Adolescence and Chronic Illness

Given the tasks imposed by the emergence of a chronic disease, and bearing in mind the characteristics of the normal (healthy) adolescent, adolescence is probably the most untimely period for disease manifestation (Table 3). Blum and Geber particularly stress the adverse effects when chronic illness influences the pubertal development itself: "Whether delayed or precocious, pubertal changes have profound social and emotional consequences for all youth" (15). Strasburger and Brown say that the emergence of a chronic illness may even have a "devastating effect" since the disease and or the therapeutic regime may impact on several components of development, concurrently (3). Similarly, Fritz (16) describes a negative impact of chronic illness on nearly each of the four main domains: attainment of physical maturity; development of autonomy and separation from parents; sexual identity and the formation of mature relationships with both sexes; and preparing for a productive place in society. Successful adaptation, therefore, may not to be taken for granted (15). Not surprisingly, then, young people with chronic illnesses were the target of countless studies. As will be seen in

Table 3 Why Chronic Illness Is Particularly Untimely During Adolescence

■ Interference of disease with pubertal/physical development at a time when normal variation may already lead to turmoil

■ Illness- or drug-dependent alterations of appearance at a time of increased fear of rejection

■ Being different from peers at a time of maximum desire for conformity

■ Increased dependence on parents at a time of expected stepwise separation

■ Being obliged to follow a rigid therapeutic discipline at a time of impulsiveness and volatility

■ Being dependent on adult counselors at a time of heightened skepticism towards the adult world (values and credibility)

more detail with respect to studies on young people with rheumatic disease, there is a trend towards reporting less noticeable problems, as study designs are increasingly sophisticated and methodologically sound. However, longitudinal data are mostly lacking. Data from a German longitudinal study on coping in adolescents with insulin-dependent diabetes mellitus is therefore of major interest (17,18), particularly in view of its explicit developmental orientation. The authors referred to the focal theory of adolescence, developed by Coleman (19), who discovered that interest in and concerns about different topics peaked at different points in adolescence. Different issues come "into focus" at different times, according to this theory. The question under study was, what would happen to the common developmental process and topics if the youngsters had to cope with major non-normative stresses, demanding their immediate attention? Interestingly, the authors found developmental delay only during the first interviews, but not in the long-term (17). Age appropriate developmental tasks were initially postponed except for educational issues, where the youngsters even displayed better results than healthy controls (18). Referring to the typology of adolescence discussed in the previous section, these adolescents fast-tracked the "vertical" development (14). As Figure 1 further shows, the majority of adolescents in the German study successfully integrated developmental and disease related tasks. A third of adolescents primarily focused on illness management to the detriment of developmental tasks, especially regarding the peer-related dimensions [less "horizontal" development (14)]. A minority resolved the conflict of developmental and illness related tasks to the detriment of the latter. They appeared to even speed up their normal development in so far as they often displayed premature and socially deviant (acting out) behavior and largely neglected alarming HbA1c-scores. That is, they purely

Figure 1 Types of coping in adolescents with insulin-dependent diabetes mellitus: Type 1: successful integration of developmental and illness-related tasks; no long-term developmental leeway. Type 2: focusing on illness adjustment to the detriment of developmental tasks. Type 3: focusing on developmental tasks to the detriment of illness adjustment. Type 4: maladjustment and failure. Source: Adapted from Ref. 18.

Figure 1 Types of coping in adolescents with insulin-dependent diabetes mellitus: Type 1: successful integration of developmental and illness-related tasks; no long-term developmental leeway. Type 2: focusing on illness adjustment to the detriment of developmental tasks. Type 3: focusing on developmental tasks to the detriment of illness adjustment. Type 4: maladjustment and failure. Source: Adapted from Ref. 18.

focused on "horizontal" development according to the typology outlined in Table 2. A residual category of adolescents came from families, who seemed overwhelmed altogether. Developmental as well as illness related targets were largely missed.

The emergence of a chronic disease may therefore indeed be overwhelming and may lead to respective symptoms either with regard to insufficient psychosocial development or with regard to insufficient disease control (or both). However, as the public perception of normal adolescence constantly exaggerates turmoil, there may also be a bias towards an overly skeptical view of adolescents with a chronic illness. Furthermore, their likely short term problems may not be good predictors against successful long-term adaptation. Since short term problems may frequently be present, it may be particularly difficult to define good adaptation, at all. Fritz (16) cites an early definition of Mattson (20) which still appears to be appropriate, today (Table 4).

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