Towards equal and active citizenship: pushing the boundaries of

participatory research with people with learning disabilities:
Key Findings of ESRC funded seminar series (ES/JO2175X/2)

July 2015

Jane Seale, Graduate School of Education, St Luke's Campus, University of Exeter, Heavitree Road, Exeter, EX1 2LU
j.seale@exeter.ac.uk.
Melanie Nind, School of Education, University of Southampton, Highfield, Southampton, SO17 1BJ,
M.A.Nind@soton.ac.uk
Liz Tilley, Faculty of Health & Social Care, , Open University, Walton Hall, Milton Keynes, MK7 6AA,
elizabeth.tilley@open.ac.uk
Rohhss Chapman, Carlisle People First Research Team Ltd, Cambeck Bridge Cottage, Brampton, Cumbria, CA8 2AU,
rohhss@yahoo.com

1. Overview
This seminar series focused on participatory research with people with learning disabilities and in particular the
challenges related to two complex but relatively under-explored issues in participatory research: involving people with
learning disabilities in data analysis, and involving people with learning disabilities who have high support needs. The
aims were to critically examine the unacknowledged or underexplored tensions and challenges to what might be
considered full or genuine participation by people with learning disabilities in research, and to stimulate innovative
developments in methods. Five seminars have taken place. The first (University of Plymouth 10th January 2013),
scoped the boundaries of participatory research and did much of the synthesis work. This was important for
establishing a common platform from which to move forward. The second (University of Manchester 23rd April 2013),
showcased and debated participatory data analysis methods. The third (University of Southampton 28th November
2013) showcased and debated methods for involving people with high support needs in research. These second and
third seminars had a more practical focus and highlighted how challenges were being met. The fourth seminar (The
Open University, Milton Keyes April 10th 2014) brought together researchers who work inclusively with children,
older adults with dementia and carers of people with mental health problems to discuss the extent to which their
research had methods, issues and challenges in common with research with people with learning disabilities. The final
seminar (The Open University, London, November 11th 2014) drew together all the issues raised and offered
participants the opportunity to share their own inclusive research ideas and problem-solve around issues and
challenges. Interest in the seminars has been high with 203 participants in total and 49 bursaries awarded, allowing for
those with poor financial resources or high support costs to be involved. The intended mix of people with learning
disabilities, their support workers, PhD students, early career researchers and experienced researchers and coresearchers coming together to present and contribute to discussions was realised. The disciplines of health and social
care, social policy, education, social work, disability studies and psychology have also been represented.
Seminar
1. Plymouth
2. Manchester
3. Southampton
4. OU, Milton Keynes
5. OU, London

Number of participants
32
60
47
34
30

Number of bursaries awarded
8
7
9
11
14

Speakers have included:
 academics with a long track record who are well-placed to reflect on the state of the art (Profs Jan Walmsley,
Dorothy Atkinson, Gordon Grant);
 early career researchers in the thick of pushing the boundaries of participatory research in their particular domains
(Hanna Bertilsdottir, Hilra Vinha, Debby Watson, Sue Ledger, Liz Ellis);
 partnerships of academics and people with learning disabilities researching and presenting together (Manchester
Partnership Steering Group, Carlisle People First research cooperative, Val Williams and Andrew Barbour (Norah
Fry, Bristol University; Central England People First Group; Andy Minion and Ajay Choksy (The Rix Centre,
UEL)); and
 International groups (the Irish Inclusive Research Network and Gudrun Steffansdottir and team from Iceland) and
individuals (Hanna Bertilsdottir doctoral researcher from Sweden).

