'It's Like Your Body is Fighting Against You': Perceptions and Experiences Regarding Quality of Life in Black Women Diagnosed with Endometriosis Público
Dakwa, Melanie (Spring 2022)
Abstract
Endometriosis impacts an estimated 10% - 15% of women of reproductive. The condition is characterized by the presence of endometrial tissue outside of the uterine cavity and can lead to symptoms that result in an overall lowered quality of life. Research on the experiences of women diagnosed with endometriosis historically focused on White middle-class women. There has been a disregard for Black women’s pain within research. As a result, there is a need to explore the impact of endometriosis on quality of life, particularly for US-born Black women. This study will aim to fill this gap by exploring the experiences of Black women diagnosed with endometriosis. Data were collected through semi structured in depth interviews with Black women between the ages 18-45, living in the United States, and diagnosed with endometriosis. Interviews were video and audio recorded on Zoom and then transcribed. A thematic analysis approach was then used to generate themes. A total of 18 Black women were interviewed for this study. Four themes emerged from the data: The psychosocial impact of endometriosis on quality of life; navigating healthcare experiences; resiliency and self-advocacy by any means necessary; the need to know: lessons learned and a call to action. When caring for Black women who are presenting symptoms of pain and lowered quality of life, it is important for healthcare professionals to be intentional about recognizing their own bias and acknowledging the historical context behind the dismissal of pain in Black women in the United States. This can be done through engaging in cultural sensitivity training and pursuing an individualized approach to care. Furthermore, healthcare professionals can also leverage support for women by identifying and including social networks to mitigate the burden of endometriosis to improve overall quality of life.
Table of Contents
CHAPTER I. INTRODUCTION 1
1.1 Problem Statement 1
1.2 Purpose Statement 2
1.3 Research question 3
1.4 Significance Statement 4
1.5 Theory 6
1.6 Definition of Terms 7
CHAPTER II. REVIEW OF LITERATURE 8
2.1 Impacts on Quality of Life 8
2.2 Delay in Diagnosis 12
2.3 Black Women, Endometriosis, and Implicit Bias 14
2.4 Conclusion 17
CHAPTER III. STUDENT CONTRIBUTION 18
3.1 Description of student contribution 18
CHAPTER IV. JOURNAL ARTICLE 21
Abstract 22
Introduction 24
Methods 26
Findings 28
Discussion 45
CHAPTER V. PUBLIC HEALTH IMPLICATIONS 51
References 56
APPENDIX 62
Appendix A 62
Appendix B 63
Appendix C 64
Appendix D 65
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