Dilemmas and Decision Making of End-of-Life Caregivers

描述（由申请人提供）：每年都有成千上万的65岁以上的人在接受家庭照顾者的照顾时在家中死亡，这些家庭照顾者可能得到也可能没有得到正式的医疗保健或临终关怀服务的支持。此外，更多的人在首次接受家庭护理人员的临终关怀后，死在医院、疗养院或临终关怀医院。最近的趋势表明，随着人口老龄化，选择在家中去世的人数将急剧增加。一般照护和临终照护的一个被忽视的研究领域是对家庭照护者困境和决策过程的研究，因为它们影响医疗保健结果。本探索性描述性研究的目的是增强对护理者在家中提供临终关怀时所遇到的困境、影响决策的因素以及决策过程与护理结果的关系的理论理解。具体目的是1)描述护理人员在家中为老年家庭成员提供临终护理时遇到的困境类型；2)描述这些困境与决策过程及其结果的关系；3)确定内省、人际、超个人和社会结构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。数据将从那些为65岁或65岁以上的人提供居家临终护理和参加社区丧亲小组的家庭护理人员中取样。从这项调查中获得的理论基础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.