Growing independence for children with heart disease

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Learn about encouraging self-care in children with congenital heart disease.

Key points

  • Ensure your teen is knowledgeable about their heart condition and knows their medical history.
  • Encourage teens to see the cardiologist on their own so they can become more independent when it comes to their care and can discuss issues without parental involvement.
  • Involve a health professional such as a social worker or psychologist if your teen is experiencing psychological problems or needs support.
  • Teens who know about their condition and the repercussions of not taking care of themselves can be trusted to look after themselves.

This page outlines how you can prepare teenagers with heart disease to look after themselves as they grow up.

Encourage responsibility and self-care

Teenagers do not always make sensible choices when it comes to self-care. This may be particularly true for teenagers who are feeling angry about their condition. With the onset of sexual maturity and more self-awareness, teenagers often blame their parents for their condition. This anger can cause more stress in the family and result in your teenager not taking prescription heart drugs as they are supposed to, or not observing physical activity restrictions connected with their condition. The effects on the child's health can be dangerous. It is common for parents to make more requests for medical counseling during this stage.

Parents can assist their teenager by encouraging healthy ways of thinking about and coping with the condition, by involving the teenager early in decision making, and teaching problem-solving skills. Make sure they know all about their condition and medical history. Studies show that adults with CHD often do not know much about their heart condition, which can jeopardize self-care. When appropriate, encourage your child to see the cardiologist on their own so that they can begin taking control of their care and has the opportunity to bring up more private or delicate issues without parental involvement.

If there has already been a negative consequence to a decision about self-care (such as missed medicine or risky behaviour), discuss what happened as opposed to focusing on reprimanding your child. Reinforce the repercussions of not looking after themselves. Avoid nagging. Through all this, it is important to encourage your child and offer support as needed to help them make their own decisions.

Psychological problems can become apparent during crisis periods in adolescence and adult life. Such periods often bring about first-time challenges of everyday life, such as school pressure, relationship conflict, or work demands. Psychotherapeutic support or psychological counseling, both in family or individual forms, can assist with these issues. When needed, involve a health professional such as a social worker, psychologist, or specialist in adolescent medicine with expertise in dealing with teenager issues. Some of these individuals may be affiliated with the hospital's cardiology department. This is especially important if there is continued risky behaviour or if your child seems unable to cope with emotional issues.

Tricks for remembering medications

It is not easy to remember when to take medicine. Teenagers have busy lives and it may slip their minds, or it may be a burden they would rather forget. It is however a critical part of treatment and recovery and must be something they gradually assume responsibility for. This is especially true if they are not experiencing symptoms that remind them to take medication. Also, having to take drugs is an unwelcome reminder of an illness. But it is crucial that they follow their drug regimen for the medicines to be effective. Here are some tips you can encourage your teenager to adopt:

  • Incorporate pill taking into the daily routine.
  • Connect it with another daily habit, like walking the dog in the morning or teeth brushing at night.
  • Encourage the use of a pill container so it is clear which pill needs to be taken when.
  • If your teenager does not want to carry a pill container around, consider using jewellery such as a locket to contain pills, or purchase an appealing-looking pill box.
  • Consider using technology (alarms on smart phones or digital watches) to provide reminders.
  • If your teenager breaks routine by going away for the weekend, for example, there is an increased risk of pills being forgotten. Make sure medicine is stored some place obvious.

Prepare your child for the transition to adult care

It is important for your child’s continued good health that there is a smooth transition from the pediatrician to the adult cardiologist. Experts in the care of adults with CHD suggest that you start preparing your child for the transition to adult care when they are about 11 or 12. This will provide time for them to start thinking about assuming responsibility for their own care well before they start meeting with an adult cardiologist.

For more information, please see the page on Transitioning to Adult Care

Attending college or university away from home

It is important for your child to decide just how much involvement they want from you when it comes to their care. Offer your help but try not to be offended if it is refused. If they are moving out to attend college or university, you may want to suggest check-in times for phone calls, rather than constantly bombarding them with calls to see how they are. If you need to feel useful, prepare tools for your child before they leave, like a drug reminder calendar. Determine together whether they need to have access to a local cardiologist or whether they will be able to attend appointments when they are home on break. If they have physical limitations or tire easily, consider requesting a dorm room or building that is easily accessible and close to classes. If they are living on campus, consider telling the don at their residence about their condition and implications for care. Discuss whether they will tell their friends or roommate about their condition, and if they choose to do so, the best way to disclose this information. It is a good safeguard to have someone who knows about your child’s condition in case they ever need help, be it a drive to the doctor's office or someone to share notes if they miss class.

Letting go of a child, helping them achieve independence can be difficult for any parent, but for the parent of a child with a chronic illness it can be especially challenging. Keep in mind that if they are well prepared — knows all they need to know about their condition and the repercussions of not taking care of themselves — they can be trusted to look after themselves.

Coping with your child's growing independence

Many parents of children with congenital heart disease find that since they've spent so much time overseeing their child's care, it is difficult to "let go" and encourage and watch their children assume responsibility for their own care. Some parents even resist their child's efforts to be more independent, however, it is important that older children take control of their lives to ensure that they are able to look after their health. Some hospitals have support groups that enable parents to discuss these "letting go" issues. Online support groups can also be helpful, such as those offered by the Canadian Adult Congenital Heart Network and the Congenital Heart Information Network.

Some children eagerly embrace their growing independence and responsibility for their own care. Others are fearful and may rely heavily on their parents. It is important to find a middle ground. Parents can continue to provide some support while they encourage their children to take steps on their own.

Last updated: December 14th 2009