A boarding school for hemophiliacs: a model for the comprehensive care of hemophilic children.

Abstract

Ten years' experience with boarding schools as comprehensive-care centers for hemophiliacs created by the French Red Cross has documented their effectiveness. Far from implying that hemophilic patients should be permanently isolated from society, we think that a temporary stay in a boarding school provides a model for the comprehensive care of hemophilic children. These schools have become hemophilia care centers where, on a temporary basis, patients can receive proper instruction concerning the medical, psychological, and educational problems they will encounter in society at large. At the present time, most hemophiliacs are properly treated at home, but selected cases of patients with specific problems can certainly benefit from a stay in a boarding school. Psychological studies presented here emphasized the high frequency of disturbances in patients coming from a low economic lass. One of the most important factors determining the psychological adjustment of hemophilic children seems to be understanding of the disease by the family. The cultural level of the family also influences the education and the medical care of these children. A temporary stay in a boarding school permits at least partial resolution of such problems both on a short-term and a long-term basis. During the stay, a great effort must be made to improve the local medical situation and the involvement of the parents in the problems of hemophilia. It has been shown that adolescents have greatly benefited from a self-infusion training program from both a medical and a psychological point of view. The boarding school seems to be the best means of organizing a program that requires a solid framework, psychological support, and a great amount of time. This training may be achieved in a three- to six-month period, depending on the motivations and the psychological ability of the hemophiliac. Self-infusion is a powerful tool able to transform the situation of these adolescents from one of dependence to one of autonomy and to enable them to adjust to society.