Children with Diabetes: Perceptions of Supports for Self-Management at School

Beginning of article

Diabetes is a common chronic illness for children, with a prevalence rate of about 1 in every 400 to 500 children. More than 125,000 youth under age 19 have diabetes, and about 13,000 new cases are diagnosed each year. (1-3) School staff may lack knowledge about how to assist children with diabetes. (4,5) Improved management of diabetes in childhood can improve academic performance and reduce physical complications related to diabetes as children grow older. (6-8)

Enhancing understanding of how to mobilize support for children with type 1 diabetes in the multiple contexts in which these children live represents an important area for research. (9) Most of the research has focused on peer and family support. (10-12) The American Diabetes Association has developed guidelines for diabetes management at school. (4) However, more research about children's perceptions of supports for diabetes management at school will educate school staff and improve learning environments for youth. (6,13) This research examined children's and adolescents' perceptions of supports for diabetes management in the school setting.

A literature search revealed no studies examining children's perceptions about managing their diabetes at school. However, one article in the Diabetes Forecast provided information on parental perceptions of managing diabetes at school. (14) Surveys from 263 parents of children with diabetes revealed that about two-thirds perceived management in school as an area of serious concern. (14) Parents mentioned that some school personnel need to become more knowledgeable about caring for their child's diabetes.

In addition to increased knowledge about diabetes, other procedures may facilitate diabetes management. For example, school staff may need to improve their ability to recognize and assist children during episodes of hypoglycemia, which children may call "feeling low." These episodes can cause significant physical and psychological distress for youth. (15) Allowing children to use test kits, and to take breaks to eat or drink when they are "feeling low," are other key ingredients for successful diabetes management. Ensuring that children do not feel singled out, and being flexible so children can self-manage their treatment, also may facilitate adherence to their medical regimen at school. (16) Due to funding shortages, some schools may not have a nurse present each weekday. If a child with diabetes experiences a hypoglycemic episode and does not receive proper care immediately, serious medical complications can result. Teachers and peers must have some knowledge of diabetes to help children manage the beginning stages of "lows" and "highs" (hyperglycemia).

Qualitative methods may be a good research method for providing knowledge about younger children's experience of their illness. (17,18) Ronen and colleagues (19) used qualitative methods with elementary school children to examine their perceptions of epilepsy and supports for managing their illness. Focus groups and interviews, combined with "child-friendly" approaches incorporating a "child life approach" using games and prizes, may provide an empowering environment for children to share their views. (17) A mixed-methods approach, combining qualitative and quantitative techniques, was used for this study. Combining qualitative and quantitative techniques is an advantageous method when seeking to learn about children's perceptions of sensitive topics, such as attitudes toward a chronic illness. (17,18,20) Kistner and colleagues (21) used qualitative and quantitative techniques to evaluate information from interviews designed to examine children's perceptions of AIDS. Quantitative techniques were used to verify qualitative findings, using the triangulation method (17) to examine findings from groups, interviews, and surveys completed with children and young adolescents attending summer camps sponsored by the American Diabetes Association. (22,23)

Most qualitative research on diabetes management for youth has focused on adolescents' perceptions of parental and peer support. (11,12,19,24-26) Adolescence is a difficult time for children, in terms of adhering to diabetes regimens. (12) Kovacs and colleagues (27) followed a sample of children ages 8 to 13 with diabetes until late adolescence. As the children became older, they viewed diabetes management as more difficult. Understanding ways to facilitate children's management of diabetes at younger ages may improve their ability to manage the illness during later adolescence. This study advances research by using mixed methods, including groups, interviews, and surveys, to assess children's and young adolescents' perceptions of supportive behavior by nurses, teachers, and friends that allow them to improve their diabetes management at school. Questions addressed two key areas of support: monitoring blood glucose levels and following meal plans at school.

METHODS

Participants

One hundred five children, including 60 boys and 45 girls, participated in the interviews and groups. Twenty-one attended a day camp for younger children aged 5 to 10 years, and 84 attended the camp for older children aged 9 to 14 years. Six children were African American and the others were Caucasian. All children had type 1 diabetes. Mean age was 10 years, 11 months (SD = 2 years, 2 months) and ages ranged between 6 years and 14 years and 6 months. Ninety percent of the children had siblings.

Seventy-eight parents, across both camps, completed …