Participatory Research with people with high support needs Seminar 3 University of Southampton 28th November

Summary of presentations
Nicola Grove Nicola explored how techniques of story- telling can be used to help people be included in research. Nicola argued that the experiences of people with high support needs have often been difficult, and their history is a one hard one to tell and share. Nicola asked: how are research and stories the same? Nicola said that research is often described as a journey, with questions you want to ask: what’s happening? Where? When? How? Why? There are research themes, and research helps us to look more deeply and to see things in a different way. Stories also involve a journey and a set of questions such as: Who’s in the story? When? Why? How? Stories have different genres and different themes. Stories are about understanding what happens to you. So, we begin to see that research and stories have quite a lot in common. Crucially, both stories and research involve a question, and then an insight. Nicola then moved on to the subject of theory. Although theory is a word that puts some people off, Nicola argued that it can be thought of in simpler terms: I.e. an idea which helps you think about problems; offers an explanation for why something happens; and suggests what will happen next. Initially, Nicola found it difficult to get her story-telling group to tell stories. But then she realized it was because she was using the wrong theory. For example, lots of people think that stories are only for children and that stories are ultimately about books and helping people to learn to write. The popular story model that is seen in schools is that stories emanate from one person, and are ‘received’ by others.

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But a different theory says that stories don’t have to be about books, and can involve many people co-constructing stories together. This theory of stories immediately makes it easy to envisage how people with high support needs can be involved in creating and sharing stories. This is a theory of ‘story sharing’ that says stories are a social activity, and everyone has something to contribute. Nicola said that story-sharing is about: - telling stories together - using any and every skill - focusing on meaning and feelings - active listening Stories can also be a way to ‘speaking truth to power’. Stories have the capacity to help make real changes. Nicola has learned through her story-sharing work that it’s important to recognize that people can’t do everything, but they can do something. Likewise in research, we need to look and listen to find out how people can authentically contribute. But co-constructing stories/research does have implications for whose story it is. QUESTIONS AND COMMENTS FROM THE FLOOR: How do you marry ideas about story-telling as an inclusive research approach with funders’ desire for hard evidence and robust data? Nicola says it partly about having a strong theory which underpins and legitimizes the approach. But also, it’s about playing a game that involves dressing up the approach in complex intellectual language, such as ‘narrativisation’. Debby Watson Debby posed the question: Including children with high support needs: How can this be done realistically and ethically? Debby recalled that when parents are first asked to describe their children, they tend to begin with details of their child’s medical condition. But when Debby asks about ‘playfulness’, parents open up to talk about lots of other things. Debby presented a mind map that one parent created showing just how many professionals are involved in their child’s care. This helped Debby to remember that their participation in the research had to be considered in the

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wider context of their very busy lives. Having said that, parents were pleased to be involved in the research, and viewed Debby as different to other professionals. Debby reminded us that in the context of undertaking research with children who have very profound disabilities, it’s important to think about what you think you see, but continually reflect upon what might actually be happening. Debby also argued that the issue of consent is complex and ongoing. In the context of Debby’s research it mostly involves looking for adverse reactions; and lots of checking with other people who know the child well. Debby spoke about three projects involving children with high support needs: STUDY 1: Was about multi-agency working for children with complex healthcare needs. The team wanted to include children themselves, but had to think about how they did this. The project aimed to find out about quality of life, using images to help gauge children’s views. They found out that the children really didn’t like a number of everyday medical interventions, such as needles and nurses who were a bit rough. Parents weren’t always aware of this. STUDY 2: Participation in Education In this project children were involved in designing the questions. They come up with questions that Debby hadn’t thought of, and which generated some really interesting data, such as ‘would you like to choose when you come out of your wheelchair’? These were very good questions. Debby learned to be very flexible and open to the reference group’s suggestions. STUDY 3: Passport to play This group of children have very profound disabilities and aren’t able to be involved in design of the research of the same way. But Debby has included a reference group of young disabled people who are helping to steer it. This project involves lots of observation; Debby felt that realistically, observation was the only method that was available to her. Debby argued that various things influence which methods will work best with particular children. You need to think about issues such as: - participants - ethics - practical issues - research design and topic - background knowledge QUESTIONS AND COMMENTS FROM THE FLOOR: Who were the reference group for study 3?

