Observations of a support group for parents of children with severe bronchopulmonary dysplasia.

Parents of children with bronchopulmonary dysplasia (BPD) suffer severe stress and anxiety. In order to provide a group of peers and ready access to caregivers, a support group was developed for the families of children with severe BPD. Fifty percent of invited families attended 1 to 11 monthly meetings. Those attending were primarily upper middle social class, white, married parents with a good visiting record. Members initially focused on specific topics (medical and developmental problems), but later discussions were oriented to psychosocial problems. Many parental anxieties had never previously been discussed with staff members. Commonly, parents complained about not understanding the medical care system. The parents were usually aware of the death of a child with BPD prior to the meeting and dealt with their feelings in the group discussion. Continuing interactions outside the hospital were common. The development of similar groups in other hospitals should be encouraged.