Behavioral and Psychosocial Research With School-Aged Children With Type 1 Diabetes

Barbara J. Anderson, PhD, and Lori M.B. Laffel, MD, MPH

In a recent critical essay on family research in pediatric psychology, Kazak framed two key questions for researchers: "What are the normative fluctuations in family functioning over the course of an illness and treatment? And, are there points at which different types of interventions may be most effective?"1 ^(p.144) In our review of the psychosocial and behavioral literature on school-aged children with type 1 diabetes, we have adapted these two questions as our focus, as follows:

What are the family factors that are related to metabolic and adherence outcomes in school-aged children with type 1 diabetes?

Does research identify optimal time points over the course of the disease for interventions with school-aged children with diabetes?

As context for this review of research focused on school-aged children with type 1 diabetes, we briefly describe the magnitude of diabetes in this population, followed by a discussion of normal developmental processes in the elementary school years. We then review the literature to identify family factors and timing factors (disease course and developmental course variables) related to optimal metabolic and adherence outcomes in school-aged children.

While the peak incidence of insulin-dependent (type 1) diabetes mellitus in childhood occurs during early adolescence, at ages 10–12 years in girls and at ages 12–14 years in boys, there is a steady rise in the incidence rate throughout the school-age period.² Furthermore, the number of school-aged children with diabetes is increasing because of the observed general increase in the incidence rate of diabetes in childhood and because there is an increasing number of very young children, under the age of 6 years, developing diabetes.³ Thus, more children and their families will benefit from the research efforts directed at this vulnerable group of children with diabetes.

Normal Developmental Processes in the Elementary School Years (Ages 6–12 Years)
The primary developmental tasks of children 6–12 years old take place within the context of school. Children in the early elementary school grades are faced with the need to expand their attachment relationships from family alone to include teachers and other caregivers in the school setting.

Children form close friendships with children of the same sex in the school setting and work hard to obtain approval from this peer group. School-aged children also are building a sense of accomplishment in four major domains: 1) behavioral mastery (learning impulse control and learning to behave within acceptable limits and guidelines); 2) academic mastery; 3) physical mastery or sports accomplishments; and 4) artistic mastery or creative accomplishments.⁴

As children develop new levels of self-control and intellectual, athletic, and artistic skills during this period, their new sense of personal competence forms the foundation for their self-evaluation in comparison to the abilities of their peers. Developmental psychologists have called this period "The Tom Sawyer Years" for boys⁵ or the "I Can Do Anything Years" for girls⁶ because the thrust of developmental energy is on "doing," and self-esteem hinges on how well the child "does" things. The research on school-aged children with diabetes, however, makes it clear that diabetes tasks must be protected from the child’s normal drive to achieve independent mastery.

Family Factors Related to Metabolic and Adherence Outcomes in School-Aged Children

Diabetes-specific family factors
One of the first empirical studies of the family in children with diabetes under the age of 12 years was conducted by Waller and associates.⁷ These investigators developed a 60-item diabetes-specific family behavior scale. This scale was based on the theory that family support is multidimensional and "consists of at least three different critical dimensions: warmth-caring, guidance-control, and problem-solving."^{7, p. 415}

These researchers gave the Diabetes-Specific Family Behavior Scale to children ranging in age from 7 to 17 years. Their parents completed a modified form of the scale. Glycosylated hemoglobin was collected for each patient.

The data were analyzed according to age-group, adolescents (n = 18) versus children under the age of 13 years (n = 20). The only significant association was between family guidance-control and HbA_1c for the subjects who were 12 years old or younger. The authors reported that for this younger group, the guidance-control item "Parent tests sugar" was significantly correlated with better metabolic control (lower HbA_1c), whereas the items "I do my own sugar testing," "I take care of my diabetes myself," and"My parent believes testing sugar is up to me" were all significantly but inversely related to control. Two items on the warmth-caring subscale, which tapped the children’s perceptions that they could talk about diabetes in their family and that their parents understand how they feel about diabetes were significantly related to better metabolic control for both age-groups.