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The reference group couldn’t represent the children, because their needs were so high. But the children could relate and had insight, because they had all been at school with profoundly disabled children. Debby found it was helpful (and ethical) to work with a particular group across more than one project. How difficult is it to get ethical consent? Does the difficulty of getting it put people off doing research with people with high support needs? Debby’s experience has been quite positive, and because she doesn’t approach participants through health professionals, she has been able to get her projects through the university ethics committee.

Andy Minnion and Ajay Choksi Andy and Ajay said that we all like telling stories, and pictures are great for helping us to tell stories. Increasingly we have these pictures on our mobile devices. Ajay has his own website and we watched his wiki which conveys key information about Ajay’s life, what he likes, and his identity. Andy argued that this approach of recording stories can also be used in research, and that the process of doing this is as important as the outcomes. Reflecting on the work at the Rix Centre, Andy said that people use multimedia advocacy for one-to-one interactions, but also to share stories with a wider group of people. Andy and Ajay then described a recent project in depth, involving sensory objects at Speke Hall. The aim of the project is to ‘create a series of interactive, multisensory objects that replicate or respond to artworks or other objects of cultural significance in national collections. This is being done by employing people with learning disabilities as participant researchers, who are generating and designing these art objects, so that they cater for a wide and yet targeted range of needs’. The methods include: A sound story of a walk through Speke Hall. Lots of touching, smelling and tasting. Box making

Andy and Ajay described the research process as being like story creation: - Choosing the tools (e.g. particular cameras for particular individuals, such as Patrick). - Armed with the right tools, the group visited Speke Hall, and chose what to record/photograph. This is the collection of data phase. Patrick’s key worker said that Patrick was very clear about what he wanted to photograph. - Then there is a process of reviewing, remembering and sharing.

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These images/data are then organized in a wiki. And text, audio etc is added, increasing levels of critical reflection. Eventually the group whittles it down to some key themes. They then move on from pictures to making objects…baking; electronics made from play dough. So it moves to a sensory experience of Speke Hall. All the young people made their own website about Speke Hall. All the physical/sensory objects were in a box.

QUESTIONS AND COMMENTS FROM THE FLOOR: How do we conceptualize inclusive research? What is really important – is it the process and/or the outcome? The group discussed whether we still need to do research that produces results, i.e. findings that are relevant and of interest to those beyond the participants. And what is valued and by whom? Is it possible to have a project that does both – i.e. be outcome focused and do justice to a deeply participative project? And do we need to be more honest about this? One delegate highlighted the importance of getting the support right. How easy is it to get to grips with the technology? And can those skills be sustained beyond the life of the project? Andy said yes, but it takes time; guidance needs to be created. And sometimes this is to the detriment of getting peer reviewed articles out! Katherine Runswick-Cole and Dan Goodley Katherine spoke about a new project that had just started: Big Society? Disabled people with learning disabilities and civil society. The project sets out to explore how people with learning disabilities are envisaged as part of the Big Society. How can they contribute to the Big Society? And how are people being supported? The project will focus on: Circles of Support Real employment Self-advocacy It is a longitudinal analysis and involves lots of key partners. Katherine is a ‘researcher in residence’ in the three partner organizations. The three partners will help with study design, analysis, dissemination and impact.

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As researcher in residence, Katherine lets participants guide her next steps – e.g. meetings or events that she could attend. It has involved her just being there and getting to know people well; recognizing the importance of what people say, and ceding a certain amount of control over the research process. The project is underpinned by some key assumptions and concepts: self-advocates/people with learning disabilities have knowledge they want to share What does it mean to be human? People with learning disabilities can give us very useful insights into what it means to be human; what is means to have a good life.

The project is exploring concepts of what is means to be ‘normal’ and to want a ‘normal’ life. Some people with learning disabilities say they want to lead a normal life and yet want their differences acknowledged. How do we reconcile this? Can we reconcile people’s desire to be ‘normal’ and ‘not normal? Katherine drew our attention to this blog and emphasized that people with learning disabilities are often not viewed as being fully human, which can lead to terrible abuse and neglect. The project is grappling with some of these difficult questions. www.mydaftlife.wordpress.com QUESTIONS AND COMMENTS FROM THE FLOOR: In response to Katherine’s discussion of unconventional families (e.g. those emerging through Shared Lives, which she described as ‘dis/families’), we wondered who came up with that term. Katherine said it was the academics on the project, but acknowledged that they would need to explain and defend (and possibly drop) the term if the partners don’t agree to it. Hilra Vinha: Hilra’s presentation focused on her PhD research, which looked at young children with learning disabilities’ identities, self-perceptions, and perceptions of others. Hilra was aware that in Second Life people were creating visual profiles that were ‘normal’. Everyone looked the same. Hilra wanted to ask young people ‘who are you?’ She used images to explore how identities are shifting, not fixed, not finished. Although some young people could communicate verbally (meaning Hilra could listen to their stories), Hilra was also trying to understand the

