The study, led by Adesola C. Akinkuotu of the University of North Carolina School of Medicine together with colleagues across surgery, neurosurgery, obstetrics, and general medicine, set out to systematically explore how parents experience pre-discharge education, discharge preparedness, and post-discharge support. Rather than measuring outcomes with surveys or administrative data, the researchers turned to the tool best suited for capturing lived experience: the semi-structured qualitative interview. Between 2018 and 2023, they enrolled English-speaking women whose pregnancies were associated with surgically correctable congenital anomalies, whose infants were born alive, and who survived to discharge from a tertiary care children’s hospital. Twenty-two mothers ultimately completed interviews, and their transcripts were subjected to rigorous thematic analysis, a method in which researchers repeatedly read the data, assign codes to meaningful segments, and iteratively group those codes into broader themes that capture shared patterns of experience.

The clinical spectrum represented in the cohort underscores how heterogeneous this population is. Eight infants had congenital diaphragmatic hernia, a defect in the diaphragm that allows abdominal organs to migrate into the chest and compress developing lungs; four had congenital pulmonary airway malformations, cystic lung lesions that can impair breathing and harbor infection risk; five had myelomeningocele, the most severe form of spina bifida, requiring neurosurgical closure and often lifelong management of bladder, bowel, and mobility issues; four had gastroschisis, in which the intestines protrude through a hole in the abdominal wall; and one had an omphalocele, a related abdominal wall defect covered by a membrane. Each condition carries its own distinct care demands after discharge, from gastrostomy tube management to neurogenic bladder catheterization, yet the study found that the educational preparation parents received bore little systematic relationship to those demands.

The first major theme to emerge was a striking lack of consistency in pre-discharge education and preparation. Parents described receiving information in unpredictable bursts, often delivered by whichever nurse or physician happened to be on shift, with no clear curriculum, no written roadmap, and no verification that critical skills had actually been mastered. Some families reported intensive, hands-on teaching sessions in which they practiced tube feedings or stoma care under supervision until they felt competent; others described being handed pamphlets or verbal instructions in the final hours before leaving, leaving them to piece together their infant’s care plan from fragments. This variability is not merely an inconvenience. In the language of health services research, discharge education functions as a safety-critical intervention: when it is delivered haphazardly, the downstream consequences can include medication errors, missed warning signs, emergency department visits, and avoidable readmissions, outcomes that prior studies have documented at elevated rates among infants recovering from surgical congenital anomalies.

The second theme, balancing anxiety and confidence, captures the delicate psychological equilibrium parents must strike as they transition from the controlled environment of the hospital, where a team of specialists monitors their child around the clock, to the isolation of home, where they alone are the first line of defense. Participants described a paradox: the same hospital system that had sustained their infant’s life was now, in its final days, sometimes undermining their confidence by making them feel rushed out the door or by introducing new information too late for them to absorb it. Parents who felt genuinely competent in hands-on skills reported greater confidence, while those who left with unresolved questions described hypervigilance, frequent unnecessary calls to the hospital, and a pervasive fear that they would miss something important. The researchers note that this anxiety is not pathological; it is a rational response to being handed complex medical responsibility with uneven preparation, and it can be mitigated through deliberate educational design.

The third theme centered on the parental need for multi-layered post-discharge support. Once home, families discovered that their needs did not end at the hospital door; rather, they evolved. In the first days, parents wanted rapid access to a knowledgeable clinician who could answer urgent questions about feeding intolerance, wound appearance, or breathing changes. Over subsequent weeks, they needed scheduled follow-up that coordinated the contributions of surgeons, pediatricians, and subspecialists. And over the longer term, they craved peer connection with other parents who had navigated the same diagnosis, as well as practical support with the logistical burdens of care, including equipment, transportation, and insurance. The study’s findings align with a growing body of literature on children with medical complexity showing that transitions home are the most vulnerable point in the care continuum, and that single-point interventions, such as a single follow-up phone call, are insufficient without a layered architecture of support.

Crucially, the fourth theme turned the lens toward solutions. Parents themselves identified concrete opportunities to strengthen the discharge process, and their suggestions map closely onto interventions that have shown promise in other neonatal and pediatric populations. These include standardized, structured discharge curricula delivered consistently across the care team; teach-back methods, in which parents demonstrate skills and explain care instructions in their own words until proficiency is confirmed; simulation-based practice for high-stakes scenarios; written, individualized care plans that families can reference at home; and designated points of contact for post-discharge questions. The authors argue that such interventions may improve parental preparedness and post-discharge confidence, and by extension may reduce the anxiety-driven healthcare utilization and readmissions that impose both emotional and economic costs on families and health systems alike.

The methodological rigor of the study deserves attention. The research team recruited participants over a five-year window, conducted interviews until thematic saturation was approached, and employed multiple coders with established processes for resolving discrepancies, drawing on contemporary guidance for intercoder reliability in qualitative research. The work also builds on the group’s earlier investigation of maternal health literacy and prenatal learning experiences among the same population, published in Prenatal Diagnosis, which documented similar gaps in how women absorb and retain complex diagnostic information during pregnancy. Taken together, the two studies sketch a continuum of educational failure that begins at prenatal diagnosis and extends through discharge, suggesting that the problem is not a single broken handoff but a systemic absence of structured, longitudinal parental education across the entire surgical care pathway.

The broader implications reach well beyond this single cohort of twenty-two mothers. Infants discharged from neonatal intensive care units account for a disproportionate share of pediatric healthcare spending and utilization, and surgical congenital anomalies sit at the expensive, high-acuity end of that spectrum. Professional bodies, including the American Academy of Pediatrics, have long called for structured discharge planning for high-risk neonates, yet implementation remains uneven, and the parental voice has too often been absent from the design of these processes. This study demonstrates that parents are not passive recipients of discharge instructions; they are astute observers of the system’s strengths and failures, and their firsthand accounts offer a practical blueprint. As hospitals increasingly adopt discharge bundles, peer-support programs, and technology-enabled follow-up, the message from these families is clear: standardize the education, verify the skills, and do not let the door close behind them without a layered safety net in place.

Subject of Research: Parental experiences of discharge preparation and preparedness after infant hospitalization for surgically correctable congenital anomalies

Article Title: Parental experiences of discharge preparation and preparedness after infants’ hospitalization for surgically correctable congenital anomalies

Article References: Akinkuotu, A. C., Obayemi, J. E., Johnson, M., Sharpe, J., Knoepp, P., Phillips, M. R., Elton, S., Goodnight, W., McLean, S. E., & DeWalt, D. A. (2026). Parental experiences of discharge preparation and preparedness after infants’ hospitalization for surgically correctable congenital anomalies. Journal of Perinatology. https://doi.org/10.1038/s41372-026-02908-2

Image Credits: AI Generated

DOI: 10.1038/s41372-026-02908-2

Keywords: congenital anomalies, discharge preparation, neonatal intensive care, parental preparedness, qualitative research, congenital diaphragmatic hernia, gastroschisis, myelomeningocele, patient education, post-discharge support, pediatric surgery, health literacy