives of other people. Inclusive research privileges insider accounts, 'experts by experience', and results in less rigid hierarchies, and a sense of research as a shared journey. The Open University has been a pioneer of this approach to research, particularly with people with learning disabilities - see http://www2.open.ac.uk/hsc/ldsite
Inclusive research embraces participatory and emancipatory approaches to research. Its characteristics are that it:
ï‚· Is owned (not necessarily initiated) by lay people
ï‚· Furthers the interests of lay people, researchers are on their side
ï‚· Is collaborative
ï‚· Enables lay people to exercise control over process and outcomes
ï‚· Produces outputs that are accessible.
(adapted from Walmsley and Johnson 2003)
Inclusion in research can be conceptualised as a spectrum. On the left of the diagram is traditional research, led by academic researchers. On the right is emancipatory research, with lay people making the major decisions.
In between are lay people as advisors; or lay people working as part of the research team, in partnership. These middle two are the most common ways of practising inclusive research.
Inclusive Research: Why Now?
Inclusive research is part of a wider rights movement. Nothing about us without us (Aspis 2000), a slogan of the disabled people's movement, has been applied to research as well as other areas. Inclusive research developed alongside the closure of large institutions for people with learning disabilities, and the associated arguments for promoting access to normal patterns of life known as normalization/social role valorization. (Atkinson and Williams 1990, Buchanan and Walmsley 2006). Inclusive research is illustrative of changing ideas about people with learning disabilities, from patients to citizens, from incompetent and burdensome 'objects of charity' to
people with rights and with the potential to learn and contribute (Welshman and Walmsley 2006). It has been influenced by ideas developed in the disability movement which regard research as having the potential to contribute to the emancipation of disabled people as long as it is under their control (Oliver 1992).
How Has Inclusive Research Been Used?
The very earliest examples of inclusive research are life stories. People are experts on their own lives, so enabling them to recall and record their often very distinctive life experiences has been important, particularly for survivors of many years spent in institutional care. One of the earliest examples, predating the very idea of inclusive research, was Joey Deacon's life story 'Tongue Tied', published in 1974. Joey was a resident in a long stay hospital, he could not read or write, but his story was written down by fellow patients, and published under the by-line 'Subnormality in the Seventies' by Mencap.
A more recent example is Mabel Cooper who, coincidentally was in the same hospital as Joey Deacon. She wrote her story after leaving. Some of her story was based on memory (Cooper 1997) but there was a great deal she did not know about her story. Working alongside, academic Dorothy Atkinson, Mabel pieced together what had happened to her.
My name is Mabel Cooper. I'm 56 years old, and I live in Shirley, Croydon. This is the full story of my life. It is my autobiography. I was born on the 10th August 1944, in Islington, London. Although I didn't know it at the time, my mother was homeless and begging on the streets of London. When I was just four weeks old I was taken into care. I never saw my mother again. I stayed in care for years and years, first in children's homes and then for over 20 years in St Lawrence's Hospital in Caterham, Surrey. I know this now. But I didn't know any of it (except for my birthday) when I first started trying to find out about the past, my past, and what happened to me. I'm finding out the schools I went to and why I was expelled. I keep finding out the names they called people in those days, and what they called me. I'm finding out about my mum because I've never known her.
Mabel used the work she did on her life story to educate people about institutions. She was recognized for this work by the award of an honorary degree by the Open University in 2010.
Other types of qualitative research
Inclusive research has been used in other types of qualitative research. Val Williams (2010) employed two co-researchers with learning disabilities and used conversational analysis to better understand the skills needed for good support workers. The co-researchers were involved in interviewing people with learning disabilities and their support workers, filming them in everyday activities then using the films to identify what makes for good supporters.
Iva Strnadova and colleagues (2014) trained 8 researchers with learning disabilities to undertake interviews with older women about well-being and ageing. The co-researchers participated actively in undertaking interviews and providing advice but were less interested in the analysis of the data which was primarily undertaken by the academic researchers.
Photovoice was used by Ollerton and Horsfall (2013) to enable people with learning disabilities to visually record the barriers they experienced in trying to lead lives as equal citizens. Memorably, one person photographed the lock on the door of the kitchen. She was not allowed even to make a cup of tea for herself.
Research led by adults with learning disabilities
There are many examples of research where adults with learning disabilities work alongside academic researchers, but few where they are in charge. One exception was described by Walmsley (2014). Central England People First, an organization run by adults with learning disabilities, obtained funding to record their own history. The fact that they held the budget meant they had more of a say than professional researchers. They opted not to record conflicts (of which there had been many) as they did not wish to exacerbate hurt feelings. It was more important, they argued, to preserve relationships so that the organization could carry on.