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experiences of people who were non-verbal. So they may not be able to TELL their story, but they can SHOW their story, using the visuals. Using de-constructed cartoon images, Hilra invited the young people to construct visual profiles of themselves, choosing from body parts and facial features that were normalized, and others that were distorted or exaggerated. It was interesting to see patterns emerging, as the young people constructed themselves and their learning disabled peers, in contrast to people without learning disabilities. Children in special schools who knew their label tended to present nonnormative images, whereas children with the similar labels but in mainstream settings presented themselves and their peers with ‘normal’ features and proportions. The research made Hilra aware of how difficult it is to get your voice heard, if people don’t think you have a voice, and if they don’t think you have anything to say. Hilra recounted how one young lady was trying to talk, but support workers/teachers were continually distracting her, interrupting, throwing her off course. This young person was continually putting her self-image together NOT in tact, but the teacher kept trying to direct her to create a ‘proper’ image. In writing her thesis, Hilra accompanied the images with excerpts of things the young people had said. QUESTIONS AND COMMENTS FROM THE FLOOR: I didn’t note anything down here Sue Ledger, Sue Thorpe and Lindsay Shufflebotham This presentation focused on Sue Ledger’s PhD research on what enabled a small group of people with high support needs in London to remain local, when so many of their peers had been moved out of area. The team said that of119 people with high support needs in Kensington and Chelsea only 25 lived in borough. Sue wanted to research with the people themselves, and so this required her to be open and flexible about the best tools to facilitate this. For example, mobile interviews proved (by accident) to be a very powerful way to get people talking/recalling past events in their life story. Through the process of putting together people’s individual maps, Sue began to trace a collective local history of services, and to identify what helped to keep people local (e.g. respite services).

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What went well? Maps and mobile interviews seemed to help people share their stories. Keeping an open mind re methods and the tools that were used. Being flexible about research methods. Remembering that people really are the experts on their own lived experience.

What were the barriers to inclusion? Access Time pressures Fear of failure Worry about risk and harm Resources Researcher skills

QUESTIONS AND COMMENTS FROM THE FLOOR: What if this method takes people back to a dark and distressing place? How is this managed? Sue reflected on one participant called Anne, who had painful memories as a former resident of Normansfield hospital. Anne said she wanted to visit Normansfield (‘the dump’). Sue took the advice that people will let you know when they have had enough, and what their boundaries are. For Anne it was positive – she was glad to see that the hospital had closed, and it helped her re-connect with old friends, and they reminisced together about what a dump it was!

Reflections from the day
Process vs outcomes We had in-depth discussions about whether inclusive research with people with high support needs can do justice to both process and outcomes within the context of a specific project. Many people argued that getting the process right was crucial and that in itself led to tangible benefits (e.g. development of people’s confidence and skills; new social networks; understanding people’s capacities in new ways). But can inclusive research with people with high support needs also produce rigorous and impactful data? Some of the presentations we heard suggested this could be achieved (although by nature of the seminar series the focus of the papers tended to be more about process than outcomes). Some projects provided evidence that without the nuanced and specific processes developed in the course of an inclusive project, certain data would not have been generated, and key

