Understanding the Care Journey and Needs of Advanced Fetal Care Center Patients
- PMID: 35933663
- PMCID: PMC9662245
- DOI: 10.7812/TPP/21.189
Understanding the Care Journey and Needs of Advanced Fetal Care Center Patients
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.
Conflict of interest statement
Figures
Similar articles
-
Parents' experiences of transition when their infants are discharged from the Neonatal Intensive Care Unit: a systematic review protocol.JBI Database System Rev Implement Rep. 2015 Oct;13(10):123-32. doi: 10.11124/jbisrir-2015-2287. JBI Database System Rev Implement Rep. 2015. PMID: 26571288
-
Mapping parents' journey following prenatal diagnosis of CHD: a qualitative study.Cardiol Young. 2023 Aug;33(8):1387-1395. doi: 10.1017/S1047951122002505. Epub 2022 Aug 9. Cardiol Young. 2023. PMID: 35942903 Free PMC article.
-
Parents' Journeys of Mastery and Knowledge Construction After Their Infant's First Stage of Surgery for Complex Congenital Heart Disease.Compr Child Adolesc Nurs. 2024 Mar;47(1):68-81. doi: 10.1080/24694193.2023.2293993. Epub 2024 Feb 8. Compr Child Adolesc Nurs. 2024. PMID: 38090784
-
Feasibility of a RCT of techniques for managing an impacted fetal head during emergency caesarean section: the MIDAS scoping study.Health Technol Assess. 2023 Mar;27(6):1-87. doi: 10.3310/KUYP6832. Health Technol Assess. 2023. PMID: 37022927 Free PMC article.
-
Parental adjustment to intrapartum and delivery room loss. The role of a hospital-based support program.Clin Perinatol. 1989 Dec;16(4):1009-19. Clin Perinatol. 1989. PMID: 2686885 Review.
Cited by
-
Prenatal Psychosocial Distress Screening for Individuals Experiencing Pregnancies Complicated by Fetal Anomalies.J Pers Med. 2025 Jul 18;15(7):322. doi: 10.3390/jpm15070322. J Pers Med. 2025. PMID: 40710439 Free PMC article.
-
Mental health in pregnancy complicated by fetal anomaly: depression screening and referrals in a single fetal care center.J Perinatol. 2025 Jun;45(6):726-731. doi: 10.1038/s41372-024-02118-8. Epub 2024 Sep 17. J Perinatol. 2025. PMID: 39289556
-
Differences in Person-Centered Care in Fetal Care Centers: Results from the U.S. Pilot Study of the PCC-FCC Scale.J Pers Med. 2024 Jul 20;14(7):772. doi: 10.3390/jpm14070772. J Pers Med. 2024. PMID: 39064026 Free PMC article.
-
Role of palliative care in fetal neurological consultations: Guiding through uncertainty and hope.Front Pediatr. 2023 Jun 2;11:1205543. doi: 10.3389/fped.2023.1205543. eCollection 2023. Front Pediatr. 2023. PMID: 37334218 Free PMC article.
-
A Longitudinal Observation of Antenatal Milk Expression in Mothers of Infants with Congenital Anomalies.Breastfeed Med. 2024 Dec;19(12):901-910. doi: 10.1089/bfm.2024.0086. Epub 2024 Oct 9. Breastfeed Med. 2024. PMID: 39382990
References
Publication types
MeSH terms
LinkOut - more resources
Full Text Sources
Medical