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Keywords:

  • Focus groups;
  • inclusive research;
  • learning disabilities;
  • participatory methods;
  • voice

Abstract

  1. Top of page
  2. Abstract
  3. Introduction: the challenge of constructing knowledge together
  4. Research design: the inclusiveness challenge
  5. Key findings: a bridge to new worlds
  6. Discussion
  7. Conclusion
  8. Acknowledgements
  9. References

Accessible summary

  • This article is about the ways people do research together.
  • We talked with people doing inclusive research about their views and experiences.
  • We found out about different ways people work together and how power is important.
  • People talked about how inclusive research can change people's lives.
  • We discuss why we think research can be performed inclusively in a variety of ways and why keeping this variety is important.

Summary

This article reports on a study of how people do research that matters to people with learning disabilities and that involves them and their views and experiences. The study was an attempt to bring together people doing inclusive research so that, collectively, we could take stock of our practices. This would add to the individual reports and reflections on approaches that are already available. In particular, we wanted to explore what quality means in inclusive research and how we might best achieve this. We used focus groups to share and generate knowledge, and we recorded, transcribed and analysed the dialogue, looking for themes and answers to core questions. We found that there are many different ways of doing research inclusively, and we propose a model to describe this. Reflecting on the findings, we argue that it is important to keep a flexible vision of inclusive research and to keep learning and talking together.


Introduction: the challenge of constructing knowledge together

  1. Top of page
  2. Abstract
  3. Introduction: the challenge of constructing knowledge together
  4. Research design: the inclusiveness challenge
  5. Key findings: a bridge to new worlds
  6. Discussion
  7. Conclusion
  8. Acknowledgements
  9. References

The involvement of people with learning disabilities in doing research is not new in concept or practice. Participatory and emancipatory research approaches have a strong history in disability studies. Walmsley & Johnson (2003) looked for a new term that would allow for the connections between them and for the reality that, for people with learning disabilities, being involved in decisions about the research and being in control can be blurred. Their term, inclusive research, described research based on the principles that research must:

  1. ‘address issues which really matter to people with learning disabilities, and which ultimately leads to improved lives for them’,
  2. ‘access and represent their views and experiences’ and
  3. reflect ‘that people with learning disabilities need to be treated with respect by the research community’ (p.16).

Already, there is a considerable literature on how such research has developed. Articles discuss and show:

  • the need for people with learning disabilities to do research (e.g. The Learning Disabilities Research Team 2006; Townson et al. 2004);
  • how it is done (e.g. Williams 1999; Abel et al. 2007; Tuffrey-Wijne & Butler 2010);
  • the challenges (e.g. Stalker 1998; McClimens 2007);
  • the findings of research conducted inclusively (e.g. the National Survey, Emerson et al. 2005);
  • how research can be communicated inclusively (e.g. Garbutt et al. 2010).

The British Journal of Learning Disabilities has gone further with a special issue of research by people with learning disabilities (volume 40, number 2) that was edited by a partnership involving people with learning disabilities.

Our research discussed here adds to the overall picture of inclusive research in a different way. It was inspired by two sets of arguments. One was Walmsley & Johnson (2003: 16) making the case that we need to take a step back and make room for ‘frank and open debate’ about the thorniest and most sensitive (often stifled) issues in inclusive research so that we can make progress. The other was Grant & Ramcharan (2007) reflecting on the state of the art of inclusive research and concluding that we needed to move into a new phase. They argue that having gained practical knowledge about inclusive research, we need to address the knowledge that inclusive research can produce, ‘what forms of partnership make inclusive research effective’ and ‘whether good science and good inclusive research practice can be brought together’ (p.12).

The aim for this research then was to bring people together who do inclusive research to debate and discuss what is important to them, what is tricky, what kinds of knowledge they generate, how partnerships work and what makes research both inclusive and good quality. In addition to producing new knowledge together in this way, we also set out to produce guidance materials and case studies – something useful from it. The research is reported in full at doingresearchinclusively.org. Here we share with the broad community of researchers in the field of learning disabilities and interested others some of the findings and the position it has led us to take. We think the article will be particularly useful for those people who work in roles that provide a bridge for people with learning disabilities into research, as we found their understandings of inclusive research to be crucial, and influential, for determining what happens.

