Parents helping parents: does this psychological mechanism work when the child is affected by a high risk disease?

Mutual help relationships are very important among families with children affected by serious diseases. Discussing common problems and experiences can provide the stimulus for developing the coping strategies that are needed to face new situations. This can thus be done with an outlook that nurtures subsequent adjustment and restoration of a good quality of life after diagnosis and the start of therapy. However, when parents are faced with the ordeal of a child affected by a high risk disease, this interaction may have detrimental effects. Through our observations of the behavior and relationships of 217 families over 5 years, we have been able to identify the caregiver as the staff member who can provide true and helpful support to the children and their parents. This caregiver is in touch with the psychologist supervisor on a daily basis, as well as with all the staff members involved in the global care of the child, including physicians, nurses, school teachers, and play workers. We strongly believe that physicians and caregivers must adopt strategies and practices to improve communication with, and often among, the families of affected children, and that they must act as a reliable source of support for their hopes for a cure. Treatment and recovery must never be proposed as a war to be won, but rather as an alliance among patients, parents, physicians and other caregivers that is formed to build health, and not merely to destroy the disease.