Vores dygtige kollegaer i neonatologien bliver fortsat dygtigere og dygtigere til at rede vores mindste patienter og i kølevandet følger etiske overvejelser. Dette nyligt publicerede studie inkluderer 248 forældre til børn født før uge 29, når de kommer i ambulatoriet med deres ex-immature børn, som nu er blevet 1,5 til 7 år. Forældrene bedes vurdere deres børns helbred samt udvikling og de stilles følgende spørgsmål "if you could improve two things about your child, what would they be?"
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Parental perspective on important health outcomes of extremely preterm infants
Jaworski et al.
Archives of Disease in Childhood. Fetal and Neonatal Edition, 2021
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Abstract
Background and objective: Neonatal outcome research and clinical follow-up principally focus on neurodevelopmental impairment (NDI) after extremely preterm birth, as defined by the scientific community, without parental input. This survey aimed to investigate parental perspectives about the health and development of their preterm children.
Methods: Parents of children aged 18 months to 7 years born <29 weeks' gestational age presenting at a neonatal follow-up clinic over a 1-year period were asked to evaluate their children's health and development. They were also asked the following question: 'if you could improve two things about your child, what would they be?' Responses were analysed using mixed methods. Logistic regressions were done to compare parental responses.
Results: 248 parents of 213 children (mean gestational age 26.6±1.6 weeks, 20% with severe NDI) were recruited. Parents evaluated their children's health at a median of 9/10. Parental priorities for health improvements were (1) development, mainly behaviour, emotional health and language/communication (55%); (2) respiratory heath and overall medical fragility (25%); and (3) feeding/growth issues (14%). Nineteen per cent explicitly mentioned 'no improvements'. Parents were more likely to state 'no improvements' if child had no versus severe NDI OR 4.33 (95% CI 1.47 to 12.75)) or if parents had no versus at least a high school diploma (OR 4.01 (95% 1.99 to 8.10)).
Conclusions: Parents evaluate the health of their preterm children as being very good, with positive perspectives. Parental concerns outside the developmental sphere should also be addressed both in clinical follow-up and research.