1,721,254 research outputs found
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
Extending 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
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
Attitudes of Danish doctors and nurses to palliative and terminal care
No full textBackground: The WHO definitions of palliative care have been adopted in Denmark and implemented in The National Guidelines from 1999, but service developments have been very slow and not according to the recommendations. Attitudes to palliative care of Danish doctors and nurses may in part account for this. Objective: To assess the attitudes to issues related to palliative care of doctors and nurses in a Danish county hospital and the related primary care services.Design: Cross-sectional survey using a mailed, self-administered questionnaire answered anonymously.Participants: Nurses and doctors employed in a county hospital in Denmark, homecare nurses and general practitioners from the related primary care services. Outcome measures: The responses from the groups were compared by X2 statistics (where ordinal variables with X2 for trend). Data were analysed using SPSS 10.0. Results: 347 responded, response rate 76%. Eighty-one per cent of all respondents were currently caring for terminally ill patient(s), 94% had done so within the last six months. Hospital doctors see more terminally ill patients than GPs (P = 0.002). Comparison of doctors (both hospital and GPs) with nurses showed that nurses were more likely to definitely agree that palliative/terminal care was a rewarding part of their work (61% 'definitely agree' versus 30%), and they were less likely to prefer to leave care of these patients to others (4% 'definitely/probably agree' versus 9%). Nurses reflected more on existential matters (80% 'definitely/probably agree' versus 63%) and were more likely to agree that dealing with a dying patient made them aware of their own feelings regarding death (97% 'definitely/probably agree' versus 80%). Only 7% of all respondents reported 'being an active member of a religious community'. Ninety-two per cent of all respondents agreed that doctors play a key role in reducing the suffering of dying patients, but 59% of nurses versus 9% of doctors 'definitely/probably agree' that 'it is primarily the task of nurses to deal with patients reactions to death'. There were significant differences between hospital doctors and GPs, with the former less likely to agree that palliative and terminal illness is rewarding, more likely to leave care of dying patients to others, and more likely to 'probably' or 'definitely agree' that it is more satisfying to work with patients who will improve. Home care nurses reflected more on existential matters than their hospital colleagues, and were more likely to 'definitely agree' that palliative/terminal care is rewarding. Differences between groups seemed to be due to profession (doctor versus nurse) and setting (hospital versus community) rather than age or gender. Conclusion: These findings suggest that in Denmark nurses demonstrate more positive attitudes to the care of palliative/terminally ill patients than doctors, and that attitudes amongst doctors and nurses working in the community are more positive than those of the colleagues in hospitals. There is currently little education in the principles and practice of palliative care in Denmark. These findings will inform the development of appropriate palliative care education for doctors and nurses working both in the hospital and in the community in Denmark. They also raise the possibility that part of the inertia in the development of palliative care in Denmark is related to the lack of education and, in particular, to the need of support for doctors and nurses providing terminal care so they are enabled to be more reflective on the care they currently provide. There is evidence that education in palliative care can change health professionals' attitudes to palliative and terminal care, and this now needs to be investigated in Denmark
Identifying how people with MNDIALS talk about living through their illness: A narrative study to enhance self-management
No full textBackground: There is little known about how people live
or manage coping with motor neurone disease or
amyotrophic lateral sclerosis, (MND/ALS) which is
essential knowledge for developing approaches to enhance
quality of life and patient self-management. This study
used narrative research methods to explore how patients
with MND/ALS talk about living and coping with this
disease. Narrative research, whereby people who are ill are
encouraged to tell their stories, can elucidate issues
previously overlooked in biomedical approaches to disease
management. One approach to classifying illness narratives
involves identification of storylines or ‘plots’. This
paper presents four ‘plots’ which were identified and
developed into a framework of narrative styles which may
be helpful for patients, family care-givers and professionals
to enhance quality of care and patient self-management.Objectives: 1) To explore patient experiences of living
and coping through MND/ALS; 2) to ascertain how
people talk about living and coping with MND/ALSMethods: The study involved a series of longitudinal
narrative case studies. Thirteen patients were recruited
through purposeful sampling. Six rounds of in-depth narrative interviews were conducted every three months
over an eighteen month period. A narrative thematic
framework approach (1,2) was developed which takes into
account an entire story and focuses on its form to identify
narrative themes. This approach is responsive to emergent
issues allowing construction and revision of the themes
and the developing framework as new and emergent
themes are noted and added. Results are summarised in a
final thematic frame and also presented with illustrative
quotations relating to the themes.Results: A framework of four narrative styles was
identified and the styles named fracturing, sustaining,
preserving and enduring. Some participants presented a
kaleidoscopic interchange of the four narrative styles
whereas others presented a consistent style throughout
their experience.Discussion: Identification of patient narrative styles offers
unique insight into patients’ approaches and responses to
coping with MND/ALS. It is suggested that knowledge of
the narrative styles may be helpful for patients, family caregivers
and professionals as a framework for understanding
patient approaches to living with a life-limiting illness
which may enhance patient self-management and quality
of life
Who should measure Quality of Life?
No full textOne of the reasons behind the rapid development of quality of life measures in health care has been the growing recognition of the importance of understanding the impact of healthcare interventions on patients' lives rather than just on their bodies. This is particularly important for patients with chronic, disabling, or life threatening diseases who live without the expectation of cure and have conditions that are likely to have an impact on their physical, psychological, and social wellbeing.Health professionals frequently make quality of life judgments when making decisions about the care of disabled patients,1 and the professional's view on expected quality of life is often the key factor in determining whether effective treatment for a life threatening condition will be given or withdrawn. Professionals' perceptions may, however, be at odds with those held by their patients. It is therefore important to ask patients to assess their own quality of life using one of a growing number of reliable and valid measures.Choosing an appropriate measure and using it in clinical practice can be problematic. Deciding to use a measure, however, presupposes that patients are able to assess their own quality of life and complete a quality of life measure. Some patients—and in some conditions many patients—are unable to do this because of cognitive impairments, communication deficits, severe distress caused by their symptoms, or because the quality of life measure is too burdensome physically or emotionally. These may be precisely the patients for whom information on quality of life is most needed to inform clinical decision making. Rather than lose all information on that patient, someone else (a family member or health professional) may be asked to act as a proxy or surrogate.In this paper the use of proxies to measure quality of life is addressed. We consider the advantages and disadvantages of using proxies to rate quality of life, debate the reasons why a proxy's view and a patient's view may differ, and suggest directions for future research
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