Making Transitioning a Process

How Models of Care Affect Transitioning

Several developmental milestones are normally achieved during adolescence. AI/ANs and people of African descent--whether born on the continent of Africa or in the Diaspora--have rite-of-passage rituals during adolescence. This is seen as the period during which youth are prepared to assume adult responsibility. Their education and preparation during this time is seen as vital to fulfilling their unique purpose and to sustaining the community. Physical development in teens is highlighted by alterations in weight, height, and body dimensions, accompanied by hormonal changes that influence mood swings and a stimulation of their sexual desire. Their social development is punctuated by evolving relationships with teens of the same or opposite sex; pressure to conform to the appearance, behavior, and attitudes of peers; and the need to be accepted within their social group. In their emotional development, conflict reigns as they challenge rules and values as a means to establish their own identity. Their academic and career interests become focused as they concentrate on immediate and future employment and educational goals.

For many chronically ill adolescents, the achievement of these milestones is delayed or interrupted by the effects of their health condition. Complex and demanding disease management protocols often interfere with establishing independence. As the adolescent experiences difficulty adhering to treatment regimens, relationships with guardians and providers become hostile, and for many, career goals are diminished.

Difficulty adjusting to normal body changes is exacerbated by the physical manifestations of their HIV infection. Adolescents with HIV disease may experience disfiguring changes in skin pigmentation, disease-related hair loss, delayed sexual maturation, small stature, and medication-associated fat malformations. Hence, HIV treatment events frequently lead to marked episodes of sadness, grief, and anger. Adolescents' physical appearance, level of maturity, and social skills contribute to their social desirability. Social acceptance versus social isolation, therefore, becomes an overarching concern. Having fewer opportunities to become part of a social peer group interferes with the process of seeking and exchanging information about sex, sexual relationships, academic performance and related concerns, and most importantly, how to confront and resolve conflicts with peers.

Young people with HIV receive care in different types of settings. Some of these settings are tailored to accommodate the limitations of their developmental delays and some are designed to serve independent adults. It is important for providers to understand that, from the perspective of young patients, their transition may involve not only new providers but also a vastly different approach to health care.