Caregiver Burden and Racial Discrimination in African Americans: A Mixed Methods Study of Chronic Stress Open Access

Stevens, Debbie Y. (2014)

Permanent URL: https://etd.library.emory.edu/concern/etds/s1784m42m?locale=en
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Abstract

Background: Caregiver burden is a multidimensional response to the physical, emotional, and financial stressors of caring for chronically ill adults. It has been repeatedly linked with negative health outcomes. Despite enduring multiple challenges as caregivers, African Americans have long been described as being less burdened by their caregiving responsibilities, compared to their White counterparts. In contrast to what has been previously depicted in the literature, caregiver burden in African Americans is becoming a significant concern for a widening group of social scientists. This dissertation examined the diverse ways African Americans are specifically affected by the ongoing stress of caring for a loved one.

Purpose: The purpose of the study was to examine the psychological and biological effects of chronic stress, specifically caregiver burden and racial discrimination, on the health of African American caregivers of dementia patients.

Methods: To unpack the stress and coping process and explore burden comprehensively, we utilized a mixed methods design with both quantitative and qualitative components.

Sample: The data came from a program project grant that included a study of African American caregivers of patients diagnosed with Alzheimer's dementia. The current study used data from 100 African American informal family caregivers, 90% being women. From this sample, nine caregivers were selected for follow up in-depth interviews.

Findings: This study was able to illuminate multiple challenges African American family caregivers face. Consistent with previous findings, we discovered that caregiver burden and discrimination have independent relationships with both depression and anxiety. We also discovered discrepancies between the survey data and narrative accounts of caregiver burden.The sense of obligation and disruption emerged as two prominent components of the burden experience for these caregivers.

Discussion: We concluded that discrimination was an added stressor for African American caregivers, significantly predicting both depression and anxiety. Although some caregivers were more resilient and perceived low levels of burden, the caregivers were on average highly burdened by their caregiving responsibilities. By accounting for discrimination and using mixed methods, our findings extend the current understanding of the impact of caregiving in African Americans and will hopefully influence future research, clinical practice and health policy.

Table of Contents

I. CHAPTER ONE: INTRODUCTION 1 a. Statement of the Problem 1 b. Purpose of the Study 5 c. Specific Aims of the Study 6 d. Theoretical Framework 7 e. Additional Theoretical Perspectives 13 f. Chapter Summary 18 II. CHAPTER TWO: LITERATURE REVIEW 19 a. Impact of Caregiving 20 b. Conceptualizing Racism 25 c. Inflammatory Biomarkers of Stress 28 d. Stress and Coping in African American Caregivers 29 e. Chapter Summary 31 III. CHAPTER THREE: METHODOLOGY 32 a. Research Study Design 32 b. Quantitative Phase 35 c. Qualitative Phase 40 d. Data Integration 46 e. Research Integrity 47 f. Chapter Summary 47 III. CHAPTER FOUR: RESULTS 48 a. Quantitative Results 48 b. Qualitative Results 61 IV. CHAPTER FIVE: DISCUSSION 86 a. Caregiver Burden and Health 87 b. Race, Discrimination, and Health 89 c. Meaning of Burden 95 d. Difference in Burden Perception 99 e. Strengths and Limitations 109 f. Conclusion 110 V. APPENDICES 117 VI. REFERENCES 128

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