The Impact of Very Low-Birth-Weight Infants on the Family Is Long Lasting

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Abstract
Objective: To test the hypothesis that parental stress associated with long-term morbidity of very low-birth-weight infants (VLBWIs) is long lasting. Design: Matched case-control study. Setting: High-risk newborn follow-up program, Winnipeg, Manitoba. Participants: Parents of 96 Manitoban VLBWIs born from July 1986 through June 1990, compared with parents of full-term controls matched for age, sex, race, domicile, singleton or multiple pregnancy, and birth order. Main Outcome Measures: Mailed questionnaire, including Stein's Impact on Family Scale, positive impact of parenthood, and attitudes toward treating VLBWIs. Results: Families were demographically similar. The parents of VLBWIs had higher scores for financial burden, familial/social impact, personal strain, and mastery (P<.0001). The parents of VLBWIs experienced more impact when children had a functional handicap or low adaptive developmental quotient. Scores were highest when the adaptive developmental quotient was 70 to 85. High scores were associated with low family income and less parental education. Impact did not change over time. Only half of the parents in each group felt that "doctors should try to save every baby." The parents of VLBWIs felt more strongly that cost should never enter into the decision to treat a tiny baby (P<.005). The families 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 associated with more long-term stress, even for well-educated nuclear families whose health care is financed by government. Caregivers need increased 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 functional handicaps. (Arch Pediatr Adolesc Med. 1995;149:151-158)