Parental perspectives of outcomes following very preterm birth: Seeing the good, not just the bad

Aim To describe parental perspective on health and developmental outcomes of their preterm child in relation to level of neurodevelopmental impairment (NDI). Methods A parental survey about their children aged 15–36 months corrected age born ˂29 weeks' gestation investigated parental concerns a...

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Bibliographic Details
Published in:Acta Paediatrica 2023-03, Vol.112 (3), p.398-408
Main Authors: Milette, Audrey‐Anne, Richter, Lindsay L., Bourque, Claude Julie, Janvier, Annie, Pearce, Rebecca, Church, Paige Terrien, Synnes, Anne, Luu, Thuy Mai
Format: Article
Language:English
Subjects:
Child
Children
Children & youth
Female
Gestational Age
Humans
Infant
Infant, Newborn
Infant, Premature
Infant, Premature, Diseases
neonatal follow‐up
neonatal outcome
Neonates
neurodevelopment
Neurodevelopmental disorders
parental perspective
Parents
Parents & parenting
Premature birth
Premature Birth - epidemiology
preterm birth
Social interactions
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Summary:Aim To describe parental perspective on health and developmental outcomes of their preterm child in relation to level of neurodevelopmental impairment (NDI). Methods A parental survey about their children aged 15–36 months corrected age born ˂29 weeks' gestation investigated parental concerns and positive attributes. Parental responses in relation to their child's level of NDI were examined using Kruskal‐Wallis and chi‐square for trend tests. Results One hundred ninety‐nine parental responses were obtained for 163 children, including 44% with NDI. Vast majority of parents reported their children were developing well with good physical health. All parents, irrespective of NDI, reported their children were happy and had a positive personality. Appreciation of social interactions was higher for parents of children without versus with NDI (96% vs. 87%, p = 0.039). Parents of children with NDI were more likely to express concerns than those without NDI. Overall, development was the most common area of concern (45%), followed by the child's future (40%) and physical health (35%). Conclusion Parents of preterm children report many positive points and concerns, some of which are not examined in neonatal follow‐up data. These parental perspectives could be used to inform parents of preterm infants, both antenatally and in the neonatal unit.
ISSN:0803-5253
1651-2227
DOI:10.1111/apa.16616