Although continued involvement of parents in treatment management is associated with better health and psychosocial outcomes in youth with type 1 diabetes [2
], researchers and providers acknowledge that the level and type of parental involvement will change with the child’s developmental stage. The American Diabetes Association makes specific recommendations for the transfer of responsibility for treatment management, noting that school-age children (ages 8–11 years) can begin to assume more tasks, such as insulin injections/boluses and blood glucose monitoring, but they continue to need significant assistance and supervision when making management decisions. Adolescents (ages 12 years and older) are able to perform most of the tasks of diabetes management on their own, but they still need help with decision making regarding insulin adjustments [3
]. As children reach adolescence, this ongoing need for parental involvement may conflict with the developmental task of increasing autonomy. But several studies have found that when parents give up responsibility for treatment management too early, adolescents have poorer adherence and deteriorating glycemic control [2
]. These problems with adherence may result from youth taking on responsibility for diabetes management when they do not have the maturity to handle it [5
]. Therefore, parents and other caregivers are encouraged to maintain continued involvement in treatment management throughout adolescence, and to transfer responsibility to adolescents when they demonstrate success in managing diabetes tasks. It is also important to consider that not all involvement is beneficial; over-involvement or intrusive parenting may have a negative impact on adolescents’ adaptation [6•
More recently, researchers have begun to examine the types of parental involvement that are most helpful, particularly for adolescents, who are more likely to resist involvement. For example, parental involvement that is perceived as intrusive or “nagging” may result in adolescents becoming resistant, defiant, and noncompliant, or depressed and withdrawn [7
]. In fact, a recent multinational study found that adolescent perceptions of parents as overly involved in diabetes care were a stronger predictor of poor glycemic control than age, gender, or insulin treatment regimen [8
]. Conversely, adolescents who perceive their mothers as uninvolved in diabetes treatment also have poorer adherence and lower quality of life [9
]. Parental involvement that is perceived as collaborative has been associated with the best outcomes, including better glycemic control and quality of life and fewer depressive symptoms [9
]. Taken together, these findings suggest that the goal is to encourage communication and collaboration between adolescents and their parents around treatment management.
Investigators have also begun to investigate the effects of parental monitoring as a specific type of parental involvement [10
]. Higher levels of parental monitoring, or knowledge of the child’s diabetes-specific behavior (eg, how often a child checks his/her blood sugar, how often a child skips an insulin shot or bolus), have been linked with better adherence and glycemic control [10
]. It is important to note, however, that the child’s willingness to share information (ie, disclosure) allows for increased parental monitoring. For example, if a child is having problems with treatment management, he/she may avoid talking about it or misrepresent information related to diabetes management. Conversely, if the child perceives the parent as warm and accepting, he/she may be more likely to disclose information about diabetes care [12
]. Ways to promote disclosure and increase parental monitoring, therefore, may be the target of future research and interventions.
Although the majority of studies on parental involvement have focused on mothers’ role as the primary caregiver, researchers have begun to examine the unique role that fathers play in diabetes management. Research suggests that when fathers are highly involved in care for chronically ill children, the decline in treatment adherence typically seen during adolescence no longer occurs [13
]. For example, one study found that fathers’ (but not mothers’) monitoring of diabetes tasks was directly related to glycemic control in adolescents [12
]. The effect of paternal monitoring on glycemic control appears to be mediated by improved adherence [11•
]. It is possible that fathers are not asked to step in and help mothers with diabetes treatment management until glycemic control begins to deteriorate. Further, paternal involvement in treatment management has been associated with better quality of life in adolescents (age 14 years and older), but not in younger children [13
]. There appears to be a distinct, important impact of paternal involvement in diabetes management. However, observational data indicate that fathers of adolescents with diabetes may be less energetic and responsive toward their children than fathers of adolescents without diabetes [14
], suggesting fathers may need encouragement to become actively involved before problems arise.