Exploring the social and interpersonal experiences of South Asian women with a diagnosis of Systemic Lupus Erythematosus

• Published in: Psychology & health 2015-03, Vol.30 (3), p.318-335
• Main Authors: Rutter, S.J., Kiemle, G.
• Format: Article
• Language: English
• Subjects: Adult; Asian Continental Ancestry Group - psychology; Asian Continental Ancestry Group - statistics & numerical data; Attitude to Health - ethnology; Autoimmune diseases; biopsychosocial; Body Image - psychology; Cultural Characteristics; Ethnic Groups - psychology; Ethnic Groups - statistics & numerical data; Ethnicity; Female; Humans; Interpersonal Relations; interpersonal relationships; Lupus; Lupus Erythematosus, Systemic - ethnology; Lupus Erythematosus, Systemic - psychology; Middle Aged; qualitative; Qualitative Research; Quality of Life - psychology; Social Support; South Asian women; Systemic Lupus Erythematosus; United Kingdom
• ISSN: 0887-0446; 1476-8321
• DOI: 10.1080/08870446.2014.972397

Systemic Lupus Erythematosus (SLE) negatively impacts life quality, disproportionately affecting women and UK ethnic minorities. The study aimed to explore how UK South Asian women with SLE make sense of their social and interpersonal experiences, within the context of their ethnicity and perceived cultural influences. A qualitative design was employed to collect data from a homogenous sample of six South Asian women with SLE. Semi-structured interviews elicited participants' experiences of living with SLE and data were analysed using Interpretative Phenomenological Analysis. Master themes were (1) 'SLE: Complexities and Ironies', (2) 'The Power of SLE', (3) 'A Sense of Personal Responsibility and Accountability', (4) 'Essential Relationships: Qualities and Consequences' and (5) 'Struggling in Public View'. Findings revealed that illness, function and emotion were experienced as interrelated, and psychosocial issues were a powerful feature in SLE illness processes. Body image concerns, difficulties maintaining roles and the perceived views of others, triggered embarrassment and withdrawal, negatively influencing social function and relationships. Interestingly, explicit references to ethnicity and culture were minimal, suggesting that for these women, the key features of experience tended to reflect those of other SLE groups. These findings call for an integrated, biopsychosocial and multidisciplinary approach to health care provision in this area.