The birth of an extremely low birth weight infant (ELBW) < 901 g: Impact on the family after 1 and 4 years

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Abstract
Twenty families of extremely low birth weight infants (ELBW) < 901 g and of 20 full-term matched controls were followed up at 1 and 4 years after birth to evaluate the impact on the family. Semi-structured parental interviews were performed when the children were 1 year and 4 years old. The children's development was assessed with the Griffiths' Scales of Mental Development and the behaviour with Cederblad and Hook's Behaviour Symptoms Interview, a revised Swedish version of McFarlane's scale. The group of ELBW infants had increased rates of feeding difficulties and restlessness during theirfirst year of life compared to the full-term controls and were more demanding to their parents. The parents of the ELBW children reacted to the strains with physical symptoms such as headache, recurrent abdominal pains, extreme tiredness and with marital dissatisfaction. Siblings showed behavioural symptoms like regression, attention seeking, sleeping disturbances. At the 4-year follow-up there were no significant differences in the parental variables between ELBW and control groups. The ELBW children were in some respects still more demanding of their parents, being hyperactive and having difficulties in concentrating, but the families had adapted to the situation. Our results showed that the birth of an ELBW infant had a strong impact on the family for at least 1 year but in a 4-year perspective most families had considerable resources to recover from the crisis of having an ELBW infant.