The Lived Experience of African American Caregivers Caring for Adult African American Patients

148 Pages·2017·2.91 MB·English

by  Heather Marie Hamilton

University of Connecticut
The Lived Experience of African American Caregivers Caring for Adult African American Patients
with Heart Failure: A Phenomenological Study
Heather Hamilton, PhD, RN
University of Connecticut, 2014

Abstract
An estimated 5.7 million people in the United States are currently living with heart failure
(HF); this population is expected to double in the next 25 years due to advances in modern
medicine that have decreased the mortality rates for cardiovascular diseases. Because of the
complex regimen required, the help of family members, friends or neighbors is crucial to
adequately managing symptoms and preventing hospital readmissions. Descriptive phenomenology
underpins this study. Formal interviews were used to explore African American caregivers’ lived
experience in caring for African American heart failure patients. Snowball sampling and purposive
sampling yielded a total of 10 interviewed participants, which achieved data saturation.
The interviews were analyzed using Colaizzi’s steps. Seven themes emerged:
(1) Juggling act, (2) Layers of support, (3) Realization of self-neglect, (4) Experiencing the
“blues,” (5) Connecting with healthcare provider, (6) Unmet financial needs and (7) Perception of
non-adherence. Thorough information regarding the experience of African American caregivers of
heart failure patients obtained through this research will enhance the resources available to
healthcare professionals for delivering culturally competent support to African American
caregivers, thereby improving quality of life for heart failure patients and their caregivers.

Key words: Heart Failure, African Americans, Caregivers, and Phenomenology
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The Lived Experience of African American Caregivers Caring for Adult African American Patients
with Heart Failure: A Phenomenological Study

Heather Hamilton, MSN, RN

B.A., Rutgers University, 2001
MSN. , Rutgers University, 2005

A Dissertation
Submitted in Partial Fulfillment of the
Requirements for the Degree of
Doctor of Philosophy
at the
University of Connecticut

2014

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Copyright by
Heather Hamilton, MSN, RN

2014

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APPROVAL PAGE

Doctor of Philosophy Dissertation

The Lived Experience of African American Caregivers Caring for Adult African American Patients
with Heart Failure: A Phenomenological Study

Presented by

Heather Hamilton, MSN, RN

Major Advisor ___________________________________________________________________
Cheryl Beck, DNSc, CNM, FAAN

Associate Advisor
___________________________________________________________________
Xiaomei Cong, PhD, RN

Associate Advisor
___________________________________________________________________
Juliette Shellman, PhD, RN

University of Connecticut
2014

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Acknowledgement

I would like to thank God, my family, friends, and advisors who have helped me along this
journey.
To God, thank you for the blessings you have bestowed upon me throughout my time as a
student at the University of Connecticut, School of Nursing.
Dr. Regina Cusson, and Elizabeth Polifroni, thank you for your endless support to ensure
my success in this program.
I would like to thank my advisor Cheryl Beck, my associate advisors Juliette Shellman,
and Xiaomi Cong, and my readers Desiree Diaz, and Kelly Newlin Lew.
To my family and friends, thank you for your love and support. To my sisters, Semone
Morrison, Stacy- Ann Lambert, and Nickesha Lambert, thank you for your encouragement
and guidance when I needed it most.
To my husband Horace and my 5-year-old sunlight, Abigail, thank you for each sacrifice
you have made to ensure my success in this program.
To my mother Betty-Ann, I wish you had the opportunity to share this moment with me.

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Table of Contents

Approval page iv
Acknowledgement v
Table of Contents v
Chapter 1. Introduction to African American caregivers 1
Background 1
Purpose of the study 6
Research Question 6
Significance and Relevance to Nursing 6
Summary 8
Chapter 2. Review of Literature 9
African American Culture and its Caregivers 10
African American Caregivers vs. Caregivers from Other Ethnic Background s 15
Caring for Patients with Conditions Other than HeartF ailure.
Caregivers of Heart Failure Patients 18
Caregivers’ Role in Managing the Health of Heart Failure Patient s 22
Caregivers Emotions 30
Chapter 3. Method of Inquiry 38
Research Question 38
Philosophy of Phenomenology 38
Research Design 45
Protection of Participants. 46
Recruitment of Participants 47
Data Collection 49
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Data Analysis 51
Methodological Rigor 52
Conclusion 53
Chapter 4: Results 54
Sample 54
Table 1: Demographic Sample 55
Themes 56
Table 2: Significant Statements, Formulated Meanings, Themes and Sub-themes 57
Theme I: Juggling Act 65
Theme 2: Layers of Support 76
Theme 3: Realization of Self-Neglect 70
Theme 4: Experiencing the “Blues” 72
Theme 5: Connecting with the Health Care Provide r 75
Theme 6: Unmet Financial Needs 77
Theme 7: Perceptions of Non-Adherence 79
Exhaustive Description 82
Chapter 5. Discussion of Findings 84
Implications for Nursing Practice 101
Implications for Nursing Education 104
Future Research 106
Limitations 108
Conclusion 109
Table 3: New York Heart Failure Classification 112
References 113
Appendix A: University of Connecticut IRB Approval Letter 125
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Appendix B: Rev.com Privacy Policy 127
Appendix C: Informed Consent Form 129
Appendix D: Approval Letters from Sites 132
Appendix E: Recruitment Flyer 134
Appendix F: Demographic Table 135
Table 4: Heart Healthy Diets for African Americans 136

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Chapter I
Introduction to African American caregivers
The purpose of this study was to investigate the lived experience of African
Americans who have assumed the responsibility of caring for African American friends,
neighbors or family with a diagnosis of heart failure. The African American community
consists of many generations of African and Caribbean immigrants, as well as their
descendants born in the United States (U.S. Census Bureau, 2012). In this chapter the
necessity and purpose of the study are addressed along with an introduction to heart failure
and discussion of the particular challenges faced by African American heart failure patients
and the assistance they require in maintaining a healthy lifestyle, including the informal
caregivers’ role in this process.
Background
Heart failure is a chronic, disabling syndrome characterized by systemic perfusion
inadequate to meet the body's metabolic demands as a result of impaired cardiac pump
function (Heart Failure Society of America (HFSA), 2010). An estimated 5.7 million
people are currently living with heart failure int he United States; this population is
expected to double in the next 25 years due to advances in modern medicine that have
decreased the mortality rates for cardiovascular diseases (American Heart Association
(AHA), 2012; AHA, 2014). However, quality of lfie for many heart failure patients is less
than optimal (AHA, 2012; AHA, 2014; HFSA, 2010).
Debilitating physical symptoms, emotional distress, and impaired quality of life are
prominent in the lives of heart failure patients. Additionally, they encounte rrepeated
hospitalizations and, in some cases, premature death (Chen, Normand, Wang, &