Research design: the inclusiveness challenge

  1. Top of page
  2. Abstract
  3. Introduction: the challenge of constructing knowledge together
  4. Research design: the inclusiveness challenge
  5. Key findings: a bridge to new worlds
  6. Discussion
  7. Conclusion
  8. Acknowledgements
  9. References

We needed to create vibrant, safe spaces for the participating researchers (referred to here as participant-researchers to acknowledge their dual status) to talk openly. We were influenced by the ideas of Freire (1970) about how dialogue can help us to know what we know and know it critically and afresh – to create something new. Freire saw dialogue as creative and liberating, and we built into our research design his dimensions of:

  1. Listening – engaging with a range of researcher voices;
  2. Reflecting – thinking together about those different voices and views; and
  3. Transforming – learning from and with each other.

We wanted people traditionally with and without power to be ‘naming the world’ together and not ‘on behalf of another’ (Freire 1970: 69–70). The dialogue needed to reach across people with different kinds of experience and expertise. The argument of Gallacher & Gallagher (2008) that research expertise is never fully formed helped to remove the tyranny in our minds about who was the true expert. We therefore positioned everyone involved in the research, including ourselves, as learners.

Ethics approval was given by the University of Southampton. We started with information about the research and consent forms in plain English and later added materials that were more in keeping with the ‘easy read’ formats some participant-researchers were familiar with and wanted. Almost everyone involved elected to be named in the reporting of the research rather than have their contribution anonymised, and this has been respected.

We used a series of focus groups to create dialogue. Cambridge & McCarthy (2001) and Barr et al. (2003) found focus groups effective in enabling people with learning disabilities to contribute to research discussions, and this was a method that would be familiar to many researchers with learning disabilities. Even so, we were concerned about the political and practical challenges concerning who can speak safely with whom. Therefore, we followed the strategy of Madriz (2000) in forming focus groups that had stable membership and a shared starting point as shown in Table 1.

Table 1. Participant-researchers across the focus groups
Focus groupComposition
Researchers with learning disabilities who lead and conduct their own research (and their supporters)

17 across the study

9 of these involved in at least 3 meetings (from 3 self-advocacy groups and 1 campaign/training organisation)

Researchers with learning disabilities who lead and conduct their own research (and people supporting or researching alongside them)

19 across the study

11 of these involved in at least 2 meetings (from 4 research teams)

Researchers with and without learning disabilities who work together collaboratively

15 across the study

13 of these involved in at least 3 meetings (3 research collaborations plus individuals who had collaborated at different times)

Academic researchers gathering data from or with people with learning disabilities

11 across the study

7 of these involved in at least 3 meetings (including 2 doing PhDs)

Policy-makers and funders/commissioners of research4 participated; a further 6 were recruited but unable to take part at the last minute
Final, plenary focus30 of the 66 overall participated

Each focus group lasted around 2 h, starting with sharing experiences and leading into questions of what makes inclusive research challenging, possible and of high quality. The questioning route included the less reported areas of involving people with profound impairment/high support needs, data analysis and theorising. The dialogue was audio-recorded, and we had ‘reflective (thinking) phases’ between the ‘dialogic (talking) phases’. We made sure that ideas flowed between the focus groups so that participant-researchers would discuss ideas important to other focus groups as well as themselves. To help this process, we produced research newsletters with simple summaries and pictures. Some of the focus groups included activities to assist the talk. For example, we asked a focus group of researchers with learning disabilities to think about if inclusive research was a cake, what the ingredients might be, and we provided materials to use to focus their thinking as shown in Fig. 1 below.

image

Figure 1. Ingredients of inclusive research.

