Rutter S J, Kiemle G
a Department of Clinical Psychology , North Manchester General Hospital , Manchester , UK.
Psychol Health. 2015;30(3):318-35. doi: 10.1080/08870446.2014.972397. Epub 2014 Oct 30.
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.
系统性红斑狼疮(SLE)对生活质量有负面影响,对女性和英国少数族裔的影响尤为严重。该研究旨在探讨患有SLE的英国南亚女性如何在其种族和感知到的文化影响背景下理解她们的社会和人际经历。采用定性设计从六名患有SLE的南亚女性的同质样本中收集数据。半结构化访谈引出了参与者患有SLE的经历,并使用解释现象学分析对数据进行了分析。主要主题有:(1)“SLE:复杂性与讽刺性”,(2)“SLE的影响力”,(3)“个人责任感与问责制”,(4)“重要关系:特质与后果”,以及(5)“在公众视野中挣扎”。研究结果表明,疾病、功能和情感被视为相互关联,心理社会问题是SLE疾病过程中的一个重要特征。对身体形象的担忧、维持角色的困难以及他人的感知看法,引发了尴尬和退缩,对社会功能和人际关系产生了负面影响。有趣的是,对种族和文化的明确提及很少,这表明对于这些女性来说,经历的关键特征往往反映了其他SLE群体的特征。这些研究结果呼吁在该领域采取综合的、生物心理社会和多学科的医疗保健方法。