Q. Are there any resources available to assist families deliver a cancer diagnosis including side effects associated with treatment to children and adults with intellectual disabilities?
A cancer diagnosis has a large impact on the entire family unit and it can be difficult to know how much information to share. When speaking with children about a cancer diagnosis or side effects there are a number of things to keep in mind including providing accurate, age appropriate information, how the treatment may impact their lives, and allowing the space for questions and support.
To meet the demands of a cancer diagnosis, families must alter their roles and patterns in order to balance the physical and emotional impact. Children and adults with intellectual disabilities may find change difficult, therefore it is important to communicate how any changes in routine or physical changes you may experience could impact them. What you say is as important as how you say it.
Be sure to use a calm reassuring voice and have the conversation in a safe environment. Don’t be afraid to use the word “cancer” or show them where it is on your body. It can be helpful to think and prepare in advance for these conversations. Keeping in mind the age and development of your family member, do you best to use simple, clear language or artwork. Be prepared to repeat yourself and allow for them to react in their own way. Additionally, ensure your child that you are readily available whenever they have any questions or concerns. There is no one-size fits all approach as each individual and family has different needs. Some individuals may be non-verbal or cannot rely on speech to communicate, therefore communication differs based on a person’s age, challenges and abilities.
Together with your family, identify people your loved one would feel comfortable with turning to for support. This could include other family members, teachers, social workers and friends. There are also a number of support services through treatment centers available for patients and caregivers of those impacted by cancer.
The American Cancer Society may also provide a list of support services available within your area.
The Autism Society’s National Helpline and YAI website are both a great place to learn about resources and support within your area. Here you can speak with a trained specialist who can provide support options.
You may find the following books and publications helpful when explaining cancer and its side effects:
Getting on with Cancer by Veronica Donaghy, this is a story about a woman with down syndrome whose doctors tell her she has cancer. It described her emotions in the moment as well as her different treatment options.
Going to Outpatient’s by Sheila Hollins, Jane Bernal and Matthew Gregory. This book is aimed for those with learning disabilities and designed to help explain what happens in various outpatient settings. It explores feelings about going to the doctor as well as different procedures.
What Happens When Someone I Love Has Cancer by Sara Olsher (ages 4-10) This book helps families that want to explain what cancer is and how it can impact a child’s life.
Our staff of professional oncology social workers may be able to provide additional support for you and your child. To speak with an oncology social worker, call our Hopeline at 800-813-HOPE (4673) or email firstname.lastname@example.org.