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The data produced included the following: transcripts of the focus groups, researcher reflections, field notes about the process and materials (like the inclusive cake ingredients) produced during the focus groups. These were analysed for key concepts, narratives and critical incidents. A systematic process of coding generated themes relating to the issues that were discussed, participants’ lived experiences of research and concepts of quality in inclusive research. The final focus group, when people who had met in different groups came together, was used to check back with participant-researchers that what had emerged from this process had meaning for them. It was a chance for people to lend their weight to the importance of particular themes or to challenge what they did not understand or agree with. This added to the sense of communities of participant-researchers becoming deeply involved in collaborative sense-making. Knowledge was generated together rather than extracted and, although not controlled by people with learning disabilities, the data analysis, core messages and materials produced were continuously checked with them/everyone involved.

Key findings: a bridge to new worlds

  1. Top of page
  2. Abstract
  3. Introduction: the challenge of constructing knowledge together
  4. Research design: the inclusiveness challenge
  5. Key findings: a bridge to new worlds
  6. Discussion
  7. Conclusion
  8. Acknowledgements
  9. References

We cannot cover all the findings in this article. Therefore, we focus on those that connect with the journal's aims, scope and history – that connect the views and experiences of researchers with learning disabilities with arguments about the future sustainability of inclusive research in their (and everyone's) interests. We focus on how working in partnership in research might be helpfully understood and on what we have gained from sharing in dialogue about quality in inclusive research.

Participant-researchers referred to the way they worked together as a collaboration, a team or partnership. They spoke of sharing, co-working and co-analysis. Strong collaboration was often depicted in terms of good knowledge of each other, having fun and spending time together, even being friends or a kind of family. Sometimes, things were done together and sometimes by people with the best skills. Lou reflected on how she and a nondisabled member of their co-operative worked together:

… it was done quite collaboratively as well. Rohhss and I did the funding form. I looked for who we could look [to] for partners … I did all that bit and Rohhss did all the money bit and how much things were going to cost.

During one focus group, we discussed what the different actors bring to inclusive research and a powerful image or metaphor emerged. The metaphor was of a bridge to other worlds. This conjured up the ways in which, in inclusive research, the different partners may each provide a link to new networks and a gateway to different cultural knowledge. This bridge was later created in another focus group in which one participant-researcher used the materials – cards representing ideas from another group - to physically demonstrate how people provide this bridge to new worlds for others (see Fig. 2). We borrow that metaphor in this article because the findings can be thought of in terms of bridges to an array of possibilities in inclusive research (rather than a single pathway to a fixed destination or approach).

image

Figure 2. The bridge metaphor.

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Establishing trust, being open and finding ways of working to suit everybody were important features of researching together. For some, this meant that how they responded to invitations to co-research with outside groups became critical.

For those involved in commissioning, making policy or judging research applications, looking for wholesome partnership and a shared understanding of inclusive research and shared purpose was critical. Emma, who was responsible for research for the Joseph Rowntree Foundation, explained as follows:

For me there is something there about having enough shared purposes. Because actually people might have different things that they do want to get [from the research] … but it is about having enough that is shared in terms of, yes, what you see achieving and what you focus on is something that holds everyone together. It's about being clear, everybody being clear and honest about why they are part of it.

Participant-researchers spoke of rules and evolving customs for managing power dynamics. For some, it was important that ideas came from people with learning disabilities or at least from within the group, although sometimes ideas did come from academics. Who initiates and who leads were sensitive matters, together with who is in control, makes decisions, makes the rules, asks questions, manages the project, gives information, has input into the report, writes the report and gets the credit. Some spoke of the importance of people without a label of learning disabilities sometimes staying quiet and being in the background. Those working as a research co-operative spoke of the need for equal say in group decisions:

Rohhss: those ideas they turned into rules. Ideas have to come from members of the group and there's this research cycle we go through.

Melanie: If a support worker came up with an idea, would that just not have gone anywhere?

Chloe: No, because we are a co-operative. So I could come up with an idea … and if they're interested then we chat about the idea until it makes itself into something.

There were also questions of reward and opportunity – such as who gets paid and who gets to do a PhD – and of dynamic – who includes who. Whose position and voice are privileged and who can speak for who were important, and participant-researchers were conscious of their power as researchers. Talk about power echoed earlier debates, and the overview this project provides shows that, among people pushing on with inclusive research, power dynamics issues have not gone away - they remain live and raw as the following dialogue between researchers with learning disability shows as follows:

Lisa: we are one big team so I think it is a good idea to ask the support workers how they feel

[Melanie: Very good idea. Can we do that, supporter workers? …]

Gareth: … at the end of the day it is how Lisa and Kerrie [.], it's their lives

[Melanie: yes, but they're saying what do the support workers think]

Gareth: Yes, but the thing is they're only there for support.

