A qualitative study on the real experience and healthcare needs of pregnant women undergoing intrauterine fetal therapy

Abstract Background Based on the concept that a fetus is also a human being and a fetus with illness is also a patient, fetal intrauterine treatment is booming in China. However, due to the particularity of the fetus still being inside the mother's uterus and the complex and diverse prognosis of fetal intrauterine treatment, pregnant women who undergo intrauterine treatment often experience a variety of complex emotions and unmet healthcare needs. Objective To explore the lived experiences and healthcare needs of pregnant patients receiving intrauterine fetal therapy to inform evidence-based care improvements. Methods A phenomenological qualitative study was conducted using purposive sampling to recruit 12 pregnant patients who received intrauterine fetal therapy at a tertiary hospital fetal medicine department in Shanghai between January-April 2025. Semi-structured interviews lasting 20–55 minutes were conducted and analyzed using Colaizzi’s 7-step phenomenological method. All participants provided informed consent under ethics approval XHEC-QT-2025-156. Results Three primary themes emerged from data analysis: (1) Clinical and systemic challenges including complex cross-regional referral processes, prolonged multidisciplinary consultation requirements, information gaps between healthcare providers and patients, and substantial economic burden with costs reaching 2 million yuan for fetal preservation and neonatal care; (2) Complex psychological states characterized by emotional cycles of shock, fear, guilt, anxiety, and alternating hope and despair throughout treatment decision-making and implementation; (3) Unmet healthcare needs encompassing medical information accessibility, family support systems, and care continuity across obstetric and neonatal services. Conclusions Pregnant patients undergoing intrauterine fetal therapy experience significant clinical, psychological, and informational challenges. Healthcare systems require enhanced multidisciplinary coordination, standardized patient education protocols, and comprehensive support services spanning prenatal through neonatal care phases. Implementation of these evidence-based recommendations may improve patient satisfaction and treatment outcomes.