Parent preferences for neurodevelopmental screening in the neonatal intensive care unit
Parent preferences for neurodevelopmental screening in the neonatal intensive care unit
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DOI：
10.1111/dmcn.14457
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发表时间：
2020-01-07
影响因子：
3.8
通讯作者：
Lemmon, Monica E.
中科院分区：
文献类型：
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作者：
Dorner, Rebecca A.;Boss, Renee D.;Lemmon, Monica E.
目的确定新生儿重症监护病房(NICU)的父母是否以及如何接受有关其孩子未来脑瘫和其他残疾风险的早期神经发育筛查信息。方法定性访谈研究。住院早产儿的父母完成了半结构式访谈。使用定向内容分析方法对数据进行分析。结果经过19次访谈，达到主题饱和。父母对早期神经发育筛查的看法有四个主题：(1)可接受性：如果父母可以拒绝，大多数父母赞成进行神经发育筛查；(2)结果的披露：父母希望为结果做好情感准备，特别是假阳性；(3)不确定性的情绪负担：NICU平衡中的孩子的父母‘每天’接受他们婴儿的疾病，并为不确定的未来做准备。父母对筛查表示苦恼，因为筛查增加了对未来的不确定性；以及(4)残疾：先前的残疾经验告知父母的担忧。父母通过既往残疾经历的视角来解释NICU发育筛查的风险和好处。大多数人表达了对筛查的兴趣，并强调了自主、考试前咨询和情绪准备的愿望。本文补充内容新生儿重症监护病房中大多数有婴儿的父母表示对早期筛查发育障碍感兴趣。以前的残疾经验使人们对具体的缺陷感到担忧。家长们强调的是自主、考试前咨询和情绪准备的愿望。
Aim To determine whether, and how, neonatal intensive care unit (NICU) parents want to receive early neurodevelopmental screening information about their child's future risk of cerebral palsy and other disabilities. Method This was a qualitative interview study. Parents of hospitalized infants born preterm completed semi-structured interviews. Data were analysed using a directed content analysis approach. Results Thematic saturation was achieved after 19 interviews. Four themes characterized parent perceptions of early neurodevelopmental screening: (1) acceptability: most parents were in favour of neurodevelopmental screening if parents could refuse; (2) disclosure of results: parents want emotional preparation for results, especially false positives; (3) emotional burden of uncertainty: parents of children in the NICU balance taking their infant's illness 'day by day' and preparing for an uncertain future. Parents expressed distress with screening that increased uncertainty about the future; and (4) disability: prior experience with disability informs parent concerns. Interpretation Parents interpret the risks and benefits of NICU developmental screening through the lens of prior experiences with disability. Most expressed interest in screening and emphasized a desire for autonomy, pretest counselling, and emotional preparation. What this paper addsMost parents with infants in the neonatal intensive care unit expressed interest in early screening for developmental disability. Prior experience with disability informed concerns about specific deficits. Parents emphasized a desire for autonomy, pretest counselling, and emotional preparation.