Ethics in Participatory Research for Health and Social Well-Being

Cases and Commentaries

Sarah Banks, Mary Brydon-Miller, Sarah Banks, Mary Brydon-Miller

• Publisher: Routledge
• Year: 2018
• ISBN:
  9781351605342
• Edition: 1
• Topic: Medicine
• Subtopic: Nursing

Participatory research is well-established as an approach involving people with a direct interest in, or experience of, the issue being studied in carrying out research. However, it raises unique and challenging ethical issues. Traditional concerns with respect for the rights to confidentiality, consent, privacy and protection of 'research informants' do not translate easily into participatory research. Boundaries between researchers and those researched are often blurred; research trajectories may be emergent and unpredictable; and major ethical issues revolve around partnership, power, equality and respect for diverse knowledges.

The book introduces the key ethical issues in participatory research, drawing on ethical theory and relevant literature before presenting seven substantive chapters, each on a different theme, such as power, ownership, confidentiality and boundaries. The chapters feature an introductory overview of the topic with reference to the literature, followed by four real-life case examples written by participatory researchers and short commentaries on each case. Drawn from around the world (from Denmark to Tanzania), the cases illustrate a range of ethical issues, outlining how they were handled and the reflections and feelings of the contributors.

Focusing on developing ethical awareness, confidence and courage to act in ethically challenging situations in everyday research practice, this book is an invaluable resource for all participatory researchers.

1
Ethics in Participatory Research

Sarah Banks and Mary Brydon-Miller

Introduction

This chapter introduces the topic of ethics in participatory research (PR), providing a rationale for the book and an overview of each chapter. PR involves people whose lives are the subject of study in some or all aspects of research design, process, dissemination and impact, with a focus on generating socially just change. As such, it raises distinctive ethical issues linked with collaboration; sharing power; co-ownership of data, findings and impact; attribution of authorship; changing roles and relationships; handling institutional ethical review processes; and collective organ-ising for change. In this chapter we elaborate briefly on these issues, discussing a range of different approaches to conceptualising and practising ethics in PR.

We argue that an approach to ethics that takes account of the character traits, motives and relationships of the people involved, and the particularities of the situations in which they are acting, provides a helpful framework for PR. This contrasts with abstract and principle-based approaches to ethics in research, as well as those that are regulatory and compliance-based. We explore character-and relationship-based approaches to ethics, including the ethics of care, virtue ethics, communitarian and covenantal ethics and their contribution to an ‘everyday ethics’ for PR. We discuss the nature of the 28 cases from real-life research practice that feature in the book, which are used to illustrate day-to-day ethical challenges faced by participatory researchers working in the fields of health and social well-being.

The book focuses on health and social well-being, as it was developed as a project of the International Collaboration for Participatory Health Research (ICPHR). However, ‘health and social well-being’ is broadly conceived, encompassing research involving medical interventions to more overtly radical social justice projects, which give voice to people experiencing oppression and taking action for change. Much PR, even if not carried out by people who self-identify as health or social researchers, has an impact on the health and social well-being of those who participate. Hence the book is also relevant to research that may be identified as educational participatory research, citizen science or organisational action research, for example, although we do not include examples from all these fields. It is a companion book to Participatory Research for Health and Social Well-being (Abma et al., 2019), which was co-authored by members of ICPHR and designed as an introductory text.

Rationale for the book

While PR is well-established as an approach that involves people with a direct interest in, or experience of, the issues being studied in carrying out some aspects of the research, it has until recently been a minority interest. It is now growing in popularity worldwide, particularly in the university sector, with academics and students increasingly researching in partnership with civil society organisations, often with a view to stimulating social change or ‘impact’ (changes in thinking, policy or practices attributable to the research).

However, the complexities of PR are often not fully appreciated, nor are the unique and challenging ethical issues it raises. Traditional concerns in research ethics about respect for rights to confidentiality, consent, privacy and protection of research ‘subjects’ or informants do not translate easily into PR, where boundaries between researcher and researched may be unclear, the research trajectory may be emergent and unpredictable, and major ethical issues revolve around partnership, power, equality and respect for diverse knowledges. Hence our aim in this book is to delve more deeply into the complex ethical issues that arise in the everyday practice of PR, with a view to stimulating readers’ ethical awareness, and improving their capacities for ethical reflection and dialogue.

