Department of Psychiatry, University of Pittsburgh , Pittsburgh, Pennsylvania.
J Palliat Med. 2013 Sep;16(9):1008-12. doi: 10.1089/jpm.2013.9483. Epub 2013 Jul 24.
Informal care provided by family members is an essential feature of health care systems worldwide. Although caregiving often begins early in the disease process, over time informal caregivers must deal with chronic, debilitating, and life-threatening illnesses. Despite thousands of published studies on informal care, little is known about the intersection of informal caregiving and formal palliative care.
The goal of this review is to identify research priorities that would enhance our understanding of the relationship between informal caregiving and palliative care.
To better understand palliative care in the context of caregiving, we provide an overview of the nature of a caregiving career from inception to care recipient placement and death and the associated tasks, challenges, and health effects at each stage of a caregiving career. This in turn leads to key unanswered questions designed to advance research in caregiving and palliative care.
Little is known about the extent to which and how palliative care uniquely affects the caregiving experience. This suggests a need for more fine-grained prospective studies that attempt to clearly delineate the experience of caregivers during palliative and end-of-life phases, characterize the transitions into and out of these phases from both informal and formal caregiver perspectives, identify caregiver needs at each phase, and identify effects on key caregiver and patient outcomes.
Inasmuch as most caregivers must deal with chronic, debilitating, and often life-threatening conditions, it is essential that we advance a research agenda that addresses the interplay between informal care and formal palliative care.
家庭成员提供的非正式护理是全球医疗保健系统的一个重要特征。尽管护理通常在疾病早期开始，但随着时间的推移，非正式护理人员必须应对慢性、衰弱和危及生命的疾病。尽管有成千上万篇关于非正式护理的已发表研究，但对于非正式护理和姑息治疗之间的交叉点知之甚少。
本综述的目的是确定研究重点，以增强我们对非正式护理和姑息治疗之间关系的理解。
为了更好地了解护理背景下的姑息治疗，我们概述了从开始到护理接受者安置和死亡的护理生涯的性质，以及在护理生涯的每个阶段相关的任务、挑战和健康影响。这反过来又提出了一些关键的未解决问题，旨在推进护理和姑息治疗的研究。
人们对姑息治疗在多大程度上以及如何独特地影响护理体验知之甚少。这表明需要进行更多精细的前瞻性研究，试图清楚地区分姑息治疗和生命末期阶段护理人员的体验，从非正式和正式护理人员的角度描述进入和退出这些阶段的过渡，确定每个阶段的护理人员需求，并确定对关键护理人员和患者结果的影响。
鉴于大多数护理人员必须应对慢性、衰弱且常常危及生命的疾病，因此我们必须推进一项研究议程，解决非正式护理和正式姑息治疗之间的相互作用。