The processes involved in researching together were sometimes informal, including unpaid research, and sometimes formal. Formalising the process included dividing out tasks, undertaking and providing training, operating a set of rules or involving a steering/advisory group. One experienced group pieced together a picture of how they operated in a very principled way and in a pragmatic way in that every situation was unique. They spoke of taking risks, learning from mistakes, compromising, adapting, operating self-developed guidelines, but not being purist about this.

Jan: but you would say that you reject that as inclusive because it isn't [.] It didn't start with [the ideas of someone with a label of learning disabilities]

Rohhss: But we are not purist. I mean, when we say the ideas should come from people with learning disabilities, that is about our research that we do [implying she would not impose this definition on others]

….

Jan: but your views of we have to be involved from the beginning doesn't apply to the world, [it] applies to what you do

Chloe: It doesn't always apply to us either

….

Lou: [agrees]

There was much talk among researchers with learning disabilities and their supporters about the importance of talk in research collaborations:

Julie: we had the joint meeting and we talked … I went away and put it together then took it back to say have I got it right? …

Becca: This is how we do it, isn't it Michael

Michael: It is yes, yes

Becca: We go from pulling out idea and stuff …

Bill: That is a method. You're probably describing a group discussion method

Anon: I think partnership is a method

Asking for help, facilitating, enabling, making things accessible, checking things out and being honest were all highly valued features of inclusive research practice.

From a complex picture of varied ways of working together in inclusive research, we have identified a model grounded in the data as shown in Fig. 3. Formalised ways of working together and improvised (or responsive) ways are positioned at either end because of their fundamental difference (although one research team can use both approaches). Formalised ways of working are more pre-planned or rule-bound, while improvised approaches reflect how co-researching is worked out ‘in the moment’ in response to specific challenges; as one participant-researcher described ‘when I get in the field … I start adapting my methods’.

image

Figure 3. Model of working together practices in inclusive research.

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At the core of working together, and at the core of the model, are support, negotiation and interdependence. Different teams put different emphasis on these. When support is emphasised, some people are understood to work in support of others; there are experts who are decision-makers and leaders, and there are people who support them. This was Gareth's position quoted earlier, ‘they're only there for support’, endorsed by Karen in her support role, ‘It's not always easy, because I may have an opinion … but I think that ultimately we make sure the co-researchers make the decisions’. The experts may be researchers with learning disabilities or academic researchers. Those in support roles may be unsure of their right to speak for themselves and sometimes borrow the power of the person(s) they support to make their voice heard.

When negotiation is emphasised, the people working together put considerable time and energy into negotiating their processes and agreeing how to proceed. This can be as important as the research itself. The negotiation may be between people whose power and right to speak are unbalanced or on more equal terms. The power may shift around, but the outcome is a set of practices that have been worked out together. For example, Chloe explained:

We, the support workers who are involved in the research team and don't have a label of learning disability are required to hold back what we want to say until everybody else in the group have had their say, to make sure we don't take over too much, which we can do by accident sometimes, it's a difficult thing to monitor.

When interdependency is emphasised, support and negotiation are secondary to enjoying co-operation in teamwork. Levels of trust and communication are high, and the effort goes into ensuring all voices are heard and none are dominant (also Chloe's position above). People work together on problems but also share out roles and tasks according to strengths. Considerable value is placed on listening to, and learning from, each other. No one is more expert than any other to the extent that they do not need the other and this leads to strong mutual respect.

The model does not cover every way of working, but it is a tool for thinking with. It can help researchers to make better sense of the diversity in practices and to look at their own practices in a new way. By looking together at the big picture of different teams and their work, we could see that ways of working change between projects, or during the life of a project. People spoke of their practices evolving

Realising the importance of children's voice and methods for supporting that [has] driven me … pushed me towards research seeking to be much more inclusive

(Sarah)

I think I stumbled into more inclusive forms of research by making mistakes.

