‘Not the same without us’: A Place for Inclusive Research?

By Ben Walsh

The ‘A Place at the Table’ project identified that young people (YP) with SEND currently have few opportunities to enact their legal rights when it comes to having a voice in decision-making. The project called for more research into processes for resolving disputes about SEND issues, focusing on participation and outcomes for YP. Ben Walsh explores the potential for involving YP as ‘co-researchers’ in future studies.

What is inclusive research?

Sharing power is a transformative process – this is one of the ideas that widely underpins research on participation (Seale et al, 2015). How often, though, can the research process itself be said to embrace these principles? It has been argued that if participation research is to really practice what it preaches, it should include members of the groups it is exploring as ‘co-researchers’. The involvement of co-researchers in the ‘decision-making and conduct of the research’ (Bourke, 2009, p.458) is the defining trait of ‘participatory’ or of ‘inclusive’ research. This is about doing ‘with’ rather than doing ‘for’ or ‘to’, which is also a key concept of the disability rights movement.

The goals of inclusive research

According to Nind and Vinha, 2012, inclusive research often aims to:

• give voice and build self-advocacy

• create knowledge grounded in the perspectives of the group it is about, rather than the viewpoints of others. Inclusive research reaches participants, communities and knowledge that would otherwise not be accessed. It provides a reality check and seeks to address important research questions that could not otherwise be answered as well.

• make a wider positive impact on the lives of those involved. For many co-researchers, the benefits of doing research can include making friends, learning new skills, contributing to a useful project, feeling valued and gaining confidence and experience (Nind and Vinha, 2012).

Some examples

The small number of studies in this area have shown that working with co-researchers is not only feasible, but has the potential to bring wide-ranging mutual benefits as well.

The CDC/NCB VIPER project (2010-2013) demonstrated how a group of disabled YP can assume influential research roles, with powerful results. Setting out to investigate YP’s participation in decisions about local services, the group took charge of the medium and the message: The ‘Vipers’ first received research training (where inaccessible PowerPoint presentations were banned) and prepared their own guides for conducting fieldwork. They determined the focus and led in all areas of the research process. This included the study design, interviews, analysis, dissemination of findings and development of practical resources. The Vipers stressed that a lynchpin of the project was carefully planned, responsive and continually adapting support. They expressed that they gained a great deal from being involved and many became more independent over the course of the project. The group attributed its inclusive success to the sustained, trusting relationships built-up over a long timeframe. This meant their life experiences informed and shaped the study. They asked questions and noticed nuances that would have been missed in their absence. As the Vipers put it, ‘the research would wouldn’t have been the same without us’.

A small study by Heasley (2017) on student voice in SEND review meetings recruited YP with EHC plans to help create YP-friendly materials. The presence of co-researchers also raises opportunities for innovative analysis and inclusive ways of presenting findings. In another study, the Friendship and Aphasia Project (2010-2013), adult co-researchers with communication disabilities collaborated on a ‘Forest of Friendship’, a visual mind-map based on a thematic analysis of interview data. Again, the involvement of co-researchers was considered to have led to different research questions and methods, as well as sensitive, user-focused outputs. The study also points to the personal benefits of being able to influence what one co-researcher called the ‘vision and attitude’ of the research.

Some tensions: what makes good inclusive research?

Despite their successes, inclusive studies are few and far between. This is probably due to the time demands and complexity of issues such as ethics, remuneration and power relations. It also raises the question of whether research that conforms to rigid academic standards (and criteria for funding) is at odds with research that is substantive and meaningful for those whose experience it is about (Strnadová, Johnson and Walmsley, 2018). Exploring complex and messy ideas can be hard to balance with the need to be simple and accessible, particularly in the analysis and write-up stages. There is a debate to be had about whether less inclusive research can still make an important contribution. Grant and Ramcharan (2007 p. 12) discuss the need to explore how we might assess the benefits of these different knowledge claims and ‘whether good science and good inclusive research practice can be brought together’. Can this tension be resolved by creating a rich mix of academic and co-researcher perspectives? Some have championed studies comprising ‘symmetrical dialogues’ (Pascal and Bertram, 2009 p. 259) which don’t place one set of voices above another (Nind and Vinha, 2012; Seale, 2015).

Nind and Vinha (2013 p. 8) note that ‘the practical realities involve ensuring that people who are moving to positions of partnership in research are neither over-burdened nor over-protected’. Townson et al (2004 p. 75), a research group including those with learning disabilities, describe an environment in which ‘we all work in partnership…according to people’s skills and what they want to do’. Importantly for them, to be partly included ‘also means partly rejected’ (p. 73); inclusive research sometimes strives to offer co-researchers opportunities for autonomy in all aspects of a study, without excluding them from other areas. Bradbury-Jones and Taylor (2015) further advise that academics try to ensure outputs are representative and avoid controlling what is voiced.

Nonetheless, others have questioned whether co-researchers can ever have genuine ownership of research which is inevitably initiated and managed by those in a position of power (Barnes and Warren, 1999). For Franks (2011), a truly non-hierarchical methodology remains a ‘chimera’ yet to be found. Franks proposes ‘pockets of participation’ as a pragmatic solution to maximise involvement. Here, co-researchers would take ownership of specific elements of the research process, thus becoming ‘stakeholders’ in the initiative.

Inclusive research into SEND disagreement resolution: possibilities and challenges

The ‘A Place at the Table’ project identified a need for further research into resolving complaints and disputes over SEND issues. Key questions include how to equip professionals to engage with YP and how to redesign resolution processes to make them accessible. An approach which involves YP with SEND as co-researchers could:

• be grounded in crucial insights about the wishes and concerns of YP. Research on disputes by IPSEA (2017) demonstrates the importance of YP involvement in creating resources, particularly with regard to appropriate language choices.

