Impact of extreme prematurity on families of adolescent children

OBJECTIVES: To compare the impact of burden of illness on families of teenaged children who were extremely low birth weight (ELBW) with that of members of a term control group (C) and to determine whether the attitudes toward active treatment of very immature infants differ between the 2 cohorts. DESIGN: In a cross-sectional survey, parents of 145 (86%) of 169 members of an ELBW cohort and 123 (85%) of 145 members of a control cohort completed a 23-item self-completed questionnaire encompassing occupational, marital, and family-related issues and attitudes toward treatment of infants of borderline viability. RESULTS: Both positive (P =.0003) and negative (P <.005) effects on marriage were higher in parents of the ELBW group; although more parents in the ELBW group felt that their child had brought their families closer together (P =.0001), their child's health had adversely affected their emotional health (P =.02) and that of other children in the family (P =.003). Despite this result, a significant proportion of parents from both cohorts supported saving all infants (ELBW 68%; C 58%) and favored the role of parents in decision making (ELBW 98%; C 97%). CONCLUSIONS: In the long term, it appears that parents of ELBW children have adjusted fairly well to their work and family life. Although some negative effects were identified, there was still considerable support for active treatment of infants of borderline viability.