Dilemmas and Decision Making of End-of-Life Caregivers

描述(申请人提供)：每年有数千名65岁以上的老人在家中死亡，同时接受家庭照顾者的照顾，该照顾者可能得到也可能得不到正式的医疗保健或临终关怀服务的支持。此外，还有更多的人在接受家人照顾者的密集临终关怀后在医院、疗养院或临终关怀中心去世。最近的趋势表明，随着人口老龄化，选择在家中死亡的人数将大幅增加。在一般护理，特别是临终护理方面，一个被忽视的研究领域是研究家庭照顾者的困境和影响保健结果的决策过程。这项探索性描述性研究的目的是加强对照顾者在家中提供临终关怀所遇到的困境的理论理解，影响决策的因素，以及照顾者所感知的决策过程与卫生保健结果的关系。具体目标是1)描述照顾者在家中为年迈的家庭成员提供临终关怀时遇到的困境的类型；2)描述这些困境如何与决策过程及其结果相关；3)确定个人内部、人际、跨个人和社会结构性因素如何影响照顾者的决策：4)产生一个扎根的理论来解释决策过程与卫生保健结果的关系。日期将从为65岁或65岁以上的个人提供居家临终关怀并参加社区丧亲小组的家庭照顾者中抽样。从这项调查中获得的基于理论的知识将为设计干预措施提供必要的信息，这些干预措施可以在家庭照顾者临终关怀的背景下提高个人的卫生保健结果。

DESCRIPTION (provided by applicant): Every year thousands of individuals over the age of 65 die at home while receiving care from a family caregiver who may or may not be supported by formal health care or hospice services. In addition, many more die in a hospital, nursing home or hospice after having first received intensive end-of-life care from their family caregivers. Recent trends suggest that the numbers of individuals who choose to die at home will increase dramatically as the population ages. A neglected area of research in caregiving in general and end-of-life caregiving in particular is the study of the family caregiver dilemmas and decision-making processes as they influence health care outcomes. The purpose of this exploratory descriptive study is to enhance theoretical understanding of the dilemmas encountered by caregivers providing end-of-life care at home, the factors that influence decision making, and the relationship of decision making processes to health care outcomes, as perceived by the caregiver. The specific aims are to 1) Describe the types of dilemmas encountered by caregivers as they provide end-of-life care to aging family members at home; 2) Describe how these dilemmas related to decision making processes and their outcomes; 3) Identify how intrapersonal, interpersonal, transpersonal, and social structural factors influence caregivers' decision making: 4) generate a grounded theory to explain the relationship of decision making processes to health care outcomes. Date will be sampled from family caregivers who provided in-home end-of-life care to individuals 65 years or older and who attended community-based bereavement groups. The theory-based knowledge derived from this investigation will provide essential information for designing interventions that can lead to enhance health care outcomes of individuals in the context of end-of-life care by family caregivers.