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"I noticed something wrong"| Lived experiences of women of color who faced a protracted journey to diagnosis with lupus

<p>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.
Date08 April 2017
CreatorsMcNeil, Joy Nicole
PublisherCapella University
Detected LanguageEnglish

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