Teenagers with chronic health conditions

If your teenage child is living with a chronic health condition, she might be facing challenges that other teenagers don’t have to deal with.

These challenges could include lots of GP or hospital appointments, time-consuming medical treatments, intrusive daily medications, missed social activities, feelings of isolation, and extra planning for going out with friends.

A chronic health condition can also sometimes affect puberty. For example, some conditions that affect nutrition or growth can delay puberty, and some neurological development disorders can cause puberty to start early.

Your child’s condition might also affect the way he feels about his body or how he controls his emotions.

And then there are your child’s feelings. She might feel embarrassed to tell friends about her illness or treatments. She might worry about being ridiculed or bullied. Perhaps it’s difficult for her to make or continue friendships, especially if her illness keeps her away from school a lot.

Don’t be too surprised if your child feels angry or pretends he doesn’t have an illness. This is pretty common. Some teenagers can also be uncooperative about treatment – for example, by avoiding medications, bingeing on cake if they have diabetes, or smoking if they have asthma.

If your child’s illness has just been diagnosed, adjusting to it can be difficult. And if your child has had the condition for a long time, the teenage years can bring extra challenges.

A little bit of denial can be helpful because it allows the young person to take some risks and get on with trying things, but it isn’t good if the denial keeps going. If this happens, teenagers end up not sticking to their treatment plans, which can mean they get sicker and go back to hospital more often.
– Susan Towns, Head of the Department of Adolescent Medicine,  Children’s Hospital Westmead

Helping teenagers with chronic health conditions ‘just be teenagers’

You have a big role to play in helping your child with a chronic health condition just ‘be a teenager’.

When teenagers with chronic health conditions just get to be teenagers, they can feel a real sense of achievement and independence. This might come from something as simple as dressing themselves, especially if your child can choose clothes that suit her personality rather than her illness.

Helping your child find this sense of independence isn’t always easy, especially if you’re used to caring for your child when he’s sick, taking him to hospital or managing his medical treatments. It can be hard to let your teenager take risks and test his abilities, but this is the first step towards working out how much independence your child can handle.

You could try:

  • letting your child take reasonable risks and go through disappointment – for example, let her organise a social outing with friends by herself
  • finding ways to get your child involved in routine household chores alongside her siblings – for example, if doing the vacuuming or bringing the washing in isn’t physically possible, perhaps folding, sorting and making lists are
  • letting your child go on school camps, or stay overnight at a friend’s house
  • letting your child know that you expect mature and respectful behaviour – for example, ‘We speak respectfully in our family. This means we don’t call people names’.

Smoking, drinking and sexual health
As your child gets older, his health professionals will talk to him about how things like sexual health, smoking, alcohol use and drug use will affect his condition.

If you can talk to your child about these difficult issues too, you can guide your child towards sensible and responsible decisions. If you’re not sure about how alcohol, drugs, smoking and so on might affect your child, you can always check with your child’s health professionals.

Parents need to keep things as normal as possible and help their son or daughter achieve their own goals of adolescence, while supporting them to manage their chronic health condition. We encourage parents to avoid the ‘overs’: over-protection, over-permissiveness, over-indulgence, over-anxiety.
– Susan Towns, Head of the Department of Adolescent Medicine, Children’s Hospital Westmead

Helping teenagers manage chronic health conditions

Many teenagers living with chronic health conditions want to manage their conditions themselves, and this can be a good thing. How much responsibility your child can take on will depend on her condition and her needs.

Here are some ideas for building your child’s health independence.

Trial runs
You could set up some ‘trial runs’ to see if your child can remember his medications or medical appointments by himself. If your child can recognise early warning signs that things aren’t going well and if he knows how to respond quickly, this is also a great start.

Social outings
You can help your child manage social outings with a chronic condition by working through the practical issues beforehand. Together you and your child could come up with a plan for handling things like getting around in a wheelchair, injecting medication, emptying a colostomy or urinal bag, checking blood sugars and so on.

Your child might also need a backup plan for when things don’t go well. This could be taxi vouchers or making sure friends have emergency contact numbers.

Routines and schedules
If you or your child set up routines, schedules or reminders for medications and appointments, she won’t need you to remind her. You could use a calendar or a smartphone app.

Rules and risks
Rules are important for all teenagers, especially rules about risks, safe behaviour and communication. You could talk with your child about monitoring medications and symptoms, or what might happen if he combines medications and alcohol.

If your child explains her health condition to her friends (and their families), these people will know what kind of support your child might need. It’s also helpful if they know emergency contact numbers and what to do if your child suddenly gets sick.

The learning curve
As your child takes on more responsibility and independence, there might be times when things don’t go to plan and he ends up in hospital with medical complications. This can make you and your child feel anxious, but it’s part of how he’ll learn to manage his condition himself.

If you’re finding it hard to let go, it’s best to get some help from an adolescent health professional like a psychologist or a social worker. They’ll be able to work out how to support your child without undermining your child’s confidence.

Being an advocate for teenagers with chronic health conditions

During the teenage years, depending on your child’s condition, she’ll start to see the GP and medical team alone. Eventually she’ll move to the adult health care system.

Your child might also be choosing subjects at school, looking at colleges or wanting a part-time job.

Through this period, you still have a major role to play in advocating for your child, guiding him into and through the adult health world, and supporting him as he negotiates school and a changing social life with friends.

Finding role models for your child and getting her to talk to older peers who have similar chronic health conditions can be a good start.

Peer support groups or online chat groups with other young people who have the same condition can help your child feel less alone or different.

Depending on your child’s condition, you might find that you shift from being your child’s primary carer to being his primary advocate and life coach. As part of this role, you could talk to your child about:

  • understanding his rights and responsibilities as a health care consumer
  • coping with pressure and managing stress
  • being assertive and speaking up about concerns
  • keeping notes and reports from appointments
  • getting the different services involved in his treatment and care to communicate with each other – for example, making sure key staff members at high school or further education understand his medical condition and treatment regimes, or ensuring your child’s specialist is consulted if your child is admitted to the hospital emergency department.

Coordinating your child’s careYou might also need to coordinate your child’s care until she can take full responsibility for it, where this is possible.

Coordinating care often involves liaising between educational organisations and the various health professionals who treat your child. It might also involve keeping and sharing an up-to-date list of phone numbers and emails of all these professionals.

Some parents  use a specific diary with a notebook section and pockets for cards, brochures and reports. Other parents use smartphone apps to take photographs of instructions, record treatment information and set up reminder schedules.

Getting help when your child has a chronic health condition

If you’re worried that your teenager isn’t coping well or if you’ve noticed he’s angry, down or really denying things, it’s a good idea to get some support from adolescent health professionals.

Multidisciplinary teams of specially trained doctors, psychologists, nurses, occupational therapists and social workers can help your family to support your child. Your GP should be able to give you a referral to these specialist services.

Don’t forget to look after yourself too. If you’re meeting your own needs, you’ll also be better able to meet the needs of your family.

And if you’re worried or stressed, talk to someone about it. This can help you deal with negative feelings and avoid more serious problems later. Meet with your GP if things seem more serious.

An electronic health record is a personally controlled and secure online summary of your health information. You register your child and make sure she knows how to use the system.