Dekker Rebecca L, Morton Christine H, Singleton Paula, Lyndon Audrey
J Midwifery Womens Health. 2016 Jul;61(4):467-73. doi: 10.1111/jmwh.12448. Epub 2016 Jun 10.
Cardiovascular disease has been identified as the leading cause of maternal mortality in the United States, with cardiomyopathy, including peripartum cardiomyopathy (PPCM), accounting for 12% to 16% of all pregnancy-related deaths. The purpose of this study was to describe women's experiences being diagnosed with PPCM.
This investigation was conducted using a qualitative design. We collected publicly available narratives posted by 92 women with PPCM (mean [SD] age 29 [6] years, mean [SD] ejection fraction 25.5 [10.8]%) in 3 online support groups. Data were coded and thematically organized so as to produce a richly detailed account of this experience.
The experience of diagnosis was marked by the women's distinct memories of their initial symptoms and whether they were dismissed or taken seriously. The most commonly reported symptoms were extreme shortness of breath, orthopnea, tachycardia, palpitations, chest pain, cough, and edema. Nearly 40% of women experienced symptom dismissal by health care providers. One-fourth of women were initially given inaccurate diagnoses ranging from "new mom anxiety" to asthma. Women described their initial reaction to diagnosis as feeling terrified, devastated, and feeling a sense of doom. Women had difficulty caring for their newborns during the postpartum period, and they struggled with the medical advice they received to not get pregnant again.
Despite experiencing severe subjective and objective symptoms, nearly 40% of women with PPCM experienced symptom dismissal by health care providers, in part due to the overlap between normal symptoms of pregnancy or the postpartum period and symptoms of heart failure.
心血管疾病已被确认为美国孕产妇死亡的主要原因，其中心肌病，包括围产期心肌病（PPCM），占所有与妊娠相关死亡的12%至16%。本研究的目的是描述被诊断为PPCM的女性的经历。
本调查采用定性设计。我们收集了92名患有PPCM的女性（平均[标准差]年龄29[6]岁，平均[标准差]射血分数25.5[10.8]%）在3个在线支持小组中发布的公开叙述。对数据进行编码并按主题组织，以便对这一经历进行详细描述。
诊断经历的特点是女性对其初始症状有清晰的记忆，以及这些症状是被忽视还是得到认真对待。最常报告的症状是极度呼吸急促、端坐呼吸、心动过速、心悸、胸痛、咳嗽和水肿。近40%的女性的症状被医疗服务提供者忽视。四分之一的女性最初被误诊，从“初为人母焦虑症”到哮喘不等。女性将她们对诊断的最初反应描述为感到恐惧、崩溃和末日感。女性在产后难以照顾新生儿，并且她们难以接受不要再怀孕的医疗建议。
尽管患有PPCM的女性经历了严重的主观和客观症状，但近40%的女性的症状被医疗服务提供者忽视，部分原因是怀孕或产后的正常症状与心力衰竭症状存在重叠。
