Impact of Extreme Prematurity on Family Functioning and Maternal Health 20 Years Later

OBJECTIVE: The goal was to examine the impact of illness on families and the long-term effects on the health of parents of young adults (YAs) who were born with extremely low birth weight (ELBW), compared with normal birth weight (NBW) control subjects. METHODS: A longitudinal cohort study was performed. Participants were mothers of eligible ELBW and NBW YAs. Information was obtained with well-validated questionnaires. RESULTS: At young adulthood, 130 (81%) of 161 ELBW group and 126 (89%) of 141 NBW group mothers participated. There were no significant differences in scores between groups with respect to marital disharmony, family dysfunction, maternal mood, state anxiety, social support, depression, and maternal physical and mental health. The finding of no differences was unchanged when 27 YAs with neurosensory impairment (NSI) were excluded, except for family dysfunction scores, which were paradoxically lower for families with YAs with NSI. Although the impact scores revealed that significantly more parents of ELBW YAs were negatively affected with respect to their jobs and educational or training opportunities, mothers of ELBW YAs reported that the experience of caring for their child brought their family closer together and that relatives and friends were more helpful and understanding, compared with mothers of NBW YAs. Significantly more mothers of ELBW YAs with NSI, compared with those without NSI, felt better about themselves for having managed their child's health. CONCLUSION: It seems that, by young adulthood, there is a minimally negative long-term impact of having an ELBW child in the family, regardless of the presence of NSI.