The adolescent’s psychological situation is qualitatively different from the young child’s. “Normal” adolescence is characterized by a sense of open horizons and immortality and by the quest for identity. In contrast, an adolescent who is diagnosed with a life-threatening illness faces the disruption, if not the irreversible halting, of his or her negotiation of an independent existence.
Adolescents vary within and across the early, middle, and late stages of this last developmental stage of childhood. Moreover, family cultural values and practices will often shape adolescent experiences differently. Notwithstanding such variations and differences, certain issues dominate adolescent development: the wish for increasing independence and autonomy, a focus on body image and sexuality, the importance of peers, and the formation of a personal identity oriented to the future, not just the present (Kellerman and Katz, 1977; Zeltzer 1980). Recognition of the difference between young children and adolescents is reflected in the creation of adolescent medicine as a subspecialty of pediatrics.
Emotional care for adolescents who are facing life-threatening medical problems presents particular complexities (Thornes, 2001). During a period when developing “a life of one’s own” is paramount, these young people may confront limitations in every sphere of development: physical, intellectual, and emotional. Further, they face life-and-death issues and decisions that most people do not face until much later in life. As experienced by one seriously ill girl, “You have to accept things that . . . [teens] don’t normally have to face. I had to automatically be an adult and it was very hard” (Sourkes, 1982, p. 28).
For adolescents living with a medically dictated physical dependence on family and professional caregivers, psychological independence can be a major issue. Reactions of adolescents who are not granted some channel for autonomy (i.e., for making choices) may include depression, anxiety, anger, risk-taking behaviors, and nonadherance to medical regimens.
Although the specifics vary with the diagnosis and stage of illness, an adolescent’s life-threatening illness often limits participation with peers, both in school and socially. Physical limitations, lengthy hospitalizations, fears of venturing out in the wider world, and fears of being “left behind” by healthy peers may compound the loneliness and isolation of serious illness. In addition, many adolescents, especially if some consequences of their illness are visible, grapple with the sense of being damaged and deviant in the outside world. “Everything about me is different. My hair is short and thin. I used to have long hair. I’m not tanned and I’ve lost a lot of weight. My side looks funny where they took out the rib. And you know how teenagers are—being different is the worst” (16-year-old adolescent,