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Advisory Committee Chair

Marie Bakitas

Advisory Committee Members

Gwendolyn Childs

Patricia Clark

Nataliya Ivankova

Kimberly Johnson

Document Type

Dissertation

Date of Award

2018

Degree Name by School

Doctor of Philosophy (PhD) School of Nursing

Abstract

This qualitative grounded theory study explored the process of decision making for African American family caregivers in the southeastern United States, as they make hospice decisions for their loved ones, Although hospice use in the United States has grown over the last decade, a disparity continues to exist between African American and Caucasian populations. African Americans represent a small percentage of hospice users in the United States, despite research that has found that patients who use hospice experience improved symptom control, fewer unmet needs, and better end of life care. Research has identified many reasons for this disparity; however, little is known about the decision-making process of African Americans who choose hospice care. The purpose of this qualitative study was to understand the decision-making process to use hospice services, from the African American family caregiver perspective. Individual, in-depth, semistructured interviews were conducted with 18 African American family caregivers. Interview data were analyzed using a grounded theory approach. Results showed that realizing that their loved ones were at the end of life was at the core of the decision-making process for these caregivers. Caregivers needed to come to this realization in order to make the decision to use hospice care. Physician communication was integral to the process because physicians were the primary clinicians to introduce the caregivers to their loved ones’ prognoses and to the hospice option as the next step in care. Many factors were considered when making the decision but most important to caregivers was their loved ones’ comfort. The results of this study illustrated the need for better understanding of the process of realization of dying that African Americans caregivers go through during end of life decision making. The results highlight the importance of the communication of healthcare personnel, specifically physicians, during this critical decision-making process for African American caregivers.

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