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

• Published in: Journal of paediatrics and child health Vol. 58; no. 9; pp. 1539 - 1547
• Main Authors: Bater, Megan L, Stark, Michael J, Gould, Jacqueline F, Anderson, Peter J, Collins, Carmel T
• Format: Journal Article
• Language: English
• Published: Australia John Wiley & Sons Australia, Ltd 01.09.2022; Blackwell Publishing Ltd
• Subjects: Child development; Children & youth; Developmental disabilities; father; infant; Intensive care; neonatal; Neonatal care; Newborn babies; parent concerns; Parents & parenting; Pediatrics; premature; Teenagers; Australia; infant, premature; child development; parent concerns; intensive care, neonatal; father
• ISSN: 1034-4810; 1440-1754
• DOI: 10.1111/jpc.16030

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's inpatient 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. Children 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.