Systemic Lupus Erythematosus (SLE), a systemic autoimmune disease, affects more than one million people within the United States and disproportionately impacts women of color particularly in their childbearing years, 15-44. Research on living with lupus post-diagnosis has expanded within the past decade. While research on SLE is increasing, little is known about the often-protracted journey women of color experience along the way toward diagnosis. The journey to accurate diagnosis is fraught with unexplained symptoms and uncertainty within the women’s spheres of life and influence. Therefore, the following research question arose: What are the lived experiences of women of color aged 22-44 who have experienced a protracted journey toward diagnosis with SLE? Utilizing a qualitative, phenomenological design, the researcher strove to document the lived experiences of 12 women of color who reported the experience of a protracted journey to SLE diagnosis of 6 months or more. The women were recruited from various methods of contact including message boards, lupus support groups, and social media. After recruitment and informed consent measures, interviews were conducted and transcribed. The coding and analysis of the interviews revealed the presence of various individual textural and structural themes involving aspects of the wait for answers: recurrent symptoms, significance of family, lack of answers from healthcare providers, work, uncertainty of life, desiring normalcy, and pain. Three themes overlapped throughout the interviews: Ambiguity while accessing the medical community, family matters and pushing through. The findings reveal the physical, psychological, and relational complexity surrounding the protracted journey to diagnosis and how the individual journey and collective experiences can aid healthcare professionals, lupus patients and their caregivers in timely, accurate, patient-centered care. Recommendations include further research on SLE and protracted diagnosis, the development of practical steps towards the empowerment of patients within the autoimmune community, and a call for more women in research and clinical trials that contribute toward the overall improvement of women’s healthcare.
|Commitee:||Bryant, Rhonda, Waugh, Catherine|
|Department:||Harold Abel School of Social and Behavioral Sciences|
|School Location:||United States -- Minnesota|
|Source:||DAI-B 78/08(E), Dissertation Abstracts International|
|Subjects:||Mental health, Counseling Psychology|
|Keywords:||Autoimmune disease, Diagnosis, Lupus, Systemic Lupus Erythematosus, Women of color|
Copyright in each Dissertation and Thesis is retained by the author. All Rights Reserved
The supplemental file or files you are about to download were provided to ProQuest by the author as part of a
dissertation or thesis. The supplemental files are provided "AS IS" without warranty. ProQuest is not responsible for the
content, format or impact on the supplemental file(s) on our system. in some cases, the file type may be unknown or
may be a .exe file. We recommend caution as you open such files.
Copyright of the original materials contained in the supplemental file is retained by the author and your access to the
supplemental files is subject to the ProQuest Terms and Conditions of use.
Depending on the size of the file(s) you are downloading, the system may take some time to download them. Please be