临床试验背景下的围产期病理学：丧亲父母的态度
Perinatal pathology in the context of a clinical trial: attitudes of bereaved parents.
作者信息
Snowdon C, Elbourne D R, Garcia J
机构信息
Medical Statistics Unit, London School of Hygiene and Tropical Medicine, University of London, Keppel Street, London WC1E 7HT, UK.
出版信息
Arch Dis Child Fetal Neonatal Ed. 2004 May;89(3):F208-11. doi: 10.1136/adc.2003.041392.
BACKGROUND
Interviews with neonatologists in a related study had revealed a degree of discomfort with approaching bereaved parents for postmortem examinations (PMs) and a widespread concern that parents should not be further distressed or feel under pressure to consent.
OBJECTIVE
To report the attitudes of bereaved parents to trial related perinatal PMs, in the light of declining perinatal PM rates and poor levels of participation in pathology studies.
METHODS
A qualitative study was carried out, using semistructured interviews. The study involved 11 interviews with 18 bereaved parents from five UK neonatal units. The parents had consented to the enrolment of their baby in one of two neonatal trials.
RESULTS
The data provide support for the careful approach described by neonatologists in a related study, but also suggest that it may be possible to approach more parents without undermining their wellbeing. The interviews show the variety of reactions to PMs that one would expect, from parents who were clear that they did not want a PM to others who felt that they needed the information from the examination. Between these extremes were parents who were initially discomforted by the idea but who then made the decision to go ahead. Parents who elected to have a PM did so for their own needs, or to contribute to a trial, or for both reasons. The fact that the subject was raised was generally not seen as inappropriate, and none stated that they felt that they were actually pressured into making their decision. The data also suggest that for some parents the degree of caution and selectivity exercised by the neonatologists may not be entirely appropriate. In two cases, consent for the PM was driven by a sense of making an altruistic contribution to research, and, in another two, altruism was expressed in the context of their own desire for information from a PM.
CONCLUSIONS
It is important to determine whether trial related pathology studies are considered by professionals and lay people to be worth while and feasible. If there is support for such studies, the challenge is to develop the means to approach more parents in the most sensitive way.
背景
在一项相关研究中，对新生儿科医生的访谈显示，他们在与丧亲父母商讨尸检（PMs）时会感到一定程度的不适，并且普遍担心父母不应受到进一步的困扰或感到有同意的压力。
目的
鉴于围产期尸检率下降以及参与病理学研究的水平较低，报告丧亲父母对试验相关围产期尸检的态度。
方法
采用半结构式访谈进行定性研究。该研究涉及对来自英国五个新生儿病房的18位丧亲父母进行11次访谈。这些父母已同意将他们的婴儿纳入两项新生儿试验之一。
结果
数据支持了相关研究中新生儿科医生所描述的谨慎做法，但也表明在不损害父母福祉的情况下，有可能接触更多的父母。访谈显示了人们预期的对尸检的各种反应，从明确表示不希望进行尸检的父母到认为自己需要尸检信息的父母。在这两个极端之间，有些父母最初对这个想法感到不适，但随后决定进行尸检。选择进行尸检的父母是出于自身需要，或为了参与试验，或两者皆有。提出这个问题通常不被视为不合适，并且没有人表示他们觉得自己实际上是被迫做出决定的。数据还表明，对于一些父母来说，新生儿科医生所采取的谨慎程度和选择性可能并不完全合适。在两个案例中，同意进行尸检是出于为研究做出利他贡献的意识，在另外两个案例中，利他主义则体现在他们自己希望从尸检中获取信息的背景下。
结论
确定专业人员和非专业人员是否认为试验相关的病理学研究有价值且可行很重要。如果此类研究得到支持，挑战在于开发以最敏感的方式接触更多父母的方法。
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