Transitioning into adulthood after leukemia

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Learn about challenges a child who has had leukemia will face as they transition into adulthood.

Key points

  • Children who have had leukemia may make their transition into adulthood more challenging than other children's experience.
  • It is important for your child to have self-management skills and knowledge of their medical history so they are prepared for the move from paediatric to adult care.

Each age and stage of life brings a different set of challenges. Parenting an infant or toddler leukemia who has had leukemia can be very different from parenting a school-aged child. Likewise, being a teenager who has had leukemia is different from being nine or ten years old. As teenagers reach adulthood, they are faced with new challenges, both physical and social, that further affect their care.

What does transitioning into adulthood involve?

Transitioning into young adulthood is challenging and involves many different interlinked changes.

Developmental transition

There is an important transition when a child grows into an adult. During this transition process, your child needs to establish autonomy and prepare for independent living, such as higher education, a job and a family. Creating meaningful relationships and a stable self-identity are also key factors that support their development into an adult. Your child’s leukemia experience may complicate this process and it may take longer for them to feel like a "full adult" compared to others their age.

Health-care transition

When your child reaches the age of 18, they may need to receive care from an oncologist and various other specialists in the adult system who help in their follow-up care. The transition process should begin well before your child turns 18.

Without any preparation, moving from paediatric care to adult care can be difficult. The paediatric hospital setting tends to be more family-focused and parents are often the primary decision-makers. In an adult setting, your child is now the decision-maker – requiring them to be autonomous and actively participate in their care. For this reason, having self-management skills and knowledge of their medical history and long-term risks are essential.

Educational and vocational transition

Young adult cancer survivors need to learn important skills that will help with their transition into a new academic or work setting. It is helpful for your child to learn:

  • how to become more independent
  • appropriate coping strategies
  • how to self-advocate

Learning these skills can be particularly challenging for those experiencing the late effects of leukemia treatment. This sometimes include problems with memory, attention, and motor skills. Talking to a psychologist can help your child work through any challenges they may face during education and vocational decisions.

For more information, see Potential Long-Term and Late Effects of Acute Lymphoblastic Leukemia Treatment.

Who looks after your child when they turn 18?

The paediatric oncologist will refer you to the person best able to take over your child's care. Adult care focuses on meeting your child's physical and psychosocial needs. This doctor should discuss life goals and needs with your child, as well as how often they need to have follow-up appointments and tests, and any precautions they may need to take.

Switching to an adult clinic

Some children may have spent time getting to know the paediatric oncology staff. They may have also gotten used to trusting the people that have treated them and find it hard to leave their paediatric treatment team.

You and your child’s health-care team begin discussions about the switch to adult care as early as possible. This will reinforce the need for, and benefits of, ongoing care.

Parents can also help by encouraging their children to gradually take over responsibility for their own care. One way is to arrange "alone time" with the oncologist. This has been shown to make the overall transition more successful. Many adult clinics also offer information sessions on transitioning. This is an excellent opportunity to meet some of the doctors and gather information.

What increases the odds of a smooth transition?

For a successful transition, your child, family, educators and health-care providers need to be communicating with each other. Preparing for the challenge of transitioning and taking a proactive and focused approach to future goals is also important. Support groups that focus on transitioning issues, like Successful Academic and Vocational Transition Initiative (SAVTI) and the Good 2 Go program, are useful resources.

If your child goes away to university or college

For parents of children who had leukemia, letting go can be even harder than usual. Keep in mind that if your child is well informed about their condition and the importance of self-care, they have some of the skills they need to look after themselves.

As a young adult, it is important for your child to decide how involved they want you to be in their medical care. Offer your help, but try not to be offended if it is not accepted.

Together, decide if your child's medical care should be transferred to their new community or whether they will be able to attend their medical appointments when they are home on break.

Discuss whether they want to tell friends or roommates about their condition. It is a good safeguard to have someone who knows in case they ever need help.

Coping with your child's independence

Since you have spent so much time overseeing your child's care, you may find it difficult to "let go". However, it is important that your child learns to look after their health. This is part of their journey into adulthood.

Last updated: March 6th 2018