Institute of Applied Health Research, University of Birmingham, Birmingham, West Midlands, UK.
Health Services Research Unit, University of Aberdeen, Aberdeen, Aberdeenshire, UK.
Health Expect. 2024 Jun;27(3):e14104. doi: 10.1111/hex.14104.
Over a fifth of pregnant women are living with multiple long-term health conditions, which is associated with increased risks of adverse outcomes for mothers and infants. While there are many examples of research exploring individuals' experiences and care pathways for pregnancy with a single health condition, evidence relating to multiple health conditions is limited. This study aimed to explore experiences and care of women with multiple long-term health conditions around the time of pregnancy.
Semistructured interviews were conducted between March 2022 and May 2023 with women with multiple long-term health conditions who were at least 28 weeks pregnant or had had a baby in the last 2 years, and healthcare professionals with experience of caring for these women. Participants were recruited from across the United Kingdom. Data were analysed using thematic analysis.
Fifty-seven women and 51 healthcare professionals participated. Five themes were identified. Women with long-term health conditions and professionals recognised that it takes a team to avoid inconsistent care and communication, for example, medication management. Often, women were required to take a care navigation role to link up their healthcare providers. Women described mixed experiences regarding care for their multiple identities and the whole person. Postnatally, women and professionals recognised a downgrade in care, particularly for women's long-term health conditions. Some professionals detailed the importance of engaging with women's knowledge, and recognising their own professional boundaries of expertise. Many participants described difficulties in providing informational continuity and subsequent impacts on care. Specifically, the setup of care systems made it difficult for everyone to access necessary information, especially when care involved multiple sites.
Pregnant women with long-term health conditions can experience a substantial burden of responsibility to maintain communication with their care team, often feeling vulnerable, patronised, and let down by a lack of acknowledgement of their expertise. These results will be used to inform the content of coproduction workshops aimed at developing a list of care recommendations for affected women. It will also inform future interventional studies aimed at improving outcomes for these women and their babies.
Our Patient and Public Involvement group were involved in the design of the study and the analysis and interpretation of the data, and a public study investigator was part of the author group.
超过五分之一的孕妇患有多种长期健康状况，这会增加母婴不良结局的风险。虽然有许多研究探讨了个体在单一健康状况下的妊娠经历和护理途径，但关于多种健康状况的证据有限。本研究旨在探讨患有多种长期健康状况的女性在妊娠期间的经历和护理情况。
2022 年 3 月至 2023 年 5 月，我们对至少怀孕 28 周或在过去 2 年内分娩的患有多种长期健康状况的女性以及有照顾这些女性经验的医疗保健专业人员进行了半结构化访谈。参与者来自英国各地。使用主题分析对数据进行分析。
共有 57 名女性和 51 名医疗保健专业人员参与了研究。确定了五个主题。患有长期健康状况的女性和专业人员认识到需要一个团队来避免护理和沟通不一致，例如药物管理。通常，女性需要承担护理导航角色，将她们的医疗保健提供者联系起来。女性描述了在照顾自己的多种身份和整体方面的混合体验。产后，女性和专业人员认识到护理质量下降，特别是对女性的长期健康状况。一些专业人员详细介绍了与女性的知识相契合并认识到自己专业知识界限的重要性。许多参与者描述了提供信息连续性的困难以及对护理的后续影响。具体而言，护理系统的设置使得每个人都难以获取必要的信息，尤其是当护理涉及多个地点时。
患有长期健康状况的孕妇可能会承担相当大的责任，需要与护理团队保持沟通，她们常常感到脆弱、被忽视，并因缺乏对其专业知识的认可而感到失望。这些结果将用于为受影响的女性制定护理建议清单的 coproduction 研讨会提供信息，并为旨在改善这些女性及其婴儿结局的未来干预性研究提供信息。
我们的患者和公众参与小组参与了研究的设计以及数据分析和解释，一名公众研究调查员是作者小组的成员。
