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Helping a Teenager Living with a Chronic Disease Gain More Health Independence

Teens taking group selfie

The teenage years can be a challenging period of transition for both adolescents and their parents or guardians. This process can be significantly more difficult if a teenager is living with a chronic disease such as juvenile arthritis, kidney disease or diabetes.

Along with the stressors that often occur in adolescence, your child will have to gradually take on more responsibility managing their illness. They may also transition out of the paediatric health care system and into adult-centered care, with new providers and care teams. Depending on their condition, abilities and needs, here’s how to help a teenager feel more comfortable managing their health care and advocating for their well-being.

Start Early

The earlier children understand their illness and are involved in decision-making, the more successful they will likely be. To support future health independence, try to:

  • Give your child as much information as you can about their illness immediately after their diagnosis. Or, as soon as they are able to understand. Offer age-appropriate explanations and answer their questions honestly.
  • Involve your child in health-related decisions and find ways to problem-solve together.
  • Share your own feelings and concerns (within reason) and encourage your child to do the same.
  • Model how to be a positive advocate—speak clearly to health professionals, ask questions, explore options etc.

Let Them Lead

Children and teens may feel intimidated talking to adults, especially health professionals. In fact, this is something that many adults struggle with. Give your child lots of opportunities to practice communicating with doctors, nurses and administrative staff. To support this development as they gain independence:

  • Provide your teen with a notebook that they can use for all medical visits.
  • Sit down together before appointments to go through questions or concerns. Have them write their questions down in their notebook so they can be addressed.
  • Remind your teen that if anything is unclear, they should ask again!
  • Encourage your child to start some appointments alone. This will help them practice these skills and give them a chance to talk about anything confidential. You can join in for updates and to ask your own questions.
  • If your teen prefers to have you present throughout their appointments, avoid doing all the talking. Let your child take the lead.
  • Regularly talk about the importance of being open and honest with doctors and health professionals. Even if something is uncomfortable or embarrassing.

Practice Health History

People who are living with a chronic disease need to be comfortable providing a brief summary of their health history. This generally includes age, diagnosis, co-existing medical problems, treatment plans and any complications or questions. These summaries should be used when seeing a new specialist, doctor or during visits to the emergency room. To help your child summarize and communicate their health history and needs:

  • Use this example and modify: “I am a 15-year-old boy who was diagnosed with juvenile idiopathic arthritis at 8-years-old. I’ve experienced symptoms since then and use a combination of anti-inflammatory and disease-modifying drugs. My joint pain and swelling have been under control, but I’ve recently been experiencing a lot of discomfort.”
  • Encourage your teen to practice using their health summary with the care providers they see most often.

Release Medication Management

Teenagers live busy lives and it can be difficult to remember medications, especially if their symptoms are controlled. If your child is on daily medications, they will need to work towards having primary responsibility over their medication management. To help them stay safe and be successful:

  • Keep a list of the names and dosages of all medications. This should include vitamins, supplements and over-the-counter medications. Encourage your teen to update any changes and to always have a copy on hand.
  • Set up medication alarms on their phone or watch, or try a medication management app. You may also want to display a chart or calendar on the fridge or bathroom mirror near where medications are kept.
  • Connect dosing to daily activities like showering or brushing their teeth.
  • Use a pill box to support their dosing and help them establish a routine for filling it each week. This will allow you to physically see if they have taken their medication.
  • Before doctors’ appointments, check prescriptions and the number of repeats available. Making this a routine practice now will help your child keep their medications stocked in the future.

For many parents of teenagers with a chronic illness, encouraging health independence is very challenging. It can be difficult to give up some of this control after overseeing all aspects of care for so long. Parents may even find themselves resisting their child’s own initiatives to become more independent. Your child will not become an expert at managing their health overnight and just like other vital skills, they will need lots of practice, encouragement, support—and your understanding when occasional mistakes occur. Use any issues as a learning opportunity to help your child better plan what to do next time.

You and your teen may also benefit from connecting with peers and parents who are facing a similar situation. A disease-specific support group, ideally targeted to teens, can give you more concrete tips during this difficult time. If your child has complex needs and will transition to a new adult health team, there are transition programs available in paediatric hospitals.

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