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Participatory Research in Palliative Care by Katharina Heimerl Pdf
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 in Palliative Care: Actions and reflections by Jo Hockley,Katherine Froggatt,Katharina Heimerl Pdf
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.
Participatory Research in Palliative Care by J. M. Hockley Pdf
'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.
Cancer on the Margins by Judy Gould,Jennifer Nelson,Sussan Keller-Olaman Pdf
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.
Cancer on the Margins by Judy Gould,Jennifer Jill Nelson,Sue Keller-Olaman Pdf
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.
Research methods in palliative care by Julia M Addington-Hall,Eduardo Bruera,Irene J Higginson,Sheila Payne Pdf
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.
Ethics in Participatory Research for Health and Social Well-Being by Sarah Banks,Mary Brydon-Miller Pdf
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.
Patient Participation in Palliative Care by Barbara Monroe,David Oliviere Pdf
Patient participation and user involvement are central to current thinking about the effective delivery of desired healthcare outcomes. Working with the person who lies behind every patient is core to palliative care. A voice can only become significant when it is listened to and acted upon. With palliative care increasingly addressing the needs of people with a variety of conditions in a range of settings, as well as with advances in research, technology, and information, the challenge to be 'a voice for the voiceless' is greater than ever. This book addresses key aspects in the provision of patient-centred palliative care and tracks significant developments in user involvement. It sets the philosophy within the cultural, social and political context of modern healthcare, particularly addressing issues of quality, standards, education and bereavement. A key component in the delivery of high quality palliative care is the multi-professional team. Following a discussion of teamwork, five core professions present a critical analysis of their working practices. The book concludes with a commentary from a palliative care user and a bereaved carer. It is often somewhat glibly asserted that the patient is, or should be, at the centre of care. There have been few attempts to examine how to keep him or her there without professional needs and protocols crowding him or her out. This book asks how we listen and why we listen. The book focuses on the challenges of how professionals can keep the needs of the patient central in clinical care and how the patient can influence the direction of that care.
A Public Health Perspective on End of Life Care by Joachim Cohen,Luc Deliens Pdf
Worldwide, more than 50 million people die each year and it is estimated on the basis of the conditions leading to death that up to 60% of them could benefit from some form of palliative care. It is a public health challenge to ensure that these people can access good palliative or end-of-life care. Pursuing good population health essentially also implies striving for a 'good enough death' and a good quality of care at the end of life. Safeguarding a good quality of the end of life for patient populations for whom it is appropriate requires a public health approach. In most developed countries ageing populations that increasingly die from chronic diseases after a prolonged -often degenerative- dying trajectory make up the public health challenges for palliative care. The very large baby boom generation will soon reach old age and can be expected to pose strong demands regarding the circumstances and care at their end of life. Only by applying a public health approach to palliative care (instead of individual patient perspectives), can societies successfully help to organize and plan end-of-life care in accordance with these aspirations. A Public Health Perspective on End of Life Care 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'. The book focuses on population health, rather than clinical interventions or other aspects of individual health, and discusses studies using different methodologies (not only epidemiological research). The focus is on the quality of the end-of-life of populations, in particular from social sciences, environmental sciences, and humanities perspectives.
Participatory Health Research by Michael T. Wright,Krystyna Kongats Pdf
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.
Textbook of Interdisciplinary Pediatric Palliative Care by Joanne Wolfe,Pamela Hinds,Barbara Sourkes Pdf
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.
Oxford Textbook of Public Health Palliative Care by Julian Abel,Allan Kellehear Pdf
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.
The SAGE Handbook of Participatory Research and Inquiry by Danny Burns,Jo Howard,Sonia M. Ospina Pdf
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
Global Handbook of Health Promotion Research, Vol. 3 by Didier Jourdan,Louise Potvin Pdf
While research teams are producing relevant and valid knowledge for health promotion, there is not yet a structured manual and distinct field of health promotion research. This timely "state-of-the-art" handbook contributes to structuring the field of health promotion research. This collection presents introductory-level methodological solutions to the major epistemological, methodological, and ethical challenges facing health promotion research. It brings together experts from different "research traditions" that coexist in the field. The handbook covers the existing knowledge production and sharing practices to delineate the "discipline" and its agenda for future research. Ultimately, it contributes to creating a global community of health promotion researchers. This volume concerns research practices relevant to the production and sharing of knowledge about health promotion practices. It is organized as follows: Part I presents some paradigms and approaches to knowledge production relevant to health promotion research. Parts II to V describe research designs and methods that specifically address health promotion research. Part VI includes an overview of the challenges facing health promotion research and suggests ways forward. Global Handbook of Health Promotion Research, Vol. 3: Doing Health Promotion Research is a highly relevant reference tool for researchers and graduate students in health promotion, public health, education, and socio-health sciences; practitioners in health, medical, and social sectors; policy-makers; and health research administrators.
Participatory Action Research in Health Care by Tina Koch,Debbie Kralik Pdf
Participatory Action Research in Healthcare provides a guide toparticipatory action research in the community health setting. Itdraws upon the authors' experiences working, researching andengaging with people utilising collaborative, participatoryapproaches. The authors position participatory action research as avital, dynamic and relevant approach that can be engaged bypractitioners and health service providers. It is argued thatparticipating with people is the way to move forward towardsustainable services that evoke human flourishing. Participatory Action Research in Healthcare explores the key issuessurrounding participatory action research, and examines thebenefits of this approach for community development and healthpromotion. It includes detailed guidelines on data generation andanalysis.
