Linda M. Siminerio , Anastasia Albanese-O’Neill , Jane L. Chiang , Katie Hathaway , Crystal C. Jackson , Jill Weissberg-Benchell , Janel L. Wright , Alan L. Yatvin , Larry C. Deeb; Care of Young Children With Diabetes in the Child Care Setting: A Position Statement of the American Diabetes Association. Diabetes Care 1 October 2014; 37 (10): 2834–2842. https://doi.org/10.2337/dc14-1676
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toolbar searchDiabetes is a relatively common chronic disease of childhood (1); however, capturing prevalence data in children with type 1 and type 2 diabetes has been challenging. The comprehensive SEARCH for Diabetes in Youth (SEARCH) study has made significant strides in better understanding disease prevalence in the pediatric population. A recent SEARCH study found that 1.93 per 1,000 youth (aged
Infants, toddlers, and preschool-age children (≤5 years of age) are enrolled in the more than 330,000 child care programs across the country (7). These children wholly depend on adults for most, if not all, aspects of their care. Pediatric health care providers, parents/guardians, and child care staff must work together to ensure that young children with diabetes are provided with the safest possible child care environment. This collaboration is essential to achieve a seamless transition in care from home to the child care setting.
Managing type 1 diabetes in young children in child care programs presents unique challenges due to the young child’s developmental level. The limited communication and motor skills, cognitive abilities, and emotional maturity of young children can challenge even the most experienced child care provider. For example, young children with hypo- or hyperglycemia may or may not exhibit abnormal behavior or irritability. As erratic behavior is typical in this age-group, the child care provider may not recognize hypo- or hyperglycemic symptoms and may miss the fact that the behavior is caused by low or high blood glucose levels that may require treatment.
The diabetes regimen must be adapted quickly to the child’s dynamic growth and development. As the child develops and desires greater autonomy, child care providers and parents/guardians may face challenges with the toddler’s refusal to cooperate with his or her diabetes care regimen (8). Once the child enters the prekindergarten years, he or she may begin to be able to participate in his or her own care by indicating food preferences, checking blood glucose, and choosing a finger-prick or injection site. With further cognitive and physical development, he or she may verbalize symptoms and become more cooperative, but the child still needs constant supervision and blood glucose monitoring to detect hypo- or hyperglycemia. The age at which children are able to perform self-care tasks is variable and depends on the individual child’s capabilities, but self-care is not expected from the young child and the parent/guardian or other caregiver must provide diabetes management and perform associated diabetes care tasks such as blood glucose monitoring and insulin administration (5,8) (Table 1).
Major developmental issues and their effect on diabetes in children and adolescents
| Developmental stages (ages) . | Normal developmental tasks . | Type 1 diabetes management priorities . | Family issues in type 1 diabetes management . |
|---|---|---|---|
| Infancy (0–12 months) | Developing a trusting relationship or bond with primary caregiver(s) | Preventing and treating hypoglycemia | Coping with stress |
| Avoiding extreme fluctuations in blood glucose levels | Sharing the burden of care to avoid parent burnout | ||
| Toddler (13–26 months) | Developing a sense of mastery and autonomy | Preventing hypoglycemia | Establishing a schedule |
| Avoiding extreme fluctuations in blood glucose levels due to irregular food intake | Managing the picky eater | ||
| Limit-setting and coping with toddler’s lack of cooperation with regimen | |||
| Sharing the burden of care | |||
| Preschooler and early elementary school (3–7 years) | Developing initiative in activities and confidence in self | Preventing hypoglycemia | Reassuring the child that diabetes is no one’s fault |
| Coping with unpredictable appetite and activity | Educating other caregivers about diabetes management | ||
| Positively reinforcing cooperation with regimen | |||
| Trusting other caregivers with diabetes management | |||
| Older elementary school (8–11 years) | Developing skills in athletic, cognitive, artistic, and social areas | Making diabetes regimen flexible to allow for participation in school or peer activities | Maintaining parental involvement in insulin and blood glucose management tasks while allowing for independent self-care for special occasions |
| Consolidating self-esteem with respect to the peer group | Child learning short- and long-term benefits of optimal control | Continuing to educate school and other caregivers | |
| Early adolescence (12–15 years) | Managing body changes | Increasing insulin requirements during puberty | Renegotiating parent and teenager’s roles in diabetes management to be acceptable to both |
