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Pediatric CancerThe Engaged Patient

Engaging Families & Children in Cancer Treatment

Each year, approximately 16,000 children and adolescents are diagnosed with cancer in the United States. There is nothing more frightening for parents than being told that their child is ill.
August 2016 Vol 2 No 4
Elizabeth Franklin, MSW, ACSW
Executive Director, Cancer Policy Institute
Cancer Support Community

Each year, approximately 16,000 children and adolescents (up to age 15) are diagnosed with cancer in the United States.1 There is nothing more frightening for parents than being told that their child is ill. If you are a parent who is going through this, you may feel overwhelmed, scared, sad, guilty, or angry. But you are also responsible for your child’s or adolescent’s healthcare needs, which means making logistic decisions that many parents are not ready to make.

Some cancers are more common in children and adolescents, and the treatments for pediatric cancers are different from adult cancers.2 The majority of children and adolescents with cancer in the country receive treatment at hospitals affiliated with the Children’s Oncology Group, and these have doctors who are experts in childhood cancer.3

You may need to explore multiple providers to find a healthcare team that matches your values, needs, and preferences; answers your questions; and has specific expertise in treating the kind of cancer your child has. The following tips can help you build a support community for your child who is facing a cancer diagnosis.

Sharing Decision-Making with Children

Although children and adolescents may not be able to fully understand their disease or make informed decisions about their cancer care, you can empower your child to understand the disease in an age-appropriate way. When things happen around a child without an explanation, it can be extremely confusing.

Telling your child about his or her cancer can make it less scary and can build trust. Children tend to create stories that are worse than the truth if information is not shared with them.

The American Society of Clinical Oncology provides a step-by-step guide on what to tell your child at www.cancer.net.4 The Table summarizes some of these recommendations.

Support System

Childhood cancer throws families into disarray as they deal with a life-altering diagnosis. Don’t be afraid to ask for what you need! Often, friends and relatives want to help, but they don’t know how. Mental health workers, such as social workers, counselors, psychologists, and psychiatrists, are there to help you with new and challenging emotions.

Patient navigators and child health specialists can help you and your child understand new, complex systems, and can help you find support to take care of other siblings at home.

Financial counselors can work with you on insurance and financial concerns before and throughout treatment. Ask for help when you need it, and accept offers from others who want to help by providing comfort and assistance.

Survivorship

The majority of children survive cancer, and many are ultimately considered cured. In 2014, almost 400,000 of the 14.5 million cancer survivors were diagnosed before age 21.5

Although we’ve made incredible progress in the treatment of childhood cancer, it is important for children with cancer to get regular checkups from their pediatrician and from their oncology team for as long as their doctor recommends it. Many institutions have new programs that specialize in long-term care for survivors of childhood cancer, because some cancers can put kids at risk for other health complications. Keep your child’s appointments with his or her healthcare team to prevent avoidable medical complications and to ensure that your child is as healthy as possible.

When a child is diagnosed with cancer, the entire family must adjust to new roles that shift over time. There are many resources available to you. These tips are just a few ways for parents to think about how to help their children be engaged in their care, navigate systems, and plan for the future.

Family Resources

Many resources are available for families, from camps for children with cancer to resources for treatment. You may even find help for flights to the treatment facility if you live far away from the treatment center. Below are a few online resources:

References

  1. Children’s Cause for Cancer Advocacy. Know the facts about childhood cancer. www.childrenscause.org/childhood-cancer/.
  2. St. Baldrick’s Foundation. About childhood cancer. www.stbaldricks.org/about-childhood-cancer.
  3. Children’s Oncology Group. www.childrensoncologygroup.org/.
  4. Cancer.Net (American Society of Clinical Oncology). www.cancer.net/coping-with-cancer/talking-with-family-and-friends/how-child-understands-cancer.
  5. National Cancer Institute. Childhood cancer survivor study. www.cancer.gov/types/childhood-cancers/ccss.

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