• help move beyond a tokenistic culture of ‘quick fix’ consultation in SEND. At the moment, big gaps occur between ‘the times that they want us’ to give a view, as one YP puts it. YP stress the importance of being told about the impact they are having. Inclusive research might set a precedent for genuine and meaningful participation.

• contribute to a culture that supports YP to ‘practise’ self-advocacy. ‘We cannot expect children and YP who are not used to being listened to, to suddenly acquire the skills and confidence to articulate their views at a point of crisis in their lives, or expect adults to listen effectively when it is not part of the normal expectation in society’ (CDC 2013 p. 37). Denying people the chance to make decisions can mean they have fewer chances to develop the abilities to do so (Lansdown, 2006). This vicious cycle was highlighted at the ‘A Place at the Table’ roundtable, when a parent spoke of two YP who were assessed as not having capacity in a SEND appeal because they didn’t have decision-making experience. The current situation was compared to expecting YP to get in the driving seat without any lessons (Doyle, 2018). As one YP from the FLARE participation group puts it, ‘Ask a young person what they think and empower them for life.’

Bringing YP on board as co-researchers can seem like an idealistic goal. Ever-present resource constraints and funding requirements pose challenges to involving YP even as traditional participants in research. Accessing, engaging and supporting those with SEND requires a tailored approach, creative adjustments and time. Formal meeting scenarios can be overwhelming and a source of anxiety, for example.

Moreover, according to research by IPSEA (2017) most YP currently rely on parents to handle decisions related to their own education. Picking up the driving analogy, parents and YP have compared seeking redress to traveling on a long road plagued with potholes and barriers to secure provision. If many YP say they don’t have the understanding, confidence and trust (IPSEA, 2017) to advocate for themselves, it is perhaps unlikely that many will feel able to participate in a research context. This may point to a greater need for inclusive research which can empower them to do so, but also serves as a reminder that YP should not be overly-pressured into making decisions. As very few YP have direct experience or familiarity with complaints, mediation or the Tribunal, we need to find out if this is an area that would be of interest to participation groups.

It is clearly about balancing the need not to make assumptions about what is possible against the need to be realistic about the potential barriers. Encouragingly though, similar barriers have occurred in other projects and have been overcome: KIDS and The Council for Disabled Children have worked with YP to co-produce some exciting and inspiring participation resources and training programmes for professionals; the FLARE Young People Group were involved in the design of a new young person’s guide to disagreement resolution. We need to be clear, though, about whether we expect YP to speak for themselves, or on behalf of larger groups based on assumptions of shared perspectives.

Finally, it is important to remember that who is not involved is as important as who is, especially when considering dispute resolution. We must consider how to go beyond including only the most accessible groups. This approach risks widening ‘the exclusionary gap’ for those who are ‘(often wrongly) deemed to be too difficult or expensive to accommodate’ (Broderick, 2017 p. 211). Those at risk of exclusion from consultation and research may have the most limited say in decisions about their own lives. Importantly, a person’s ability to participate is fluid and often dependent on the methods and approach being adopted to break down barriers. For inclusive research, Seale et al (2015) refer to the opportunities for involvement that the Mental Capacity Act may offer, and potential tensions with regard to ethics committees.

Among all these considerations, the roundtable established that relationships and trust are ‘vital elements’ for effective participation of young people with SEND (Doyle, 2018). If extending the invitation to a place at the research table, taking the time to build these foundations will be the key to success – there’s no dispute about that.

About the author:

Ben Walsh has worked in varied roles with YP with SEND and their families, including as a mediator. He has published research on YP participation and sits on the panel of assessors for the new SEND mediation standards. He is also a Trustee of a family carers charity. 

References

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Bourke, L. (2009). Reflections on doing participatory research in health: participation, method and power. International Journal of Social Research Methodology, 12(5), 457-474.

Bradbury-Jones, C., & Taylor, J. (2015). Engaging with children as co-researchers: challenges, counter-challenges and solutions. International Journal of Social Research Methodology, 18(2), 161-173.

Broderick, A. (2017). Article 7 [Children with Disabilities]. In The United Nations Convention on the Rights of Persons with Disabilities (pp. 195-212). Springer, Cham.

CDC. (2013). A literature review on the participation of disabled children and young people in decision making.

Doyle, M. (2018). Relationships, trust and learning to drive: A report on a discussion of young people’s participation in SEND dispute resolution Report on a roundtable discussion for the project A Place at the Table.

Franks, M. (2011). Pockets of participation: Revisiting Child‐Centred participation research. Children & Society, 25(1), 15-25.

Grant, G., & Ramcharan, P. (2007). Valuing people and research: The learning disability research initiative-overview report. London: Department of Health

Heasley, J. (2017). Young people’s views concerning their voice in Education, Health and Care planning meetings: A participatory Q-study (Doctoral dissertation, University of Sheffield).

Lansdown, G. (2006). International developments in children’s participation: lessons and challenges. Children, young people and social inclusion: Participation for what, 139-156.

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.

Nind, M., & Vinha, H. (2013). Practical considerations in doing research inclusively and doing it well: Lessons for inclusive researchers.

Pascal, C., & Bertram, T. (2009) Listening to young citizens: the struggle to make real a participatory paradigm in research with young children. European Early Childhood Education Research Journal, 17(2), 249-262.

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.

Strnadová, I., Johnson, K., & Walmsley, J. (2018). “… but if you’re afraid of things, how are you meant to belong?” What belonging means to people with intellectual disabilities?. Journal of Applied Research in Intellectual Disabilities.

Townson, L., et al. (2004). We are all in the same boat: doing ‘people‐led research’. British Journal of Learning Disabilities, 32(2), 72-76.