IS THE IMPACT OF BURDEN OF ILLNESS ON FAMILIES OF PREMATURE INFANTS LONG-LASTING? † 1651

Abstract

The negative impact of premature birth on the families of preterm infants is well described. There is less information on whether the adverse effects are long-lasting. Objectives: To compare the impact of burden of illness on families of teenaged extremely low birth weight (ELBW) infants compared with controls (C). Design: Cross-sectional survey/cohort study. An 18-item self-completed questionnaire, encompassing work, marital and family-related issues, was administered to parents. Setting: Geographically defined region. Participants: Parents of 146/169(86%) teenaged ELBW survivors, born between 1977 and 1982; 123/145 (85%) sociodemographically matched term controls (proportion with neurosensory impairments: ELBW = 26%; C = 2%). Results: 87% of the respondents were mothers answering on their own behalf and their spouse/partner, 87% were 2-parent families. There were no significant differences between ELBW and C parents in the current emotional suffering or worry about their child's physical (19% vs 10%) and/or emotional health (33% vs 25%); nor did ELBW parents perceive that they had limited amount of personal timecurrently due to their child's physical health (9% vs 4%) or emotional health (20% vs 15%). Since the birth of their child, few ELBW parents felt that they had difficulty in making friends (6% vs 3%), were unable to work (8% vs 1%, p = 0.02), had to quit or change jobs (5% vs 1%), move residence or had major financial problems because of their child's illness (5% vs 2%). Both positive (25% vs 7%, p = 0.0003) and negative (18% vs 6%, p < 0.005) effects on marriage were higher in ELBW parents; more ELBW parents felt that their child had brought their families closer together (39% vs 13%, p = 0.0001), and that their relatives had been more helpful and understanding (54% vs 25%, p = 0.0001). However, a significantly higher proportion of ELBW parents felt that, overall, their child's health had adversely affected their emotional health (21% vs 10%, p = 0.02) and that of other children in the family (22% vs 7%, p = 0.003). Of the total cohort, 57% of ELBW and 39% of C did not have any subsequent children (p = 0.007); among these, 58% of ELBW and 6% of C said that the decision not to have more children was directly influenced by the birth of the study child (p < 0.00001). Conclusions: In the long-term, it appears that parents of ELBW have adjusted remarkably well to their work and family life. Although some positive effects were identified, the experience discouraged a significant proportion of ELBW parents from having more children.