Quality of life in parents of preterm infants in a randomized nutritional intervention trial

BACKGROUND Being a parent of a very-low birth weight (VLBW, birth weight <1,500 g) infant is challenging because of the numerous complications these infants may encounter, many of which are caused by inadequate nutrition. Whether the burden to the parents increases when their VLBW infant participates in a randomized intervention trial (RCT) and is thus exposed to additional risk is unknown. OBJECTIVE To examine parental qualify of life (QoL) and well-being after participation of their VLBW infants in a nutrition RCT. DESIGN QoL and symptoms associated with well-being of parents of VLBW infants participating in a nutrition RCT (n=31) and of a reference group (parents of nonparticipating VBLW infants, n=31) were examined. Assessments were performed when their infants were in the neonatal intensive care unit (NICU) (time point T1) and concurrently at 3.5 years of age (time point T2). The parents completed the following questionnaires: Quality of Life Scale, Hospital Anxiety and Depression Scale, Lee Fatigue Scale (LFS), and General Sleeping Disturbance Scale (GSDS). RESULTS At T1, the QoL was better among RCT parents (p=0.02). At T2, the RCT parents reported less sleep disturbance symptoms (GSDS) (p=0.03) and more energy (LFS) (p=0.03). CONCLUSION The RCT participation of VLBW infants may have improved parental QoL. While in the neonatal unit, symptoms of anxiety and depression were common among all parents. The high incidence of anxiety and depression in parents must be considered in the care of parents in the NICU. Long-term effects of participation seem to be less sleep problems and more energy.