1,721,275 research outputs found
Public health and epidemiological research in palliative care
No full textPalliative care has been declared an important topic for public health. In turn, concepts of public health such as health promotion are highly relevant for populations in need of palliative care. In recent decades, public health and epidemiological research methods have been applied to study the circumstances of dying, including palliative care provision, in large communities or populations. This chapter starts by outlining several characteristics that distinguish public health from clinical research in palliative care. It subsequently gives an illustrative, rather than exhaustive, overview of several different methodological approaches that have been used in public health research in palliative care, as well as their advantages and limitations. The focus is on quantitative, epidemiological methods, which reflects the current dominant approach in public health research. These include population-based survey research and specifically the mortality follow-back design, the use of death certificate data to study place of death, studies of routinely collected administrative data on the population-level, and the use of existing epidemiological monitoring tools. Finally, the chapter describes the importance and contributions of qualitative and mixed methods public health research in palliative care. It does so by describing examples of community-centered palliative care initiatives and research in less visible populations. Acknowledging that no single of these methods can answer all relevant questions about a topic, this chapter argues that it is the combination of a diverse set of research methodologies that will lead to the best possible view on and understanding of the circumstances of dying and provision of palliative care in populations
Palliative Care in Kidney Disease
No full textThis chapter first provides evidence about identifying which patients with kidney disease might need palliative or supportive care. Although care should be based on needs and not on prognosis, it is nevertheless important to consider palliative needs in the context of the number of weeks, months, or years which remain. What needs to be addressed only weeks from death is often very different - and more urgent - than what needs to be addressed if there are years ahead. For this reason, there is a comprehensive overview of evidence on survival, so that the context of care can be understood.Then a more detailed examination of how to identify and manage common symptoms is included, although details of management may vary from country to country, according to local guidelines and availability of individual medicines. Pain, constipation, breathlessness, nausea, vomiting, itch, restless legs, and fatigue are all considered. The last days of life may sometimes prove challenging in terms of symptom management, yet it is important to provide best possible care at this time, so this stage of illness is considered in further detail.Finally, team working, communication, and planning ahead - all crucial for effective and coordinated care - are then explored, to help facilitate best palliative and supportive care for this population
Mixed Method Research in Palliative Care
No full textThis chapter focuses on the use of mixed methods research designs in palliative care. Mixing methods is increasing in popularity as a research approach, but study quality can be poor. This chapter highlights key issues and resources for those interested in mixed methods research, to encourage researchers to focus on important principles and debates to inform study planning. First, the defining features of mixed methods research are explored and definitions presented. Second, the paradigm challenges of mixed methods research are discussed, with a focus on current epistemological thinking in the area. Third, the issues of design are presented. This includes consideration of the purpose of mixed methods studies, a continuum of study characteristics, and a typology of core mixed methods designs. Approaches to mixing data are given particular consideration. Barriers to high-quality mixed methods studies are presented and recommendations on mixed methods research in palliative care discussed. Throughout, contemporary examples from palliative care mixed methods research are used to illustrate key points
Ethics in palliative care research
No full textResearch in palliative care is crucial for continuously improving the evidence base of palliative care. However, palliative care research is also confronted with (both real and perceived) ethical challenges. This chapter explores the ethical challenges with a particular focus on those challenges that are particular to palliative care research. In a first part, focus lies on the important concept of (research) vulnerability as research in palliative care is often argued to include participants from a vulnerable population. It will be argued that—although important—using vulnerability as a concept comes with certain important drawbacks. In a second part, this chapter explores several ethical requirements that research should uphold in order to be ethically justified. These are (1) respect for research participants; (2) the need for independent review; (3) the requirement of social and/or scientific value; (4) issues related to informed consent; (5) challenges regarding scientific validity; (6) favorable risk-benefit ratio; and (7) fair participant selection. Each of these requirements will be discussed focusing on their relevance for palliative care research in particular. In short, doing palliative care research in the most ethical way will require continuous ethical reflection on behalf of everyone involved. This chapter aims to supply everyone with elements that can inspire and guide such a reflection
New public health approaches to end-of-life care
No full textThe palliative and end-of-life care movement worldwide has been a success story in many respects. Palliative care services exist in many countries throughout the world and are increasingly integrated into mainstream health services. Despite these achievements, palliative and end-of-life care continues to face challenges from demographic trends, changing patterns of illness, and social contexts of care, which suggest an increasing need for palliative care services and provision. Questions have been raised regarding the appropriateness of building further services, as compared with new perspectives on care, which see communities and professionals working in partnership. These perspectives are collectively known as the new public health perspective, and this chapter details the emergence of new public health perspectives in end-of-life care
New public health approaches to end-of-life care
Full text linkThe palliative and end-of-life care movement worldwide has been a success story in many respects. Palliative care services exist in many countries throughout the world and are increasingly integrated into mainstream health services. Despite these achievements, the movement continues to face challenges from demographic trends, changing patterns of illness, and social contexts of care which suggest increasing need for services. Questions have been raised regarding the appropriateness of building further services, as compared with new perspectives on care, which see communities and professionals working in partnership. These perspectives are collectively known as the new public health perspective and this chapter details the emergence of new public health perspectives in end-of-life care
Palliative care for older people with dementia in nursing homes and at home : multi-country descriptive and interventional research
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