The authors concluded that for younger, school-aged patients, more diabetes-related family guidance and control was linked to better metabolic outcomes, and that diabetes-related parental warmth and caring were important both for school-aged children and for adolescents. A further investigation of the Diabetes-Specific Family Behavior Scale underscored that the dimension of family guidance-control was especially important with respect to metabolic outcomes.⁸

Warzak and colleagues⁹ surveyed parents of children with diabetes as to their perception of obstacles to achieving optimum diabetes care and control. The ages of the children of the study parents were not reported. However, because the sample was identified through a state chapter of the Juvenile Diabetes Foundation, there is a high probability that the survey included parents of school-aged children. Parents completing the questionnaire identified items involving home monitoring of blood glucose as the most significant obstacle to good diabetes control (e.g., "My child will not monitor without prompts" or "My child will not monitor if he/she is not at home"). Clearly, parents expected their children to monitor blood glucose levels independently.

It is important to highlight the prominence of blood glucose monitoring in these two studies, particularly in the context of our recent findings of a strong association between the frequency of blood glucose monitoring and glycemic control.¹⁰ In the previous study by Waller and associates,⁷ the school-aged children’s perception of parental support for blood glucose monitoring tasks was related to better metabolic control. In the pilot survey research by Warzak and associates,⁹ parents identified difficulties in having their children carry out blood glucose monitoring tasks as the most significant obstacle to good diabetes care and control.

General family factors
A relationship between general family factors or general stressors and metabolic control in school-aged children under 12 years of age was documented by Viner and colleagues.¹¹ In this research sample, social support was found to buffer the impact of general family stresses (i.e., economic hardships or marriage problems) on children’s metabolic control. These authors emphasized that the relation between family stress and metabolic control is ". . . bi-directional, with poor diabetic control producing family stress, as well as family stress inducing poor control in the child."^{11 (p. 420)} The authors suggested that families with high life stress and school-aged children in poor metabolic control are the appropriate targets for interventions by health professionals.

In contrast, other investigations have not found relationships between general family factors and metabolic control or treatment adherence in school-aged children.^12-14 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 and associates,¹⁴ in a longitudinal study of school-aged children newly diagnosed with type 1 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 speculated 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." Moreover, Kovacs and her colleagues also suggested 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,"^{14 (p.413)} variables such as family behavior with respect to regimen tasks. These authors also reported that, for a small subset (~7%) of their research families, a poor family environment at diagnosis was related to subsequent poor metabolic control.

A second longitudinal study of school-aged children newly diagnosed with type 1 diabetes, by Jacobson, Hauser, and colleagues,^15,16 revealed that children’s perceptions of family conflict as measured by a general family measure was the strongest predictor of poor adherence to insulin administration, meal planning, exercise, and blood glucose monitoring tasks over a 4-year follow-up period.¹⁶ Lower adherence at year 4 was predicted by a child’s report of family conflict at year 1.¹⁶ The relationship between family factors and metabolic control was not examined in this report.

Hanson and associates¹⁷ have reported a relationship between disease-specific family factors and general family factors and have also reported that both types of family measures relate to treatment adherence. However, the subjects in this research were not school-aged children but rather adolescents with a mean age of 15 years.

In summary, with respect to diabetes-specific family functioning, parental guidance and direction in diabetes management have been shown to relate to both treatment adherence and metabolic control in school-aged children with type 1 diabetes. However, these findings contrast with two fundamental issues, one related to the school-aged children and the second to their parents. First, given that during the school-aged years, a child’s normal developmental striving is toward "doing," it may be difficult and, at times, seem impossible for parents to provide guidance or be involved in diabetes management tasks. Second, as reported in the survey by Warzak and associates,⁹ while parents perceive that it may be difficult to get their children to perform blood glucose monitoring tasks, parents expect children to take the responsibility for monitoring tasks. It is clear that these parents defined blood glucose monitoring as the child’s "job."

