Edited by Frank J. Snoek and T. Chas Skinner
Diabetes in School-aged Children
1.6 Family Factors Related to Glycemic Control and Adherence
Due to the relatively small number of children under the age of 6 with diabetes, there have been few, if any, studies on how family environment variables relate to glycemic control and adherence.
For school-aged children, this area has received more attention. Waller and colleagues conducted one of the first empirical studies of families with children with diabetes under the age of 12 years.67 These authors concluded that for school-aged patients more diabetes-related family guidance and control were linked to better metabolic outcomes, and that diabetes-related parental warmth and caring were important for optimal outcomes. Liss et al. had similar findings in her study of children hospitalized with DKA, who also reported lower levels of diabetes-related warmth and caring.52
Non-diabetes-specific family factors, such as conflict, stress and family cohesion, have also been linked to glycemic control and adherence.68–74 Viner and colleagues74 found that high levels of family stress were correlated with poorer glycemic control in children under 12 years of age. In addition, the authors found that social support buffered the impact of general family stress on the children’s glycemic control. The authors emphasized that the relationship between family stress and glycemic control is ‘…bi-directional, with poor diabetic control producing family stress, as well as family stress inducing poor control in the child (p. 420).74
In contrast, other investigations have not found relationships between general family factors and metabolic control or treatment adherence in school-aged children.75–77 Various methodological and sampling issues have been used to explain these different findings with respect to the link between family stress and metabolic outcomes in school-aged children. Kovacs et al.,77 in a longitudinal study of school-aged children newly diagnosed with diabetes, found no relationship between metabolic control and two general measures of family life — parental perceptions of the quality of family life and the quality of the marriage. These authors speculate that ‘metabolic control of children may be affected by aspects of family functioning that are too subtle to have been captured by the measures of general functioning used in this study’ (p. 413).77 Moreover, Kovacs and her colleagues also suggest that a link between metabolic control and family factors in school-aged children may be shown by studying other variables that ‘mediate the relationship of family life to metabolic control’ (p. 413),77 variables such as family behavior with respect to regimen tasks. These authors also reported that for a small subset (approximately seven per cent) of their research families’ poorer ratings of the family environment at diagnosis were related to subsequent poor metabolic control.57
A second longitudinal study of school-aged children with newly diagnosed diabetes by Jacobson, Hauser and colleagues 69,78 revealed that the child’s perception of family conflict as measured by a general family measure given at diagnosis was the strongest predictor of poor adherence to insulin administration, meal planning, exercise and blood glucose monitoring tasks over a four-year follow-up period.69 The relationship between family factors and metabolic control was not examined in this report.
The connection between conflict, adherence and glycemic control was also examined by Miller-Johnson et al.71 In this study, parent-child conflict was a significant correlate of both adherence and glycemic control. In multivariate analyses, the relationship between conflict and glycemic control was nonsignificant when adherence was entered into the model. These results indicate that conflict may interfere with glycemic control by disrupting treatment adherence. Similarly, in a recent study of parenting styles, regimen adherence and glycemic control in 4-to-10-year-olds with type 1 diabetes and their parents, ‘authoritative parenting’ characterized by parental support and affection was related to better regimen adherence and more optimal glycemic control. The authors suggest that greater parental warmth may improve adherence by reducing family conflict, increasing family cohesion or both.79 ‘Authoritative parenting’, which describes a parenting style in which conflict is minimized as parents set consistent, realistic limits on children’s behavior while displaying warmth and sensitivity to their child’s needs and feelings, has been linked to improved behavioral outcomes in the general child development research literature as well as in these empirical studies in school-aged children with type 1 diabetes.80 Finally, family environments that are more structured and rule governed are associated with better glycemic control in school-aged children with type 1 diabetes, but not in adolescents.81
1.7 Family Involvement in the Diabetes Management of a School-Aged Child
One area of importance for families and health care providers concerns issues of transferring diabetes care responsibilities from the parent to the child.82 The expanding skills and increased cognitive abilities of the elementary school child make it seem reasonable to transfer more and more daily diabetes care responsibilities. However, there is a growing consensus among recent empirical studies that children and adolescents given greater responsibility for their diabetes management make more mistakes in their self-care, are less adherent and are in poorer metabolic control than those whose parents are more involved.83–88 Studies using diabetes-specific instruments have consistently found that older children assuming greater responsibility for the tasks of the treatment regimen are in poorer metabolic control than those who assumed less responsibility.85,89–91
In her important review of the empirical literature on family responsibility sharing in diabetes, Follansbee92 concluded ‘Cumulatively, these studies yield important information about the role of parent-child interaction in influencing youngsters’ assumption of diabetes management. It seems that interdependence, rather than independence, is a worthwhile goal’ (p. 350).92
From these studies, it has become increasingly clear that parental involvement in diabetes management is required throughout the school-age developmental period. Each family needs to negotiate its own acceptable pattern of parent-child teamwork, based on factors such as child temperament and parent availability. By identifying shared responsibility rather than child independence as the expectation for school-age children with diabetes, the health care team can help make parent involvement seem less inappropriate to the child or family. It is imperative that the family hears a clear message that diabetes management tasks must be protected from the child’s normal drive to achieve independent mastery.
The goals of diabetes therapy for school-aged children are to avoid severe metabolic decompensation (diabetic ketoacidosis), maintain normal height and weight, minimize the debilitating symptoms of either severely high or low blood glucose levels, establish and maintain a healthy psychosocial environment for the child and family and maintain the involvement of family members in carrying out daily injections and blood sugar monitoring. At this age, children may be more able developmentally and intellectually to recognize and appropriately treat hypoglycemia. Thus, as the child exits the preschool period, the diabetes team can now work together with the family towards improved glycemic control, with lower target blood glucose values. A recent study using the well-validated Child Health Questionnaire (CHQ) reported that psychosocial indices of well-being were better for children 5-11 years of age with type 1 diabetes who were in good control (HbAlc less than 8.8 per cent), while physical indices of well-being did not differ between youngsters in good control and those in poor control (HbAlc greater than 8.8 per cent).93 Data from Sweden and the US document that there is a limit to the extent to which lowering HbAlc may improve psychosocial and physical quality of life in children with diabetes, with severe episodes of hypoglycemia associated with the lowest health-related quality of life in children and their parents.94–96 Thus, while attempting to improve glycemic control, it is also important for the health care providers to develop treatment regimens that are minimally interruptive to the child’s school day and that balance within the child’s life the risks of hypoglycemia with the benefits of optimal control.
Overall, the diabetes treatment team must try to teach problem-solving skills to the parent(s) and child to allow flexibility in the diabetes treatment plan. Similar to the preschool period, diabetes management therapy for the school-aged child is often reactive rather than predictive. During the elementary school years the family continues to be the ‘patient’. Parents are an important part of every medical office visit, and parents maintain telephone communication for follow-up at home. At the same office visit, the child and family may see more than one member of the diabetes care team. Because the child grows rapidly during this developmental period, frequent adjustments are needed in the meal plan. Therefore, school-aged children should see the nutritionist at least once each year. The mental health specialist on the team can be especially important in the prevention and negotiation of conflicts over diabetes care issues between the parents and others (such as school personnel) while the child is away from home. To ensure a safe school environment for the child, members of the health care team must be willing to help families communicate guidelines and expectations to school personnel. Diabetes information sheets, with the phone number of the team, should be available for families to provide to the schools.
Next Week: Disease Course and Risk Factors: Implications for Clinical Practice
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