| Developing a strong sense of self-identity | Diabetes management and blood glucose control becoming more difficult | Learning coping skills to enhance ability to self-manage | |
| Weight and body image concerns | Preventing and intervening in diabetes-related family conflict | ||
| Monitoring for signs of depression, eating disorders, and risky behaviors | |||
| Later adolescence (16–19 years) | Establishing a sense of identity after high school (decisions about location, social issues, work, and education) | Starting an ongoing discussion of transition to a new diabetes team (discussion may begin in earlier adolescent years) | Supporting the transition to independence |
| Integrating diabetes into new lifestyle | Learning coping skills to enhance ability to self-manage | ||
| Preventing and intervening with diabetes-related family conflict | |||
| Monitoring for signs of depression, eating disorders, and risky behaviors |
| Developmental stages (ages) . | Normal developmental tasks . | Type 1 diabetes management priorities . | Family issues in type 1 diabetes management . |
|---|---|---|---|
| Infancy (0–12 months) | Developing a trusting relationship or bond with primary caregiver(s) | Preventing and treating hypoglycemia | Coping with stress |
| Avoiding extreme fluctuations in blood glucose levels | Sharing the burden of care to avoid parent burnout | ||
| Toddler (13–26 months) | Developing a sense of mastery and autonomy | Preventing hypoglycemia | Establishing a schedule |
| Avoiding extreme fluctuations in blood glucose levels due to irregular food intake | Managing the picky eater | ||
| Limit-setting and coping with toddler’s lack of cooperation with regimen | |||
| Sharing the burden of care | |||
| Preschooler and early elementary school (3–7 years) | Developing initiative in activities and confidence in self | Preventing hypoglycemia | Reassuring the child that diabetes is no one’s fault |
| Coping with unpredictable appetite and activity | Educating other caregivers about diabetes management | ||
| Positively reinforcing cooperation with regimen | |||
| Trusting other caregivers with diabetes management | |||
| Older elementary school (8–11 years) | Developing skills in athletic, cognitive, artistic, and social areas | Making diabetes regimen flexible to allow for participation in school or peer activities | Maintaining parental involvement in insulin and blood glucose management tasks while allowing for independent self-care for special occasions |
| Consolidating self-esteem with respect to the peer group | Child learning short- and long-term benefits of optimal control | Continuing to educate school and other caregivers | |
| Early adolescence (12–15 years) | Managing body changes | Increasing insulin requirements during puberty | Renegotiating parent and teenager’s roles in diabetes management to be acceptable to both |
| Developing a strong sense of self-identity | Diabetes management and blood glucose control becoming more difficult | Learning coping skills to enhance ability to self-manage | |
| Weight and body image concerns | Preventing and intervening in diabetes-related family conflict | ||
| Monitoring for signs of depression, eating disorders, and risky behaviors | |||
| Later adolescence (16–19 years) | Establishing a sense of identity after high school (decisions about location, social issues, work, and education) | Starting an ongoing discussion of transition to a new diabetes team (discussion may begin in earlier adolescent years) | Supporting the transition to independence |
| Integrating diabetes into new lifestyle | Learning coping skills to enhance ability to self-manage | ||
| Preventing and intervening with diabetes-related family conflict | |||
| Monitoring for signs of depression, eating disorders, and risky behaviors |
Language barriers, ethnic and cultural practices, limited resources and support, geography (rural vs. urban setting), and health literacy and capabilities must also be considered in developing the care plan.
Another challenge in the child care setting may be staff turnover and ensuring that trained staff members remain available. Regardless, the child care program must be prepared to provide needed care to the child, and parents and health care providers play a pivotal role in partnering with the child care staff.
The Diabetes Control and Complications Trial (DCCT) showed a significant link between blood glucose control and a slower onset and progression of diabetes complications in adults and adolescents, with improved glycemic control decreasing the risk of micro- and macrovascular complications (5,9,10). Although the DCCT did not include young children (the lower age limit at enrollment was 13 years), the general message—optimize blood glucose control while avoiding hypoglycemia—has been clinically applied to young children. Furthermore, recent data from cross-sectional neuroimaging studies in young children appear to reinforce the importance of aiming for blood glucose levels in range and avoiding hypo- and hyperglycemia (11).