Data with respect to general or non-diabetes-specific measures of family functioning have yielded less consistent results. When relationships between general family factors and children’s outcomes were reported, general family conflict or general family stress documented at diagnosis seemed to be the strongest link to children’s subsequent adherence or metabolic control.

Drotar,18 in a recent critical review of family research across chronic childhood diseases, concluded that illness-specific measures seem to reveal more powerful influences on child adaptation than do measures of general family functioning. In our review of the family environment of school-aged children with diabetes,¹⁰ diabetes-specific parental involvement clearly emerged as a critical variable for optimizing metabolic and adherence outcomes. This provides the health care team with the opportunity to improve health outcomes by reinforcing sustained parental responsibility for their child’s diabetes management.

Optimal Time Points for Interventions With School-Aged Children

Stages of the disease course
The groundwork for understanding stages of the disease course in diabetes has been laid by three major longitudinal investigations, which have followed school-aged children recently diagnosed with type 1 diabetes over the early years of their disease. Two research teams followed recently diagnosed children and families over their first decade of life with diabetes.^15,16,19-22 The third investigation, by Grey and colleagues,²³ studied a newly diagnosed cohort of children carefully over their first 2 years of living with diabetes.

The longitudinal study by Kovacs and associates^19,20 followed patients from 2–3 weeks after diagnosis for 6 years. Results from yearly evaluations indicated that as type 1 diabetes duration increased, patients’ emotional distress about diabetes management increased. Children rated the management regimen as more difficult the longer they had diabetes.¹⁹

This result contrasted with the finding that mothers of these children found it easier to cope with type 1 diabetes as duration increased.²⁰ The finding that the mothers found it easier to cope with diabetes as duration increased "could reflect that the children had to take increasing responsibility for (their own) diabetes care."^{19 (p. 630)}

Kovacs and associates²¹ also examined "noncompliance with medical treatment" and demonstrated that 1 in 2 patients will become noncompliant to the point of endangering their health. Noncompliance or nonadherence emerged at an average of 3.5 years postdiagnosis and at an average age of 15 years, indicating that years 3 and 4 following the diagnosis of type 1 diabetes, as well as the adolescent period, may be particularly high-risk times for noncompliance. Kovacs and colleagues²¹ suggested that the period of time between diagnosis and the onset of adherence problems may reflect a critical period of adaptation to type 1 diabetes, and that because a low recovery rate was found with noncompliance, interventions to prevent its development are needed during the early period of adaptation.

Adherence to the treatment regimen was also a focus of the longitudinal studies of Jacobson,^15,22 in which patients were followed from within the first 9 months of diagnosis. These researchers reported that within this patient cohort of newly diagnosed children and adolescents, patients who were school-aged at diagnosis (<13 years) had better adherence over a 4-year follow-up period than did patients who were older (>12 years) at diagnosis.¹⁵

Data from this longitudinal study revealed that "patterns of adherence established early in Year 1 are maintained over time"^{15 (p.523)} although deterioration in adherence occurred as duration increased. Consistent with Kovacs’ findings, greater deterioration in adherence was also found for 13- to 15-year-old patients.

Data from this prospective study²⁴ also indicate that early in the course of the disease, youth with type 1 diabetes establish a pattern of glycemic level and regularity of medical appointment-keeping. Youth with the best glycemic control in the first 4 years of type 1 diabetes who also maintained regular medical follow-up visits had the lowest incidence of retinopathy outcomes 10–12 years after diagnosis.

