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

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.

Adherence with mycophenolate mofetil in patients with autoimmune inflammatory rheumatic diseases in coventry: Signs of progress but challenges remain

“…Our study suggests that Asian ethnicity reduces the likelihood of good adherence. This is consistent with other studies investigating this and health beliefs may play an important role in this (Kumar et al., 2011; Ubhi et al., 2021). This group of patients ought to be considered high risk for non‐adherence and strategies need to be built around addressing these, in order to prevent longer term health impairment.…”

Importance of temporality and context in relation to life habit restrictions among patients with systemic lupus erythematosus: A psychosocial qualitative study

“…While certain adjustments (institutionalized or not) 29 could enable people to regain or maintain their professional and financial life, some participants reported institutional difficulties regarding the implementation of adjustments adapted to their situation. 30 Dietary adjustments were presented as complex because of the establishment of new habits, but also because of the difficulty of accessing low salt and sugar-free products in shops and restaurants as well as the lack of understanding of some relatives with regard to the need for a strict diet, which for some represented a deviation from the social norm. As such, LH restrictions must be regarded within the context (availability of resources; social and societal environment; moment of life history and illness) in which they are lived.…”