The findings indicate caution about encouragement of maximal self-care autonomy among youth with IDDM and suggest that families who succeed in maintaining parental involvement in diabetes management may have better outcomes.

The parent version of the Diabetes Independence Survey measures parents' perceptions of their children's mastery of 38 diabetes self-care skills. The instrument was administered to 648 parents of 622 children with insulin-dependent diabetes mellitus, ages 3 and 18 years, at seven different pediatric medical centers. Data confirming the internal consistency, interrater reliability, construct validity, and concurrent validity of the instrument are presented in this paper. Age-adjusted normative data for total scores on the instrument as well as item-by-item data on the ages at which mastery of each skill was reported by 25%, 50%, and 75% of parents also are discussed. The Diabetes Independence Survey can be used as a reliable, valid, and efficient research tool for assessing the growth and development of diabetes knowledge and skills among children and adolescents, and as a screening instrument and program evaluation tool for clinical purposes.

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Most families made active use of their SMBG data, but few of these actions were proactive. Behavioral factors were stronger predictors of family use of SMBG data than were objective indices of the need for treatment adjustments. The results illustrate the need for further research on use of SMBG data and methods to enhance its impact on diabetic control.