Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
Multicenter Study
. 2022 Jun 29;26(2):11-20.
doi: 10.7812/TPP/21.189. Epub 2022 Jun 15.

Understanding the Care Journey and Needs of Advanced Fetal Care Center Patients

Affiliations
Multicenter Study

Understanding the Care Journey and Needs of Advanced Fetal Care Center Patients

Stephanie A Eyerly-Webb et al. Perm J. .

Abstract

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.

Keywords: advanced fetal care center; clinical patient journey; fetal diagnoses; patient education; patient perspectives.

PubMed Disclaimer

Conflict of interest statement

Conflicts of Interest: None declared.

Figures

Figure 1:
Figure 1:
Patient journey map identifying the encounters and possible care pathways for patient care managed at an advanced fetal care center. NICU = neonatal intensive care unit.

Similar articles

Cited by

References

    1. Edwards L, Hui L. First and second trimester screening for fetal structural anomalies. Semin Fetal Neonatal Med. 2018;23(2):102–111. 10.1016/j.siny.2017.11.005 - DOI - PubMed
    1. Moise KJ Jr. The history of fetal therapy. Am J Perinatol. 2014;31(7):557–566. 10.1055/s-0033-1364191 - DOI - PubMed
    1. Kett JC, Woodrum DE, Diekema DS. A survey of fetal care centers in the United States. J Neonatal Perinatal Med. 2014;7(2):131–135. 10.3233/NPM-14814005 - DOI - PubMed
    1. Johnston RC, Haeri S, Hale RT, Lindsley W, McCormick A, Su E. The value of implementing multidisciplinary perinatal care conference in the private practice setting. AJP Rep. 2017;7(4):201–204. 10.1055/s-0037-1608640 - DOI - PMC - PubMed
    1. Moise KJ Jr, Johnson A, Tsao K. Certification process of fetal centers in Texas and developing national guidelines. Obstet Gynecol. 2020;135(1):141–147. 10.1097/AOG.0000000000003599 - DOI - PubMed

Publication types