Participatory Research In Palliative Care

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.

'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 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.

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.

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.

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.

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.