Mastering Self- Management: A guide for parents of young children and teens with type 1 diabetes

By Sripriya Raman, MD, Heather Feingold, LCSW, Lara Simon, LCSW, CDE

All parents want their children to become healthy, happy and independent adults. When you’re a parent of a child with type 1 diabetes, sometimes figuring out how to do that is a huge challenge. Diabetes care does add a whole new level of responsibilities and obligations for patients and their families. As parents you are faced with difficult decisions about when to shift the diabetes management from you to your child. If you make this shift too early your child may become noncompliant to care, experience treatment errors, or experience failure and disappointment. If you make this shift too late, your child may question their ability to take care of themselves or may feel inadequate and have difficulty assuming responsibility later in life.

The transfer of diabetes management from a parent to a child is a process and should be done with thought and preparation. Here we have provided developmentally appropriate type 1 diabetes self-care tasks to assist you in preparing a well-thought-out plan to make this transition smooth and successful.

Infants (up to 1 year old)

Children at this stage are developing a sense of trust with parents and the world around them. Erratic sleeping and eating patterns are expected. When diabetes is diagnosed in infancy, parents are expected to provide all diabetes management.

  • Have all of your supplies ready before testing blood sugars or giving injections
  • Do not use your child’s bed/crib for injections or blood sugar checking. This keeps their bed/crib a safe place for them
  • Use the smallest lancet for finger sticks
  • Be sure that diabetes care is shared with other caregivers to avoid burnout

Toddlers (1 to 2 years old)

Toddlers are able to participate in some self-care. They often begin looking for approval from parents while testing their limits. Many toddlers are picky eaters and become easily distracted. Important issues are temper tantrums and discipline. Parents are still expected to provide all of the diabetes care.

  • Be organized to minimize your stress
  • Be patient and calm. Test blood sugar before ignoring a temper tantrum
  • Have your child help with simple tasks, such as choosing a finger for testing or choosing a site for injections
  • Be sure that diabetes care is shared with other caregivers to avoid burnout

Pre-school (3 to 5 years old)

Preschoolers are BUSY! Eating and sleeping habits should become less erratic. They are able to start understanding rules and can perform more self care under a parent’s supervision. Preschoolers will ask the question “why?” Let preschoolers know that diabetes management is not negotiable.

  • Allow them to do more diabetes care - test blood sugar or use a lancet device
  • Use a reward system such as sticker charts for compliance
  • Help your child learn symptoms of low blood sugars
  • Assure your child that diabetes care is NOT being used as punishment
  • Do not label blood sugars as “bad” or “good”

School Age (6 to 10 years old)

School-aged children are fearful of being different from their peers. They also begin to spend a lot of their time away from home. Children at this age can perform some of their diabetes self care, but adult support and assistance is still necessary.

  • Make sure that the school and other caregivers are fully educated on diabetes management
  • Have your child participate in school activities or sports to help with normal peer relationships
  • Allow your child to make decisions around meal planning and injections ahead of time to avoid stress
  • Teach your child how to count carbohydrates, calculate insulin doses and use their insulin pump or pen

Early Adolescence (12 to 15 years old)

Children in early adolescence are susceptible to erratic insulin requirements due to rapid growth changes. Blood sugar control may become somewhat difficult. Body image, peer pressure and self-esteem become very important during this time. Plus, many children in early adolescence begin to challenge authority.

  • Continue to educate the school and other caregivers on diabetes management
  • Let your child make decisions regarding treatment options
  • Begin to allow independent visits with your child’s healthcare team
  • Closely monitor school performance and attendance
  • Teach coping skills to enhance their ability to self-manage
  • Your child should be providing most of their own diabetes management with parental supervision when needed or when compliance is a concern
  • Watch for signs of depression, anxiety, or eating disorders (these are very common when children are diagnosed with a chronic disease)

Later Adolescence (16-18 years old)

Adolescence is a time for autonomy and developing a sense of self.

Many adolescents experiment with risk-taking behaviors (not taking insulin, forgetting to check blood sugars, drinking or smoking). Adolescents with diabetes should be independent in all diabetes care, with assistance from caregivers when compliance is a concern.

  • Parents should monitor for risk-taking behaviors
  • Allow independent visits with their healthcare provider
  • Teach them how to download information from their meters and pumps to monitor for patterns
  • Discuss the transition process to an adult healthcare provider
  • Discuss future goals and plans (ex: further education, jobs, insurance)

Parental involvement in diabetes is extremely important through all stages of your child’s development. As a parent, it is essential for you to understand what tasks your child can accomplish, when to lessen your involvement in your child’s diabetes care and when to increase it. Your child will be able to adjust to their diabetes, cope more successfully and be happier and healthier if you remain involved, helpful and supportive with their care. If you notice your child having a difficult time with these tasks, be sure to talk with your diabetes healthcare provider and consider asking for mental health support.

Dr. Sripriya Raman is a pediatric endocrinologist at Children’s Mercy Hospital in Kansas City, Missouri affiliated with the University of Missouri – Kansas City. She has been caring for children with type 1 diabetes for more than six years. She has a particular interest in preparing her patients and their families for a smooth transition into adult endocrinology. She has served as the president for the Heartland Chapter of the American Association of Clinical Endocrinologists (AACE). She continues to support AACE as an advisory board member and as a member of the Program Planning and Pediatric Endocrine Scientific Committees.

Heather Feingold is a licensed clinical social worker at Children’s Mercy Hospital and Clinics in Kansas City, Missouri as part of the Endocrine and Diabetes Section. She has experience in working with children, teenagers and families with coping and adjusting to diagnoses such as type 1 and type 2 diabetes and other endocrine disorders. She regularly facilitates supports groups and educational sessions for patients, families, and community partners..

Lara Simon is a licensed clinical social worker who has worked with the Endocrine and Diabetes Section of Children’s Mercy Hospital, in Kansas City, Missouri, for over 15 years. She obtained her master’s degree in social work from the University of Missouri-Columbia. She is also a Certified Diabetes Educator. She enjoys working with high-risk teenagers while helping them to make healthier life choices related to their diabetes.