Transition information and guidance for parents and carers

Helping your teenager towards independence in healthcare

This leaflet is for parents and carers of children aged 11 + who are under the care of any paediatric team or outpatients clinic.

It discusses ways that you can help your teenager to become more independent with their own health care.

Adolescence can be challenging for any teenager and living with a health condition is an additional challenge. As they progress through their teenage years and transition to adulthood, they will gradually take on an increased responsibility for all aspects of life, including managing their own condition.

The earlier children are taught to manage their own treatment, the more effectively they accomplish this as an adult.

The role of parents / carers

From a young age, children can be encouraged to develop helpful ways of thinking about and coping with their illness. From 11+ we would encourage you to:

• Give your child information about their condition, involve them in decision-making and teach them problem solving and coping skills.
• Always encourage your child to express their feelings and concerns so that you can find ways of dealing with them together.

When the time is right, your teenager can begin to take more responsibility for their own health care. You can begin to think about this from the start of secondary school.

• A good way to start this is with simple things like getting your child to remember medications and appointments.
• Independent visits can be phased in over time as you and your teenager begins to feel comfortable. If they choose to have time alone with their doctor and treatment team it can give them the opportunity to discuss private issues with their doctor. It can also help to get your teenager used to the idea that, soon, the responsibility for their health will be their own.
• They will still be able to bring someone along with them in an adult clinic, but the conversation will be focused on the teenager answering for themselves.

Tips to help your teenager remember medications

If they are on prescribed medication it is not always easy for them to remember to take it Teenagers have busy lives and it may easily slip their minds, especially if they are not experiencing active symptoms which might act as a prompt .

However, following medication routines is a critical part of taking responsibility for their own health condition. They may also perceive taking medications negatively, as a burden, lack of control or a reminder of a condition they would rather forget or actively think about.

You can encourage your teenager to:

• Associate taking medication with another daily activity - like taking a shower in the morning or brushing their teeth at night.
• Write down when to take their medication on a chart or calendar. It is helpful to mark off the reminder when they’ve taken it. You could use different coloured pens if they have to take more than one kind of medication.
• Set an alarm on their computer, mobile phone or digital watch to remind them.
• Use a pill organiser box (dosette) so it is clear what needs to be taken and when.
• Still remember to take medication if their normal routine is broken by, for example, going away for the weekend. You can ask them to phone or text you to let you know they have taken their medications as planned.

Letting go

At some point, all parents struggle with their teenager’s growing independence. For parents of a child with a health condition this can be even harder.

• After having spent so much time overseeing your child’s care, it is sometimes difficult to encourage independence and watch them assume responsibility for their own care.
• Some parents may even resist their child’s efforts to become more independent because they worry that their child will not be able to care for themselves properly. However all teenagers will eventually have to manage their own health once an adult and parents need to prepare them for this.
• Teenagers can look after themselves competently if they are well prepared. Proper preparation means making sure that they know all they need to know about their condition, its management and the repercussions of not taking care of themselves.

How will your child cope with greater independence?

• Some teenagers eagerly embrace their growing independence and responsibility for their own care; others feel anxious and prefer to continue to rely on their parents.
• It is important to find a middle ground; parents should continue to provide support while they encourage their children to take steps on their own.
• The ultimate goal should be to gradually transfer complete responsibility of care from you to your child. When this will happen will depend on the individual and on different services.
• Your teenager should understand that major life decisions concerning education, career, and living arrangements should be made keeping in mind how their health condition will be managed and how it will influence their overall health and well-being. Being ‘realistically optimistic’ about what is and what is not practical and manageable is the key.

Drugs and alcohol

Many adolescents experiment with risky behaviours, and substance use is a concern for all parents with teenage children. Adolescents with health conditions, especially those who are taking medication, need to take special care.

• Teenagers need to be aware of the potential dangers of combining alcohol or drugs with their medication. Both alcohol and drugs have the potential to react negatively with medication, sometimes the interaction may make the medications less effective or in other cases the combination can be very dangerous or even deadly. Make sure your teenager is informed about their medication and encourage them to check any concerns with their doctor or nurse.
• Teenagers may benefit from learning strategies for coping with peer pressure to take drugs. Your teenager may be able to learn to feel confident saying “no” and walking away from an uncomfortable situation however, it is also important to talk to your teenager about moderation and minimising harm as it is very likely, as many teenagers do, that they will try alcohol and/or recreational drugs at some stage.
• Peer influence can also include the pressure to share. If your teenager is taking strong medication for pain relief, it is likely that someone will ask them to share their medication. By talking openly and non-judgmentally with them about their choices is the key to helping them make sound decisions.

What happens if there are any problems?

As your teenager takes more responsibility for their own care, some of their decisions may cause problems.

• Teenagers need to feel confident that they can openly discuss with their parents what has happened without fearing reprimand or criticism. This is how teenagers learn to problem-solve more effectively.
• Reinforce that you are confident in their ability to make their own decisions while still offering advice and support.
• If you are very concerned about your child’s behaviour, or they seem to be struggling to cope, consult a health professional with expertise in dealing with teenage issues such as a psychologist or specialist in adolescent medicine.

Transition from paediatric to adult care

Eventually your teenager will need to link with health professionals experienced in the care of adults and take full charge of their own health.

• This transition can be quite emotional and stressful for all those involved; some teenagers find the new experience exciting while others prefer the security of their old situation. In an adult setting teenagers are expected to be more able to manage their own condition and to take complete responsibility for themselves over time.
• Transition should be a gradual process. Your teenager should learn skills and increase responsibility for their own care over several years and only change to adult care when they are confident and responsible enough to move forward.
• Transitions are most successful when they begin as early as possible and when the young person’s treatment team and family actively plan for it together.