The parent/guardian remains primarily responsible for determining and providing healthy food choices for the child. The parent/guardian should educate the staff on general information on the carbohydrate content of the food, regardless of whether it is provided by the parent/guardian or child care program. If a child care program provides the meals and snacks, the parent/guardian and the child care provider should work together to determine appropriate food choices and portion sizes for the child. The child care program should ensure that the child eats the appropriate amount of food that is being covered by insulin in accordance with the diabetes medical management plan (DMMP). See the section on DMMP for further details.
For children who regularly attend child care programs for longer durations or where meals or snacks and physical activity are part of the daily schedule, sufficient staff should receive comprehensive training in diabetes management and be prepared to provide diabetes care as needed. At least one staff member should be available at all times to help with food decisions, blood glucose monitoring, and insulin administration.
Increased sensitivity in caring for the child around special occasions (such as parties/celebrations), physical activities, or illnesses is particularly important. The child should be allowed to participate in celebrations, but special considerations may be required to accommodate the child’s diabetes needs. Effective communication between the child care staff and the parent/guardian to anticipate the adjustments (e.g., administering additional insulin to account for the birthday cake) will enable the young child to feel included. Resources are available to parents/guardians, child care providers, and health care providers to assist with this education and training (12–15).
Children who participate in programs for only a few hours may consume snacks and not meals; therefore, insulin administration may not be required in the child’s DMMP. However, at a minimum, in order to facilitate safe diabetes care in all child care programs, child care staff must have a basic understanding of diabetes; be able to check blood glucose levels; be able to prevent, recognize, and treat hypoglycemia; be able to handle diabetes emergencies; and know who to contact for help (12–14,16).
For the very young child, the diabetes management priority is the prevention and management of hypoglycemia and the avoidance of wide fluctuations in blood glucose levels. Parents/guardians face the perpetual struggle of balancing the risk of long-term complications from hyperglycemia with the fear of acute hypoglycemia, all while trying to facilitate a “normal” childhood. More notably, parents worry about the possibility of cognitive deficits and/or death if a severe hypoglycemic event is undetected and untreated. Therefore, hypoglycemia prevention is critical. Child care staff should be educated on how to prevent and recognize hypoglycemia by monitoring the child’s food consumption, activity, and behavior and confirming a suspected low with blood glucose monitoring (5,8,17). Parents/guardians should provide specific strategies, if needed, to help the child care staff address the individual child’s specific needs. Routine blood glucose monitoring at prespecified times may help to detect hypoglycemia before it manifests with acute symptoms in the child.
Although hypoglycemia is a significant concern, hyperglycemia should be managed as well. The child may experience frequent urination (polyuria), which may be confused with “heavy diapers” or “wetting accidents,” a common occurrence in this age-group anyway. A child care provider unfamiliar with diabetes and polyuria may not realize that the child is hyperglycemic, requiring insulin, and instead may feed the child or give him or her juice, inadvertently aggravating hyperglycemia. Untreated hyperglycemia may lead to ketone production, which may be measured by checking urine ketones.
Blood glucose monitoring allows child care providers to assess if a child is hypo- or hyperglycemic and perform appropriate interventions. Blood glucose levels need to be checked before meals/snacks, before physical activity, and when the child exhibits symptoms of hypo- or hyperglycemia. These symptoms may be subtle, especially in young children. For this reason, blood glucose needs to be checked more frequently in young children.
Some children use a continuous glucose monitor (CGM) to record blood glucose levels. CGM results must be confirmed with blood glucose tests. Parents/guardians should discuss CGM management with child care providers. A basic understanding of CGM use is warranted, but detailed management should not be expected of child care providers. Safe monitoring must include the following recommendations:
Blood lancing devices must not be reused, point-of-care devices should only be used for the designated child, and child care providers should use gloves when testing (8). The ADA’s Safe at School program is a helpful resource to assist schools (18).
