“我是人，但我又不是人”：马拉维中部地区产科瘘患者的生活体验。
"I am a person but I am not a person": experiences of women living with obstetric fistula in the central region of Malawi.
机构信息
University of Oslo, Department of Community Medicine and Global Health, P.O.Box 1130 Blindern, N-0318, Oslo, Norway.
University of Malawi, Kamuzu College of Nursing, Blantyre, Malawi.
出版信息
BMC Pregnancy Childbirth. 2017 Dec 21;17(1):433. doi: 10.1186/s12884-017-1604-1.
BACKGROUND
The consequences of living with obstetric fistula are multifaceted and very devastating for women, especially those living in poor resource settings. Due to uncontrollable leakages of urine and/or feces, the condition leaves women with peeling of skin on their private parts, and the wetness and smell subject them to stigmatization, ridicule, shame and social isolation. We sought to gain a deeper understanding of lived experiences of women with obstetric fistula in Malawi, in order to recommend interventions that would both prevent new cases of obstetric fistula as well as improve the quality of life for those already affected.
METHODS
We conducted semi-structured interviews with 25 women with obstetric fistula at Bwaila Fistula Care Center in Lilongwe and in its surrounding districts. We interviewed twenty women at Bwaila Fistula Care Center; five additional women were identified through snowball sampling and were interviewed in their homes. We also interviewed twenty family members. To analyze the data, we used thematic analysis. Data were categorized using Nvivo 10. Goffman's theory of stigma was used to inform the data analysis.
RESULTS
All the women in this study were living a socially restricted and disrupted life due to a fear of involuntary disclosure and embarrassment. Therefore, "anticipated" as opposed to "enacted" stigma was especially prevalent among the participants. Many lost their positive self-image due to incontinence and smell. As a way to avoid shame and embarrassment, these women avoided public gatherings; such as markets, church, funerals and weddings, thus losing part of their social identity. Participants had limited knowledge about their condition.
CONCLUSION
The anticipation of stigma by women in this study consequently limited their social lives. This fear of stigma might have arisen from previous knowledge of social norms concerning bowel and bladder control, which do not take into account an illness like obstetric fistula. This misconception might have also arisen from lack of knowledge about causes of the condition itself. There is need therefore to create awareness and educate women and their communities about the causes of obstetric fistula, its prevention and treatment, which may help to prevent fistula as well as reduce all dimensions of stigma, and consequently increase dignity and quality of life for these women.
背景
患有产科瘘的后果对女性来说是多方面的，非常具有破坏性，尤其是那些生活在资源匮乏环境中的女性。由于无法控制的尿液和/或粪便泄漏，这种情况导致女性生殖器部位的皮肤剥落，而潮湿和异味使她们受到污名化、嘲笑、羞辱和社会孤立。我们试图更深入地了解马拉维患有产科瘘的女性的生活经历，以便提出干预措施，既可以预防产科瘘的新病例，又可以改善已经受到影响的女性的生活质量。
方法
我们在利隆圭的 Bwaila 瘘管护理中心及其周边地区对 25 名患有产科瘘的女性进行了半结构化访谈。我们在 Bwaila 瘘管护理中心采访了 20 名女性；通过滚雪球抽样方法确定了另外 5 名女性，并在她们家中进行了采访。我们还采访了 20 名家庭成员。为了分析数据，我们使用了主题分析。使用 Nvivo 10 对数据进行分类。戈夫曼的污名理论被用来为数据分析提供信息。
结果
由于害怕不自觉地披露和尴尬，本研究中的所有女性都过着社交受限和混乱的生活。因此，与“实施”污名相比，参与者中尤其普遍存在“预期”污名。由于失禁和异味，许多人失去了积极的自我形象。为了避免羞耻和尴尬，这些女性避免参加公共集会；如市场、教堂、葬礼和婚礼，因此失去了部分社会身份。参与者对自己的病情知之甚少。
结论
本研究中女性对污名的预期，因此限制了她们的社交生活。这种对污名的恐惧可能源于对涉及肠道和膀胱控制的社会规范的先前了解，而这些规范并没有考虑到产科瘘等疾病。这种误解也可能源于对该病本身病因的了解不足。因此，有必要提高妇女及其社区对产科瘘的原因、预防和治疗的认识和教育，这可能有助于预防瘘管，并减少污名的所有方面，从而提高这些妇女的尊严和生活质量。
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