Dilemmas and Decision Making of End-of-Life Caregivers

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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.