Each age and stage of life brings a different set of challenges. Parenting an infant or toddler blood and marrow transplant (BMT) survivor can be very different from parenting a school-aged child. Likewise, being a teenage survivor 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
We go through an important transition when growing from a child into an adult. During this transition process, your child needs to establish autonomy and prepare for independent living, such as higher education or a job. Creating meaningful relationships and a stable self-identity are also key factors that support their development into an adult. Your child’s BMT 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 will need to receive care from an oncologist and various other specialists who help in their follow-up care. The 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, with an individualized treatment approach, and parents are 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 own care. For this reason, having self-management skills and knowledge of their medical history and long-term risks is 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 BMT. This sometimes includes 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 the section on "Learning and Memory" in the Other late effects page.
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, social and emotional needs. This doctor will 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. For this reason, some children find it hard to leave their paediatric treatment team. It is important that your child understands that attending clinic appointments is necessary to help them be the healthiest adult possible.
The switch to adult care may take some time to get used to. This is why you and your child’s health care team should make it a point to 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 nights 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.
When your child goes away to university or college
For parents of children who survive a BMT and their primary illness, 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 will 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". Some parents may resist their child's efforts to be more independent. However, it is important that your child learns to look after their health. This is part of their journey into adulthood.