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Transitioning to Adulthood
The transition from childhood to adulthood involves three key aspects: acquiring new roles for maturing youth; developing and establishing autonomy; and preparing for emotional and functional independence. During this transition period, any or all of these aspects may pose challenges and require observation, consideration, and additional support. For childhood cancer survivors, the transition from oncologist-led care to primary pediatric, adolescent, and eventually adult care is especially important due to the risks and realities of significant late effects that require lifelong follow-up care. As teen survivors mature into adulthood, they may also experience new long-term side effects or the worsening of existing chronic issues. These challenges can impact a survivor’s ability to develop independence, manage tasks associated with day-to-day Iiving, graduate from high school, and/or enter the workplace. The psychological impact of watching healthy friends and siblings complete school and pursue their adult aspirations – especially if side effects challenge their ability to do so – can erode a sense of self and the belief that they can lead an independent life. Regardless of the challenges survivors experience, each survivor should nurture self-advocacy skills. Active efforts to shift appropriate decision-making from parent to survivor will help to establish capability and success for young adult survivors.
Survivor Long-Term Care
Transitioning from pediatric to adult lifelong care for childhood cancer survivors is crucial. This may involve transitioning to an adolescent care physician. This process requires exceptional care and discussion with all medical professionals who are familiar with the survivor’s medical history and vulnerabilities to determine what is feasible for them. Learn more about how to navigate this important transition for adult survivors.
Developing Life Skills With Late Effects
Creating a framework to manage one’s life is extremely important for survivors. Teenagers with late effects need to become more involved in the decision-making process, develop critical life skills, and learn how to incorporate appropriate accommodations into day-to-day living. This can be exceptionally challenging for teenagers who have just completed treatment and grown comfortable having parents manage their medical issues – and their lives – for them. As adults, survivors need to understand the various issues that are unique to childhood cancer survivors as they tackle more universal issues facing all young adults. Embracing one’s ongoing medical management, respecting when help may be necessary for successful day-to-day living, and advocating for support when necessary are important aspects to successfully live independently.
Preparing for the Workplace/Careers
For childhood cancer survivors, securing a job and finding success in the workplace often presents additional challenges. Physical and/or cognitive limitations may limit the possibility to pursue higher education or vocational development. Exploring options post-high school for some survivors must begin early, be developmentally appropriate, and flexible. Learn more about how to navigate the evaluation and decision-making process for survivors to identify and secure a job/career that is respectful of the health status of the survivor and generates great reward and pride.
Fostering Self Advocacy
For childhood cancer survivors, the development of self-advocacy skills should begin around 12 years old and continue to strengthen as they approach adulthood. At the age of 18 years old, individuals are recognized as adults by the medical community, as directed by HIPAA (Health Insurance Portability and Accountability Act). These skills include self-awareness, effective communication and inquiry, understanding legal rights as an adult, and knowing how to grant other designated adults legal access to medical documentation and discussions of medical concerns. It is critical to learn more about this process so that teenage survivors can gain the necessary experience and confidence to manage their health concerns as adults. They may also need to learn how to complete the necessary paperwork so that their parents or other caring adults can legally help them with complex medical issues.
Frequently Asked Questions
When should discussions about transitioning to adulthood take place?
There are many points along the way, as well as milestones after the completion of treatment, for these discussions. It will depend on various factors, including the survivor’s age and where they are in their survivorship journey. A general rule for younger survivors is to start these discussions as early as 12-14 years old. GOT TRANSITION provides a toolkit to help identify essential milestones and list age-appropriate conversations.
What resources do I need to help protect my rights in the workplace?
It can feel lonely as the only person who needs accommodations where you work. Knowing about available support and protection can help you feel more confident and independent at work. The Society for Human Resources and Management (SHRM) states that approximately one in four Americans live with a disability, and at least 70 percent of disabilities are non-apparent. Today, workplaces are doing more to provide accommodations for their employees, and survivors should feel comfortable asking for what they need to be successful in their jobs. Many government resources at the state and federal levels provide guidance and assistance in filing for disability, understanding your workplace rights, providing your 504, and addressing issues or problems in the workplace or other settings.
With the many late effects my child experiences, it will be essential to teach him to advocate for himself in school, the workplace, and for healthcare. As he matures, these places won’t let me do it for him. How do I begin to teach him to do this for himself?
The process starts by letting your child ask or answer questions when meeting with teachers or the medical team, then contributing additional information and asking your own questions. Let teen survivors fill out medical forms to learn where they need assistance and foster confidence in owning their medical situation. Many resources provide guidance to parents to nurture self-advocacy skills.
I know I’m supposed to be in charge of my health care when I turn 18 years old, but my Mom has done this my entire life. Can’t she just keep doing it?
As teens approach adulthood, they are recognized as respected individuals and protected by the medical community at 18 years old, per HIPAA (Health Insurance Portability and Accountability Act). While a patient can authorize medical professionals to include parents or guardians in medical discussions, it is crucial to develop comfort and confidence in understanding your medical health and beginning to manage your chronic conditions. WHEN YOU ARE 18 AND IN CHARGE OF YOUR HEALTH is a wonderful start for teens to begin to explore the idea of taking over the management of healthcare as an adult.
I just started a new job. I’m so excited! But, I was so worried that if I disclosed my late effects that I wouldn’t be selected. Now that I have the job, I am nervous about what to do. Am I required, or is it in my best interest, to tell them about my health issues?
You are not required by law to disclose a disability to your employer. It is a very personal decision to make. Some are very anxious about it and find great peace when being transparent with a supervisor. Some have no choice but to explain when health issues affect attendence or performance. During these discussions, employees can negotiate basic accomodations to help be successful. Others refuse to have the discussion, and work hard to overcome challenges without anyone at work finding out. And it is true that some have been negatively affected by being honest, discounted for projects and/or promotions. DISABILITY DISCLOSURE AND THE AMERICANS WITH DISABILITIES ACT (ADA) provides important considerations when deciding whether or not to disclose.
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