Parental and professional estimates of self-care independence of children and adolescents with IDDM.

OBJECTIVE

To report the results of a survey of 490 parents of children with insulin-dependent diabetes mellitus (IDDM) regarding the children's mastery of 38 diabetes-care skills. Parental responses are contrasted with those of a previous survey in which 229 diabetes professionals estimated ages at which typical children with IDDM master the same skills.

RESEARCH DESIGN AND METHODS

Parents were recruited at five pediatric endocrinology clinics with a response rate of 88.9%.

RESULTS

For 33 of 38 skills, professionals' median mastery age estimates exceeded, by greater than or equal to 1 yr, the median ages that parents reported skill mastery by their estimates, children. Despite the parent-professional disagreement about mastery-age their survey responses yielded substantial agreement about the order of mastery of specific skills. The data also revealed two profiles of comparative results. For many items, parents reported earlier skill mastery, but parental and professional estimates eventually converged during adolescence. These skills consisted of rote, motoric acts, or more complex tasks for which errors yield relatively certain aversive consequences. For other skills, more professional estimated skill mastery among adolescents than did parents. These skills required substantial organization and self-regulation by the adolescent, involved treatment components for which the aversive consequences of errors are deferred and uncertain, or they were skills infrequently required of most patients with IDDM.

CONCLUSIONS

The parent-professional discordance revealed by this survey illustrates the importance of clear specification of treatment responsibilities, careful monitoring of self-care competence, and periodic reeducation of children with IDDM.