Self Determination Through Childhood and Adolescence

Self-determination is a combination of attitudes and abilities that lead people to set goals for themselves, and to take the initiative to reach these goals (11). The capabilities needed to become self-determined are learned through real-world experience (including mistakes) and an open, supportive acknowledgement of their chronic illness/disability (12). Too often families, teachers, and other well-intentioned people protect young people with SHCN from making mistakes and avoid discussing the ramifications of their illness/ disability. This approach can set the child up for failure or can result in "learned helplessness." Teachers and those providing assistance to families can and should begin preparing children with rheumatic disease for independence as early as possible. For example, young children between three and five years of age can begin to incorporate chores into their daily routine. Families that give children opportunities to demonstrate competence through developmentally appropriate household chores send a clear message of support, capability, and that they are being treated like everyone else, without a chronic illness/disability. In a classic longitudinal study of at-risk children, Werner found that involvement in household chores promoted resilience and positive social outcomes in adulthood (13). Subsequent studies have documented the important role of family dynamics and parental expectations on social outcomes (14). By the developmental age of 6 to 11 years, children should begin assuming responsibility for their self-care. For example, school-aged children with juvenile idiopathic arthritis (JIA) should be ready to plan and ask their physician some questions about their arthritis and their health. Self-determination skills should be used to help identify and meet self-care goals by early adolescence. During mid-adolescence, self-determination skills can be focused on identifying and meeting educational and vocational goals (15,16). In late adolescence, these skills can then be used to identify and meet goals related to independent living.

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