A multidimensional assessment of children with chronic physical conditions.

Abstract

In the United States, approximately 20 million children under age 18 have a chronic physical illness or disability (CID) (Newacheck & Taylor, 1992). As a result of the advances in medical technology, most of these children will attain adulthood, an outcome heretofore not readily achieved (Ell & Reardon, 1990; Gortmaker & Sappenfield, 1984). Many of these children will be well physically and psychologically (Noll, Ris, Davies, Bukowski, & Koontz, 1992; Perrin, Ramsey, & Sandler, 1987; Wertleib, Hauser, & Jacobson, 1986). The ongoing strain of living with a chronic physical condition, puts other children at increased risk of social and emotional problems (Gortmaker, Walker, Weitzman, & Sobol, 1990; Pless, Power, & Peckman, 1993; Roberts, Turney, & Knowles, 1998). There are two schools of thought regarding the etiology of social morbidities experienced by children who have chronic conditions. One perspective is that the health status (the actual manifestation and management of a CID or the inherent characteristics of CID) of a child is the primary source of psychosocial problems such as diminished self-worth, depression, and lower sense of competence than that of peers without chronic conditions (Lavigne & Faier-Routman, 1992; Pless & Nolan, 1991; Pless & Pinkerton, 1975; Pless et al.). The second perspective identifies social isolation and other sequelae of living with a chronic condition as the cause of psychosocial problems (Blum, 1992; Patterson, 1991; Redd, 1994; Zeltzer, 1993). SELF-PERCEPTION: A PROTECTIVE FACTOR? Social isolation is reported to be particularly potent when coupled with invisible physical chronic conditions such as asthma, diabetes, and congenital heart disease (Sinnema, 1991). Earlier research suggests that children with these conditions face especially complex challenges in developing a sense of self-worth (Starfield, 1992; Stein & Jessop, 1984). Children with invisible conditions may not exhibit overt physical limitations but are often hampered by complex clinical care requirements or their inability to perform tasks and participate in certain age-appropriate activities. Because their chronic conditions are not obvious, children with invisible conditions may avoid needed health maintenance in an effort to be normal, thereby placing themselves at increased risk of exacerbating their physical conditions. Research suggests that children who demonstrate the most psychological distress have the least overt signs of disability (Kellerman, Zeltzer, Ellenberg, Dash, & Rigler, 1980; Tavormina, Kastner, Slater, & Watt, 1976; Zeltzer, 1993). Those research findings concluded that the perceptions of illness far more than the physiological manifestations affect the children's functioning. According to Patterson (1991), the dissonance between sociobehavioral norms and physiological restrictions can result in poor self-esteem and withdrawal. The latter are risk factors of depression, suicide, and other psychological problems (Masten, 1988). It may not be the severity of limitation but rather the child's perceptions of herself or himself as a worthwhile person that influences emotional distress and cognitive and sociobehavioral outcomes. In school-age children, feedback from peers is central to the development of self-esteem (Rosenberg, 1979). Harter (1990a) reported that there is a hierarchy of feedback informants in the peer group. The respect of classmates who are not close friends is most revered among childhood peers and has the greater effect on self-esteem (Harter, 1990a). Essentially, children and youths see themselves through the eyes of others (Cooley, 1902); their perceptions of self-worth are rooted in interpersonal relationships (Harter, 1990a; Leahy & Shirk, 1985; Rosenberg, 1979; Selman, 1980). According to James (1892), if the number of successes experienced is greater than the unrealized attempts, then the individual feels a sense of competence. …