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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.
This groundbreaking resource explores core issues in participatory health research (PHR) and traces its global emergence as a force for improving health and well-being, healthcare services, and quality of life. The PHR approach is defined as including community members, health practitioners, and decision-makers as co-researchers, using local knowledge to reduce disparities in care, advocate for responsive health policy, and accelerate positive change in society as a whole. The book’s first half surveys themes essential to the development of the field, including evaluating PHR projects, training professionals in conducting PHR, and the ambitious work of the International Collaboration for Participatory Health Research. International perspectives showcase the varied roles of PHR in addressing urgent local health problems in their specific public health and sociocultural contexts. Among the topics covered: Demonstrating impact in participatory health research Reviewing the effectiveness of participatory health research: challenges and possible solutions Kids in Action—participatory health research with children Participatory health research: an Indian perspective Participatory health research in Latin America: scientific production on chronic diseases Participatory health research in North America: from community engagement to evidence-informed practice Participatory Health Research benefits those teaching and learning about participatory health research at institutions of higher education and in community settings, addressing diverse fields including health promotion and disease prevention, medicine and public health, quality of life, social work, and community development.
Community-based participatory research (CBPR) emerged in response to the longstanding tradition of "top-down" research-studies in which social scientists observe social phenomena and community problems as outsiders, separate from the participants' daily lives. CBPR is more immersive, fostering partnerships between academic and community organizations that increase the value and consequence of the research for all partners. The current perspectives gleaned from this school of research have been wildly well-received, in no small part because they address the complexity of the human experience in their conclusions. HANDBOOK OF COMMUNITY-BASED PARTICIPATORY RESEARCH codifies the methods and theories of this research approach and articulates an expansive vision of health that includes gender equality, safe and adequate housing, and freedom from violence. Topic-based chapters apply the theory and methods of CBPR to real world problems affecting women, ethnic and racial minorities, and immigrant communities such as sexual violence, exposure to environmental toxins, and lack of access to preventive care as well as suggesting future directions for effective, culturally sensitive research. HANDBOOK OF COMMUNITY-BASED PARTICIPATORY RESEARCH is required reading for academics, policy makers, and students seeking meaningful social change through scholarship.
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.
This thoroughly revised and updated second edition of Methods for Community-Based Participatory Research for Health provides a step-by-step approach to the application of participatory approaches to quantitative and qualitative data collection and data analysis. With contributions from a distinguished panel of experts, this important volume shows how researchers, practitioners, and community partners can work together to establish and maintain equitable partnerships using a Community-Based Participatory Research (CBPR) approach to increase knowledge and improve the health and well-being of the communities involved. Written for students, practitioners, researchers, and community members, the book provides a comprehensive presentation of innovative partnership structures and processes, and covers the broad spectrum of methods needed to conduct CBPR in the widest range of research areas—including social determinants of health, health inequities, health promotion, community interventions, disease management, health services, and environmental health. The contributors examine effective methods used within the context of a CBPR approach including survey questionnaire, in-depth interview, focus group interview, ethnography, exposure assessment, and geographic information system mapping. In addition, each chapter describes a case study of the application of the method using a CBPR approach. The book also contains examples of concrete tools and measurement instruments that may be adapted by others involved in CBPR efforts.
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.
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.
Respect for persons, beneficence, and justice are the principles that collectively form the ethical basis of human research . These three principles find expression in Community-Based Participatory Research for Improved Mental Healthcare, or CBPR – a systematic approach for engaging specially-defined groups of people in a process of inquiry and social change. In the Community-Based Participatory Research, a panel of renowned authors provide a step-by-step approach for conducting CBPR, providing all the conceptual and methodological guidelines needed to implement this important and extremely fruitful research approach. As early career investigators use this mode of collaborative inquiry in the service of society, an exciting and entirely new capacity for ethically sound and more rigorous and consequential science can be built. An indispensable resource that will be of great interest to researchers from a wide array of disciplines, the Community-Based Participatory Research for Improved Mental Healthcare is a major addition to the literature and certain to become the gold standard reference in the field.
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