In this chapter, the focus is on doing analysis of data together; some examples of the kinds of legacies that come from being involved in research; the ways in which researchers recognise the needs of the communities in which they are involved and look to reciprocate involvement; and how to end involvement well. We provide examples of approaches to analysis where the people we spoke to discuss how to co-produce analysis, how to present the work to co-researchers to do analysis together, providing space for people to engage with the data and connect the experience of data collection with analysis. Working together on data analysis is enabled by researchers creating accessible formats, techniques and support for people with experience to contribute. We provide examples of the talking points and negotiated outcomes that happen during this process, recognising that room is needed for disagreements, that research is producing new knowledge that might not be palatable to everyone. Collaboration to complete a project includes interpreting data together, prioritising findings, report and publication production, and collaborative dissemination events and practices. Coresearchers may have had experience to draw on that relate to these activities in previous professional roles, such as public speaking, report writing or other creative skills such as poetry, theatre or visual arts. They may also be involved in campaigning and policy influencing and so have access to people and spaces that will help communicate findings to those who need to know. We revisit the value of care – to pay attention, listen carefully and respond to find an acceptable way forward. We discuss examples where the ethics of care was not the explicit framework for the research, but has been used as a reflective tool when it comes to analysis. An explicit ethics of care analytic process, Selma Sevenhuijsen’s helpful ‘Trace’ (2003) is discussed as an example of a systematic care ethics approach to the analysis of policy or text documents that seeks out the philosophical underpinnings and the implicit and explicit assumptions about care that they contain.

Part of the work of analysis and dissemination is being able to describe, interpret and translate experiences of one group to tell another audience what that is like.

In this chapter, research with care is orientated as a praxis that involves people with various perspectives and knowledges. This chapter is about getting started on a research project, how to reach a decision about what to research, who may be involved in shaping that decision, and what influence this has on the design of a research project. As discussed in Chapter 1, people who get involved in research have a connection to the topic and a story about why that topic or issue is important to them. Those connections and stories change over time and exposure to being involved in research, and being involved in research can be a conduit for an evolving understanding of ourselves. Research interactions and relationships are dynamic and learning together is both a time of personal growth and possible exposure of vulnerabilities. To research together requires relational care and the space to get to know each other, time to build trust, space to talk and explore different ideas and make all sorts of connections, sometimes entirely unrelated to the topic. Attentiveness to the reasons that people are interested in the research gives a starting point to work from to understand what is important. Starting at the point of asking what do you care about or what matters to you about this topic? provides the space for that discussion. Asking people to talk about what they care about creates an open space for meaningful exchanges, a time for people to know what others are concerned about and how that relates to them personally and to gauge similarities and differences. What people would like to see as desired change in the world enables an understanding of priorities for action, however achievable they may be through research. In the conversations with researchers we spoke to for this book, we reflected on the origins of research projects and how they started. In this chapter we draw on the conversations we had with the people we spoke to – Bea, Bunty, Ceri, Ruth, Umut and Viv – about experiences of research partnerships and how this can be achieved with care.

On research praxis

Research is praxis; a processual embodied cycle of judgement, action and reflection that constitutes experience and develops wisdom.

In Part I, we introduced the elements and phases of care and how these can be applied to research practice. These elements and phases, in our view, are always underpinned by the feminist concerns of justice and equality and are enacted in an attempt to achieve this. In research, as in other contexts, care is purposive. But justice and equality for whom, and how might those involved in research understand this? In this part of the book we explore and expand care ethics thinking and its application to research carried out with and by different groups of people whose experiences can help us better understand its significance. We do this by drawing on conversations with a diverse group of people who all have experience of care ethics in research. Whereas in Chapter 4 we structured our discussion by reference to phases of care, in this part we use the stages of research to reflect more deeply on the issues we are discussing.

An initial research idea can be a lightbulb moment or a slow- burn realisation. In the former, the switch is flicked and the issue comes into view – we recognise its importance. We also see what we do not know, what remains in the shadows and what we need to better understand. As we extend our knowledge of previous research and build our connections with those affected by the topic, the initial idea takes a firmer shape until we have a proposal we can use to secure the relevant support to get a project off the ground. In this part of the book we explore more about how these decisions are reached, who is included in generating ideas, and how these evolve and respond to different influences and perspectives. Do researchers draw on their own experiences, how do they work with people in more and less formal ways at the ideas stage and as the research develops? We ask how researchers are attentive to the people who contribute to research and how attentiveness can improve the experiences of involvement for people and the quality of the research itself.

The research we discuss here has been undertaken in different types of research partnerships or collaborations.

Up to this point we have argued that care is a motivator for research, and we have suggested that different participants in the research process are likely to care about the topic in different ways and be differently positioned in relation to it. We have argued that generating knowledge is a relational process and that the emotional dimensions of doing research are not a messy distraction, but the source of important understandings. But we have rather skirted around what we mean by ‘care-full research’ in practice. In this chapter we discuss what doing research with care means in terms of the design, conduct and use of research. We link the stages of research with the phases of care articulated by Tronto (1993) in her book Moral Boundaries and developed in her later work (2013).

