Developmentally, older elementary school children and preteens (roughly, ages 8–11) enter a stage where social comparisons become critical. Children try to figure out how they compare to other children and where they fit in to the group.
Social conformity often peaks around age 10 or 11 (Steinberg and Monahan 2007), contributing to child resistance to being different in any way. Children may become ashamed of having a chronic illness, or more immediately of having to manage it, and their peers may begin to tease or bully them for being different.
Unfortunately, bullying of children with chronic illness (and other disabilities) can be quite common (Van Cleave and Davis 2006), and is more likely to occur when children are restricted from normal school participation in some way (Sen- tenac et al. 2011).
Cognitively, many children in this age range are capable of learning the details of their medical regimen, and some are capable of performing management tasks inde- pendently. Realizing this, many healthcare providers believe that preparing children to take over illness management should begin around age 10 (Geenen et al. 2003).
However, cognitive maturity does not equal emotional maturity or responsibility.
Most children in this age range are simply not able to initiate and follow though on management tasks with any reliability, even if they do understand (and can articu- late) the importance of doing so. There is solid empirical evidence that when older school-age children are given greater responsibility for illness management, illness control suffers (Wysocki et al. 1996). We will review the evidence and discuss the issue of transfer of responsibility in greater detail in Chap. 10.
Summary
The onus of chronic illness management in early and middle childhood largely falls on the parent, and on other adults—such as school personnel—who have responsi- bility for the child’s welfare during the day. This responsibility can weigh heavily on parents, who experience a lot of stress and anxiety due to fears of hurting their child, inability of the child to communicate about symptoms effectively, and battles over compliance, as well as feelings of guilt for having “caused” their child’s illness and worries about the future. Parents—in terms of adherence but also in terms of psychosocial adjustment—should be a primary focus for providers working with these families.
As children get older they develop greater competence in all areas, but they still lack the maturity for taking on responsibility for illness management. Beginning to foster child autonomy by providing some choices at these ages can be beneficial (Chisholm et al. 2011), and participation in self-care tasks in a limited way can be encouraged, but it is important not to push too hard, and to be respectful of chil- dren’s wishes when they indicate through word or deed that they do not feel ready (Anderson and Schwartz 2014).
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