Ethics In Participatory Research For Health And Social Well Being

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.

This textbook is a comprehensive guide for students interested in using participatory research to improve people’s health and well-being. It is especially designed for those working in the fields of health and social welfare who are embarking on participatory research for the first time. It covers all phases in participatory research from “getting started,” to “acting for change,” “continuing the journey” and “articulating impact.” Its unique format helps readers understand the essence of participatory research as a comprehensive approach for doing research which is underpinned by a set of fundamental values.The many real life examples of participatory research projects from around the world inspire readers to find creative ways to manage their own research while opening up new horizons in their work.

Peer research is increasingly used in international academic, policy and practice environments. It engages members of a group or social network as trusted members of a research team working in communities and settings they are familiar with. Critics, however, point to methodological concerns with peer research. These include the extent to which peer researchers genuinely represent the populations under study; data confidentiality; the emotional burden of enquiring into sensitive issues peers may experience in their own lives; and the reliability and credibility of data collected by people who do not have academic training. The book seeks to counter the marginalisation of research experience and skills derived from close relationships with people and communities, while reflecting critically on the strengths and limitations of peer research. Chapters by a wide range of international contributors illustrate the potential of peer research to facilitate an in-depth understanding of health and social development issues and enhance policy and practice. This interdisciplinary book provides students and professionals working in health, social science and development studies with a thorough grounding in this new style of research. It will appeal to those interested in research and evaluation; sexual health and public health; mental health, disability and social care; gender and sexuality; conservation and environmental management; migration and citizenship studies; humanitarian issues; and international development.

Health Promotion Ethics: A Framework for Social Justice critically considers the ethical dimensions of promoting health with individuals and communities, encouraging a nuanced understanding of health promotion in the context of fairness, empowerment and social justice. The concept of social justice, indeed, is central. The book explores how health promotion should be considered in relation to moral, social and legal issues, from individual responsibility to government intervention, as well as the possibility that existing practice maintains rather than alleviates existing health inequalities by stigmatising certain groups. It also questions the ‘rights’ of those who promote health to use particular strategies, for example using fear to encourage behaviour change. The ethics of health promotion practice and research are considered, introducing several important debates. Case studies, international material and opportunities to reflect on practice are used throughout to bring the important issues under discussion to life, engaging both students and practitioners alike. The book provides a fascinating route to reflect on what it really means to promote health for all in a more equitable way.

Drawing on a growing consensus about the importance of community representation and participation for ethical research, community engagement has become a central component of scientific research, policy-making, ethical review, and technology design. The diversity of actors involved in large-scale global health research collaborations and the broader ‘background conditions’ of global inequality and injustice that frame the field have led some researchers, funders, and policy-makers to conclude that community engagement is nothing less than a moral imperative in global health research. Rather than taking community engagement as a given, the contributions in this edited volume highlight how processes of community engagement are shaped by particular local histories and social and political dynamics, and by the complex social relations between different actors involved in global public health research. By interrogating the everyday politics and practices of engagement across diverse contexts, the book pushes conversations around engagement and participation beyond their conventional framings. In doing so, it raises radical questions about knowledge, power, expertise, authority, representation, inclusivity, and ethics and to make recommendations for more transformative, inclusive, and meaningful community engagement. This book was originally published as a special issue of the Critical Public Health journal.

Participatory Action Learning and Action Research offers a concise yet comprehensive explanation of the theory, practice and process of this emerging paradigm, methodology and theory of learning. PALAR is a transformative, collaborative and democratic process for resolving complex problems within the context of sustainable professional, organisational and community development. The book draws on real-life examples from socially and economically challenged contexts, and features critical reflections on the strengths and challenges of this evolving methodology in relation to the increased interest in community engagement and project-based learning among institutions of higher education. Analysing theory in the context of sustainable professional, organisational and community development, this book: Provides a comprehensive, research-based manual on the use of PALAR within actual research projects. Explains a means of engaging in research that promotes the mobilisation of human potential relevant in a rapidly changing society. Addresses the challenges of doing participatory research within institutions. Provides applied, specific examples of how PALAR can be adapted for use in socially and economically challenged contexts, typical of developing economies. Offers critical reflections by researchers and community participants on the challenges and uses of PALAR. Innovative, and offering clarity on ethics and research questions, Participatory Action Learning and Action Research will be of interest to both emerging and experienced researchers looking to bring about change at a personal, professional, organisational or community level.

This SAGE Handbook presents contemporary, cutting-edge approaches to participatory research and inquiry. It has been designed for the community of researchers, professionals and activists engaged in interventions and action for social transformation, and for readers interested in understanding the state of the art in this domain. The Handbook offers an overview of different influences on participatory research, explores in detail how to address critical issues and design effective participatory research processes, and provides detailed accounts of how to use a wide range of participatory research methods. Chapters cover pioneering new participatory research techniques including methods that can be operationalised at scale, approaches to engaging the poorest and most marginalised, and ways of harnessing technologies to increase the scope of participation, amongst others. Drawing upon a wide range of disciplines, and bringing together contributing authors from across the globe, this Handbook will be of interest to an international readership from across the broad spectrum of social sciences, including social policy, development studies, geography, sociology, criminology, political science, health and social care, education, psychology, business & management. It will also be an insightful and practical resource for facilitators, community workers, and activists for social change. Part 1: Introduction Part 2: Key Influences and Foundations of Participatory Research Part 3: Critical Issues in the Practice of Participatory Research Part 4: Methods and Tools Part 4.1: Dialogic and Deliberative Processes Part 4.2: Digital Technologies in Participatory Research Part 4.3: Participatory Forms of Action Orientated Research Part 4.4: Visual and Performative Methods Part 4.5: Participatory Monitoring, Evaluation and Learning Part 4.6: Mixing and Mashing Participatory and Formal Research Part 5: Final Reflections

Community-Based Collaborative Action Research: A Nursing Approach provides a clear framework for an action research process to improve health outcomes and enact needed systems improvement. The authors bring years of experience in community-based collaborative action research (CBCAR) to demonstrate how nursing and other health care practitioners, leaders, and scholars can transform communities by identifying and addressing systemic and structural barriers to health and well-being. These communities can range from neighborhoods, practice environments, and villages to boardrooms and organizations. Ideal for novice and experienced researchers, including graduate and doctoral students involved in research initiatives and capstone projects, this rigorous text is a non-prescriptive, step-by-step guide to enacting meaningful change that emerges primarily from within the community. Rooted in social justice and advocacy and driven by theory and evidence-based practice, Community-Based Collaborative Action Research: A Nursing Approach is a unique and innovative resource.