Participatory methodologies are frequently used in social research and have matured over the past decades. Ethical aspects of participatory research feature in retrospective accounts of partnerships that contribute to quality research, and those that were problematic to negotiate in the research partnership. Meanwhile, social researchers have shared concerns about meaningful transformations from research and the processes involved to achieve effective, responsive partnerships. As participatory methodologies have matured, so has an ethics of care. An ethics of care research manifesto provides a framework for surfacing marginalisation and the potential for transformation, considering interdependencies, and negotiating research relationships with the broader research community.
A tension exists between the human rights of mental health service users and the use of detention and compulsory treatment constituted through mental disorder legislation. Tensions centre on human and civil rights that are affected by the use of mental health legislation, and that few people win the right for release from legislative powers. This rights-based approach to justice maintains and reinforces power and powerlessness, rather than offering any real opportunities for people placed under it to challenge the morality of the decisions made about them. Despite substantial dissatisfaction with this situation from people who use services, little traction has been gained for meaningful change. The ethics of care offers an alternative paradigm to consider social justice for mental health service users by questioning equality and marginalisation. Surfacing the ‘hidden practices’ associated with mental health service provision enables an examination of the context in which people are subject to losing human rights, the need for protection and whether justice is achieved.
This chapter presents findings from a study examining how care is negotiated between people with dementia, their lay carers, and professional carers, namely community psychiatric nurses and social workers. An ethic of care framework was used to analyse care, as it can be used to examine different occupational groups and provides principles to influence good care.
What are the implications of caring about the things we research? How does that affect how we research, who we research with and what we do with our results? Proposing what Tronto has called a ‘paradigm shift’ in research thinking, this book invites researchers across disciplines and fields of study to do research that thinks and acts with care.
The authors draw on their own and others’ experiences of researching, the troubles they encounter and the opportunities generated when research is approached as a caring practice. Care ethics provides a guide from starting out, designing and conducting projects, to thinking about research legacies. It offers a way in which research can help repair harms and promote justice.
Indigenous peoples who experienced colonisation in the mid-18th and 19th centuries, are to this day, still struggling for recognition of the impacts of this colonisation on their health and wellbeing, for example for cultural knowledge and land rights. A number of threats to existence were experienced during the period of colonisation, including to the survival of the peoples themselves, and latterly to identity, language and customs. Indigenous peoples share some core aspects that are held in esteem that have helped survival, and mirror core aspects of care ethics including interdependence, the integration of care and politics. These values have aided survival and renaissance of culture and customs and are part of everyday knowledge and practices that sustain the people and environment.
This chapter discusses the origins of the authors’ commitment to caring research in experiences of conducting participatory research with users/survivors of health and social care services, and in discovering feminist care ethics. It offers a brief introduction to the ethics of care and the way in which this has been taken up by researchers working in many different contexts and disciplines who are concerned with the relationship between care and justice, and the necessity to hear different voices. This introduces the importance of thinking outside the boundaries both of disciplines and fields of study in order to encompass the interdependencies of human lives and the more-than-human world. Authors note the harms done by focusing on methodology to the exclusion of caring ethics. The chapter outlines the book structure.
The authors draw on Sayer’s arguments about the necessity of recognising ‘what matters’ to people in social science research. They develop this as a basis for thinking of different ways of caring about research, and also the necessity for thinking in different ways about emotions, knowledge and their interactions in the way in which we research. The intersections between knowledge and justice are explored through the concepts of epistemic or cognitive justice, and the impact of exclusive assumptions about authoritative knowers and dominant epistemologies discussed in the context of both colonialism and the marginalisation of specific social groups. The significance of emotions is discussed as a necessary source of insight into meanings, but also to explore how emotions can be generated through the research process for both researchers and those whose lives they study. Participatory research seeks to include different knowledges and the emotional dimension of experience, but is not always experienced positively. Collaborations between indigenous and non-indigenous researchers offer insights for those seeking to adopt care-based approaches.
Traditional approaches to research emphasise methodological questions about data collection and analysis rather than approaching research as a relational practice. This chapter starts to explore what researching with care means in practice through focusing on the different relationships it is necessary to develop and sustain when carrying out research. The authors identify troubles they have experienced as researchers that centre around relationships with those whose lives they were researching or those with whom they have carried out research. Different types of relationships are involved: with co-researchers, with commissioners or funders as well as with those being researched. The issues involved are political as well as personal and impact both what gets researched and who is involved in this. Gilligan’s foundational work on care ethics is reviewed to both highlight ways in which a lack of voice or invisibility in research can generate harms, and as a basis from which to argue the potential of care ethics in revealing the nature of those harms and offering a framework within which they might be repaired. Authors argue that ‘researching with’ has the potential to generate solidarity.
Tronto’s analysis of the phases of care and the principles associated with them offer a way of analysing different practices that can be understood as caring. Here the authors consider what attentiveness, responsibility, competence, responsiveness and solidarity mean in the context of doing research. The importance of the different perspectives from which to consider what these mean in practice is emphasised. For example, the attentiveness that is the starting point for care requires us not only to notice problems needing investigation from the perspective of service providers, but what service users identify as priorities. And this may mean being open to shifting our focus as research develops. It is important to be attentive throughout the research process in order to be able to respond to ethical dilemmas that may arise, and to recognise the importance of previously unacknowledged issues. As a research project develops responsibilities and competences can be developed and shared among those involved. Caring research requires a capacity to recognise the way people are responding to taking part, and generates the potential to build solidarities among those differently positioned in the research process. This is particularly important in generating positive legacies from research.
This and the following chapters draw on conversations with ethics of care researchers as well as the authors’ own experiences. An introduction to this part of the book introduces these researchers. Discussions are structured by the stages of research, starting with the initial phase of how we identify and frame the research we plan to do. ‘What do you care about?’ can offer a useful way in to conversations that stimulate ideas and priorities. Providing space for storytelling and careful listening is important. Conversations with other researchers revealed both personal and political motivations to research. There were examples of ways in which doing research stimulated understanding of why things mattered to people as researchers, and of care ethics helping to enable personal reflections on new experiences, including growing older. These experiential impacts have informed the way in which researchers try to care about others they research with, as well as the issues they research. The different contexts in which researchers work and the different relationships they have with the topics raise complex questions about how we achieve epistemic justice through our work.