Another example is from Cumbria Research Cooperative, a well established group of people with and without learning disabilities. This group chose to investigate the experiences of adults with learning disabilities in World War 2 (Dias et al 2012), and how people with autism can access advocacy, an interest sparked by one of their members who has a diagnosis of autism (Townson et al 2007).
Large scale quantitative research
Inclusive research has been far less widely used in large scale quantitative studies, for obvious reasons. Some notable exceptions are:
The National Survey 2005In 2004, the English Government commissioned a national survey of people with learning disabilities. The bid was won by a University and Market Research firm which recruited a group of adults with learning disabilities to work with them to ensure that their methods were accessible to people with learning disabilities, and that they understood the results. The partners with learning disabilities were responsible for helping the team develop simple questioning techniques which have subsequently been much more widely used (Emerson et al 2005).
The Learning Disability Research Initiative 2007
People with learning disabilities were involved in the Â£2 million Learning Disability Research Initiative (LDRI) in 2007, as advisors and critics of the process of commissioning a major suite of research. The challenges of effectively engaging with their disabled advisors were well and graphically described by Grant and Ramcharan (2007), the academics whose task it was to manage the programme.
Clinical Trial 2012
Turk et al. (2012) reported on the participation of adults with intellectual disability in a randomized control trial for health research.
What Are The Benefits of Inclusive Research?
I would argue that inclusive research benefits both society, and the people who are involved in doing it.
Inclusive research allows us to benefit from the insights of groups of people whose voice is seldom heard. I quoted from Mabel Cooper's published life story above. It is important that we remember the consequences of policies, and one excellent way of doing this is by hearing people's stories. Mabel touched many lives with her work, which helped put the record straight about institutional life. Learning from those subject to it, as well as the great and the good whose voices are the ones we usually hear, has to be important.
Methods pioneered in inclusive research have permeated practice in many ways. 'Easy read' was developed by inclusive researchers to enable co-researchers to work on research projects, and to communicate the results. It is now common place for services and policy makers to provide easy read versions. Talking mats were developed by researchers working with practitioners, and are now widely used to access the views of people who use services. Regulators such as the Care Quality Commission use Experts by Experience as part of their inspection teams. Again, the idea that service users are the best people to help other service users speak up owes much to inclusive research.
Inclusive research has also been used to develop practice in health care. Irene Tuffrey Wijne worked with people with learning disabilities who had had cancer to develop new guidelines for professionals working in this field (Tuffrey Wijne 2013) informed by the experiences of people with learning disabilities. In another study, Gareth Price reported on a health check with his GP. Because he had been involved in researching doctors' practice, he knew what to expect of a Health Check, for which GPs get paid, and recorded 'I like my GP, he has been good to me in the past, but I don't think he knows what a proper health check is' (Michell 2012). The potential for inclusive research to give insight into the quality of health care experienced by people who experience marginalization and discrimination has yet to be fully realized.
Individuals who have been involved in research projects record numerous benefits - to self confidence, to understanding their rights and what they are entitled to expect, to having their names on papers, appearing at conferences, even, in some cases, gaining paid employment. Although it might be argued that not everyone can be a co-researcher, the concept has been translated into service land. For example, a group of people from County Clare Ireland, undertook travel research rather than travel training. The change of concept served to put them in the driving seat rather than, as so often, being the people who needed training. This group have subsequently researched how archaic legislation which forbids anyone engaging in sexual intercourse with a person with a learning disability impacts on people - and are actively lobbying for a change in the law (Bane et al 2012). It is perhaps a weakness of inclusive research that its benefits have not been more widely transferred into practice.
Inevitably, such a radical approach to research presents numerous challenges, practical and ethical.
Who to involve?
Whilst we require professional researchers to have qualifications and relevant skills, it is a more open question how to select lay researchers. Are we looking for people with an understanding of research and research skills, or are we looking for typical representatives of the marginalized population? In practice, much inclusive research has been developed by people who already have relationships with academic researchers. As inclusive research develops, so jobs for co-researchers are beginning to be advertised. These will put more of a premium on people being research ready - but may exclude people who have very valuable experiences to share.
Whilst some funders of research are sympathetic to, even require 'users' to be involved, inclusive research if done well
is always more time consuming and therefore expensive than traditional research, and funders can baulk at the cost implications. In addition, few application forms, timescales and processes are accessible to people outside academia, so compromises are often made over the full involvement of co-researchers in research bids.
Negotiating the ethics committee
Persuading an ethics committee to approve research where people traditionally seen as 'vulnerable' are positioned as co-researchers can be a major challenge.
Process versus outcome
At times, the need to make the research process accessible and welcoming takes precedence over the need to produce outcomes, so inclusive research can be less productive in terms of creating new knowledge than other types of research. Furthermore, whilst enabling people to think up questions, and involving co-researchers in interviewing or running focus groups is achievable, knowledge of the literature, analysis of research data, and writing up are less amenable to being made accessible. Again, compromises are almost inevitable, despite imaginative techniques such as using film rather than the written word to communicate results.
