THE IMPACT OF VERY-LOW-BIRTH-WEIGHT INFANTS ON THE FAMILY IS LONG-LASTING - A MATCHED CONTROL STUDY

Objective: To test the hypothesis that parental stress associated with long-term morbidity of very low-birthweight infants (VLBWIs) is long lasting. Design: Matched case-control study. Setting: High-risk newbor n follow-up program, Winnipeg, Manitoba. Participants: Parents of 96 M anitoban VLBWIs born from July 1986 through June 1990, compared with p arents of full-term controls matched for age, sex, race, domicile, sin gleton or multiple pregnancy, and birth order. Main Outcome Measures: Mailed questionnaire, including Stein's Impact on Family Scale, positi ve impact of parenthood, and attitudes toward treating VLBWIs. Results : Families were demographically similar. The parents of VLBWIs had hig her scores for financial burden, familial/social impact, personal stra in, and mastery (P<.0001). The parents of VLBWls experienced more impa ct when children had a functional handicap or low adaptive development al quotient. Scores were highest when the adaptive developmental quoti ent was 70 to 85. High scores were associated with low family income a nd less parental education. Impact did not change over time. Only half of the parents in each group felt that ''doctors should try to save e very baby.'' The parents of VLBWIs felt more strongly that cost should never enter into the decision to treat a tiny baby (P<.005). The fami lies of VLBWIs expressed a stronger desire for more children (P<.01), but control families were more likely to have given birth again (46.3% vs 28.2%).Conclusions: The birth and upbringing of a VLBWI is associa ted with more long-term stress, even for well-educated nuclear familie s whose health care is financed by government. Caregivers need increas ed awareness of the needs of these families so that their medical and social needs are met effectively. Support services should be targeted toward low income, poorly educated parents whose children have functio nal handicaps.