Impact van vroeggeboorte op het gezin: ook na 19 jaar ondervinden families nog gevolgen [The impact of a premature birth on the family: consequences are experienced even after 19 years]

Background. The birth of a child is a major life-event. When a child is born preterm, this creates a period of stress and anxiety. The long-term impact on the family after a preterm child has been born is still largely unknown. Our objective was to determine the impact on the family after the birth of a preterm child. Design/methods. Written questionnaires were sent to parents of children from the POPS-cohort at the time when their preterm child became nineteen years of age. The POPS-cohort consists of children born in 1983 in the Netherlands with a gestational age less than 32 weeks and/or a birth weight less than 1500 gram. We included information about handicaps and disabilities from tests performed at the age of 5 years. Analyses were completed using Chi-Square analyses and univariable and multivariable logistic regression models. Results. 595 families returned the questionnaire (response 62%). A handicap was observed in 128 children at the age of 5 years (22%). The divorce percentage was significantly higher among families with a disabled infant (26 vs. 14%, p<0,01). There was a negative influence on the relationship between parents in 54 families, handicap was a risk factor (16 vs. 9%, p:0,046). Careers and work related problems were analyzed separately for mothers and fathers. About a third (36%) of the mothers felt a negative influence on their work situation. Handicap was a risk factor (48 vs. 33%, p:0,04). Only 2% of the fathers expressed a negative influence at work. There were financial problems in 11% of the families during the first year and after nineteen years 4% still had financial problems. Risk factors for financial problems during the first year were male gender (15 vs. 7%, p<0,01), handicap (21 vs. 8%, p<0,01) and low social economic status (SES) (13 vs. 7%, p:0,04). Risk factors for financial problems after nineteen years were handicap (9 vs 3%, p<0,01) and low SES (6 vs. 2%, p:0,04). Of the families, 15% felt that they did not receive enough support from family and friends and 26% observed loss of friends or social activity in the first year. After nineteen years 4% considered the preterm birth to still have a negative influence on their social life. Risk factors for insufficient support were handicap (29 vs. 12%, p<0,01) and normal birth weight compared with dysmaturity (21 vs. 9%, p:0,04). Risk factors for a negative influence on social activities and friends in the first year were handicap (38 vs. 23%, p<0,01) and male gender (30 vs. 23%, p:0,04). Risk factors for negative social effects after nineteen years were handicap (12 vs. 1%, p<0,01) and low SES (7 vs. 1%, p<0,01). 160 Families (28%) noticed a negative influence on acceptance and experience in the first year and after nineteen years 18 families (3%) still observed a negative influence. Risk factors were dysmaturity (36 vs. 24%, p:0,02), male gender (34 vs. 23%, p<0,01) and handicap (36 vs. 26%, p:0,03) within the first year and handicap (10 vs. 1%, p<0,01) at nineteen years. Conclusions. Preterm birth had a major influence on the family as a whole. This influence was not limited to the first year after birth alone, but remained throughout childhood and adolescence. This impact was felt in all aspects we investigated and was highest in the families whose children had a handicap at the age of five. Although medical care has improved significantly since 1983, the increased survival among very premature babies has also led to a higher number of patients with a handicap. Therefore, we suppose that the impact on the families has not diminished until now. Also, since 1983, the parental roles within a family have changed. It is possible that this change will lead to a different impact, especially on working mothers. Intervention have successfully improved the outcome for infants. Some studies are exploring the application of “parent empowerment” and take the impact on the entire family into account. We suggest that, although all families could benefit from intervention studies, extra attention should be spent to families who are more at risk.