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2a.What has been discovered or developed through the research funded on this grant?
The discussions across our five seminars focused on three main questions:
1. Can people with learning disabilities engage in participatory data analysis with people with learning disabilities? If
so, what methods, tools and technologies can facilitate this participation? In the second seminar on participatory data
analysis all the projects that were presented used familiar qualitative methods to collect data including: videos;
interviews; focus groups and observations. The methods used to make analysis of the data collected from these
methods accessible to people with learning disabilities varied, however. Some projects used standard coding and
thematic analysis techniques, other projects used less familiar analysis methods (e.g. research circles or comic strip
conversations). The methods used however did illustrate how it is possible to push the boundaries of participatory
research with people with learning disabilities by replicating familiar processes of data analysis in challenging
contexts. What enables this to happen is the detailed attention paid to the provision of appropriate support and
structure. This can be very time consuming. Although participatory data analysis is possible, there can still be a tension
between making analysis accessible and ignoring the complexities of analysis.
2. Can people with high support needs be meaningfully included in research? If so, what innovative and flexible
methods, tools or technologies approaches can be used to enable their participation? In the third seminar, a range of
creative, sensory methods to engage people with high support needs in research were described, including: mobile
interviews, deconstructed cartoons and multimedia. These projects pushed the boundaries of participatory research
with people with learning disabilities by developing nuanced processes that fitted the context in which they were being
implemented. These processes were continually developed throughout the course of the project and sometimes led to
data that would not have otherwise been generated. According to some definitions, however, projects that involve
people with high support needs might push the boundaries of what is considered research. However, a significant
contribution that such projects can make is in the calling of these boundaries into question.
3. How might participatory research with people with learning disabilities both inform and be informed by
participatory research in other areas such as children and older people? The seminar series identified that a number
of issues that are transferable across different fields of participatory research. There was agreement that participatory
research takes a lot of time and resources but can improve the quality of research. There were also some common
principles for good practice such as: the provision of training and support for co-researchers; engaging in a rigorous
process; valuing each other and learning together. Participatory research across the different fields does face challenges
however, particularly in regards to focusing attention more on the outcomes of the research than the process. There is a
sense that participatory research, is moving into a new phase. This 'second generation' of participatory research is
growing into something weightier and more informed by critique.
2b.In what ways might our findings be taken forward or put to use by others?
We envisage that the academic community will take our findings forward with regards to continuing to scope the
boundaries and focus of 'second generation participatory research'. One key group within this community are doctoral
students who tend to be the ones who push the boundaries with regards to creative and flexible methods. This scoping
work will need to include sharing examples from the seminar series with ethics committees and funders in order to
push the boundaries of what is considered possible or desirable in research with people with learning disabilities. There
also key implications for support workers (and the services they work within) with regards to the kind of nuanced,
flexible and sometimes structured support that is required to enable people with learning disabilities to push the
boundaries of what is possible through their participation in research.
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3. How has or might our research have an impact on key stakeholders?
The ultimate goal of participatory research is to enhance the quality of life of people with learning disabilities by
producing research that informs and improves the quality of support they receive to live meaningful lives. One of the
main ways in which this research can contribute to such an impact is building the capacity of people with learning
disabilities, practitioners and academics to conduct participatory research that pushes the boundaries of what is
understood about the lives and experiences of people with learning disabilities. We began this capacity-building during
the seminar series through the active engagement of people with learning disabilities and other stakeholders. This
capacity-building work culminated in the final seminar where we invited participants to share their particular
participatory research problems with participants, and through group problem-solving begin to identify potential
solutions. As part of this final seminar we also sought ideas for how we might capacity-build beyond the seminar
series. There was strong consensus that an online co-produced participatory research 'tool-kit' that developed and
maintained practice-focused information would be a valuable resource. Seminar participants resolved to seek further
funding, for example through impact accelerator funds to explore this avenue further. A follow-up survey of
participants revealed that the seminars had an impact on those who worked within learning disability services,
revealing evidence of intention to change or develop practice:
"We have spent some considerable time discussing the methods we learned about, and thinking about the theory. It is
a complex topic and we have to take a 'one step back two steps forwards' way of working to ensure all of the group
are present in the discussion, which only reinforces the topics of discussion which we had around participatory
research time-frames needing to be much more flexible!"
"It has really been a personal encouragement and has affected the way I write."
"We work as a coop so we talked about it all and decided together to make research part of our next business plan."
4. Key Stakeholder Messages
The findings of this research project have implications for five key stakeholder groups:
1.
2.
3.
4.
5.