(Gordon)

or of experiencing critical turning points

I then got involved in the work Jan and others were doing at the OU [Open University] and realised there was a whole world of people with learning disabilities out there exploring their history and that's why I got involved in participation

(Duncan)

The findings tell of the distinctive contribution inclusive research makes, the value it adds and the benefits to the individuals involved in doing the research and to others. Often talk of the value added by inclusive research was talk of the value added by the researchers with learning disabilities: their voice, experiences, thoughts and feelings, and their cultural knowledge of things like day centres, institutions and personal assistants. Some participant-researchers felt that researchers with learning disabilities brought empathy and an ability to connect with and create a comfortable feeling for participants with learning disabilities. Some said they asked more directly relevant questions, with greater accessibility, using more effective methods to get better answers and richer data. This made the research both good quality and inclusive.

Participant-researchers argued that to address some research questions, inclusive research was a necessity – the only way to get to the data or do the research properly. Those conducting inclusive research stressed its inherent authenticity and credibility, and those funding inclusive research stressed its potential to promote inclusion and a process of social change. The benefits for the individuals involved in doing inclusive research were readily discussed: ‘making lots of friends’ (John); ‘we feel valued and they learn something about us’ (Kerrie); ‘it can lead on to other things’ (Carl); ‘connecting’ (Craig); ‘feel[ing] confident’ (anon); ‘funding to keep our organisations going’ (Catherine). The benefits for the wider population of people with learning disabilities were talked of in terms of the difference the research could and did make, such as improving lives and changing practices: ‘being involved in research I want to make a difference to people with learning disabilities everywhere’ (Tracey).

Discussion

  1. Top of page
  2. Abstract
  3. Introduction: the challenge of constructing knowledge together
  4. Research design: the inclusiveness challenge
  5. Key findings: a bridge to new worlds
  6. Discussion
  7. Conclusion
  8. Acknowledgements
  9. References

This research was manifestly rooted in dialogue as a means of understanding and transforming – reflecting and acting (Freire 1970). Across thirteen focus group encounters, there emerged many versions of how inclusive research is performed, alongside several versions of talk of how it ‘should’ be done. When participant-researchers talked in terms of ‘shoulds’, it was accessibility issues, as a symbol of power issues, that came to the fore: we should use a particular font size, type of ‘easy read’, ‘jargon-busting’ consultant and so on. Accessibility for some participant-researchers was so fundamental that it would stop them from wanting to talk about anything else, sometimes causing the dialogic process to become stuck.

Among participant-researchers for whom there was a right way of doing inclusive research, there was a sense of confidence in their own expertise that it would have been constructive to challenge. However, despite our intention that debate would not be stifled, there was limited troubling of assumptions in some focus groups. Similarly, while the dialogue exposed some of the material and circumstantial differences between participant-researchers with a label of learning disabilities and academics, appetite for discussing differences in expertise, knowledge or skill was scant; at the final validation meeting, one participant-researcher asked ‘what differences’ and another advised us to ‘stress the commonalities’. Rapport was built within the focus groups that met together over three occasions, and talk was often candid as well as good-humoured, perhaps helped by some common ground and prior knowledge of each other. Generally, though, participants were polite and respectful, aware of the sensitive ground they were treading and we sometimes found ourselves living, as much as challenging, the standing off from debate that Walmsley & Johnson (2003) highlight.

The project itself was praised and challenged. Participant-researchers commented that the focus groups were prompting rich discussion back in people's research groups, and the transcripts are replete with, for example, ‘We were reflecting on the research’ and ‘I was thinking while you were talking’. Criticisms came when our approach did not meet the approach expected by, or familiar to, participant-researchers in relation to accessibility and inclusiveness. We were challenged by one participant-researcher for not having people with learning disabilities involved at all stages and by another for not presenting materials as they would do. We sometimes silenced ourselves in not challenging back. We did not present our view that people with learning disabilities were influential if not present throughout, or defend the place for methodologists in leading research about methodology.

