When a child is diagnosed with diabetes, the whole household is affected.
“Diabetes is never managed alone, especially in pediatrics,” said Ashley Butler, PhD, associate professor of pediatric psychology at Texas Children’s Hospital. Currently providing counseling to children and their families, as well as leading ongoing research around diabetes wellness, Dr. Butler has seen that the more a family works together, easier diabetes management becomes.
“If everyone takes it on and makes changes, which are often a healthy changes for the entire family, that is when I see the most success, because the child with diabetes doesn’t feel like they are alone and they feel supported in the changes that are made,” said Dr. Butler.
This degree of cooperation and support, while beneficial to everyone involved, can also be very difficult to implement. For both children and teenagers, Dr. Butler encourages frequent open communication as changes are being made.
Helping children understand themselves and their diabetes
Toward the end of elementary school, kids better understand how they fit into society and how their bodies function. Questions about diabetes may become more common, and children may become more aware that diabetes makes them different from their peers. Dr. Butler teaches parents to be proactive in conversations with their children about diabetes, checking in with their feelings often.
“We talk to parents about how to keep the conversation around management positive, acknowledging what the child is doing well with all the demands that they have about diabetes,” said Dr. Butler.
At this age, it may also be appropriate to share the tasks that are a part of diabetes management with your child. By keeping up positive communication about diabetes care, your child may feel more confident about being involved. Young children may start by just reading off the numbers following a daily blood sugar test, but older children can start to understand diet choices and medication management.
Fostering independence in teenagers with diabetes
Adolescence is a time of gradually handing over diabetes management to your child. All of the advice regarding checking in with a child’s emotions and seeing how much of the day-to-day tasks they feel that they can take on still apply, but the transition of responsibility can be difficult for a household to manage.
“[Teens] can do the tasks of diabetes management … so parents often see that while they can do it, they’re not doing those things. There can be significant conflict between caregivers and children around that,” said Dr. Butler. Teens and preteens may resent constant nagging about diabetes care, while parents and caregivers are constantly worried about the serious complications that can come from diabetes mismanagement.
“It goes back to ongoing and positive communication where a parent can check in and offer to help,” said Dr. Butler. If a teen is having trouble managing the responsibility, you can offer help with specific tasks and initiate a discussion about how your child is feeling about their diabetes. Relying on a support network outside the home can be helpful at this age as well. School nurses, endocrinologists, best friends and great aunties all have the child’s best interest at heart and may be welcome team members for diabetes care.
A model for social support
Being willing to discuss the challenges of diabetes care with people outside the home may be daunting for some, but it can be an important first step for families to get help that will enable them to live better lives.
“We talk to parents about being able to check in with themselves,” said Dr. Butler. “Feelings of burnout do come because the tasks are so demanding but we teach parents to recognize when that’s happening and then encourage them to think about social support.” Social support may be someone who can take over diabetes tasks for a period of time, or someone who can help with other tasks that are neglected due to the time it may take to give insulin to a young child.
Caregivers and children can both benefit from knowing others who are incorporating diabetes care into their daily lives. Texas Children’s has developed a Type 1 Diabetes Empowerment and Management (TEAM) Program to connect diverse families who are managing diabetes. They are in the process of developing a similar program for type 2 diabetes.
“When we do connect families we hear of tremendous benefit coming from that,” said Dr. Butler. “Oftentimes, we see that lifelong connections are made.”To learn more about the TEAM Program: https://www.youtube.com/watch?v=SFBvrgg6pMc