Abstract

BackgroundLittle is known about the quality of life of parents and families of preterm infants after discharge from the neonatal intensive care unit (NICU). Our aims were (1) to describe the impact of preterm birth on parents and families and (2) and to identify potentially modifiable determinants of parent and family impact.MethodsWe surveyed 196 parents of preterm infants <24 months corrected age in 3 specialty clinics (82% response rate). Primary outcomes were: (1) the Impact on Family Scale total score; and (2) the Infant Toddler Quality of Life parent emotion and (3) time limitations scores. Potentially modifiable factors were use of community-based services, financial burdens, and health-related social problems. We estimated associations of potentially modifiable factors with outcomes, adjusting for socio-demographic and infant characteristics using linear regression.ResultsMedian (inter-quartile range) infant gestational age was 28 (26–31) weeks. Higher Impact on Family scores (indicating worse effects on family functioning) were associated with taking ≥3 unpaid hours/week off from work, increased debt, financial worry, unsafe home environment and social isolation. Lower parent emotion scores (indicating greater impact on the parent) were also associated with social isolation and unpaid time off from work. Lower parent time limitations scores were associated with social isolation, unpaid time off from work, financial worry, and an unsafe home environment. In contrast, higher parent time limitations scores (indicating less impact) were associated with enrollment in early intervention and Medicaid.ConclusionsInterventions to reduce social isolation, lessen financial burden, improve home safety, and increase enrollment in early intervention and Medicaid all have the potential to lessen the impact of preterm birth on parents and families.

Highlights

  • Little is known about the quality of life of parents and families of preterm infants after discharge from the neonatal intensive care unit (NICU)

  • In a previous study of former preterm infants, we showed that the Motor and Social Development (MSD) has good internal consistency (Cronbach alpha 0.65-0.88) and is modestly correlated with Bayley Scales of Infant and Toddler Devleopment, 3rd edition, a gold standard professionally administered neurodevelopmental test [56]

  • Unadjusted associations of predisposing characteristics with outcomes As shown in Table 1, among pre-disposing characteristics, the use of medical technology, receipt of at least one prescription medication daily, one or more readmission or emergency department visit after neonatal discharge, and 2 or more clinic appointments per month were all associated with greater impact on family, parents, or both

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Summary

Introduction

Little is known about the quality of life of parents and families of preterm infants after discharge from the neonatal intensive care unit (NICU). In the United States, nearly 500,000 infants, or 11.7% of all live births, are born preterm (

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