Lupus & antiphospholipid syndrome
Digital Narratives of Living With Lupus: Lived Experiences and Meanings for Latin American and Latino Patients and Their Families
Authors' conclusion
Patients perceive lupus as an unpredictable illness and use metaphors to foster empathy and communicate their experiences to others. Religion is as important as medical treatment to cope with the disease, and the experience of having lupus extends to family and friends.
Study context
- Population
- Latin American and Latino patients with systemic lupus erythematosus (SLE) and their relatives and friends commenting on the public Facebook group "Hablemos de Lupus"
- Outcome
- Core themes of lived experience with SLE
Methodological detailsthematic analysis, interpretative medical anthropology framework, social media (Facebook) narratives, Deidentified narratives extracted using the Facepager application
- Thematic analysis
- Interpretative medical anthropology framework
- Social media (Facebook) narratives
- Deidentified narratives extracted using the Facepager application
Main finding
As reported in the abstract
- Five core themes: lived experiences with lupus, religious/spiritual thoughts, metaphors, heredity, and experiences of family and friends
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Original publication
Digital Narratives of Living With Lupus: Lived Experiences and Meanings for Latin American and Latino Patients and Their Families. Arthritis Care Res (Hoboken). Published 27 November 2022. doi:10.
Composed by AI from the published abstract and checked against it. How Briefs are made →