The lived experiences of women during their journey to diagnosis of systemic lupus erythematosus




Broadway-Duren, Jacqueline B.

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Systemic lupus erythematosus (SLE) is an autoimmune disease that primarily affects women during the third or fourth decade of life. The multisystemic nature of the disease is associated with highly variable onset. The purpose of this descriptive phenomenological study is to explore the meanings of the participant’s life experiences, their perceived challenges of delayed diagnosis, and the influence on their health outcomes. The results of the study are intended to inform health care providers of the challenges encountered by patients while seeking a diagnosis of SLE. It is estimated that SLE affects nearly 1.5 million persons in the United States (US) and three to four times more prevalent in African American females than Caucasian females. Historically, in the U.S., SLE patients had poor outcomes and significant morbidity and mortality. It is theorized that delayed diagnosis of SLE is associated with insufficient health care provider knowledge of clinical manifestations and diagnostic criteria. The study explored the patient's perspective on the challenges faced while seeking a diagnosis. Study participants were recruited from the Houston Chapter of the National Lupus Foundation and the local faith community throughout metropolitan Houston, Texas. Purposive sampling was used to recruit participants who met the inclusion criteria including women age 18 years or older, a confirmed diagnosis of SLE, and English speaking and reading. Data were collected through one-hour semi-structured audio-recorded via Zoom, Face Time, or phone interviews and a demographic data questionnaire. The framework of Lincoln and Guba (1985) will address trustworthiness and will be used to ensure credibility, dependability, transferability, and confirmability. Data analysis will be on-going and guided by Colazzi’s (1978) method of analysis. The steps of Colazzi's method include (1) familiarization, (2) identifying significant statements, (3) formulating meanings, (4) clustering themes, (5) developing an exhaustive description, (6) producing the fundamental structure, and (7) seeking verification of the fundamental structure.



SLE, Lupus, Systemic lupus, Women and SLE, SLE diagnosis, SLE manifestations, SLE health determinants, SLE delayed diagnosis