Children with diabetes who attend child care programs must have access to insulin, glucagon, and other medications to safely participate in the programs. Training child care staff on insulin administration is a critical component of diabetes management, especially for those caring for children who participate in daylong (4- to 8-h) programs and who will likely need insulin administered during the programs. For resources, please see resources for ADA’s Safe at School program.
Glucagon may be indicated if a child has severe hypoglycemia and is unable to consume glucose or is having a hypoglycemic seizure. Although a glucagon kit requires a prescription, any individual may administer glucagon. Child care staff should be trained in the administration of glucagon or, if indicated, mini-dose glucagon (19). It is also important to ensure that the glucagon kits are not expired (5).
The child’s written care plan, such as the DMMP, facilitates appropriate diabetes management and is essential to achieving optimal glycemic control. The DMMP contains the medical orders that are the basis for the provision of care in the child care setting and is the child’s individual care plan. It is developed by the child’s own diabetes health care provider with input from the parent/guardian. A sample DMMP for the child care setting may be found at the end of this document or at www.diabetes.org/childcare. The DMMP should address the specific needs of the child and provide instructions for each of the following:
The child care program needs to coordinate and arrange diabetes education provided by a diabetes health care professional and/or the parent/guardian at an appropriate level and with proper considerations for the child care staff. All staff members responsible for the child should have a basic knowledge of the child’s diabetes, understand basic diabetes management, and know who to contact for help. Designated staff members who will be performing diabetes care tasks need advanced diabetes education that includes blood glucose monitoring, insulin and glucagon administration, monitoring of carbohydrate intake and physical activity, and recognizing and treating hyperglycemia (monitoring for excessive urination or thirst, allowing bathroom privileges, and administering insulin) and hypoglycemia (monitoring for sleepiness, lethargy, shakiness, or other symptoms and providing appropriate carbohydrate sources even if outside the allotted snack or meal time frames). Emergency treatment, including glucagon administration, should also be taught with clear instructions for the next steps if the interventions are unsuccessful (Table 2).
Diabetes care tasks prescribed by DMMP to be provided by child care staff
| Task . | Frequency . | Equipment/supplies (provided by parent/guardian) . |
|---|---|---|
| Blood glucose monitoring | Before food intake and physical activity and when low or high blood glucose is suspected | Blood glucose meter, lancet, lancing device, test strips, CGM* |
| Insulin administration | Before or after food intake and to treat high blood glucose | Insulin, delivery device (pump, pen, syringe) |
| Food intake scheduling and monitoring | Snacks and meals provided and/or monitored to ensure food consumption is in accordance with insulin dosing | Food, carbohydrate information |
| Hypoglycemia treatment | Awareness that unusual behaviors after physical activity or insulin administration may signify hypoglycemia | Quick-acting carbohydrate and glucagon |
| Hyperglycemia treatment | Awareness that increased urination or drinking may signify hyperglycemia | Noncarbohydrate-containing liquid, insulin |
| Ketone monitoring | Check ketones if repeated blood glucose tests show elevation above target range or if the child is ill | Urine or blood ketone strips, ketone monitor |
| Task . | Frequency . | Equipment/supplies (provided by parent/guardian) . |
|---|---|---|
| Blood glucose monitoring | Before food intake and physical activity and when low or high blood glucose is suspected | Blood glucose meter, lancet, lancing device, test strips, CGM* |
| Insulin administration | Before or after food intake and to treat high blood glucose | Insulin, delivery device (pump, pen, syringe) |
| Food intake scheduling and monitoring | Snacks and meals provided and/or monitored to ensure food consumption is in accordance with insulin dosing | Food, carbohydrate information |
| Hypoglycemia treatment | Awareness that unusual behaviors after physical activity or insulin administration may signify hypoglycemia | Quick-acting carbohydrate and glucagon |
| Hyperglycemia treatment | Awareness that increased urination or drinking may signify hyperglycemia | Noncarbohydrate-containing liquid, insulin |
| Ketone monitoring | Check ketones if repeated blood glucose tests show elevation above target range or if the child is ill | Urine or blood ketone strips, ketone monitor |
This device may or may not be used by the child.
