Abstract
Objective Parents of children with medical complexity experience substantial financial burdens.
It is unclear how neonatal intensive care unit (NICU) clinicians prepare new parents
of medically complex infants for this reality. This study explored new parent awareness
of health care costs, desire to discuss costs with clinicians, and impact of costs
on parents' medical decision-making.
Study Design The study design comprised 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 and 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. The family desire to discuss costs did
not vary by family financial status. Parents described their infant's health care
costs as: “We are drowning”; and “We'll never pay it off.”
Conclusion Most parents were 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 the future financial
realities of pediatric medical complexity.
Key Points
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Many families want to discuss costs with NICU clinicians.
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Some families want costs to be a part of medical decisions.
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Few families currently discuss costs with NICU providers.
Keywords
NICU - medical complexity - health care costs - family decision-making
