Sickle cell disease: Encouraging your teen's independence

PDF download is not available for Arabic and Urdu languages at this time. Please use the browser print function instead

Teens with sickle cell disease may need encouragement to become more independent with taking their medications as instructed, filling their prescriptions and making clinic appointments. Learn what you can do to encourage your teen to manage their condition independently.

Key points

  • Many parents and caregivers have trouble knowing how to support their teen's independence. Caregivers of teens with sickle cell disease have the added challenge of helping their teen manage their illness.
  • Teens with sickle cell disease may need extra encouragement to take medications as instructed, fill their medical prescriptions and schedule health-care appointments and clinic visits.
  • Consider which skills your teen needs to develop to be able to manage care tasks on their own and how you can help them develop these skills.

During adolescence, teens will naturally become more independent at school and with friends and family. For example, when your teen was younger, you might have set up a play time with classmates. As they grow up, they begin to organize their own social time. Teens with sickle cell disease will also start having more independence over their illness as they get older.

Most parents and caregivers have difficulty knowing how best to support their teen’s growing autonomy. Parents of children with chronic illnesses such as sickle cell disease have the added challenge of helping their teen manage their illness.

Some common areas in which teens with sickle cell disease may need extra encouragement include:

  • taking medications as instructed
  • filling medication prescriptions
  • scheduling health-care appointments and clinic visits

How to encourage your teen to manage their sickle cell disease independently

To encourage your teen’s independence, start by thinking about what you want them to manage on their own. Then, consider what skills they may need to develop to meet these goals. How can you support them as they develop these skills?

For example, let’s say your goal is for your teen to take their medication independently. Instead of giving them reminders each day, you may need to help them develop skills to remember to take them on their own. For example, they could put a note that says “meds” near the bathroom door or program an alarm into their phone. Help them identify the option that works best for them.

Here are a few other things you can do to encourage your teen’s independence:

  • Encourage interactions with other teens their age.
  • Let them do things by themselves when they can (even when that means making mistakes).
  • Let them have opportunities to make decisions and give them choices when possible (for example, “Do you want to call the clinic for your next appointment on your own, or do you want to call them together?”)
  • Praise them when they do things independently (for example, “I’m so proud of you for remembering to phone in your prescription refills!”)

Here is what one mother had to say about helping her teen learn skills for self-management.

“I showed Ashley how to renew prescriptions by phone. I am also teaching her how to contact the clinic to request new prescriptions when she runs out of refills.”

What are some goals you have for your teen’s independence in managing sickle cell disease?

What are some ways you can help your teen develop skills to encourage independence in this area?

How to encourage your teen to manage their pain

Teens with sickle cell disease may also need extra encouragement to manage their pain. These are some examples of positive pain coping skills your teen is learning in this program:

  • deep breathing
  • progressive muscle relaxation
  • keeping a healthy sleep schedule

It can also be helpful to consider how you can support them in learning how to use positive pain coping skills independently.

What are some ways you can help encourage your teen’s independent pain coping?

Here are some ideas to get you started:

  • Reduce your communication with your teen about pain and sickle cell disease. In other words, do not ask your teen if they are in pain. Trust that your teen will come to you if there are substantial changes in their pain or if they need help.
  • Provide support if you see that your teen is anxious, scared or in pain, but also give your teen the opportunity to use positive pain coping strategies such as relaxation and distraction.

Over the next week, think about different ways you can support your teen in becoming more independent.

Last updated: February 26th 2024