Impact of very low birth weight infants on the family and its relationship to parental attitudes.

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.