Lee S K, Penner P L, Cox M
Discipline of Paediatrics, Memorial University of Newfoundland, St John's, Canada.
Pediatrics. 1991 Jul;88(1):105-9.
This study tested common assumptions that very low birth weight (VLBW) infants (less than 1500 g) adversely affected families and that if affected parents could choose again, they would prefer not to save potentially handicapped VLBW infants. A survey of parents, which used a validated impact-on-family questionnaire, was sent to families of all 144 traceable VLBW infants (72.2% response), and families of 25 randomly selected healthy term infants (60% response), born in Newfoundland between 1983 and 1987 (median age 36.5 months, range 12 to 71 months). This revealed that families with developmentally delayed VLBW infants perceived no worse impact on the family than those with healthy term infants. Families with developmentally normal VLBW infants perceived a more positive family impact than the other two groups (P less than .05). Most parents of both VLBW and healthy term infants supported saving all infants regardless of outcome (greater than 80%), believed that parents should be the principal decision makers regarding treatment decisions (greater than 92%), and supported the role of physicians (greater than 59%), but not nurses, ethics committees, or other regulatory bodies, in this decision. For the VLBW group, parental attitudes toward saving VLBW infants were related to their perceptions of family impact (P less than .05) but independent of sociodemographic factors or of the developmental normality of the infant. It is concluded that VLBW infants did not adversely affect these Newfoundland families or change their attitudes toward saving potentially handicapped infants. In the current debate about whether VLBW infants should be saved, cognizance must be taken of parental desires.
本研究检验了一些常见假设，即极低出生体重（VLBW）婴儿（体重低于1500克）会对家庭产生不利影响，以及如果受影响的父母可以再次选择，他们会更倾向于不挽救可能有残疾的极低出生体重婴儿。一项针对父母的调查使用了经过验证的家庭影响问卷，被发送给了1983年至1987年在纽芬兰出生的所有144名可追踪的极低出生体重婴儿的家庭（回复率72.2%），以及25名随机选择的健康足月儿家庭（回复率60%）（中位年龄36.5个月，范围12至71个月）。这表明，发育迟缓的极低出生体重婴儿家庭认为对家庭的影响并不比健康足月儿家庭更差。发育正常的极低出生体重婴儿家庭认为家庭影响比其他两组更积极（P小于0.05）。极低出生体重婴儿和健康足月儿的大多数父母都支持挽救所有婴儿，无论结果如何（超过80%），认为父母应该是治疗决策的主要决策者（超过92%），并支持医生在这一决策中的作用（超过59%），但不支持护士、伦理委员会或其他监管机构的作用。对于极低出生体重婴儿组，父母对挽救极低出生体重婴儿的态度与他们对家庭影响的认知有关（P小于0.05），但与社会人口统计学因素或婴儿的发育正常情况无关。研究得出结论，极低出生体重婴儿并没有对这些纽芬兰家庭产生不利影响，也没有改变他们对挽救可能有残疾婴儿的态度。在当前关于是否应该挽救极低出生体重婴儿的辩论中，必须考虑到父母的意愿。
