Guidelines for counselling adolescents with haemophilia and HIV infection and their families

Adolescents, poised between childhood and adulthood, and their families have many challenges. It is timely to review what these are for those with haemophilia, HIV and HCV (hepatitis C) infection in the 1990s. All three conditions are life long, life threatening and incurable. The main dilemmas facing these families are how, when and who should tell the adolescent about HIV and HCV; getting the right balance between the realities of the infections, the best interests of the adolescent and the risks of transmission of infection to others. HIV interrupts the adolescent's normal life stage expectations and development. How health carers relate to the adolescent is influenced by the split responsibilities to the adolescent and his parents as well as to others who might be at risk of infection. Clarity about the issues related to medical treatment and care, disease progression, and enhancing skills in dealing with families and young people are ways of helping to maintain hope in the face of life threatening illnesses for all concerned.