The lasting impact of NICU admission on the parents of children with non-cardiac congenital anomalies: trauma, mental health, and unmet support needs 5-16 years following discharge

Background Despite growing evidence that interventions targeting parental distress are associated with improved outcomes in families of children with life-threatening conditions, mental health research is limited for parents of NICU graduates treated for non-cardiac congenital anomalies. Aims To examine the prevalence and severity of mental health difficulties and post-traumatic stress, including subthreshold trauma-related distress, in these parents. Method Participants were 103 parents (n=86 female) of children, aged 5-16 years, who were treated in the NICU for non-cardiac congenital anomalies (e.g., congenital diaphragmatic hernia [CDH], tracheo-oesophageal fistula and/or oesophageal atresia [TOF-OA], abdominal wall defects) at a large tertiary-level paediatric hospital in Australia. Validated measures of mental health (DASS-21) and post-traumatic stress (PCL-5) were administered using an online cross-sectional survey. Whole group and diagnostic subgroup scores were compared with normative data. Comparisons between parents of primary school and high school-aged children enabled the examination of differences in unmet support needs according to their child's developmental stage. Results Seventy-four percent of parents reported experiencing mental health difficulties since their child's congenital anomaly diagnosis, yet only 44.7% had accessed professional mental health support. The mean DASS-21 'Stress' score was significantly elevated relative to Australian population norms (p<0.0005). Scores on the PCL-5 indicated that 9.4% met DSM-5 criteria for provisional PTSD diagnoses and a further 20.8% met subthreshold PTSD criteria. Importantly, 50% of parents reporting subthreshold PTSD had not accessed professional psychological support. Mental health concerns appeared more prominent among parents of children with TOF-OA and CDH, as well as parents of high school-aged children. Conclusions Parents report elevated stress and clinically meaningful subthreshold PTSD symptoms long after their child's NICU discharge, yet many do not access formal support. These findings highlight the importance of trauma-informed approaches to ongoing mental health surveillance and support for parents of NICU graduates with non-cardiac congenital anomalies.