This study demonstrates two main conclusions regarding the associations between responsibility sharing, diabetes management, and glycemic control in adolescents with type 1 diabetes assessed cross-sectionally. First, adolescent perception of responsibility sharing, particularly when characterized by greater caregiver responsibility, is critical to better diabetes management. Second, adolescents’ perception of greater caregiver responsibility around direct management tasks is more salient to BGM frequency than responsibility around indirect management tasks. These findings suggest that attempts to improve diabetes management (e.g., increase BGM frequency) in this age group may be most effective not only when the caregiver is more involved, but also when the adolescent in particular perceives greater caregiver responsibility.
In a recent multi-site study, dyadic agreement on responsibility sharing was significantly correlated with A1c in youth younger than age 12 (M
= 10.6 years old), but not in older youth (M
= 13.5 years old) (Anderson et al., 2009
). Our findings are similar and highlight that in this age group, adolescent perception of greater caregiver responsibility is particularly important around direct management tasks for BGM frequency; although it was not associated with diabetes control. The peripheral tasks such as making appointments or telling school personnel about diabetes have nonsignificant associations with diabetes management and control, possibly because these indirect tasks are largely being carried out by caregivers. Data from this study support this notion. Examining long-term associations between responsibility sharing and BGM frequency (i.e., adherence) and their association with diabetes control may help to better understand these relationships.
The results specific to the factor structure and psychometric properties of the DFRQ advance our understanding of this construct in adolescents with type 1 diabetes. Specifically, the original validation study for the DFRQ (Anderson et al., 1990
) did not reveal a meaningful factor structure for the child/adolescent report, even after splitting in to age groups (i.e., above and below age 12). While the original three-factor structure of the caregiver DFRQ had more robust eigenvalues (5.10, 1.85, and 1.54) than our two-factor solution (3.42 and 0.82), the two-factor solution fit both the adolescent and caregiver reports of the DFRQ. This suggests that in adolescents with type 1 diabetes and their families, responsibility sharing can be viewed as relating to either direct or indirect management tasks. This may provide more specific targets for clinic-based interventions (e.g., increase responsibility sharing around several direct tasks) toward the end of improving overall diabetes management.
We found other important covariates that affect diabetes management and control that are worth mentioning. Higher BGM frequency was associated with younger adolescent age, higher levels of caregiver education, and insulin delivery via CSII instead of MDI. Our results are consistent with previous work (Harris et al., 2000
; Johnson, Silverstein, Rosenbloom, Carter, & Cunningham, 1986
) that illustrates that as children age into adolescence, there is a decline in adherence, inclusive of BGM frequency. Additionally, lower levels of education were associated with lower BGM frequency and caregivers who were not married had adolescents with higher A1c values; both associations may be explained through socioeconomic status (SES). Previous studies indicate that low SES families tend to exhibit poorer diabetes management and control, likely due to competing needs and limited resources (Harris, Greco, Wysocki, Elder-Danda, & White, 1999
; Overstreet, Holmes, Dunlap, & Frentz, 1997
). The association between insulin delivery via CSII and higher BGM frequency is likely related to both situations where adolescents who are on CSII tend to check blood glucose levels more frequently as well as clinic standards of adherence prior to initiating CSII. In either case, higher BGM frequency is associated with CSII use. Similar to past findings, BGM frequency was tightly associated with better A1c values (Gavin & Wysocki, 2006
; Johnson et al., 1992
; Laffel et al., 2006
). While there is no direct association between greater caregiver responsibility and A1c in this age group, the promotion of BGM frequency and other indicators of better diabetes management may promote more optimal glycemic outcomes.
This study has limitations. First, this study employees a cross-sectional design. Longitudinal research on responsibility sharing among adolescent–caregiver dyads may help to elucidate the directional effect of responsibility sharing on diabetes management, as well as its link with glycemic control. Second, we relied on self-report measures for responsibility sharing and have no objective measure of this construct. While we found that adolescent perception of caregiver responsibility was an important correlate of diabetes management, it is possible that this perception differs from what actually goes on in the daily management of type 1 diabetes. Consequently, depending on who is more accurate (adolescents or caregivers), interventions may need to be altered (e.g., family problem solving intervention if adolescents are correctly perceiving less caregiver responsibility). Third, pubertal status was not measured in this study. While the current sample included only youth aged 13 and above who were most likely post-pubertal, previous research (Moreland et al., 2004
) has suggested important relationships between pubertal status and glycemic control that should be further explored. Fourth, there was a discrepancy between sites as to the method of obtaining A1c values (HPLC at the Northeastern site versus DCA 2000+ at the Midwestern site). In order to minimize the statistical impact of this limitation, we controlled for site in the preliminary analyses and in our final linear models. Fifth, the indirect factors in our CFA, by both adolescent and caregiver report, had eigenvalues less than 1.0 (.94, .82 respectively). However, this factor accounted for 24.9% of the variance (total variance = 97.4%) by adolescent report and 17.5% of the variance (total variance = 89.9%) by caregiver report, suggesting that both factors are needed to more accurately assess the underlying construct assessed (i.e., responsibility). Furthermore, the indirect factors had lower reliability. The indirect factors included a broader range of tasks which may account for the lower reliability of the factors and may have led to our inability to find significance within the models for indirect management. Lastly, although the sociodemographic characteristics of our study sample are representative of the larger population of youth with type 1 diabetes (Mortensen & Hougaard, 1997
; Springer et al., 2006
; Svoren et al., 2007
), future studies utilizing more diverse samples by over-sampling may provide different findings.
In sum, data from this study suggest that for adolescents with type 1 diabetes to achieve success in the management of their diabetes as they gain greater autonomy in their self-care, the adolescents must perceive caregiver responsibility in the management of their diabetes. This requires that responsibility sharing of caregivers is explicit and clearly identified by the adolescent. Explicit responsibility sharing appears to be particularly important for direct management tasks such as monitoring blood glucose levels, changing or rotating sites for insulin delivery, and responding to blood glucose levels. Thus, clinic-based and clinical research interventions for adolescents must include explicit caregiver responsibility sharing that is acknowledged by the adolescents in order to promote better diabetes management and glycemic control for adolescents with type 1 diabetes.