Impact of extreme prematurity an families of adolescent children

Objectives: To compare the impact of burden of illness on families of teena ged children who were extremely low birth weight (ELBW) with that Of member s 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, a nd family-related issues and attitudes toward treatment of infants of borde rline viability Results: Both positive (P = .0003) and negative (P < .005) effects on marri age 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 h ealth (P = .02) and that of other children in the family (P = .003). Despit e this result, a significant proportion of parents from both cohorts suppor ted 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 hav e adjusted fairly well to their work and family life. Although some negativ e effects were identified, there was still considerable support for active treatment of infants of borderline viability.