Participatory researchers (those with and without a learning disability)
Learning disability support services and support workers
Research Funders
Ethics Committees
Academia.

4a Research messages for Participatory Researchers

There is no one ‘right’ way to do participatory research with people with learning disabilities:
o
o
o

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The methods and approaches you take will depend on where you are researching and who you are
researching with;
Most methods used in non-participatory qualitative research can be creatively adapted to use in
participatory research;
It is important not to let the fear of failure (of not doing participatory research 100% right) prevent you
from trying to engage in participatory research;

People with learning disabilities can meaningfully engage in all aspects of research including data analysis, but
this depends on them receiving the right kind of support, which may include an element of capacity-building;

Participatory research is not just about making a difference to the lives of people with learning disabilities,
people with learning disabilities who engage in research can contribute to our understanding of key issues that
affect everyone, for example about what it means to be human, and what constitutes a good life;

People with learning disabilities need to find creative ways of involving academic researchers in their research.
In other words they and others should not assume that the only academics can and should initiate participatory
research;

Participatory researchers need to move on from spending a lot of time describing and justifying the process
and principles of participatory research. They need to move the field forward by focusing efforts on:
o
o
o

illuminating invisible parts of the process such as data analysis
sharing results and outcomes of participatory research
providing evidence of the ‘added-value’ of doing participatory research

Challenges and tensions exist in participatory research; participatory researchers should not ignore these.
Instead we have a key role to play in contributing to ‘second generation participatory research’ and carving out
new spaces in which these tensions can be addressed.

4b. Research messages for learning disability support services and workers

Participatory research with people with learning disabilities requires considerable support, either from people’s
families or service providers.

The provision and development of creative support structures can contribute to the development of innovative
research methods.

The nature and quality of the involvement of support workers in participatory research will depend on skilful
negotiations that are sensitive to local contexts, needs and experiences.

Support for participating in research should be part of funded support packages for people with learning
disabilities.

4c. Research messages for research funders

Research funders have a potentially key role to play in legitimizing and raising the profile of participatory
research with people with learning disabilities so that:
o
o

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Those already doing engaged in participatory research do not feel forced to abandon it due to lack of
recognition within their own workplaces and institutions.
Those not currently engaging in participatory research are encouraged to participate in capacitybuilding opportunities.

There is a perceived need within the participatory research community for a co-produced, community owned
participatory research 'tool-kit' that developed and maintained practice-focused information. Such a resource
would most likely need to be online, making it widely and freely available. Research funders have a key role
to play in contributing to the development and resourcing of such a resource.

Many participatory researchers have experienced significant difficulties in gaining ethical approval for their
research, where ethics committees are making often unfounded assumptions about the ability or inability of
people with learning disabilities to participate in research. Research funders have an important role to play in
revising or developing their ethical guidelines or codes of practice in a way that indicates that through careful
support work, ethical participatory research with people with learning disabilities (including those with high
support needs) is possible and desirable. Such guidelines might also be included in the participatory research
‘tool-kit’ mentioned in the previous recommendation.

Participatory research projects that are the most likely to obtain meaningful impactful data are those where
capacity-building for researchers with and without learning disabilities is an integral part of the research plan
and design and is adequately costed.

Participatory research lends itself well to the impact agenda as the desire to change the lives of people with
learning disabilities is central to its principles and approaches. Impact can also be seen in the development of
people’s skills, confidence and capacity to be involved in key decisions. However, some forms or impact that
may arise from this type of research are diffuse, unpredictable and may not arise for a considerable period of
time. This needs to be taken into account by funders when judging what research to commission and when
judging the quality of research that has taken place.

4d. Research messages for ethics committees

While the Mental Capacity Act offers opportunities for people with learning disabilities to participate in
research, the risk averseness of ethics committees has hindered their inclusion in research. With the right kind
of support people with learning disabilities can make informed decisions about their participation in research.

