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首页> 外文期刊>Scandinavian journal of rheumatology >'The feeling of not being entitled to something': fertility, pregnancy, and sexuality among women with systemic lupus erythematosus in South Africa
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'The feeling of not being entitled to something': fertility, pregnancy, and sexuality among women with systemic lupus erythematosus in South Africa

机译：“没有有权获得某种东西的感觉：南非全身性狼疮红斑狼疮的妇女生育，怀孕和性行为

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Objective: Fertility, pregnancy, and the postpartum period can pose many challenges for patients with systemic lupus erythematosus (SLE) in sub-Saharan Africa. We explored the perceptions and experiences of South African women relating to fertility and pregnancy. Method: In-depth interviews were conducted with 25 consenting women with SLE. We explored their perceptions and experiences on conception, pregnancy, and sexuality. Data were analysed using Nvivo software. Results: Participants had a mean age of 30.9 years (range 22-45 years) and mean disease duration of 4.5 years (range 1-5 years). The majority were black Africans, and the remainder were of mixed racial ancestry. Unemployment, low educational level, and singlehood status were the most predominant sociodemographic features. Most participants had been pregnant and a few reported being sexually inactive. Participants described many negative pregnancy outcomes including lupus flares, miscarriages, premature deliveries, prolonged hospitalization, and unexpected caesarean sections. Conflicting medical advice on conception, together with conflicting personal, cultural, and societal pressures to procreate, resulted in emotional turmoil and pessimism. Participants frequently described intimacy problems, loss of libido, and infidelity by partners leading to sexually transmitted infections. Aesthetic and physical concerns were perceived as the main causes of infidelity. Most participants felt confined to these relationships as they were financially dependent on their partners, which added to their stress. Conclusion: A combination of patient-centred care focusing on safe, effective contraception and medication targeting remission state, constant counselling, consistent information, and a pregnancy managed jointly by an obstetrics and rheumatology team could achieve optimum results.
机译：目的：生育，怀孕和产后时期可以对撒哈拉以南非洲撒哈拉以南的系统性红斑狼疮（SLE）的患者带来许多挑战。我们探讨了与生育和怀孕有关的南非妇女的看法和经验。方法：进行深入访谈，25人同意妇女。我们探讨了他们对概念，怀孕和性行为的看法和经验。使用NVivo软件分析数据。结果：参与者的平均年龄为30.9岁（范围22-45岁），平均疾病持续时间为4.5岁（范围1 - 5年）。大多数是黑人非洲人，其余的是混合种族的血统。失业率，低教育水平和单一地位是最主要的社会渗塑特征。大多数参与者怀孕了，据报道，少数人为无效。参与者描述了许多阴性妊娠结果，包括狼疮斑点，流产，早产，长期住院和意外的剖腹产。与概念相互冲突的医疗建议，与矛盾的个人，文化和社会压力相互冲突，导致情绪动荡和悲观。参与者经常描述亲密的问题，失去性欲丧失，并受合作伙伴的不忠导致性传播感染。审美和身体担忧被认为是不忠的主要原因。大多数参与者都暗示了这些关系，因为它们在经济上依赖他们的合作伙伴，这增加了他们的压力。结论：患者以患者为中心护理的组合，对安全，有效的避孕药，瞄准缓解状态，不断咨询，一致的信息和妇产科团队共同管理的妊娠，可以实现最佳结果。

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