Chronic illness in adolescence

Adolescence, Winter, 1998 by Margaret M. Boice

Adolescence is a time of tremendous social, biological, psychological, and intellectual change. Coping with a chronic illness can add yet another dimension to adolescents' lives. Due to medical advances, more adolescents than ever before are leading productive lives despite experiencing serious illnesses. In the United States, 10% of all adolescents suffer from a chronic illness (Blum, 1992; Krementz, 1989; Millstein & Litt, 1990). In total, approximately one million children have a chronic illness that affects daily life (Perrin & MacLean, 1988) and another ten million have somewhat less serious illnesses (Haggerty, 1984).

A chronic illness is defined as "one that lasts for a substantial period of time or that has sequelae that are debilitating for a long period of time" (Perrin, 1985, p. 2). More specifically, Pless and Pinkerton (1975) describe a chronic medical condition as one that interferes in daily life for longer than three months in a year or requires hospitalization for more than one month in a year. The most common chronic condition is asthma, followed by sensory disorders and nervous system disorders. Examples of chronic illnesses include HIV and other sexually transmitted diseases, diabetes, lupus, cystic fibrosis, anorexia nervosa, spina bifida, cardiovascular disease, and idiopathic thrombocytopenic purpura (ITP).

In the past, children with many of these illnesses would never have lived long enough to become adolescents. In the past 25 years, the survival rate for children with cystic fibrosis has increased 700%; for spina bifida, the increase has been 200%; and for congenital heart disease, 300% (Blum, 1992). In fact, chronic disease and its effect on children and families has replaced acute illness as the most serious issue in pediatric medicine (Hobbs, Perrin, & Ireys, 1985).

Medical care has progressed to the point where it is necessary to find ways to enable victims of these diseases to surmount the normal stresses of adolescence and prepare for productive adult lives. For the most part, research has established that "adolescents who have a chronic condition are at increased risk for experiencing adjustment problems" (Wallander & Varni, 1995, p. 209). The present paper reviews the literature on adolescents with a chronic illness, addressing social, biological, psychological, cognitive, and cultural issues.

SOCIAL ISSUES

Minuchin (1974) describes the family as an interactive social system within which each individual responds to stress caused by others in the family and contributes to stress felt by others. In order to better understand the developmental issues related to disabled children, Mitchell (1983) adapted Bronfenbrenner's ecological theory to these children and their families. The microsystem level involves parent-child, parent-parent, and child-child interactions. Each of these interactions is a source of potential problems. In the mesosystem, interactions expand to include medical workers, extended family and friends, neighbors, and others. The potential for problematic interactions is thus increased. The exosystem, containing both the microsystem and mesosystem, includes the media, education system, and social programs. Finally, the macrosystem, which contains all of the previous systems, includes economic, political, cultural, and religious spheres. Bronfenbrenner's theory requires a study of the child in the context of all these systems.

For chronically ill adolescents, the developmental problems normally associated with adolescence are magnified. An overarching concern relates to social acceptance. An issue for all adolescents, this becomes more serious for those with chronic illnesses, who may spend a great amount of time isolated from other teenagers or in the company of adults. Seligman and Darling (1989) state that "peer acceptance or lack of it may be especially painful for the entire family during the adolescent years. Peer acceptance or lack of it . . . may determine the extent to which a child feels rejected and isolated, which in turn may contribute to stress" (p. 22). Krementz (1989) cites the case of a 16-year-old female with cancer, who stated, "When I first told my friends I had cancer, they were really shocked. Some of them started behaving differently toward me. Now I rarely see my friends. I mainly talk to them on the telephone" (p. 74).

Families of ill adolescents also tend to be socially isolated, with adults spending less time with their friends. A parent may choose not to work outside the home in order to provide care for the child (Blum, 1992). However, Patterson (1988) has found that it is actually better for parents of an adolescent with a chronic illness to maintain social contacts and work outside the home. The adolescent seems to benefit from having a caregiver who has other interests. It also leads to fewer parental restrictions, an important issue for all adolescents, regardless of their medical condition.

Even those with a serious illness should be given opportunities to feel that they are contributing to family life, such as being assigned chores. This is important, as overprotection may send signals of incompetence to the chronically ill teen. Resnick (1984) quotes a frustrated 16-year-old victim of cerebral palsy who experienced this with his father: "My dad thinks I'm shit! Right before camp he said I'd never be able to earn money like my brother, and I'll have to live off the government. It makes me feel like I'm so much less than he is! . . . When I was fourteen, my brother-in-law let me drive the tractor . . . but he [dad] won't let me drive [a car]. He doesn't think I'm worth a damn" (p. 299).