Gaining Independence with a Treatment Plan and Health Care Activities

Figuring out who is responsible for treatment activities (taking medications, scheduling appointments, communicating with the medical team) is a true balancing act!

Studies show that it is best when caregivers and children/teens share responsibilities for aspects of the treatment plan and control of IBD. It is an important part of the transitions to adult care, college and work life.

Here are several considerations for sharing treatment responsibilities:

• Each child develops at their own pace. Think about how you can involve your child based on how ready they are to take on a new responsibility rather than their actual age.
• Even young children can own a small part of their care, such as learning the name of their medication or answering a doctor’s question about symptoms.
• Break larger treatment tasks down into smaller steps. For example, to encourage a teen to start taking responsible for preparing a weekly pillbox, you can:
  • Have the teen watch the caregiver fill the pillbox with medication(s)
  • Have the teen prepare the pillbox while a caregiver watches
  • Have the teen fill the pillbox independently, with the caregiver double-checking afterward.
• If your child or teen dislikes verbal reminders to complete medical tasks, work with them to figure out a communication approach they prefer. Some families have had success using text messages, written notes or hand signals to provide reminders.
• Celebrate your child’s successes when they make an effort to take responsibility for part of their treatment or healthcare!

If you need help deciding how your child should be involved in their own care or more support around the transition to adult care, please ask your medical team, social worker, psychologist or child life specialist.

Learn more about resources at CHOP for navigating the transition to adult GI care.