Midwest Fetal Care Center, Minneapolis, MN, USA.
Worrell Inc, Minneapolis, MN, USA.
Perm J. 2022 Jun 29;26(2):11-20. doi: 10.7812/TPP/21.189. Epub 2022 Jun 15.
Introduction This study describes the parental perspective of the management and care experience of patients experiencing a pregnancy complicated by a fetal diagnosis to inform more supportive patient-centered care. Methods We conducted a prospective multicenter qualitative patient experience study at three metropolitan children's hospitals' advanced fetal care centers: the Cincinnati, Colorado, and Midwest Fetal Care Centers. Data were collected from pregnant patients who experienced the management of a pregnancy complicated by a fetal anomaly. Clinical journey data were obtained using qualitative research methods in post-birth semistructured interviews. We assembled a generalizable patient journey map to identify the general clinical encounters, and present common participant experiences from diagnosis to post-birth discharge. Results Fifteen families were interviewed; four experienced a loss (27%). Common experiences of trust, education, surrounding support, consistency, and abandonment emerged across all centers. Participant trust in their care team was gained through strong referrals, institutional reputation, and transparent outcomes. Unconditional care team support and continual reassurance was paramount to maintaining participant trust throughout their care journey. Participants appreciated both active and passive educational techniques at clinical touch points. A consistent point of contact assured participants. All families mentioned they felt close to their fetal care team; however, several mentioned that the post-birth transition of care created feelings of abandonment. Conclusions When a family understands the clinical information and feels supported, they are empowered and confident in their ability to navigate their circumstances. Listening to the parental perspective is important to delivering sensitive fetal care.
介绍 本研究描述了父母对妊娠合并胎儿诊断患者管理和护理体验的看法，旨在提供更具支持性的以患者为中心的护理。
方法 我们在三家大都市儿童医院的先进胎儿护理中心（辛辛那提、科罗拉多和中西部胎儿护理中心）进行了一项前瞻性多中心患者体验定性研究。数据来自经历妊娠合并胎儿异常管理的孕妇。使用出生后半结构化访谈中的定性研究方法收集临床旅程数据。我们组装了一个可推广的患者旅程图，以确定一般的临床遭遇，并展示从诊断到产后出院的常见参与者体验。
结果 对 15 个家庭进行了访谈，其中 4 个家庭经历了流产（27%）。在所有中心，都出现了信任、教育、周围支持、一致性和被抛弃的共同经历。参与者对护理团队的信任是通过强有力的推荐、机构声誉和透明的结果获得的。无条件的护理团队支持和持续的保证对于维护参与者在整个护理过程中的信任至关重要。参与者欣赏临床接触点的主动和被动教育技巧。一个始终如一的联系人让参与者感到安心。所有家庭都表示他们与胎儿护理团队关系密切，但也有几个家庭表示产后护理过渡让他们感到被抛弃。
结论 当一个家庭了解临床信息并感到得到支持时，他们就会获得权力和信心，能够驾驭自己的处境。倾听父母的观点对于提供敏感的胎儿护理很重要。