The book was conceived as a curated collection of ethics cases. The inclusion of real-life cases from participatory researchers is designed to ground consideration of ethical issues in the contexts in which they arise. This enables us to take account of the hopes, anxieties and dilemmas experienced by those involved, as well as decisions made, actions taken and post-hoc ethical evaluations of participants and readers. However, the 28 cases do not necessarily speak for themselves, nor do they encompass the full range of ethical issues that might arise in PR. Hence there are substantive introductions to each chapter, offering an overview of one or more broad themes, before four cases are presented, written by different authors from a range of countries and contexts. Each case is followed by a reflective commentary and the chapter then closes with some final remarks regarding the issues raised throughout the chapter.

Before summarising the content of the book at the end of this chapter, we first discuss the history and nature of PR and outline the conception we are using in this book. We then discuss briefly our understanding of ‘ethics’ and the history and nature of concerns about ethics in research, before considering the distinctive ethical issues arising in PR and what kinds of theoretical and practical approaches to ethics may be useful in this context.

Participatory research

Participatory research is a collaborative effort in which people whose lives are affected by the issues being researched are partners in designing, undertaking and disseminating research to influence socially just change. The process aims to be democratic, participatory, empowering and educational. There are many variations, with different names and histories. Here we offer a very brief and partial overview of some of the varieties and their origins.

PR is often categorised as a form of action research, which can be characterised as a family of collaborative research methodologies focused on achieving positive change in communities and organisations (Reason & Bradbury, 2008). Its origins lie in a number of different social movements and practices concerned with liberatory and anti-colonial struggles, popular education and literacy, community development, and organisational change. Although the term ‘participatory research’ only came into common use from the mid-1970s, community-based participatory research practices were developing in the 1960s and early 1970s (organisation-based action research much earlier). One of the most notable and radical strands is associated with Orlando Fals Borda (1925–2008, political activist and sociologist at National University of Bogotá), who undertook what he called ‘action research’, working for social and economic change alongside people living in ‘peasant’ communities in Colombia. He is credited with popularising the term ‘participatory action research’ in the late 1970s (for details of his work, see Fals Borda, 1987, 1988, 2001; Fals Borda & Rahman, 1991). However, by then the term ‘participatory research’ was already in use, the orgins of which Budd Hall (2005) traces to Tanzania, linking to the work of Marja-Liisa Swantz, with whom he worked when undertaking community development and adult education at the University of Dar es Salaam in the early 1970s. Swantz (1974) wrote a paper about ‘participant research’ with women, while the following year Hall (1975) used the term ‘participatory research’ as ‘a descriptive term for a collection of varied approaches which shared a participatory ethos’ in a paper published in a special issue of the magazine Convergence (Hall, 2005, p. 7). The International Participatory Research Network was founded in 1976 by Hall and others, gaining inspiration and momentum from the first conference on action research held in Cartagena (Colombia) in 1977, organised by Fals Borda (Hall & Tandon, 2018). Global links began to develop from this point, linking the practice and thinking of many different movements around the world, from the work of Paulo Freire in Brazil to Rajesh Tandon in India (Freire, 1972; Tandon, 2005).

Given the ‘participatory turn’ beginning in the 1970s and growing rapidly in the 1990s in the fields of development work, popular education and liberatory movements, the time was ripe for adopting participatory approaches to research, which gained momentum as networks developed. Early accounts of PR in North America were published in the volume Voices of Change: Participatory Research in the United States and Canada (Park et al.,1993). This included descriptions of projects being carried out at the Highlander Research and Education Center in Tennessee focused on using participatory methods and adult education to address problems in the Appalachian region of the American South (Gaventa, 1993; Horton, 1993; Merrifield, 1993) and a discussion of feminist participatory research by Patricia Maguire (1987). Alongside feminist PR, there was also a growing awareness of the potential of PR in Indigenous communities in the global North, including Australia and New Zealand (e.g. Smith, 1999), and the need for a high degree of critical awareness and humility amongst non-Indigenous researchers working with First Nations people, as exemplified in Cases 4.3 and 5.2 in this book about work with the Inuit and Aamjiwnaang in Canada.

