Dilemmas and Decision Making of End-of-Life Caregivers

描述（由申请人提供）：每年有数千名65岁以上的人在家中死亡，同时接受家庭照顾者的照顾，这些照顾者可能会或可能不会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密集临终护理后死于医院、疗养院或临终关怀。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急剧增加。一个被忽视的研究领域，在一般的临终关怀和临终关怀，特别是家庭照顾者的困境和决策过程的研究，因为它们影响医疗保健的结果。本探索性描述性研究的目的是提高理论上的理解，提供临终关怀照顾者在家里遇到的困境，影响决策的因素，以及决策过程的关系，医疗保健结果，认为照顾者。具体目标是：1）描述照顾者在家中为老年家庭成员提供临终关怀时遇到的困境类型; 2）描述这些困境如何与决策过程及其结果相关; 3）确定自我、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医疗保健结果的关系。数据将从为65岁或65岁以上的人提供家庭临终关怀的家庭照顾者以及参加社区丧亲团体的家庭照顾者中抽样。基于理论的知识来自这项调查将提供必要的信息，设计干预措施，可以导致提高个人的健康护理结果的背景下，临终关怀的家庭照顾者。

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.