Adolescence is often a difficult time of transition for boys with hemophilia. Many have felt overprotected by their parents and might rebel and take risks with their health and safety. While this is a normal characteristic of adolescence, risk-taking can become more significant for an adolescent with hemophilia because of the increased potential for serious harm.
Adolescents with hemophilia might react to their disorder in ways similar to those of parents of a newly diagnosed infant. Anger and denial might cause increases in risk-taking and attempts to avoid appropriate treatment.
While the adolescent strives for independence, hemophilia care can affect his ability to become independent of his parents or HTC staff who might be viewed as having parental roles. At the same time, nonadherence to treatment can result in more frequent complications and increased reliance on parents or HTC staff, or both for resolution of the problem. HTC staff should work with the adolescent to encourage his increased responsibility for his own care.
Teaching the skills required for self-infusion and promoting self-esteem can be helpful to develop and support such responsibility. Parents should be encouraged and supported in fostering their adolescent’s transition into adulthood. It is important to recognize that the parents might not be on the same page. For a variety of reasons, one parent might be more reluctant to “let go,” while the other is ready for the child to move toward increased independence. Couples in this situation might need additional support to move successfully through this process.
Peers and school are central to the life of an adolescent. Adolescents have a strong desire to “fit in” and look and act like everyone else. Self-concept is extremely important. Hemophilia can affect every aspect of this development. School attendance can be interrupted by bleeding episodes, participation in certain sports or other activities might be limited, and joint damage or acute bleeds might alter the adolescent’s appearance. This can have an effect on his self- esteem. Planning for further education and a career is also a major task for adolescents with hemophilia, as fewer options exist for unskilled or manual jobs, making educational decisions and careful planning more critical and complex.
While many children and young adolescents openly disclose their diagnosis, as they move into later adolescence, some become hesitant to do so. As adolescents enter into dating relationships and typically feel a heightened sense of vulnerability during this time, talking about hemophilia might be difficult. Education, support, and guidance by HTC staff can assist the adolescent through this process.