Already this brief account of the origins of PR demonstrates how different terms are used for similar practices, depending upon the traditions and contexts in which they developed. PR has always had a close relationship with community development and activism, often practised in international development contexts where particular approaches have developed, including participatory rural appraisal (PRA, later Participatory Reflection and Action), linked with the influential work of Robert Chambers (1994), and participatory learning and action (PLA). The term ‘community-based research’ (CBR) is used widely in North America, particularly Canada, while ‘community-based participatory research’ (CBPR) has come to be used largely in North America to refer to participatory health research (Coughlin et al., 2017; Wallerstein et al., 2017). In the UK, Banks et al. (2013) use the term CBPR more literally to encompass any type of research (not just health-related research) that is based in communities of place, identity or interest and engages community members as co-researchers in some way. The International Collaboration for Participatory Health Research (ICPHR, founded in 2009) uses the term ‘participatory health research’ rather than CBPR (International Collaboration for Participatory Health Research [ICPHR], 2013).

Our conception of PR is of research that is community-based (its rationale and key stakeholders lie in communities of place, interest or identity rather than in large institutions such as universities or hospitals) and value-based (it enacts principles of mutual respect, collaboration, equality and social justice, for example). We draw on Durham University’s Centre for Social Justice and Community Action (CSJCA) ethical principles for CBPR, reproduced later in this chapter in Table 1.2, using the term ‘CBPR’ literally to mean PR that is community based (Centre for Social Justice and Community Action & National Coordinating Centre for Public Engagement, 2012). We also draw on ICPHR’s first position paper outlining key characteristics of ‘participatory health research’, which are applicable to all PR, including that it is locally situated, collectively owned, and promotes critical reflexivity (ICPHR, 2013).

However, despite the fine rhetoric of social justice in academic texts and practice manifestos, it is important to stress that the extent to which PR adopts genuine power-sharing models or seeks to challenge radically the structures that embed poverty and inequality in societies varies enormously. It can be used as a tool to reach and control marginalised people and communities as much as for the ‘powering of knowledge from the margins’ to transform their lives and livelihoods (Thomas and Nararayan, 2015, p. 3). The current popularity of community–university research partnerships, which in some areas are becoming relatively ‘mainstream’ and institutionalised, brings with it the benefits of opening up universities and promoting ‘knowledge democracy’, alongside the dangers of co-option and control (Bivens, Haffenden and Hall, 2015).

The role of ‘the community’ in participatory research

Since ‘community’ is a focus of attention in PR, and is also a contested concept, we will say a few words here about ‘community’, whilst also drawing readers’ attention to Chapter 4 of this book, which critically explores community rights, conflict and democratic representation. While there are numerous characterisations of ‘community’, a useful generic description is: ‘collectivities of people with some but not necessarily all characteristics in common’ (Banks et al., 2019). While ‘community’ has connotations of homogeneity and closeness, the idea that the collectivity may share only certain characteristics in common allows for elements of heterogeneity and diversity. Communities may comprise people living in the same geographical area (e.g. an urban neighbourhood, or a village), people with common interests (e.g. a hockey team, birdwatchers) or identities (e.g. Hindu religion, or lesbian women). ‘Community’ falls into the category of what Plant describes as an ‘essentially contested concept’ (Plant, 1974), with multiple descriptive meanings as listed above and an evaluative meaning, generally with positive connotations linked to care and cohesion (Banks & Butcher, 2013; Crow & Allan, 1994; Somerville, 2016). While this makes it a problematic concept, it continues to be deployed in everyday life and public policy to promote social inclusion and stress commonality. Yet the sense of identity and being cared about that is felt by members of communities can also amount to pressure to conform, and relies on members differentiating themselves from others outsid...

Table of contents

• Cover
• Title
• Copyright
• TABLE OF CONTENTS
• List of tables
• Notes on contributors
• Preface and acknowledgements
• 1 Ethics in participatory research
• 2 Partnership, collaboration and power
• 3 Blurring the boundaries between researcher and researched, academic and activist
• 4 Community rights, conflict and democrzatic representation
• 5 Co-ownership, dissemination and impact
• 6 Anonymity, privacy and confidentiality
• 7 Institutional ethical review processezs
• 8 Social action for social change
• Index