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竭尽所能帮助高危新生儿:一项以生活世界为导向的质性研究,探讨脑瘫早期风险评估对父母的意义。

Doing Everything We Can to Help Our High-Risk Newborns: A Qualitative, Lifeworld-Led Study of What Early Risk Assessment for Cerebral Palsy Means to Parents.

作者信息

Åberg Kristin Bjørnstad, Dahlberg Karin, Størvold Gunfrid Vinje, Støen Ragnhild, Adde Lars

机构信息

Department of Clinical and Molecular Medicine, Norwegian University of Science and Technology, 7491 Trondheim, Norway.

Department of Pediatrics and Habilitation, Levanger Hospital, Levanger, Nord-Trøndelag Hospital Trust, 7601 Levanger, Norway.

出版信息

J Clin Med. 2025 Apr 16;14(8):2740. doi: 10.3390/jcm14082740.

Abstract

Early predictive assessments for CP are recommended for infants with medical risk factors after birth. For parents of children with CP, receiving an early diagnosis is important. But most children with risk factors who have not yet developed CP are labeled "high-risk infants" and repeatedly assessed for abnormal signs. We aim to investigate the experience of parents of high-risk infants and describe the meaning that "early predictive assessments for CP" has for them before they know whether their children have CP. This was a qualitative study conducted using a phenomenological, reflective lifeworld approach. Fourteen individual in-depth interviews were conducted with parents who received different GMA results to learn about their experiences involving early predictive assessments. The interviews were analyzed for meaning. Early predictive assessments take place over time while parents process the traumatic experience of becoming parents to an infant at risk. "Early predictive assessment" is perceived as any examination or assessment intended to unveil signs of illness or disability. The child's future well-being and fulfillment, and the demands of parenthood, are at stake. Essential meaning structures are (1) on a spectrum from death to insignificancies, (2) living with uncertainty of what the parental role will entail, and (3) seeing one's own child through the eyes of strangers, just in case. For months following the birth of a high-risk child, parents experience uncertainty and worrying, affecting the parent-infant relationship. Predictive assessments reduce their sense of alarm when the GMA result indicates a low risk of CP. But when the GMA result is uncertain, the burden of uncertainty is amplified and prolonged.

摘要

建议对出生后有医学风险因素的婴儿进行脑瘫早期预测评估。对于脑瘫患儿的父母来说,获得早期诊断很重要。但大多数有风险因素但尚未发展为脑瘫的儿童被贴上“高危婴儿”的标签,并反复接受异常体征评估。我们旨在调查高危婴儿父母的经历,并描述“脑瘫早期预测评估”在他们知道孩子是否患有脑瘫之前对他们的意义。这是一项采用现象学反思生活世界方法进行的定性研究。对14位接受不同全身运动评估(GMA)结果的父母进行了个人深度访谈,以了解他们参与早期预测评估的经历。对访谈内容进行了意义分析。早期预测评估是在父母经历成为高危婴儿父母的创伤性过程中逐步进行的。“早期预测评估”被视为任何旨在揭示疾病或残疾迹象的检查或评估。孩子未来能否幸福美满以及为人父母的责任都危在旦夕。基本的意义结构包括:(1)处于从死亡到微不足道的连续体上;(2)生活在对父母角色所包含内容的不确定性之中;(3)以防万一,通过陌生人的视角看待自己的孩子。在高危儿童出生后的几个月里,父母会经历不确定性和担忧,这会影响亲子关系。当全身运动评估结果显示脑瘫风险较低时,预测评估会减轻他们的警觉感。但当全身运动评估结果不确定时,不确定性带来的负担会加剧且持续时间更长。

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