My first experience of researching with people directly affected by the research was with people caring for a family member. Family carers had taken part in a series of consultations as part of a bigger project to develop user centred community care. I was appointed to evaluate the whole project and thought that I needed to work with carers who had taken part in consultations to see what they thought about the outcomes.
I met with two groups over a year during which time we identified criteria carers wanted to use to assess progress, and set in place systems to monitor what was happening. But during that time a lot more happened than enabling input to the detailed design of the research and hearing carers’ responses to progress – or lack of it.
Research team meetings provided a space in which people could talk about challenges and frustrations of care giving and receive a response and helpful suggestions from others who had similar experiences. Enduring relationships formed amongst some of the carers and these evolved into the establishment of a local Carers’ Association that continued to campaign for and support family carers. I continued to have contact with some members of these groups and went back to them later to do interviews that led to my book. For me, this experience enabled a much deeper insight into what caring means to people than a straight qualitative interview could offer.
That was thirty years ago. It was an experience that helped shape the way in which I went about researching in other contexts: including with people with mental health problems and older people. It is no longer unusual or innovative to research with people rather than on them.
Policy Press’s Transforming Research articles and Social Research Methods subject area illustrate the extent to which this has entered the mainstream. But this doesn’t mean we have nothing to learn about what researching well with other people involves. There are plenty of accounts of bad experiences from service users, indigenous and other marginalised people to show that just being invited to take part is not always good enough. There are examples of this in (Barnes and Cotterell, 2012). In a forthcoming book for Policy Press, Researching with Care, Tula Brannelly and I are offering a way of thinking about researching with care that draws on feminist care ethics to help us approach participatory research in ways that contribute to justice and wellbeing.
This emphasises that research is a relational practice that is often motivated by the fact that we care about things. Researchers usually want to make a positive difference from the work they do. But if those who do research do not have direct experience of the topic their relationship to this will be different from those they research. They are likely to care about it in different ways. This does not mean only those with direct experience should carry out research. Apart from the categorical problems this generates (is it ok for a man with mental health problems to research women’s experiences of using services, but not ok for me to do so, a woman who has not used services?), this denies the opportunity for developing solidarity between people with different life experiences.
Joan Tronto, probably the most influential care ethics scholar, developed her analysis of what care is to include ‘caring with’, a process that can generate solidarity between those in caring relationships and others who recognise the importance of care to collective wellbeing. Researching together builds understanding and relationships amongst people whose experiences may initially be different. Those relationships can endure and enable solidarity that crosses difference as well as amongst those with shared experiences. This was the case in that early project with carers and has been the case in subsequent projects, most recently work with older people on wellbeing (Barnes et al, 2018). In this case colleagues and I were able not only to carry out research with people in their 70s and 80s, but also to include social care practitioners in a knowledge exchange where we co-developed learning resources based on the research. And during this project conversations started to open up the shared significance of our own ageing and experiences of caring for older relatives.
But for solidarity to be generated, the relational process of doing research needs to embody what (Tronto, 1993) called the ‘integrity of care.’
Care begins with attentiveness – noticing a need. In research terms it requires us to notice things we need to better understand and to recognise that researching can help us towards such understanding. But it also requires us to be attentive to those we are asking to take part – both those we study and those we research with. How do they think about the need we have identified and how are they responding to being part of research? Disabled people and others have spoken about the damage caused by research. For some the experience of being researched has been oppressive in similar ways to the experience of oppressive policies and services. Participatory research must seek to repair this damage. Attentiveness is not a one-off noticing. In my early work I learned to attend to evidence of the troubles carers brought to meetings, and to take responsibility to enable a shared response to these before making progress on the research tasks. Doing research together can demonstrate the value of working with different knowledges and both sharing and developing different competences. Done well it can be transformative.
Care ethics offers a way of thinking and doing that starts from a recognition of our essential interdependence. Recent work has extended that to encompass relationships between people and the more than human world. In Researching with Care we go beyond boundaries that separate researchers from different disciplines, as well as boundaries that separate researchers from those they research. We believe this is necessary to better understand and act to nurture and sustain the webs of care on which we all depend.
Marian Barnes is Emeritus Professor of Social Policy, University of Brighton. She is author of many publications on care, participation, ageing and mental health, including Ethics of Care, with Tula Brannelly, Lizzie Ward and Nicki Ward, and Care in Everyday Life.
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