How to transition your child with a chronic illness into adulthood

The process of transitioning from a pediatric to an adult healthcare provider is often daunting, especially for children with chronic needs. As a result, parents taking care of children with lifelong illnesses often care for that child into adulthood. Children with asthma, diabetes, or cystic fibrosis, to name of few, require strict medication adherence and consistent follow-up. It is natural for parents to assume full responsibility in managing their child's illness. However, caretakers are encouraged to learn how to empower children to eventually take charge of their own medical care.

Most transitions occur between the ages of 18 and 21, which is usually around the time the child leaves home and goes to college. Research has shown that there are worsening health outcomes in the years after transitioning to adult care. For example, studies have shown that children with type 1 diabetes have higher blood glucose levels and more frequent hospital admissions in that year after transitioning. Children with sickle cell disease have been found to have higher rates of mortality. It is important to take the following steps to allow good health care outcomes for your young one.

Similar to planning for your child's future with a college fund, transitioning to the adult medical home requires preparation. A medical home is where you get your primary medical care coordinated with other essential services. The integration of all these services takes planning, and the transition of these services to the adult world also needs thought. As an adult, we worry about health insurance, making informed decisions and seeking second opinions from medical providers. It is helpful to involve your children in these discussions and explain to them the importance of these tasks in terms they will understand. It will become a part of their life to have these discussions, especially if they start at a younger age.

Some people wait until their child is almost college-age before they start thinking about transitioning their care, but this process should start early on. It’s best to plan the transition around ages 12 to 14. Talk to your child about their disease and explain what makes them different. Give them opportunities to talk to the pediatrician and ask questions. Help the child learn names, dosages, and how to administer medications along with education on the reasons behind using each medicine. Let them become gradually in charge of medication administration as well as medical follow-ups. Create a checklist that separates tasks that the parent can take care of and the child can take care of. Eventually as the child gets older, they should assume full responsibility for their care.

As the child gets older and becomes more accountable, it's a good time to start researching adult providers. You can work with your pediatrician to help identify an adult provider that would be comfortable treating your child’s illness. There are occasions when adult health care providers are less familiar with pediatric diseases, so it is important to Find a Doctor that is confident in their abilities to continue offering the best care for your child. A great idea would be to visit the new provider’s office to discover if that physician is a good fit for your family. Also, talk to your pediatrician for referrals and incorporate the office's transition policies in your process.

Transitioning can be scary, but it's a great time to help your child learn more about their illness and who they are as a unique individual. They will become empowered to seek appropriate care, make informed decisions and choose treatment plans. Healthcare outcomes are better when individuals have the education to advocate for the best care. So, even though the process is something most parents avoid talking about, your child will benefit in the long run.

If your child has a chronic illness, and you’d like to learn more about ways to help them transition to adult care, visit gottransition.org for more resources.