The impact of extremely low birth weight on the families of school-aged children

OBJECTIVE. The purpose of this study was to document the impact and burden of extremely low birth weight (< 1000 g) and associated problems on the families of school-aged children in a controlled study. The study was also designed to document the salient predictors of individual differences of family impact within the extremely low birth weight group. METHODS. A prospective study was completed at 8 years of a cohort of 219 children with extremely low birth weight born 1992-1995 and 176 children with normal birth weight. Measures included the following predictor variables: socioeconomic status and parent risk, birth risk, neonatal risk, neurodevelopmental outcome, impairment in adaptive abilities, and functional impact of chronic conditions. The primary outcome measure was the Impact on Family scale. A measure of family stressors and resources (the Life Stressors and Social Resources Inventory) was also obtained. RESULTS. The primary finding was that the total family impact was greater in the extremely low birth weight group compared with controls. Moreover, the negative impact on family in specific domains was greater in the extremely low birth weight group in financial impact, caretaker burden, and familial burden. These differences were not attributable to general family stressors, socioeconomic status, child, gender, or race. Higher parent/socioeconomic risk, neurodevelopmental outcomes, and the functional impact of chronic conditions predicted greater family impact within the extremely low birth weight group, whereas birth and neonatal risk scores did not. CONCLUSIONS. Extremely low birth weight was associated with a negative impact on families. Socioeconomic parental risk, but most especially child-related factors such as neurodevelopmental and the functional impact of chronic conditions, predicted the negative family impact within the extremely low birth weight group. Findings underscore the need to develop and test interventions to provide support for families of extremely low birth weight infants to ameliorate the burden of extremely low birth weight and associated risk factors on families.