To introduce this discussion, we offer an example that comes from a world that is much less familiar to us than many of the examples we have drawn on from our own experiences as researchers. As we were discussing this book and talked of the need to go beyond the human in our consideration of doing research with care in a world in which the damage done to the biosphere and the physical environment by humans has become all too obvious, we were unsure what this might mean for the type of participatory research practice that we are advocating. Our advocacy of co-production is based on our experience of researching in a health and social care context in which research has become one strategy for pursuing social justice. We felt reasonably confident about proposing what careful participatory research means in these contexts. But is it possible to imagine research practices in which different species as well as different humans might care about an issue and collaborate and research together with care for their collective benefit? We found one answer in Donna Haraway’s (2016) story of the PigeonBlog.

The ‘matter of concern’ that prompted this story was air pollution and how this might be measured and communicated to the people affected by it. This is a matter of concern not only to humans but also to the animals and plants who also have to breathe and try to live within polluted air.

We have seen that attempts to separate knowledge from values and objective stances from subjective engagement are impossible to sustain and that any ethical approach to research must consider what matters to people, who the research impacts and in what way. These arguments are not new – critical social scientists have been struggling with them for decades. But positivist assumptions endure, and simplistic linear models of impact continue to be used in assessing research value. Ethical procedures focus primarily if not exclusively on the capacity of researchers to predetermine ethical challenges and develop procedural mechanisms to specify how these will be met. Methodology texts prioritise techniques for data collection and analysis rather than focusing on the researcher as a practitioner engaged in creating and sustaining relationships capable of improving wellbeing and contributing to social justice objectives. This all means that it is still necessary to find ways of understanding what it means to recognise research as a dynamic, relational and political – as well as ethical – practice. What does researching with care actually mean in practice?

As we started working on this book we reflected on experiences that, as new researchers, had troubled us and suggested to us that we were somehow not getting it right, that we were failing in what it meant to be a good researcher. Often those troubles emerged out of insecurities and uncertainties concerning our relationships with those we were researching. Research encounters were often unpredictable and we felt unprepared to deal with the responses of those we approached to take part in our projects. And if we did in some way anticipate reluctance, anxiety or confrontation on the part of those we sought to research, it was not possible to specify in advance what would be the ‘right’ way for us as researchers to respond. Those troubles suggested we were somehow failing if we focused on the relationships generated within a research project rather than on the techniques of the particular methodology we were employing; if we mixed up emotions (ours or those of the people we were researching) with evidence, or acknowledged that our personal histories or experiences might impact our scholarship.

People who do research care about what they research. The topics they research matter to them, and how they impact on people matters too. Researchers live in relation to others in friendship groups, families, local or national communities, and through identities based in ethnicity, gender, sexuality, religion or other characteristics. They may choose to become involved in research to address the hardships or inequalities they see through personal experience, such as of racism or colonial domination; as a result of professional awareness, such as that of unequal access to health services or the impact of contemporary lifestyles on the environment; or through a political sense of injustices deriving from poverty or discrimination. Researchers may be connected to their research field in multiple ways, and the focus of their research may change over time as they start to become aware of other concerns (Letherby, 2003) and as they deepen relationships with those whose lives they research. Recognition of the positioning of researchers and their personal and political stance in relation to issues is quite common in social science circles, but it applies to researchers in all fields of enquiry. It is impossible to consider an environmental researcher who does not care about the state of the planet, or medical researchers unconcerned about finding cures or treatments for illnesses affecting people.

Researchers are social beings implicated in the world they research. In the introduction to his book Participation in Human Inquiry, Peter Reason (1994) made a similar connection to that we have been advancing between Fisher and Tronto’s inclusion of ‘repair’ in their definition of caring; the practice of research, and the importance of thinking together the human and more-than-human world:

This chapter applies ethics of care to the process of doing research. We draw on experiential knowledge to tell the stories shared with us by the people we spoke to for this book about research projects guided by, and reflected on, using the ethics of care. During research projects, unpredictable situations can arise that may require revisions to the research plan, challenge the fundamental assumptions that inform the research, or uncover more significant situations that require attention. Changes to the project may be externally influenced, for example by ethics committees or other governance groups requesting alterations to the research. More personal reactions to the research also occur, and attention to this experience influences how the research is practised, and how to care for the people involved. At each turn, a response is needed that builds trust and solidarity, and makes space for reflexivity. In the last chapter we discussed getting started on research projects and in the next chapter we discuss the later stages of research – analysis, dissemination and endings; this chapter is about refining the project, collecting data, initial reactions and observations, and working these through together.

