The transition to adult care can be challenging for emerging adults and their parents alike. If your young adult was diagnosed many years ago, you have probably been actively involved in your child’s diabetes care since diagnosis. Even if your child was independent as a teenager, you still may have participated in clinic visits or helped order supplies. For some parents, it can feel like things change dramatically when their child turns 18, and many are not prepared for what can sometimes fell like an abrupt transition.
If your young adult was diagnosed after moving away from home, you may feel out of loop and uncertain as to your role in supporting your child. How can you help without overstepping boundaries in your relationship with your adult child?
Research suggests that parents provide the most important source of social support for young adults with type 1 diabetes until approximately age 25. Talk with your child about how you can support them and contribute positively to their transition to complete independence.
Understand the Differences between Pediatric and Adult Diabetes Care
Pediatric diabetes clinic focuses on the family and fitting diabetes management into the child and family’s lifestyle. Parents are not only included, but are an important part of the visit. As the child progresses into adolescence, the doctor’s appointments focus more directly on the teen with parents playing a more supporting role. Once the transition to adult care occurs, that all changes. In adult care, the focus becomes on the young adult independently managing their own diabetes. While young adults can choose to share their medical information with their parents, they can choose to attend appointments by themselves.
The “feeling” in adult endocrinology clinics is also different. Patients with type 1 diabetes are a very small subset in a clinic population, where doctors are often experts in type 2 diabetes, osteoporosis or thyroid disorders. Clinic visits are often shorter in the adult setting, and the expectation is that the patient will assume more responsibility for their own diabetes management. This change can be quite abrupt for young adults and their parents. If your child was diagnosed as an adult, they may never have had access to the extensive diabetes education provided in pediatrics.
How Can you Help?
If your child hasn’t already turned 18 or moved to adult clinic:
- Start the transition process early. Start at least one year ahead of the transition by working with your child’s pediatric endocrinologist or CDE to identify an adult endocrinologist that will be a good fit for your child.
- Transfer Responsibility of Diabetes Care. Gradually transfer responsibility of diabetes care to your teen. As they near the transition to adult clinic, ensure they know how to do other tasks such as ordering supplies, scheduling appointments, and obtaining lab studies.
Prepare for the first visit. To prepare for the first visit with an adult diabetes care team, encourage your emerging adult to work with his or her pediatric care team to complete a Clinical Summary for New Health Care Team.
- Prepare for clinic visits. Your adult child will need to advocate for themselves as a patient. Encourage them to write down and bring a list of questions/concerns to the visit. They will need to make the most of the limited time they have. Make sure prescription refills are on the list. Offer to attend clinic visits with them. Their response may surprise you.
- Encourage your emerging adult to make clinic appointments a priority. Lifestyles of young adults can be hectic and appointments are easy to cancel. However, research shows that missing appointments can result in poorer glycemic control and even higher rates of hospitalization for DKA or other challenges.
- Don’t forget about health insurance. Young adults currently have the ability to remain on their parents’ insurance policy until age 26. However, this is not an option for many. Work with your young adult to make decisions about which insurance plan they will be using. Make sure they have all the important insurance cards, member number, and know who to contact.
Keep in mind that your child may be feeling overwhelmed. Let them know you understand that they are a capable adult, but that you also understand that managing diabetes can be a huge task. Let them define your role as a source of support and keep the channels of communication open. Sometimes the best medicine you can offer is being a good listener.
American Diabetes Association: Diabetes Care for Emerging Adults: Recommendations for Transition from Pediatric to Adult Diabetes Care Systems
National Diabetes Education Program: Clinical Summary for the New Healthcare Team
The American Academy of Pediatrics: Transition to adult care for youths with diabetes mellitus: findings from a Universal Health Care System. Pediatrics. 2009;124:e1134–e1141.