Federal antidiscrimination laws, including the Americans with Disabilities Act (20) and Section 504 of the Rehabilitation Act of 1973 (Section 504) (21), prohibit discrimination on the basis of disability. The Individuals with Disabilities Education Act (IDEA) requires prekindergarten programs to identify children with disabilities and to provide them with a free and appropriate education (22).
The Americans with Disabilities Act prohibits discrimination against people with disabilities by places of public accommodation, including camps and child care programs. This includes even a home-based setting, if the program is open to the public. Programs operated by religious organizations, such as a child care program run by a church, are not subject to the nondiscrimination obligations under federal law unless the program receives federal funds. Child care providers with obligations under the Americans with Disabilities Act must make reasonable modifications to their policies and practices to enable a child with a disability, such as diabetes, to fully participate in the program unless the modifications impose an “undue hardship” or cause a “fundamental alteration” to the nature of the program (20,21,23). The child care program must conduct an individual assessment to determine whether or not it can meet the child’s needs without imposing undue hardship or fundamentally altering the program.
Section 504 prohibits discrimination on the basis of disability by any entity receiving federal funds—including religious organizations. Types of programs covered by Section 504 might include after-school child care programs offered by a public school system and child care programs run by universities. The obligations of a child care program subject to Section 504 are very similar to those obligations under the Americans with Disabilities Act, including a requirement to conduct an individualized assessment of a child’s needs. Both the Americans with Disabilities Act and Section 504 require programs to provide disability-related accommodations if they are necessary and reasonable. Many of the needed accommodations can be provided by the child care program without significant costs. Some accommodations that may be needed include having a trained employee who can perform blood glucose checks, administer insulin and glucagon, recognize and promptly treat hypo- and hyperglycemia, and make sure the child consumes needed carbohydrates.
In addition, many states have laws that impact the provision of diabetes care in the child care setting. Even though federal laws provide protection for children with disabilities, such as diabetes, state laws, regulations, or policies and guidelines often affect whether nonnursing staff in the child care setting can administer medication, including insulin and glucagon, to a child with diabetes. Some states have specific child care rules that place requirements on child care programs to provide care to children with chronic illness, specify how staff must be trained, or specify whether and how medication may be administered to children. State laws cannot, however, lessen a child care program’s obligations under federal law.
Children with diabetes in child care programs still face discrimination despite the protections and requirements of federal and state laws. For example, some child care programs refuse to enroll a child with diabetes, and some programs refuse to allow a newly diagnosed child back into the program. Some centers will enroll a child only if the parent/guardian agrees to come to the center to provide needed care. Many other programs have “no injection” or “no medication” policies that do not consider the individual child’s needs. This type of treatment jeopardizes the health and safety of the child, and such blanket policies are unlawful. For more information and resources to help with diabetes management in the child care setting or if a child is experiencing discrimination in the child care setting, call 1-800-DIABETES (342-2382) or go to www.diabetes.org/childcare.
Here, we reiterate the discussed concepts; however, the section is structured so that it outlines the legal principles and the roles and responsibilities of the individuals involved.
It is well understood that young children with diabetes have unique needs. Young children require a carefully thought-out, proactive diabetes care plan and not a reactive one (i.e., crisis management) that must be developed with the health care provider, parents/guardians, and child care staff. Unfortunately, despite all the best efforts of the parents/guardians, care may be suboptimal in the child care setting. For those instances, there are federal laws that protect the rights of the young child. Violation of these rights may be subject to legal action. Recommended resources for parents are listed below. We encourage parents/guardians of young children with diabetes to share this Position Statement with their child care providers. Ensuring the long-term health of and providing the best care to these young children should be of paramount importance.
This Position Statement was reviewed and approved by the Professional Practice Committee in July 2014 and approved by the Executive Committee of the Board of Directors in July 2014.
Acknowledgments. The authors thank Erika Gebel Berg (ADA) for her editorial assistance and Shereen Arent (ADA) for her review of the manuscript. The authors also thank the members of ADA’s Professional Practice Committee and Executive Committee of the Board of Directors for their review of the manuscript.
Duality of Interest. No potential conflicts of interest relevant to this article were reported.
