Palliative medicine
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Palliative medicine · Oct 2012
Randomized Controlled TrialPain and distress in advanced dementia: choosing the right tools for the job.
There is a concern that pain is under-recognized in dementia. However, there may be other causes of distress. We wished to evaluate the utility of a distress tool and a pain tool. ⋯ Both tools are useful. However, the pain tool also picks up distress, which is not caused by pain. It could potentially lead to false ascriptions of pain. The distress tool picks up a broader array of signs, which may be useful both in practice and in research.
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Palliative medicine · Oct 2012
Assessing quality of care for the dying: the development and initial validation of a postal self-completion questionnaire for bereaved relatives.
Evaluating 'quality of care for the dying' from the patients' perspective has practical and ethical difficulties: an alternative is to use bereaved relatives' views as 'proxy' measures. Currently, within the United Kingdom, there is no validated instrument which specifically examines quality of care in the last days of life or the impact of the Liverpool Care Pathway (LCP) for the Dying Patient. ⋯ ECHO-D is the first instrument specifically to assess 'quality of care for the dying', focussing on the last days of life, and has direct links with the use of the LCP Programme.
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Palliative medicine · Oct 2012
Barriers and facilitators to the receipt of palliative care for people with dementia: the views of medical and nursing staff.
The global prevalence of dementia is set to rise to almost 65 million people by 2030, providing policy makers and practitioners with significant challenges, not least within the realms of end-of-life care. The international literature would suggest that people with dementia may benefit from palliative forms of care, but evidence indicates that many fail to access such provision at the end of life. The role of the health care team is pivotal if people with dementia are to benefit from the transition to palliative care. ⋯ Four themes were identified: Making the transition; Competence challenged; 'The long view' and Working together. Whilst there exists good practice in this area, the barriers to timely and appropriate transitions to palliative care for people with dementia and their families continue to exist. The paper concludes with recommendations for policy and practice development.
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Palliative medicine · Oct 2012
A cohort study of children and young people with progressive neuromuscular disorders: clinical and demographic profiles and changing patterns of referral for palliative care.
Progressive neuromuscular disease in children is life limiting and these children and young people would benefit from palliative care services, but data are limited on the number and demography of these children. ⋯ The profile of children with progressive neuromuscular conditions who were referred for palliative care has changed over the last 20 years, with a different spectrum of underlying diagnoses and a greater number from a South Asian background. The higher than expected proportion of children living in areas of high deprivation has been consistent over time.
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Palliative medicine · Oct 2012
Can assessing caregiver needs and activating community networks improve caregiver-defined outcomes? A single-blind, quasi-experimental pilot study: community facilitator pilot.
Although the unit of care in palliative care is defined as the patient and their family, there are few rigorous studies on how to improve support for family and friends as they take on the role of caregiver for someone at the end of life. ⋯ There were objective measures of improved support within the intervention group over time for caregivers through the active engagement of the community network facilitator. This pilot supports the case for an adequately powered study.