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findings, patterns and themes would not have been revealed (e.g. Sue Ledger’s findings on what helped to keep people local). There was also acknowledgement that inclusive projects offer opportunities to produce important methodological findings, and to push boundaries in how we understand and undertake the research process. Perhaps we need to be better at articulating this. There was also a sense that some inclusive projects are about having fun; indeed, this might be one of the key outcomes for participants. But is this enough? Is inclusive research (inadvertently) addressing an otherwise unfulfilled gap regarding people’s opportunities for leisure and learning? Is this a valued outcome of a research project? Can having fun sit comfortably alongside other outcomes (some of which are likely to be valued more by other communities, such as the academy, funders, policy-makers etc)? Ethics Ethics featured heavily in discussions. The group pondered over what is ‘researching ethically’? : i.e. is this what is required for ethics committees, or is it about maintaining our own ethical (but subjective?) stance as researchers? Are the two mutually exclusive or can ethics committees support researchers to manage the journey of inclusive research with people with high support needs with integrity? The point was made that while the Mental Capacity Act offers opportunities to involve people in research, ironically in some instances it has made committees more risk averse and is hindering people’s inclusion. There are particular tensions concerning people’s ‘capacity to consent’. There was also acknowledgement that for inclusive research with people with high support needs to be done well, it requires the careful development of relationships and rapport (with individuals and their circle of support) and this needs to be handled carefully at the project end. Support, time, commitment The papers highlighted that inclusive research with people with high support needs requires considerable support, either from people’s families or service providers, or there needs to be sufficient capacity built into the research project. It often involves hours of observation and the ability to watch for subtle cues. This is another reason why the process of inclusive research needs to be given due attention, as this type of research cannot be rushed. It also explains in part why the research is overwhelmingly qualitative in nature, often with very small groups of participants. Impact

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We explored what implications the ‘impact’ agenda has for inclusive research with people with high support needs. In some ways this kind of research lends itself well to the impact agenda as it often has an action research edge: i.e. to make changes and transform lives. But impact can also be seen in the development of people’s skills, confidence and capacity to be involved in key decisions. On the other hand, some forms of impact that may arise from this type of work are diffuse, unpredictable, and may not be revealed for a considerable period of time. This needs to be taken into account.

The role of stories Interesting parallels were drawn between the act of story-sharing, and the act of research. A number of the papers demonstrated that supporting people to tell/share stories (through a variety of methods) was an effective means to engage people, draw out their experiences, and sometimes to decipher patterns and themes that went beyond individual life stories. We discussed whether story-sharing as an art form and research method can be married with (some) funders’ desire for ‘hard evidence’. We reflected upon whether this requires researchers to develop a discourse around storysharing that ‘intellectualizes’ it somehow, to promote its credibility as a method amongst those who may not initially see the value of this approach and may dismiss it as ‘wishy-washy’. But how can this be done in a way that is inclusive and doesn’t marginalize people with learning disabilities? Does it risk perpetuating the same old power dynamics? Inclusive research across disciplines The papers we heard were situated across a range of disciplines, from social and health sciences, to the arts. What issues does this raise for inclusive research? Where is the common ground in approaches across disciplines and where are the differences? Story-telling / story-sharing as a means to gather experiences and explore meaning is perhaps seen as a more credible approach in the arts, although Sue Ledger’s work suggests that this can also have a place in policy and practice. The papers did prompt a question about whether we can align the approaches/paradigms/outcomes of arts-based research with social policy in the context of inclusive research. Visual methods were integral to nearly all the research projects we heard about. The Sensory Objects project (Rix centre) also highlights that methods drawing on a wide range of senses (touch, taste, sight, hearing, smell) can generate rich data. How can this learning be shared / replicated across disciplines which tend to rely on more traditional methods of capturing data?

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Is there a place for these approaches in the development of policy for example? What impact might these methods have in fields such as education, health and social care, social sciences etc? Valuing and legitimizing inclusive research with people with high support needs The papers highlighted that involving people with high support needs in research isn’t just about making a difference to the lives of people with learning disabilities (although this is often an underpinning objective), but that people with learning disabilities can contribute to our understanding of key questions about being human; ethics; a good life; heritage; communities. But to involve people with high support needs requires methods that are flexible, open ended, responsive and creative. In order to be valued beyond the ‘converted’, researchers may need to find ways to legitimize their research (e.g. incorporating more theory; ‘poshing up’ the language)…but how can this be achieved in an inclusive way? Can researchers do this in ways that don’t compromise the integrity of the project?

What is different/special about inclusive research? Initially when reflecting on this question, people commented that inclusive research required things such as flexibility, trust, rapport, relationships, respect…but are these not indicators of all good research? Who are we talking about when referring to people with high support needs? There was some discrepancy, but broadly this terms seems to refer to people with complex and multiple health and social care needs; people who don’t communicate in conventional ways; and people who may have what is labeled ‘challenging behaviour’.

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