Understanding the impact of systemic lupus erythematosus on work amongst South Asian people in the UK: An explorative qualitative study

Author:

Ubhi Mandeep1ORCID,Dubey Shirish23,Gordon Caroline45,Adizie Tochukwu6,Sheeran Tom6,Allen Kerry7,Jordan Rachel8,Sadhra Steven9,Adams Jo10,Daji Rashmika11,Reynolds John A45,Kumar Kanta1

Affiliation:

1. Institute of Clinical Sciences, University of Birmingham, Birmingham, UK

2. University Hospitals Coventry, Coventry, UK

3. Warwickshire NHS Trust, Warwick, UK

4. Rheumatology Research Group, Institute of Inflammation and Ageing, University of Birmingham, Birmingham, UK

5. Sandwell and West Birmingham NHS Trust, West Bromwich, UK

6. Royal Wolverhampton NHS Trust, Wolverhampton, UK

7. School of Social Policy, University of Birmingham, Birmingham, UK

8. Institute of Applied Health Research, University of Birmingham, Birmingham, UK

9. Institute of Occupational and Environmental Medicine, University of Birmingham, Birmingham, UK

10. Faculty of Environmental and Life Sciences, University of Southampton, Southampton, UK

11. Lupus, Romford, UK

Abstract

SLE has a range of fluctuating symptoms affecting individuals and their ability to work. Although South Asian (SA) patients are at increased risk of developing SLE there is limited knowledge of the impact on employment for these patients in the UK. Understanding ethnicity and disease-specific issues are important to ensure patients are adequately supported at work. Semi-structured interviews were conducted with patients of SA origin to explore how SLE impacted on their employment. Thematic analysis was used to analyse the data which are reported following COREQ guidelines. Ten patients (8 female; 2 male) were recruited from three rheumatology centres in the UK and interviewed between November 2019 and March 2020. Patients were from Indian (n = 8) or Pakistani (n = 2) origin and worked in a range of employment sectors. Four themes emerged from the data: (1) Disease related factors; (2) Employment related factors; (3) Cultural and interpersonal factors impacting on work ability; (4) Recommendations for improvement. Patients’ ability to work was affected by variable work-related support from their hospital clinicians, low awareness of SLE and variable support from their employers, and cultural barriers in their communities that could affect levels of family support received. These findings highlight the need for additional support for SA patients with SLE in the workplace.

Funder

Lupus UK

Publisher

SAGE Publications

Subject

Rheumatology

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