Hutchens Jane, Frawley Jane, Sullivan Elizabeth A
School of Public Health, Faculty of Health, University of Technology Sydney, Ultimo, NSW, Australia.
Faculty of Health and Medicine, University of Newcastle, University Dr, Callaghan, NSW, 2308, Australia.
BMC Pregnancy Childbirth. 2022 May 2;22(1):382. doi: 10.1186/s12884-022-04614-1.
Women with cardiac disease in pregnancy and the first year postpartum often face uncertainty about their condition and the trajectory of their recovery. Cardiac disease is a leading cause of serious maternal morbidity and mortality, and the prevalence is increasing. Affected women are at risk of worsening cardiac disease, chronic illness, mental illness and trauma. This compounded risk may lead to significant and long-term negative outcomes. The aim of this study is to correct the lack of visibility and information on the experiences of women with cardiac disease in pregnancy and the first year postpartum.
A qualitative study using in-depth semi-structured interviews with twenty-five women who had acquired, congenital or genetic cardiac disease during pregnancy or the first year postpartum. Data were analysed and interpreted using a thematic analysis framework.
Analysis of the interviews produced three major themes: 1) Ground zero: index events and their emotional and psychological impact, 2) Self-perception, identity and worthiness, and 3) On the road alone; isolation and connection. There was a narrative consistency across the interviews despite the women being diverse in age, cardiac diagnosis and cardiac health status, parity and timing of diagnosis. The thread prevailing over the temporal and clinical differences was one of distress, biographical disruption, identity, isolation, a necessitated re-imagining of their lives, and the process of multi-layered healing.
Acknowledging and understanding the breadth, complexity and depth of women's experiences is fundamental to improving outcomes. Our findings provide unique insights into women's experiences and challenges across a spectrum of diseases. Most women did not report an isolated trauma or distressing event, rather there was a layering and persistence of psychological distress necessitating enhanced assessment, management and continuity of care beyond the routine 6-week postpartum check. Further research is required to understand long-term outcomes and to refine the findings for specific disease cohorts to be able to respond effectively.
患有心脏病的妊娠及产后第一年的女性常常对自身病情及恢复轨迹感到不确定。心脏病是导致孕产妇严重发病和死亡的主要原因，且患病率呈上升趋势。患病女性有心脏病恶化、慢性病、精神疾病和创伤的风险。这种复合风险可能导致重大且长期的负面后果。本研究的目的是纠正妊娠及产后第一年患有心脏病的女性的经历缺乏可见性和信息的状况。
采用定性研究，对25名在妊娠期间或产后第一年患有后天性、先天性或遗传性心脏病的女性进行深入的半结构化访谈。使用主题分析框架对数据进行分析和解读。
访谈分析产生了三个主要主题：1）归零：索引事件及其情感和心理影响，2）自我认知、身份认同和价值感，3）独自前行；孤立与联系。尽管这些女性在年龄、心脏诊断和心脏健康状况、产次及诊断时间方面存在差异，但访谈中存在叙事上的一致性。贯穿时间和临床差异的主线是痛苦、人生经历的中断、身份认同、孤立、对生活的重新想象以及多层愈合的过程。
认识和理解女性经历的广度、复杂性和深度是改善结局的基础。我们的研究结果为女性在一系列疾病中的经历和挑战提供了独特的见解。大多数女性并未报告孤立的创伤或痛苦事件，相反，心理痛苦是分层且持续存在的，这需要在产后常规6周检查之外加强评估、管理和护理的连续性。需要进一步研究以了解长期结局，并针对特定疾病队列细化研究结果，以便能够有效应对。