There are two parts to this chapter. The first is about how the process of doing the research is as important as the outcomes and, indeed, itself produces what we might think of as either outcomes or legacies of the research. We discuss how the ethics of care has guided these processes of research, and the sorts of thinking used to traverse the situated complexities we are likely to encounter. The second part is about caring for the people involved, and how to engage care for people in research projects they take part in. We discuss how entanglements, or inextricable interdependencies (Kittay, 2015), produce insightful moments of knowledge, and that this is only possible when good relationships are sustained, and sometimes repaired when we work together in research projects. We reflect on what to do when things are not going well, and how to avoid relationships being jeopardised. This is not to say that people stay in research projects at all costs, but that the decisions about whether to continue or leave the research are made together with care and responsibility to each other.

This is a book about research – but it is not a book about methodology. We, Tula and Marian, are or have been researchers in academic settings who have researched with people directly affected by the topic of that research. Like Carol Gilligan, we have been concerned with questions about voice. Who gets to have a say about what is important to them? What happens when some voices are considered authoritative and others aren’t? What happens to people when they are not heard or told that they are speaking in the wrong way? What about those for whom voice is not possible? And if we, as researchers, care about such things, what are the consequences of this for the way in which we approach our research and the responsibilities we carry for making a difference?

In this book we want to talk to people who do research as all or part of their work, and to those who may be invited to take part because of their membership of a particular community, because they share an experience, or because they use specific services. These latter groups of people are sometimes called ‘experts by experience’. All those people may have an interest in research as a means to social change. So we want to consider what we research and why, and who makes those decisions. This book is about how we research, what we do to try to make a difference as a result of what we have studied, and who benefits from that. To whom are we accountable and who do we feel responsible for when we do research? This book also questions who are the ‘we’ who have appeared right at the start of our introduction. Who does social research and on what authority do they draw as they do so? How do those who do research relate to others who may be the subjects of research and whose lives may be influenced by what we do?

In this final chapter, we each personally reflect on how the ethics of care has influenced our thinking about research over our research careers. We also horizon- scan for what we think are important considerations for future ethics of care research. Throughout this book, we have drawn on the work of Gilligan (1982) to ask whose voice is present in research and to consider how the story of research is told; and we have drawn on the work of Tronto (1993, 2013) to argue for recognition of interdependencies in research and of experience as essential knowledge. Our argument is that a critical understanding of the role of care in the world means that we need to not only research the place and meaning of care in diverse contexts and situations, but that we also need to practice research with care. We research the things we care about as moral beings: it is a practice that is personal, political and intellectual. We argue for critical engagement that examines whose voice is heard in decisions about what is researched, in what way and what actions flow from this. We recognise what we have learnt from researching with users of mental health services, old people, family carers and others too often categorised as subjects of research. And we take encouragement from the work of indigenous scholars such as Linda Tuhiwai Smith (1999/2012) who has clearly stated the limitations of research that does not engage in the knowledge frameworks of indigenous people. Research has a responsibility to aid efforts of decolonisation, not add to them and to repair harms rather than reinforce experiences of being subjected to investigation. How research is framed has been a constant concern. We need to become better at avoiding deficit- based framing that is offensive to the people involved and to those they care about, and to work sensitively with the people with whom we engage in research.

Our purpose is not to propose a blueprint, but based on our own experiences and those shared with us by the people we spoke to for Part II of this book, we suggest it is helpful to ask key questions about how to approach the research you are about to do and what to do when unexpected situations arise.

As I write this I am 65 years old. I am retired, but retain an honorary title reflecting seniority in academic life. I am in receipt of a state and occupational pension and pay income tax on the latter. My health is generally good and I live in a part of the country where as a woman I might expect to live another 22 years. If I need social care services, in the current system, I would have to pay for these. I have no children, my parents both died many years ago, but I do have other close family members who are intensive users of health and social care services. I voted Remain in the EU Referendum and have always voted Labour. I first encountered one of the other authors of Whose Government Is It?, David Blunkett, many years ago when I was a shop steward in Sheffield City Council and he was a local councillor.

My life as an older woman in these respects is very different from that of many others in old age. Difference and inequality over a life course impact on the experience of old age, and old age itself is a period of change over perhaps three decades. As at any other age, to assume that being old alone defines people's socioeconomic circumstances, including their identities as ‘economically active’ or not, their political views, their health status or personal circumstances, is both simplistic and unhelpful. Intersectionality reflects the lived reality not only of the way gender and ethnicity intersect, but also how differences such as age, disability, positioning in relation to care, constitute conflicting dimensions of advantage and disadvantage. But in spite of the differences between older people, existentially, politically and interpersonally, age does matter.

Age impacts on perspective – ‘looking forward’ to the future has different connotations at ages 20 and 70. While being old is not the same as being ill, health problems do increase for many people as they age. Age is important in the nature and significance of different interpersonal relationships. It affects how we are seen by others, not least whether we are valued or regarded as a burden. Unlike many dimensions of difference, to other older people is to other our future selves. We will, if we survive, all grow old.