Department of pediatrics, Centre Hospitalier Universitaire Sainte-Justine, Montreal, Québec, Canada.
Clinical Ethics Unit, Centre Hospitalier Universitaire Sainte-Justine, Montreal, Québec, Canada.
Arch Dis Child Fetal Neonatal Ed. 2022 Sep;107(5):495-500. doi: 10.1136/archdischild-2021-322711. Epub 2021 Nov 23.
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.
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.
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)).
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.
新生儿结局研究和临床随访主要关注科学界定义的极早产儿（<29 孕周）的神经发育障碍（NDI），而没有父母的意见。本研究旨在调查父母对其早产儿健康和发育的看法。我们还询问了他们一个问题：“如果可以改善孩子的两件事情，您会选择什么？”使用混合方法分析了这些回答。使用逻辑回归比较了父母的回答。
在为期 1 年的时间内，对在新生儿随访诊所就诊的年龄在 18 个月至 7 岁之间、出生<29 孕周的 213 名儿童的 248 位父母进行了调查，要求他们评估自己孩子的健康和发育状况。他们还被问到：“如果可以改善孩子的两件事情，您会选择什么？”使用混合方法分析了这些回答。使用逻辑回归比较了父母的回答。
共招募了 213 名儿童的 248 位父母（平均胎龄为 26.6±1.6 周，20%有严重的 NDI）。父母对孩子的健康状况评价中位数为 9/10。父母希望改善健康状况的首要目标是（1）发育，主要是行为、情绪健康和语言/交流（55%）；（2）呼吸健康和整体医疗脆弱性（25%）；（3）喂养/生长问题（14%）。19%的父母明确表示“没有需要改善的地方”。如果孩子没有（而非严重）NDI（OR 4.33（95%CI 1.47 至 12.75））或父母没有（而非至少有高中文凭）（OR 4.01（95%CI 1.99 至 8.10）），父母更有可能表示“没有需要改善的地方”。
父母认为自己的早产儿健康状况非常好，并且对孩子的未来持积极态度。在临床随访和研究中，还应关注父母关心的发育领域以外的问题。
