Costs of Neonatal Medical Complexity: Impact on New Parent Stress & Decision Making

Objectives: Parents of children with medical complexity experience substantial financial burdens. It is unclear how NICU clinicians prepare new parents of medically complex infants for this reality. This study explored new parent awareness of healthcare costs, desire to discuss costs with clinicians, and impact of costs on parents' medical decision-making. Study Design: Semistructured interviews and surveys of parents of infants with medical complexity currently or previously in a NICU. Conventional content analysis was performed on interview transcripts and descriptive analyses were applied to surveys. Results: Thematic saturation was reached with 27 families (15 NICU families, 12 Post-NICU families) of diverse race/ethnicity/education/household income. Most were worried about their infants current/future medical expenses and approximately half wanted to discuss finances with clinicians, only one parent had. While finances were not part of most parent's NICU decision-making, some later regretted this and wished cost had been incorporated into treatment choices. Family desire to discuss costs did not vary by family financial status. Parents described their infant's healthcare costs as: We are drowning; and We'll never pay it off. Conclusion(s): Most parents worried about current and future medical expenses related to their infant's evolving medical complexity. Many wanted to discuss costs with clinicians; almost none had. NICU clinicians should prepare families for future financial realities of pediatric medical complexity.