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

148 Pages·2017·2.91 MB·English
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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 ii 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 ii iii Copyright by Heather Hamilton, MSN, RN 2014 iii iv 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 iv v 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. v vi 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 vi vii 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 vii viii 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 viii 1 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, &

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