Skills Training for Young People

In addition, health-related skills (e.g., learning to give their own injections) need to be identified so that the individual can manage his or her rheumatic disease once they have left home. Collaboration with other providers and across systems of care (including school and community-based service agencies) is the ideal during this complex time of physical and psychosocial change. The transition plan should involve not only the transfer of medical information from pediatric to adult providers but also the transition of responsibility for health-related issues from the parent to the individual with rheumatic disease. Adolescents are notorious for being nonadherent to the recommendations of health care providers and other authority figures. Young people with rheumatic disease can go "on strike" at this time and

"rebel" by neglecting their self-care. To be ready to move to the adult system, the adolescent needs to be responsible for taking medications, to develop the ability to understand and discuss his or her disability, and to use required adaptive equipment or appliances. During this process, health care professionals should consider when to start seeing the individual alone and when to develop a confidential relationship with him or her. For many adolescents this is appropriately at age 12 to 13 years. Meeting independently with the provider sends a clear message to young people that their autonomy is respected and that active participation in their health care is expected. Studies have shown that adherence to medical recommendations improves when adolescents contribute to health care decisions, monitor their own care, and make their own appointments (60). Seeing health professionals independently of parents has also been reported to be associated with adherence to the first appointment in adult care (61). Providers can improve adherence by simplifying their recommendations and by being consistent, both in terms of availability and, if there are multiple providers, by coordinating appointments and recommendations. For further discussion re adherence, see Chapter 5.

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