Concerns over potential risk and harm is not a reason to withhold ethical approval from participatory research
projects. It is a reason however for ethics committees to encourage researchers to invest time and effort in
capacity-building activities and identifying the right kind and level of support required to enable the
participation of people with learning disabilities in research.

4e. Research messages for Academia

Many people with learning disabilities have poor experiences of being ‘researched’ by university academics;
which can result in them avoiding future contact with university academics. It is therefore important,
irrespective of whether the research is participatory in nature, for university academics to invest time in
building rapport and trust with people with learning disabilities.

People with learning disabilities experience difficulties accessing the academic world in order to identify and
engage with academic researchers. Academics therefore need to develop ‘accessible’ pathways into academia.
This may be resourced through institutional impact funds.

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Many academic researchers devalue participatory research based on the assumption that it is ‘soft’, easy or less
rigorous than other forms of research. This need not be the case- good participatory research has its own
quality standards.

5. Main publications
Seale, J., Chapman, R., Nind, M & Tilley, L (2015) Negotiating a third space for participatory research with people
with learning disabilities: An examination of boundaries and spatial practices. The European Journal of Social
Science Research. Accepted subject to minor amendments.
Seale, J., Nind,. M., Tilley, L & Chapman, R (2015) Developing innovative methods for involving people with high
support needs in research: implications for support workers. Learning Disabilities Today. In press
Nind, M., Chapman, R., Seale, J & Tilley, L (2015).The conundrum of training and capacity building for people with
learning disabilities doing research. Journal of Research in Intellectual Disabilities. In press.
Seale, Jane, Nind, Melanie and Parsons, Sarah (2014) Editorial. Inclusive research in education: contributions to
method and debate. [in special issue: Understandings and Enactments of Inclusive Research: Progress and Sticking
Points in Developing Participatory and Emancipatory Research in the Field of Education ] International Journal of
Research and Method in Education, 37, (4) (doi:10.1080/1743727X.2014.935272).
Tilley, Liz and Chapman, Rohhss (2014). Who owns inclusive research? In: NCRM Research Methods Festival 2014,
8th - 10th July 2014, St. Catherine's College, Oxford. Available from: http://eprints.ncrm.ac.uk/3544/
Nind, Melanie and Vinha, Hilra (2013) Practical considerations in doing research inclusively and doing it well:
Lessons for inclusive researchers. NCRM Working Paper. NCRM. Available from: http://eprints.ncrm.ac.uk/3187/
6. Engagement activities
A core element of our engagement activities has been the use of social media, using our Project Blog
(http://participat.blogspot.co.uk/) and twitter feed #inclusive research. The project blog contains links to all the seminar
presentations (via Slideshare). One presentation by Carlisle People First on different approaches to analysis was in the
top 5% of most viewed slides on slideshare in 2014. Since the blog was set up (2013) to the current time (June 2015)
the pages, presentations and summaries have been viewed a total of 6840 times (an increase of 1030 since 20th
February 2015). The blog also contains links to accessible seminar summaries (via Scribd):
Seale, J., Chapman, R., Nind, M & Tilley, L (2014) Exploring issues of transfer: seminar summary. Available from:
https://www.scribd.com/doc/230616861/Issues-of-Transfer-in-participatory-research
Seale, J., Chapman, R., Nind, M & Tilley, L (2013) Summary of seminar on doing participatory research with people
with high support needs. Available from: https://www.scribd.com/doc/205351013/Summary-of-seminar-on-doingparticipatory-research-with-people-with-high-support-needs
Seale, J., Chapman, R., Nind, M & Tilley, L (2013) Summary of seminar on participatory data analysis. Available
from: https://www.scribd.com/doc/186016152/Pushing-the-Boundaries-Seminar-2-Notes
Seale, J., Chapman, R., Nind, M & Tilley, L (2013) Notes on Seminar 1: Scoping the boundaries of participatory
research. Available from: https://www.scribd.com/doc/185994206/Pushing-the-Boundaries-of-Participatory-ResearchSeminar-1

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