Professional researchers require their achievements to be recognized through peer reviewed publications, conference presentations etc. These have less importance for co-researchers, who are likely to be more interested in using the research to improve their own lives and the lives of others.
Inclusive research has made considerable inroads into the research world. There is interest in it across western and northern Europe, Australia and New Zealand. Prestigious Journals such as the British Journal of Learning Disabilities (in 2012) and Journal of Applied Research in Intellectual Disabilities (in 2014) have devoted Special Issues to it. The National Institute of Health Research has commissioned a Methods Review. We are still learning how to do it well, and undoubtedly if this article were to be revisited in ten years' time, many more achievements would be recorded.
Reading to get you started
Here are the titles of some books to read if you want to know more about Inclusive Research.
Aldridge P (2015) Participatory Research Bristol: Policy Press
Beresford P and Croft S (2012) User Controlled Research: Scoping Review London: School of Social Care Research available on http://sscr.nihr.ac.uk/PDF/ScopingReviews/SSCR-Scoping-Review_5_web.pdf
Nind M (2014) What is Inclusive Research? London: Bloomsbury
Walmsley J and Johnson K (2003) Inclusive research with people with learning disabilities: Past, present and futures. London: Jessica Kingsley Publishers
Atkinson, D. and Williams, F. (1990) 'Know Me As I Am'. An anthology of prose, poetry and art by people with learning difficulties. London: Hodder and Stoughton.
Aspis, S (2000) Researching our history: who is in charge? In Brigham L, Atkinson D, Jackson M, Rolph S, Walmsley J (eds) Crossing Boundaries: Change and continuity in the history of learning disability Kidderminster: BILD Publications 1-7
Bane G, Dooher M, Flaherty J, Mahon A, McDonagh P, Wolfe M, Deeley M, Minogue G, Curry A, Hopkins R, Edurne Garcia I, Donohue B, Tierney E, O'Doherty S, Shannon S (2012) 'Relationships of People with Learning Disabilities in Ireland' British journal of learning disabilities. 40 109-122
Buchanan I and Walmsley J (2006) Self Advocacy in Historical Perspective BJLD Special Issue: The history of self advocacy for people with learning difficulties: International Comparisons Vol. 34 No. 3 pp. 133 -138
Cooper, M. (1997) My life story, in D. Atkinson, M. Jackson and J. Walmsley (Eds.) Forgotten lives: Exploring the history of learning disability Kidderminster: BILD Publications
Deacon, Joey (1974). Tongue tied. Fifty years of friendship in a subnormality hospital, London: National Society for Mentally Handicapped Children
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 learning difficulties in Cumbria Disability and Society 27 1 31-49
Emerson, E. Malam, S, Davies, I., and Spencer, K. (2005). Adults with learning difficulties in England 2003/4. London: Department of Health
Grant G and Ramcharan P (2007) Valuing People and Research: The LDRI London: The Stationery Office
Michell B et al (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 40 152-161
Nind M (2014) What is Inclusive Research? London: Bloomsbury
Ollerton, Janice, and Debbie Horsfall. (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
Strnadova I, Cumming T, Knox M & Parmenter T (2014) Building an inclusive
research team. The importance of team building and skills training. Journal of applied intellectual disability research
Townson L, Sue Macauley, Elizabeth Harkness, Andy Docherty, John Dias, Eardley M & Rohhss Chapman (2007): Research project on advocacy and autism, Disability & society, 22:5, 523-536
Tuffrey-Wijne I (2013) A new model of breaking bad news to people with learning disabilities Palliative medicine 27, 1 5-12
Turk V, Leer G, Burchell S, Khattram S, Corney R and Rowlands G (2012) People with intellectual disabilities and their carers as researchers and participants in an RCT JARID 25 1-10
Walmsley J and Johnson K (2003) Inclusive research with people with learning disabilities: Past, present and futures. London: Jessica Kingsley. Publishers
Walmsley, J. and Central England People First (2014) Telling the history of self advocacy: a challenge for Inclusive Research Journal of Applied Research in Intellectual Disability 27 (1) 34-43
Welshman, J. and Walmsley, J. (Eds.) (2006) Community care in perspective: Care, control and citizenship. Houndsmill: Palgrave Macmillan
Williams, V. et al. (2010) Skills for Support: personal assistants and people with learning disabilities. British Journal of Learning Disabilities, 38(1), March 2010, pp.59-67
Jan Walmsley is Visiting Professor in the History of Learning Disabilities at The Open University specialising in Heritage Projects involving people with learning disabilities, staff and carers. Jan is a founder member of the Social History of Learning Disability Research Group http://www.open.ac.uk/health-and-social-care/research/shld/research-group.
This article originally appeared in News & Views New Year edition 2015.