Parent concerns for child development following admission to neonatal intensive or special care: From birth to adolescence

Abstract

Aim: To describe the presence and nature of parent concerns regarding the development of their children admitted to Australian neonatal units(NNUs), comprising neonatal intensive care or special care. Methods: In a cross-sectional survey, mothers and fathers provided information regarding concerns for their child’s development. The self-administered survey was completed by two separate cohorts; (i) parents of child graduates from Australian NNUs (n=381); (ii) parents of infant’sinpatient in two South Australian NNUs (n=209). Data were analysed using thematic analysis and descriptive statistics. Results: Information was provided for 730 children. Developmental concern was reported for 39% of NNU graduates and 35% of inpatients. Chil-dren born very preterm (< 32 weeks’gestation) elicited greater parent concern than those born more mature (Cohort 1: 41% vs 36%; Cohort 2:49% vs 22%), including in multiple developmental domains (Cohort 1: 17% vs 15%; Cohort 2: 28% vs 4%). Parents with inpatient infants were predominantly concerned about general development-milestones (19.1%) and the potential impact of medical or CNS issues (13.7%). Graduate parents commonly focused on specific domains, such as their child’s speech-language (13.7%) and motor (12.9%) development.Conclusion: Neurodevelopment is a substantial source of concern for mothers and fathers during NNU admission and childhood, particularly for children born very preterm. However, in the first year of life, developmental concerns are poorly defined. This highlights the need for clinical education resources detailing infant developmental expectations and supportive strategies for parents of these high-risk infants