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在哮喘研究的侵入性程序中,幼儿几乎没有情绪负担。

Young children experience little emotional burden during invasive procedures in asthma research.

机构信息

Pediatric Respiratory Medicine, Emma Children's Hospital, Amsterdam UMC, Amsterdam, The Netherlands.

Department of Pediatrics, Amsterdam UMC, de Boelelaan 1112, NL-1081 HV, Amsterdam, The Netherlands.

出版信息

Eur J Pediatr. 2019 Feb;178(2):207-211. doi: 10.1007/s00431-018-3265-0. Epub 2018 Nov 3.

Abstract

Research in children should strike the right balance between protecting underage study subjects and advancing the medical field. This study gives insight into the emotional burden that common invasive research procedures in asthma research have on young children, both from the child and parent perspective. Puppetry was used to stimulate children (age 5-6 years) to explain their emotional burden prior to and after the research procedures. We operationalised emotional burden as willingness to participate in future research and reluctance towards participation. Parents filled out a questionnaire on this topic. Symptomatic patients as well as healthy controls were analysed. Forty-one children were included. Children's anticipatory fear for future research showed a clear decrease of 0.7 ± 1.6 on a 5-point Likert scale as a consequence of participation (p = 0.02). Sixty percent of all participating children explicitly indicated willingness to undergo identical research procedures again. Children uninformed by their parents about the venipuncture were significantly more reluctant to the venipuncture after the procedure (p < 0.01), compared to children who had been informed (4.0 ± 0.9 resp. 2.8 ± 1.2).Conclusion: This study suggests that the emotional burden of participation in asthma research for underage children can be prevented when they are properly informed and decreases as a consequence of participations. We believe increased emphasis should be placed on informing children and evaluating the emotional impact of research to help caretakers and research ethics committees make informed decisions about participation of children in medical research. What is Known: • Medical professionals and parents are likely to overestimate children's discomfort undergoing (invasive) research procedures. • Two thirds of children (age 6-18 years) participating in medical research indicated that they would participate in the same research study again. What is New: • Pre-school children experience little emotional burden during invasive procedures in asthma research. • Proper communication about (invasive) research procedures in pre-school children helps to reduce the anticipatory fear of these procedures in the future.

摘要

研究应当在保护未成年研究对象和推进医学领域之间取得适当平衡。本研究深入探讨了常见的哮喘研究中侵入性研究程序给儿童和家长带来的情绪负担。我们使用木偶来激发儿童(5-6 岁),让他们在研究程序前后解释自己的情绪负担。我们将情绪负担定义为参与未来研究的意愿和对参与的不情愿。家长填写了关于该主题的问卷。对症状患者和健康对照进行了分析。共纳入 41 名儿童。由于参与,儿童对未来研究的预期恐惧明显下降了 0.7±1.6(p=0.02),在 5 分制的 Likert 量表上。所有参与研究的儿童中有 60%明确表示愿意再次接受相同的研究程序。与未被告知静脉穿刺术的儿童相比,在程序后,未被告知的儿童对静脉穿刺术明显更不情愿(p<0.01),而被告知的儿童分别为 4.0±0.9 和 2.8±1.2。结论:本研究表明,当未成年儿童得到适当告知并因参与而减少时,可防止他们参与哮喘研究的情绪负担。我们认为,应该更加重视告知儿童,并评估研究的情绪影响,以帮助照顾者和研究伦理委员会就儿童参与医学研究做出明智的决策。已知:• 医疗专业人员和家长可能会高估儿童在进行(侵入性)研究程序时的不适程度。• 三分之二(6-18 岁)参与医学研究的儿童表示,他们将再次参与相同的研究。新发现:• 学龄前儿童在哮喘研究中的侵入性程序中几乎没有情绪负担。• 对学龄前儿童进行适当的(侵入性)研究程序沟通有助于减少他们对未来这些程序的预期恐惧。

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本文引用的文献

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Using puppetry to elicit children's talk for research.
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