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.
