Resilience Rather than Medical Factors: How Parents Predict Quality of Life of Their Sick Newborn

Abstract

Objective: To assess the influence of resiliency and stress on parental perspectives of the future quality of life (QOL) of neonatal intensive care unit (NICU) newborns at high risk of neurodevelopmental disability.

Study design: We conducted a prospective multicenter questionnaire study. Perspectives from parents of newborns at high risk of disability as per neonatal follow-up criteria were compared with a low-risk group consisting of parents of all other NICU newborns. Parental anxiety and resiliency, measured using Brief Symptom Inventory and Sense of Coherence scales, respectively, were associated with QOL projections.

Results: Parents returned 129 (81%) questionnaires. Parents considering their newborn as currently sicker were more stressed (P = .011) and worried about future physical (P < .001) and mental (P < .001) health, QOL (P < .001), coping (P = .019), and financial (P < .001) and emotional (P = .002) impact on the family. Ooverall, there was no difference between parents of high-risk and low-risk newborns on QOL projections. Almost all parents projected a good future QOL. Less resilient parents projected more pain (P = .04), more financial (P = .019), and emotional (P = .031) impact on their family, and were 10 times more likely to predict that their newborn would remain chronically ill.

Conclusions: Parental projection of future QOL of NICU newborns is not associated with risk of disability. Most parents predict overall a good future QOL and focus more on familial impact. The Sense of Coherence scale may be used in clinical settings to identify less resilient parents.

Keywords: brief symptom inventory; child; critical decisions; ethics; functional impairment; future prediction; handicap; neonatal intensive care unit; neonate; neonatology; neurodevelopmental outcomes; resilience; sense of coherence; stress.