Participatory Research in Palliative Care discusses participatory research methods within the discipline of palliative care. Providing an overview of the action research methods, it uses exemplars from studies within palliative care, as well as discusses the prominent issues currently faced in this methodology from a global perspective.

Participatory research is a relatively new method of researching practice especially within palliative care. It differs from other methodologies in that there is an expectation of action within the research process. The values that underpin participatory research are collaboration, empowerment, and reflection. In the current climate of collaboration and working with people in healthcare, participatory research methods are gaining increasing interest when there is a desire to bring about change. Organisational change is becoming an important focus as we look at ways of not only reducing costs but at the same time improving quality of care. While palliative care puts the patient and family at the centre, Participatory Research in Palliative Care discusses a new research methodology that puts practitioners at the heart of the research process as collaborators who work together with researchers to resolve problems in practice. Divided into three sections, it provides theoretical groundings of action research, a greater focus on exemplars from studies within palliative care, and discusses prominent issues when using such a methodology. All three sections are illustrated by an action research study undertaken by the author within a palliative care setting. Participatory Research in Palliative Care is written by international, multi-disciplinary authors who explore a collaborative approach to embark on research. It will appeal to health and social care professionals, academics undertaking research within palliative care, and the management of organisations where people with end of life care needs are cared for, including long-term care homes.

Cancer on the Margins presents the findings of the Ontario Breast Cancer Community Research Iniative, an organization created to investigate the experiences of women with breast cancer from marginalized and underrepresented groups. The authors examine the psychosocial needs of women living with breast cancer, while investigating differences in treatment, care, and survivorship amongst Aboriginal women, women of colour, francophone women, lesbians, as well as young women, lower-income women, and women in rural areas. Structured as a guide for similar research, Cancer on the Margins provides a "start to finish" format that reveals the complexities of doing such work at each stage of research, beginning with the study design and ending with the dissemination of results. The authors address the challenges of working with and speaking for these groups of women, the tension between description and interpretation, and the challenge for qualitative work to present findings that positively influence the circumstances of research participants. With a strong commitment to social justice, this volume also shows how participatory research can lead to social change, and indicates effective ways to ensure that research not only reaches, but is also employed in, the communities it intends to serve. Bridging the gap between a wide range of audiences, this vitally important work will be of interest to health professionals, new researchers, policy makers, new researchers, and experienced investigators, as well as the public.

Focusing on population health and discussing studies using different methodologies, this title presents a synthesis and overview of relevant research and empirical data on the end of life that can bear a basis for a more systematic 'public health of the end of life'.

Palliative and end of life care are concerned with the physical, social, psychological and spiritual care of people with advanced disease. It currently has a poorly developed research base, but the need to improve this is increasingly recognised. One of the reasons for the lack of research - and the variable quality of the research that is undertaken - is the difficulty of conducting research with very ill and bereaved people. Standard and well-established research methods may need to be adapted to work in this context. This means that existing research methods textbooks may be of limited use to palliative care practitioners seeking to do research for the first time, or to more experienced researchers wanting to apply their knowledge in palliative care settings. This research methods textbook is the first to be written specifically for palliative care. It has been edited by four experienced palliative care academics with acknowledged expertise and international reputations in this field. It encompasses methods used in both clinical and health services research in palliative care, with sections on clinical, epidemiological, survey and qualitative research, as well as a section covering skills needed in any research project. Each chapter provides readers with an up to date overview of the research method in question, an understanding of its applicability to palliative care and of the particular challenges of using it in this setting. It is essential reading for all palliative care researchers.

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.

Once it was difficult to see end of life care beyond conventional medical intervention, but hospice and palliative care introduced a more holistic approach, providing quality of life for the dying and their families. This ground-breaking work takes end-of-life care beyond these palliative boundaries, describing a public health vision that involves whole communities adopting a compassionate approach to dying, death and loss. Written by a leading academic in the field of death and bereavement, this text outlines the historical, political and conceptual basis of compassionate cities, providing a community development model for end-of-life care. Moving away from infection control and health promotion Allan Kellehear invites us to think of a third wave movement of public health, joining empathy, equality and action together as practical policies. Presenting a radical new perspective to death, ageing and public health, Compassionate Cities is essential reading for academics and professionals alike.

The Textbook of Interdisciplinary Pediatric Palliative Care, by Drs. Joanne Wolfe, Pamela Hinds, and Barbara Sourkes, aims to inform interdisciplinary teams about palliative care of children with life-threatening illness. It addresses critical domains such as language and communication, symptoms and quality of life, and the spectrum of life-threatening illnesses in great depth. This comprehensive product takes a first-of-its-kind team approach to the unique needs of critically ill children. It shows how a collaborative, interdisciplinary care strategy benefits patients and their families. If you deal with the complex care of critically ill children, this reference provides a uniquely integrated perspective on complete and effective care. Respect interdisciplinary perspectives, and provide the most comprehensive care. Use an integrated approach to address the physical, psychological, social, and spiritual needs of children and their families. Understand and heed your strengths and vulnerabilities in order to provide the best care for your patients. Recognize the necessity of linking hospital-based palliative care with community resources. Implement consistent terminology for use by the entire palliative care team. Access the full text online with regular updates and supplemental text and image resources.

Death, dying, loss, and care giving are not just medical issues, but societal ones. Palliative care has become increasingly professionalised, focused around symptom science. With this emphasis on minimizing the harms of physical, psychological, and spiritual stress, there has been a loss of how cultures and communities look after their dying, with the wider social experience of death often sidelined in the professionalisation and medicalisation of care. However, the people we know and love in the places we know and love make up what matters most for those undergoing the experiences of death, loss, and care giving. Over the last 25 years the theory, practice, research evidence base, and clinical applications have developed, generating widespread adoption of the principles of public health approaches to palliative care. The essential principles of prevention, harm reduction, early intervention, and health and wellbeing promotion can be applied to the universal experience of end of life, irrespective of disease or diagnosis. Compassionate communities have become a routine part of the strategy and service development in palliative care, both within the UK and internationally. The Oxford Textbook of Public Health Palliative Care provides a reframing of palliative care, bringing together the full scope of theory, practice, and evidence into one volume. Written by international leaders in the field, it provides the first truly comprehensive and authoritative textbook on the subject that will help to further inform developments in this growing specialty.

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