Psychophysiological Study of Bleeding and Adaptation in Young Hemophiliacs

Abstract

Robert Louis Stevenson, a victim of pulmonary tuberculosis, once wrote, “Life is not a matter of holding good cards, but of playing a poor hand well.” Children with a chronic physical disorder, such as hemophilia, who have mastered the physical, social, and emotional hardships associated with their illness, well illustrate this point. This chapter describes a six-year study of the psychophysiological aspects of hemophilia that began with an investigation of the common forms of emotional stress experienced by the hemophilic child and his family and the major coping techniques enabling them to achieve a satisfactory psychosocial adaptation. This investigation was followed by a group therapy project with the parents of young hemophiliacs that provided further information about parental adjustment to chronic childhood illness. The study ended with a long-term psychoendocrine study aimed at examining the possible correlation between the urinary excretion of stress hormones and the degree of adaptation in hemophilic boys. From its beginning our project was of a naturalistic nature and was service-oriented. Many short-term psychotherapeutic interventions took place involving both the boys and their parents. The longitudinal scope of the study allowed for certain conclusions regarding children’s coping with long-term physical illness in general.