Grey and colleagues²³ studied a cohort of 8- to 14-year-old children newly diagnosed with diabetes and a nondiabetic peer comparison group. The researchers reported that children’s adjustment problems at diagnosis disappeared at 1 year postdiagnosis but reappeared at 2 years postdiagnosis. These researchers argued that while previous studies have suggested that the period immediately after diagnosis is the most crucial, their data suggest that a second period of adjustment occurs in the second year after diagnosis, and that intervention is important during the critical second year of life with diabetes for prevention of psychosocial deterioration.

In summary, rigorous longitudinal studies over the course of diabetes in children have revealed two important points. First, a period of difficulty in adjusting to diabetes occurs at diagnosis and also during the second year postdiagnosis. Second, treatment adherence patterns seem to be established in the early years, 2–4 years postdiagnosis.

The results of these studies indicate that interventions should be carried out after diagnosis before poor adherence patterns can be established. Moreover, there seems to be "tracking"²⁵ in glycemic control, as well as in adherence behavior, over time. The logical point for building the scaffolding that will support adherence to the rigorous treatment regimen by children and families is, therefore, in the early years postdiagnosis.

Stages of child development
Investigators measuring family sharing of responsibilities for diabetes tasks have reported that as children develop from the school-age years to early adolescence, they assume greater responsibility for tasks of the treatment regimen.^26-28 While increasing responsibility during the school-aged years is consistent with the developmental task of mastery, investigators have reported that children who have more responsibility for diabetes management tasks have more mistakes in their self-care, are less adherent, and are in poorer metabolic control.^27,29,30 Savinetti-Rose³¹ has suggested that well-intentioned efforts to educate children with diabetes may inadvertently encourage "some children to do ‘too much too soon’ in managing their diabetes."^{31 (p. 11)} These studies all suggest that during the school-aged years, responsibility for diabetes tasks on a day-to-day basis should be protected from expectations for independent child mastery and parent withdrawal of support.

Summary and Implications for Future Research and for Health Care Delivery

This review of the literature suggests clear answers to Kazak’s questions posed at the beginning of this paper:

To optimize adherence and metabolic outcomes, responsibility for diabetes tasks must be maintained by parents of school-aged children with diabetes.

The time of diagnosis of diabetes is a crisis deserving the involvement of behavioral and psychosocial professionals. However, the second year of living with diabetes also represents a difficult period of adjustment. Moreover, many children hit a nadir in adherence during their third year after diagnosis. The school-age years may provide an opportunity for the prevention of the expected deterioration in adherence to treatment that occurs during adolescence.

Over the elementary school years, all children expand their skills across a broad range of areas—athletic, artistic, scholastic, and self-control. The psychosocial and behavioral literature on school-aged children with diabetes strongly suggests that as children gradually participate in various aspects of diabetes self-management, parental responsibility for diabetes care tasks must be sustained throughout this developmental period.

This expectation for continued parental involvement throughout the school-aged years and into adolescence must be introduced to children and families as early in the disease course as possible. As the onset of puberty marks a dramatic change in children’s physical and emotional development, as well as in their role within the family, children with diabetes and their parents must be prepared to protect diabetes responsibilities from this dramatic change.

As Waller and associates⁷ suggested, it may be especially important to target home monitoring of blood glucose levels as a domain of sustained parental responsibility. Recent data from our research group¹⁰ support this idea. In a sample of young adolescents aged 11–15 years, patients who shared responsibilities for monitoring blood glucose with their parents monitored significantly more frequently. In addition, more frequent monitoring was directly related to lower HbA_lc values in this young adolescent sample.¹⁰ Moreover, we have recently demonstrated that parental involvement can be maintained over the early adolescent years without an increase in diabetes-related family conflict.³²

Finally, the longitudinal data reviewed here indicate that patterns of adherence established early in the course of diabetes persist. As health care systems seek to maximize metabolic outcomes and adherence behavior in all patients with diabetes, the studies reviewed here argue for the high-risk status of school-aged children recently diagnosed with type 1 diabetes and for the importance of allocating resources for the implementation of family-centered interventions early in the disease course for school-aged children with diabetes and their families.

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