Functional work disability from the perspectives of persons with systemic lupus erythematosus: a qualitative thematic analysis

Abstract

Abstract Background Systemic lupus erythematosus (SLE) disease symptoms that can significantly restrict work ability and work participation resulting in reduced mental well-being. This study investigates the significant impact of work participation and disability on the mental wellbeing, health-related quality of life, and disease-related outcomes in individuals with SLE. Methods With the objective of creating an SLE-related functional profile rooted in work disability (WD) prevention, 46 SLE patients were purposively recruited from Canadian medical centres. Through semi-structured interviews guided by a WD prevention framework, factors associated with WD and lived experiences of SLE-related WD were qualitatively explored. Braun and Clarke’s six-stage inductive thematic analysis was used to organize the data. Results Most participants experienced some form of work disability across their employment history related to their clinical manifestations of SLE, including hospitalizations, physical limitations, fatigue, and neurocognitive symptoms (e.g. brain fog). Thematic analysis revealed three key themes: (a) the influence of illness experience on work, (b) the stigmatization of illness disclosure, and (c) the availability of workplace resources/accommodations. Participants emphasized the desirability of work with reduced physical and mental demands, increased personal control, and workplace flexibility to prevent WD. Conclusion The study underscores the need for a collaborative, multi-component, and multidisciplinary intervention targeting psychosocial and workplace factors to establish a goal-oriented preventative framework, potentially improving WD outcomes in SLE individuals.