Being parents of extremely preterm children, from a long-term perspective: A qualitative study of parents' experiences

•The birth of an extremely preterm child have a profound effect across time for the child's parents.•The birth of an extremely preterm child might have long-term impact on the child's whole family.•The birth of an extremely preterm child can be facilitated during growth by instances such as health care, school and society.•The birth of an extremely preterm child needs awareness of support and help for the child and the entire family.