Palliative medicine
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Palliative medicine · Jul 2019
'It all depends!': A qualitative study of preferences for place of care and place of death in terminally ill patients and their family caregivers.
It is often suggested that terminally ill patients favour end-of-life care at home. Yet, it is unclear how these preferences are formed, if the process is similar for patients and family caregivers, and if there are discrepancies between preferences for place of care and place of death. Understanding these nuances is essential to support people in their decision-making and ultimately provide better care at the end-of-life. ⋯ These findings suggest that in many cases end-of-life decision-making does not conclude with a clear and stable choice. Understanding the reasons for the malleability of preferences and the process of how they are formed has implications for both clinicians and researchers.
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Palliative medicine · Jul 2019
Palliative care for people with dementia living at home: A systematic review of interventions.
The European Association for Palliative Care White Paper defined optimal palliative care in dementia based on evidence and expert consensus. Yet, we know little on how to achieve this for people with dementia living and dying at home. ⋯ The review highlights the paucity of high-quality dementia-specific research in this area and recommends key areas for future work, for example, the need for process evaluation to identify facilitators and barriers to implementing interventions.
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Palliative medicine · Jul 2019
The use of digital legacies with people affected by motor neurone disease for continuing bonds: An interpretative phenomenological analysis study.
Motor neurone disease is a progressive neurodegenerative disease without cure. Little is known about how young people are affected when a family member has the illness and subsequently dies, resulting in a gap in understanding of how best to support them. One psychotherapeutic approach involves creating a legacy to pass onto the young person, but little research has investigated the use of an emerging format, digital legacies, where videos document a person's life, memories and achievements. ⋯ This study expands the existing continuing bonds model of grief to include an 'autobiographical chapter', creating 'The Model of Reciprocal Bonds Formation'.
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Palliative medicine · Jul 2019
Pressure ulcers in patients receiving palliative care: A systematic review.
Pressure ulcers are associated with significant morbidity and mortality as well as high cost to the health service. Although often linked with inadequate care, in some patients, they may be unavoidable. ⋯ The prevalence of pressure ulcers is higher in patients receiving palliative care than the general population. While this should not be an excuse for poor care, it does not necessarily mean that inadequate care has been provided. Skin failure, as with other organ failures, may be an inevitable part of the dying process for some patients.
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Palliative medicine · Jul 2019
Multicenter StudyPilot testing of the first version of the European Association for Palliative Care basic dataset: A mixed methods study.
Inadequate description of palliative care cancer patients in research studies often leads to results having limited generalizability. To standardize the description of the sample, the European Association for Palliative Care basic data set was developed, with 31 core demographic and disease-related variables. ⋯ Pilot testing of the first version of the European Association for Palliative Care basic data set confirmed that patients and health care personnel understand the questions in a consistent manner and can answer within an acceptable timeframe. The pilot testing has led to improvement, and the new version is now subject to further testing.