The Spectrum of Caregiving in Palliative Care for Serious, Advanced, Rare Diseases: Key Issues and Research Directions
The Spectrum of Caregiving in Palliative Care for Serious, Advanced, Rare Diseases: Key Issues and Research Directions
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DOI：
10.1089/jpm.2015.0464
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发表时间：
2016-07-01
影响因子：
2.8
通讯作者：
Grady, Patricia A.
中科院分区：
文献类型：
--
作者：
Adams, Lynn S.;Miller, Jeri L.;Grady, Patricia A.
罕见病通常是限制生命的疾病，其中大多数需要持续的护理。在罕见病的整个发展轨迹中实现一系列姑息治疗，可以确保个性化和以护理人员为重点的方法来护理患者和家属。2015年6月，国家护理研究所（NINR），美国国立卫生研究院临终研究的牵头机构，与国家推进转化科学中心，罕见病研究办公室（ORDR）联合举办了一次跨学科研讨会，讨论成人和儿童罕见病护理和姑息治疗的独特挑战。该小组确定了目前知识方面的差距，并就缓和医疗科学的研究机会提出建议，以改善对患有严重、晚期和罕见疾病的个人及其护理人员的护理。这次会议提供了一个深入的机会，将新概念纳入对患有一系列罕见疾病的个人及其照顾者的姑息治疗和临终关怀。本报告是讲习班的摘要。
Rare diseases are often life-limiting conditions, the majority of which require constant caregiving needs. The realization of a spectrum of palliative care throughout the trajectory of rare diseases could ensure individualized and caregiver-focused approaches to the care of patients and families. In June 2015, the National Institute of Nursing Research (NINR), the lead institute at the National Institutes of Health for end-of-life research, in conjunction with the National Center for Advancing Translational Sciences, Office of Rare Diseases Research (ORDR) held an interdisciplinary workshop on the unique challenges of caregiving and palliative care in adult and pediatric rare diseases. The panel identified gaps in current knowledge, and afforded suggestions for research opportunities in palliative care science to improve the care of individuals with serious, advanced, rare diseases and their caregivers. This meeting provided an in-depth opportunity to incorporate new concepts into palliative and end-of-life care for individuals with a range of rare diseases and their caregivers. This report presents a summary of the workshop.