Regarding Walmsley & Johnson's (2003) criteria for inclusive research, we may not have addressed issues at the top of the agenda for people with learning disabilities (most of their research is about their lives, relationships, history), but inclusive research was important to everyone who participated, and clearly there were benefits accrued from the stimulating debate and social connections. We did access and represent views and experiences of people with learning disabilities and conduct the research respectfully. While the detailed analysis was conducted by ourselves outside of the focus groups, we worked hard to check back with participants the validity of our messages and the knowledge that was generated together. While trying to gain a better understanding of inclusive research, we also operated some version of it and offered it for consideration by others.

One of our overwhelming findings – the kind that steps across all the detailed coding and hits the researcher squarely between the eyes – is that we (that is, everyone involved) ask a lot of inclusive research. We ask it to be distinctive, to answer questions other research cannot answer and to obtain better data. Yet, we also ask it to sustain groups’ funds and networks, to support campaigns, to train and develop new skills, to provide bridges into other worlds and to empower and change lives. We argue that such an expansive agenda for what inclusive research is to achieve necessitates an expansive concept of how to do it and what it means to do it well.

Conclusion

  1. Top of page
  2. Abstract
  3. Introduction: the challenge of constructing knowledge together
  4. Research design: the inclusiveness challenge
  5. Key findings: a bridge to new worlds
  6. Discussion
  7. Conclusion
  8. Acknowledgements
  9. References

The research indicated that, despite the achievements of recent decades, we are still learning about inclusive research. It remains conducted in limited spheres, supported by a handful of funders, and largely published only in certain, established ways. As a community of researchers, we continue to juggle balancing principles and pragmatics. This means it must surely be too early to fix and pin it down too tightly the research approach that we call inclusive research. One danger of doing so is that the thing we intend to be inclusive becomes exclusive: special and unconnected with wider research approaches and debates.

In this study, we opened up a dialogue and we argue that this dialogue needs to remain open and with more voices involved. Pinning down criteria for the practice of inclusive research while so much is still emerging from people's efforts to break barriers and diminish inequalities could represent a new form of elitism with one way dominating over others. What has emerged from involvement in the dialogue for us is the need to avoid the label ‘inclusive research’ from becoming the new ‘normality’ within a branch of research that would consequently remain segregated from the wider research community, perpetuating what the participant-researchers have been fighting against. We conclude that an expansive vision of inclusive research is necessary for its sustainability. Our data suggest that without the diversity of practices, we could fail to do the learning about the process – and the learning from each other – needed for quality to flourish and be understood.

Cornwall & Jewkes (1995: 1668) maintain that the ‘conceptual blurring around the terms ‘participatory’, ‘participation’ and ‘participant’ creates a space for a range of applications’. Likewise, we argue that creating such spaces, with elbow room, is vital. Walmsley & Johnson (2003) intended something similar to the concept of inclusive research, although they have worried about unintended consequences since. Part-way through this study, we started to move away from talking about inclusive research and towards ‘doing research inclusively’. This, we hope, communicates scope for the multiple ways in which inclusivity might be put into action. It may be, however, that what is constraining about inclusive (or participatory, or emancipatory) research is not the conceptual naming, but the political context of a struggle for rights, voice, participation and power that is far from being consigned to history. In moving forward, rather than inventing new rules for research, it may be productive to work flexibly and reflexively with an expansive vision and various models. As Val, after many years, working on this reflects ‘there is no right way of doing it’.

Acknowledgements

  1. Top of page
  2. Abstract
  3. Introduction: the challenge of constructing knowledge together
  4. Research design: the inclusiveness challenge
  5. Key findings: a bridge to new worlds
  6. Discussion
  7. Conclusion
  8. Acknowledgements
  9. References

We are grateful to [ESRC] for funding this research, to the participant-researchers who contributed so richly and to [Helen Graham] for her work early in the study.

References

  1. Top of page
  2. Abstract
  3. Introduction: the challenge of constructing knowledge together
  4. Research design: the inclusiveness challenge
  5. Key findings: a bridge to new worlds
  6. Discussion
  7. Conclusion
  8. Acknowledgements
  9. References