Miller R
Social Worker/Family Therapist Haemophilia Centre, AIDS Counselling Co-ordinator Royal Free Hampstead NHS Trust, London, UK.
AIDS Care. 1995;7(3):381-9. doi: 10.1080/09540129550126597.
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.
处于童年和成年之间的青少年及其家庭面临着诸多挑战。对于20世纪90年代患有血友病、感染艾滋病毒和丙肝的人群而言，及时审视这些挑战是什么很有必要。这三种病症都是终身的、危及生命且无法治愈的。这些家庭面临的主要困境在于如何、何时以及由谁来告知青少年其感染艾滋病毒和丙肝的情况；如何在感染的实际情况、青少年的最大利益以及将感染传播给他人的风险之间找到恰当的平衡。艾滋病毒打乱了青少年对正常生活阶段的期望和发展。医护人员与青少年的关系受到对青少年及其父母以及其他可能面临感染风险者的责任划分的影响。明确与医疗治疗和护理、疾病进展相关的问题，以及提高应对家庭和年轻人的技能，是在面对危及生命的疾病时帮助所有相关人员维持希望的方法。
