'But you don't look sick': a qualitative analysis of the LUPUS UK online forum.

ABSTRACT: Lupus is a multi-system autoimmune rheumatic disease with increased morbidity and mortality. Some manifestations are life-threatening with many aspects of living with the disease, difficulties in diagnosis and accessing appropriate medical care, having an impact on quality of life. The disease itself, and these patients' perspectives, are currently poorly understood and under-researched. The LUPUS UK forum of conversations between over 25,000 members provides a rich environment to explore the views of these patients. Conversations on the LUPUS UK online forum were qualitatively explored using virtual ethnography and thematic analysis. The forum itself and positive medical relationships were widely considered to provide a means of support, understanding and validation. Forum members express

SUBMITTER: Sloan M 

PROVIDER: S-EPMC7952333 | biostudies-literature | 2021 Apr

REPOSITORIES: biostudies-literature