Teenagers with chronic conditions: growing up and becoming independent

Achieving independence is an essential part of the journey towards adulthood for teenagers with chronic conditions, just as it is for all teenagers. Independence is about trying new things, taking on new responsibilities, making decisions by themselves, and working out their identity.

You can help your child with a chronic condition build personal independence by giving them opportunities to enjoy just ‘being a teenager’. You can also help your child learn to manage their condition independently and develop health independence more generally.

As your child moves towards the adult years, you might find that you start moving from being their primary carer to being their life coach.

Supportive, strong relationships help teenagers feel safe and secure. When teenagers with chronic medical conditions feel safe and secure, they have more confidence to try new things and bounce back from challenges.

‘Being a teenager’ with a chronic condition: why it’s important and how to help

When teenagers with chronic conditions get to be like teenagers without chronic conditions, they can feel a real sense of achievement and personal independence. This might come from something as simple as dressing themselves, especially if your child can choose clothes that suit their personality and individuality.

To help your child find this sense of personal independence, here are some things you could try:

• Let your child take reasonable risks and experience disappointment. For example, let your child organise a social outing with friends and take responsibility for their health condition while they’re out.
• Let your child go on a school camp or stay overnight at a friend’s house, even if this needs some planning.
• Find ways to get your child involved in routine household chores alongside siblings. For example, if doing the vacuuming or bringing the washing in aren’t physically possible, perhaps folding clothes and making lists are.
• Let your child know that you expect them to behave respectfully, like all other members of the family.

Pushing the boundaries: teenagers with chronic conditions

Like many teenagers, teenagers with chronic conditions will push the boundaries as they explore their independence. For teenagers with chronic conditions, this might involve:

• getting angry about their condition
• pretending they don’t have an illness or a condition
• refusing to engage in medical treatments
• behaving in risky ways, like smoking, using alcohol and other drugs, and so on.

As your child gets older, their health professionals will talk with them about how this kind of behaviour might affect their condition. You can also talk with your child about risk-taking and other tricky topics. This can guide your child towards making responsible and informed decisions.

If you’re not sure how resistance to treatment, alcohol, drugs, smoking and other risk-taking behaviour might affect your child, check with your child’s health professionals.

A little bit of denial about their condition can be OK if it allows teenagers to take some risks and try new things. But it isn’t good if the denial goes on for a long time. If this happens, teenagers might not stick to their treatment plans, which can mean they get sicker and go back to hospital more often.

Learning to manage chronic conditions

Depending on their conditions, abilities and needs, it can be good for teenagers with chronic conditions to learn to manage their condition independently. But your child will need your encouragement and support to do this, particularly when they’re getting started.

Here are some ideas.

Do trial runs
You could set up some ‘trial runs’ to see whether your child can organise and remember their medicines or medical appointments by themselves.

Organise social outings
You can help your child manage social outings by working through practical issues beforehand. For example, together you and your child could plan how to handle things like getting around in a wheelchair, injecting medicine, emptying a colostomy or urinal bag, checking blood sugars and so on.

Your child might also need a back-up plan in case things don’t go well. You could help your child to set up a medical ID on their phone or make sure friends know emergency contact numbers.

Set up routines and schedules
If you or your child set up routines, schedules or reminders for medicines and appointments, your child won’t need you to remind them as much. Your child could use a calendar or a smartphone app.

Discuss 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 medicines and symptoms, what might happen if they combine medicines and alcohol, or how to check what risks might be involved in an activity.

Talk to friends and employers
If your child can explain their health condition and support needs to friends, employers and others who might need to know, these people will better understand what support your child might need. You could help your child practise what to say to different people. It also helps if friends and others know emergency contact numbers and what to do if your child suddenly gets sick.

See setbacks as learning opportunities
As your child takes on more responsibility and gains independence, there might be times when things don’t go to plan and they end up in hospital with medical complications. Try to use this as a learning opportunity and help your child plan what to do next time.

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

Supporting health independence for teenagers with chronic conditions

In addition to managing their condition, it’s good for your child with a chronic condition to start developing overall health independence. This means taking responsibility for things like:

• making health care appointments
• communicating with health care professionals
• coordinating the professionals and services involved in their health care
• managing their health care records
• making health care decisions.

You can support this development by:

• encouraging your child to start seeing their GP and medical team alone
• helping your child understand how the adult health care system works
• explaining your child’s health care rights and responsibilities.

It might also help to look for role models or mentors for your child, including peers who have similar chronic health conditions. For example, an older peer mentor with the same health condition could help your child learn to navigate adult health services.

You’ll still need to coordinate your child’s care until they can take full responsibility for it. Coordinating care is about getting different services and specialists to communicate with each other. For example, key staff members at your child’s school need to understand your child’s medical condition and treatment plan. Likewise, your child’s specialist needs to know if your child is admitted to the hospital emergency department.

Coaching teenagers with chronic conditions towards young adulthood

Your child with a chronic condition might be thinking about what they want to do when they finish school, like going to university, doing further education or training, getting a job, travelling and so on.

You have a big role in advocating for your child, guiding them into the adult world, and supporting them as they negotiate school and a changing social life with friends.

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

• working out want they want to do when they finish school – for example, jobs, further study or training
• looking into casual work or volunteering
• getting ready for employment
• joining peer support groups for young people with the same or a similar chronic condition.

If your child has a severe intellectual disability and you need to continue to be an advocate and decision-maker for your child, including for your child’s health care, it’s helpful to explore guardianship and power of attorney.

Supporting teenagers with chronic conditions is an important job, and looking after yourself helps you do the job well. When you’re physically, mentally and emotionally well, you’re in a good position to give your child what they need to grow and thrive.