Rheumatic Disease Unit, Department of Medicine, Groote Schuur Hospital, University of Cape Town, Cape Town, South Africa.
Alan J Flisher Centre for Public Mental Health, University of Cape Town, Cape Town, South Africa.
Health Qual Life Outcomes. 2019 Apr 16;17(1):65. doi: 10.1186/s12955-019-1132-y.
Systemic lupus erythematosus (SLE) often has a profound negative impact on health-related quality of life (HRQoL). In the absence of any qualitative studies in sub-Saharan Africa, we undertook a study to explore living experiences, perceptions and unmet needs of South African patients with SLE.
Twenty-five women with SLE consented to participate in the study. They underwent individual in-depth interviews exploring their physical concerns, emotional health, sexual well-being and fertility. NVivo software was used for analysis.
Participants were either of black ancestry or mixed racial ancestry, mainly indigent with only a quarter gainfully employed. Living with pain was the most common complaint, negatively impacting on activities of daily living (ADL), family expectations, social life, sleep and intimacy. Most participants expressed challenges of living with fatigue, and many felt their fatigue was misconstrued as being 'simply lazy'. This pernicious fatigue had negative consequences on many facets of ADL, including caring for dependants, job sustainability and sexual well-being. All participants experienced low emotional states, often associated with suicidal ideations. Many experienced difficulties with fertility and childbearing and these were exacerbated in many instances by the pessimism of health care providers, resulting in confusion and depression. Physical disfigurements resulting from lupus-associated alopecia and rashes and corticosteroid-induced weight fluctuations were a major concern. These changes often affected self-image and libido, leading to strained personal relationships. Coping mechanisms that participants adopted included intense spiritual beliefs, 'pushing through the difficult times' and use of alternative therapies to relief symptoms was common. A poor understanding of SLE on the part of participant's family and the community, coupled with the unpredictable course of the disease, exacerbated frustration and social exclusion. For most, limited income, lack of basic services, family dependencies, and comorbid diseases, such as human immune deficiency virus (HIV), exacerbated the daily negative SLE experiences.
In this study of mainly indigent South African women, SLE is associated with complex, chronic and challenging life experiences. The chronic relapsing and unpredictable nature of the disease, poor understanding and acceptance of SLE, compounded by a background of poverty, inadequate social support structures, negatively impact on a range of personal, social and vocational daily life experiences. Improved access to psychosocial services and SLE education might result in better outcomes.
(Ethics Project identification code: 275/2016 and M160633 registered 10 & 29 August 2016).
系统性红斑狼疮（SLE）常对健康相关生活质量（HRQoL）产生深远的负面影响。在撒哈拉以南非洲地区缺乏任何定性研究的情况下，我们进行了一项研究，以探索南非 SLE 患者的生活体验、看法和未满足的需求。
25 名 SLE 女性同意参与研究。她们接受了个体深入访谈，探讨了她们的身体问题、心理健康、性健康和生育能力。使用 NVivo 软件进行分析。
参与者要么是黑人血统，要么是混合种族血统，主要是贫困人群，只有四分之一的人有全职工作。疼痛是最常见的抱怨，严重影响了日常生活活动（ADL）、家庭期望、社交生活、睡眠和亲密关系。大多数参与者表示存在疲劳问题，许多人认为他们的疲劳被误解为“仅仅是懒惰”。这种恶性疲劳对 ADL 的许多方面都有负面影响，包括照顾家属、工作的可持续性和性健康。所有参与者都经历了情绪低落，常常伴有自杀意念。许多人在生育和育儿方面遇到困难，在许多情况下，医疗保健提供者的悲观态度加剧了这些困难，导致困惑和抑郁。狼疮相关脱发、皮疹和皮质类固醇引起的体重波动导致的身体畸形是一个主要问题。这些变化常常影响自我形象和性欲，导致人际关系紧张。参与者采用的应对机制包括强烈的精神信仰、“度过困难时期”以及使用替代疗法来缓解症状。参与者的家人和社区对 SLE 的理解有限，加上疾病的不可预测性，加剧了沮丧和社会排斥。对大多数人来说，有限的收入、缺乏基本服务、家庭依赖以及合并疾病（如人类免疫缺陷病毒（HIV））加剧了日常 SLE 的负面影响。
在这项对主要是贫困的南非女性的研究中，SLE 与复杂、慢性和具有挑战性的生活体验相关。疾病的慢性复发和不可预测的性质、对 SLE 的理解和接受程度差，加上贫困、社会支持结构不足的背景，对个人、社会和职业日常生活体验的多个方面产生负面影响。改善获得心理社会服务和 SLE 教育的机会可能会带来更好的结果。
（伦理项目识别码：275/2016 年，M160633 于 2016 年 8 月 10 日和 29 日注册）。
