Abstract
Abstract Background/Aims Systemic lupus erythematosus (SLE) affect patients from minority ethnic backgrounds, with many patients experiencing symptoms that affect their daily lives despite receiving long-term controller medication. Work is a large part of most people’s lives, yet little has been explored into how people from minority ethnic backgrounds cope at work whilst living with SLE. We conducted a study to understand the impact of SLE on working lives of South Asian patients. The aim was to identify and develop support mechanisms that could assist them with remaining at work. Methods Semi-structured interviews were conducted with ten patients of South Asian origin with SLE to explore their work experiences. Patients were recruited from three rheumatology centres in the West Midlands, UK and were interviewed between November 2019 and March 2020. Interviews were audio-recorded and typed by an independent transcribing company. Returned transcripts were analysed using thematic analysis and QSR NVivo 12 software was used to organise and manage the data. Results The majority (n = 8) of patients were female. Eight patients were from an Indian background, and two were from a Pakistani background. Half of all patients were educated to degree level. The age range of patients was 23 - 58 years old (S.D = 10.79), and disease duration varied between 3 months-33 years (S.D = 9.52). All patients had permanent jobs; six were in full-time employment, and four were in part-time employment. Four main themes emerged from the data: 1) Disease related factors; impacting work ability; 2) Employment related factors; impacting work ability; 3) Personal and cultural related factors; impacting work ability; 4) Recommendations for improvement were made by patients. Conclusion In this novel study we highlight patients’ experiences of being at work. This study reports low awareness of SLE and mixed support in the workplace. Patients discussed work to varying degrees with their clinicians and needed further information for employers that was not available nor provided by their clinicians. The study reports cultural barriers in understanding SLE that could lead to lack of family support to remain in employment. Moreover, recommendations made in this study require further investigation and could be used by clinicians and Lupus UK to support patients of South Asian origin at work. Disclosure M. Ubhi: None. S. Dubey: None. J. Reynolds: None. C. Gordon: None. T. Adizie: None. T. Sheeran: None. K. Allen: None. R. Jordan: None. S. Sadhra: None. J. Adams: None. R. Daji: None. K. Kumar: None.
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