The role of parents

Abstract

Having a child with a chronic illness places a substantial burden on parents. In early and middle childhood, the parent must shoulder complete responsibility for illness management; as the child enters adolescence, responsibility begins to be shared, and parenting gradually shifts from efforts to gain child compliance to efforts to support the youth’s increasing autonomy. This is a delicate dance, often fraught with the danger of descending into a cycle of parent-child conflict. Yet the research literature is very clear—maintaining positive parent involvement from childhood through even late adolescence is strongly associated with better adherence, better illness control, and better child quality of life. how to maintain involvement in a positive way without devolving into conflict is the focus of this chapter. We discuss important aspects of effective, positive parenting, and the ways parenting can go wrong despite only intending to do well.