201,206 research outputs found
Best practices in research methods: palliative care research in practice
No full textFrom an initial focus on the care of people in the last weeks or days of life, the principles and practice of palliative care have been increasingly recognized as beneficial for people earlier in their disease trajectory, from the point of diagnosis (Ahmedzai & Walsh, 2000; World Health Organization, 2005). Yet the reality is that the majority of patients receiving care from hospice and specialist palliative services are in the last months, weeks, or days of life (Eve, Smith, & Tebbit, 1997; Lamont & Christakis, 2002). In addition, although the relevance of palliative care to people who die from conditions other than cancer is increasingly recognized (Addington-Hall & Higginson, 2001), the majority of patients currently receiving care in most settings have cancer, with most of the remainder having AIDS or neurological conditions such as motor neurone disease. This article focuses on the challenges of working as a researcher with people with advanced, progressive disease who are coming to the end of their lives.
Our empathy with and compassion for our fellow human beings facing the end of their lives can cause us to find the idea of palliative care research rather unsettling, and to even question whether it is an appropriate pursuit. To address this satisfactorily we need, I think, a clear sense of the potential benefits of research in this area, the risks of not doing such research, and the ethical dimensions of such research
Research sensitivities to palliative care patients
No full textThis paper considers the methodological challenges of researching the health care experiences of palliative care patients and their families. Difficulties in defining a ‘palliative care patient’ are highlighted, and the question of whether there are specific ethical issues when researching palliative care explored. Methodological
issues are discussed, including the negotiation of access via health professionals, the choice of appropriate data collection methods and tools, the consequences of high attrition rates and the use of retrospective surveys of bereaved relatives. Key areas for research are identified. These include patients’ and families’ experiences
of research participation, the impact of being approached on those who decline, how the characteristics of those who participate differ from those who do not and the likely impact of this on findings. Research is also needed into patient and family motivations for participation, and whether and how these change as the disease
progresses. To ensure that the voices of palliative care patients and their families are heard by both service providers and policy-makers, research in this area needs to address the methodological challenges raised in this paper, as well as continuing to explore users’ views
The quality and adequacy of care received at home in the last 3 months of life by people who died following a stroke: a retrospective survey of surviving family and friends using the Views of Informal Carers Evaluation of Services questionnaire
No full textStroke is the third leading cause of death in the UK. Despite this, little is known about the care needs of people who die from or following a stroke. In early 2003, a total of 183 questionnaires were returned from a survey of 493 people who had registered a stroke-related death in four Primary Care Trusts, giving a response rate of 37%. This paper reports on 53 deceased from the survey who had lived at home during their last 3 months and who had been ill for more than 1 month. The data were analysed to explore the role of informal carers and the provision of community-based care in the last 3 months of life. Family and friends helped 82% of deceased with household tasks, 68% with personal care, 66% with taking medication and 54% with night-time care. By contrast, health and social services helped 30% with household tasks, 54% with personal care, 20% with taking medication and 6% with night-time care. Two-fifths (43%) of informants had to give up work or make major life changes to care for the deceased, and 26% of informants found looking after them ‘rewarding’. Half (51%) reported that help and support from health services were excellent or good compared to 38% for social services. Results from the Regional Study of Care for the Dying indicated that people who died from a stroke in 1990 and their informal carers would have benefited from increased levels of community-based care and enhanced communication with care professionals. Our data suggest that informal carers continue to provide the majority of care for those who die from stroke, despite government initiatives to improve care for stroke patients and frail elderly people. Further research is required to explore best practice and service provision in caring for this group.<br/
Editorial: Spiritual needs in health care: May be distinct from religious ones and integral to palliative care
No full textExtending palliative care to chronic conditions
No full textSince its inception in the 1960s, hospice care has been primarily focused on the care of terminally ill cancer patients. The lack of effective remedies for pain and other symptoms, poor communication with healthcare professionals, and inadequate practical and emotional support resulted in considerable distress for patients and families, and provided much of the impetus for the original development and rapid spread of what has become the hospice movement. This initial focus on cancer, together with rapid advances in science and management of pain, allowed swift progress to be made in both the science and the practice of palliative care. As the principles and practice of hospice care have been disseminated across the world, they have been adapted to fit local circumstances. In some settings there has been historically greater emphasis on, and provision for, people with conditions other than cancer, particularly in those countries where pioneers and champions of hospice care have come from backgrounds outside oncology. Nevertheless, in many settings, hospice and palliative care have been (and remain) synonymous with terminal cancer care. This situation is increasingly challenged, especially in those countries where hospice care has the longest history. In this paper, I will review the reasons for this and consider the obstacles to extending the borders of palliative care beyond cancer
After-death interviews with surrogates/bereaved family members: some issues of validity
No full textAfter-death interviews with bereaved respondents are an important tool in the repertoire of researchers evaluating the quality of end-of-life care or investigating the experiences of people at the end of life. Despite the importance of after-death interviews to our understanding of the last months of life, the validity of the information gathered has received little attention. In this article, we review some of the available information, drawing on evidence from cognitive psychology as well as from palliative care studies. Findings from cognitive psychology indicate that memory is a dynamic process, influenced by emotion state and the individual's perspective at the time of the event and at recall. Further research is therefore needed to understand better the circumstances, types of information and research questions for which bereaved relatives are valid surrogates for people who have died
The development of a questionnaire to assess the attitudes of older people to end-of-life issues (AEOLI)
No full textObjectives: To develop an end-of-life attitudes questionnaire for use in a large community-based sample of older people. Design: Nominal groups and standardization of questions. Participants: Eighteen older people, ten academics and five specialist palliative care health professionals were involved in nominal groups. Thirty older people took part in initial pilot work and a further 50 were involved in reliability testing. Results: A 27-item attitudes of older people to end-of-life issues (AEOLI) questionnaire. Discussion: In modern times, death and dying predominantly occurs among older people and yet we know very little about older people's attitudes to end-of-life care. The AEOLI questionnaire can be used in large scale surveys to elicit attitudes on end-of life issues considered important by older people and health care professionals
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