[Extremely prematurely born children's and their parents' need for support]

During the 1990s, knowledge on the psychosocial consequences of extremely preterm birth was requested. The Danish Paediatric Society therefore launched a prospective longitudinal study of all children born in Denmark in 1994-95 with a gestational age of <28 weeks and/or a bodyweight of <1000 g (ETFOL).

Surviving children and a group of children born at term were assessed at 5 years of age and the parents filled in a questionnaire. Quantitative data were analysed, qualitative data and impressions received through conversations with the parents were considered on the basis of a psychological understanding of loss and grief.

During the first year of life, index children were more ill and were cared for in the home for a longer time than were reference children. From the 3rd year of life, differences in illness were minimal. Index parents received more support from professionals than did reference parents. Differences in family structure or social network did not explain this. Despite this, 28% of index vs. 4% of reference parents felt that they did not receive enough support.

Index children were more vulnerable than reference children. After discharge, index parents had an increased need of support that could not be fulfilled by family/friends. An understanding hereof may be found in the vulnerability of the children and in a psychological understanding of loss and grief. The parents lacked contact and dialogue with other parents and professionals with knowledge of their situation. We therefore need to consider the appropriateness of today's follow-up procedures for prematurely born children and their parents.