Parental Perspectives Regarding Outcomes of Very Preterm Infants: Toward a Balanced Approach.

OBJECTIVES: To explore parental perspectives regarding their preterm child at 18 months corrected age and to investigate whether reported answers correlate with level of neurodevelopmental impairment (NDI) as defined by clinicians. We hypothesized that parents would report more negative concerns with increasing level of NDI.

STUDY DESIGN: This study included 190 infants born <29 weeks of gestational age in 2009-2012 at 1 tertiary university health center. Infants underwent detailed developmental assessment at 18 months corrected age, and were classified into either absence or presence of mild to moderate or severe NDI. Parents were asked 2 open-ended questions: "What concerns you most about your child?" and "Please describe the best things about your child." Open-ended questions were analyzed using qualitative methodology.

RESULTS: In this cohort, 49%, 43%, and 8% of participants had no, mild to moderate, and severe NDI. The majority of parents (72.8%) had both positive and negative aspects to report; 26.8% only had positive ones. The main positive themes invoked by parents included their child's personality (61%), happiness (40%), developmental outcome/progress (40%), and physical health (11%). The main themes regarding parental concerns included neurodevelopment (56%), notably language and behavior, and physical health (24%), particularly growth/nutrition and physical fragility. There was no association between positive themes and categories of NDI, but parents of children with mild to moderate NDI reported more concerns about development.

CONCLUSIONS: Neonatal outcome research would benefit from incorporating parental perspectives regarding their child, including negative and positive aspects, enabling physicians to provide complete and balanced information to parents of all preterm infants.