How to Support Siblings Receiving Retinoblastoma Screening
Monday March 14, 2022
Medical appointments, assessments and tests are potentially stressful for anyone, at any age. Cancer screening can be especially difficult if the one being screened is the young sibling of a child diagnosed with retinoblastoma. Child life specialist Morgan Livingstone explores why siblings need cancer screening, and how to help them understand and cope with their medical experience.
Why Do Siblings Undergo Screening?
When a young child is diagnosed with retinoblastoma, it is important that the medical team has an opportunity to assess all blood related siblings to determine their potential for developing eye cancer. Whether the sibling is younger or older, these screenings are necessary to predict their risk of having retinoblastoma, and monitor their eyes to identify tumours early.
When the RB1 gene mutation is known for the person who has retinoblastoma, genetic testing of blood relatives can determine risk to other children in the family.
Genetic knowledge is hugely valuable as testing eliminates risk of cancer for 90% of infants in families affected by retinoblastoma. Children who are found not to carry their relative’s mutations do not need routine eye exams under general anaesthetic.
However, molecular genetic testing is expensive and available at only a few expert labs worldwide. Most families cannot access genetic testing, and struggle even to find someone who can explain the risks to them in simple terms.
Regular examination of siblings’ eyes allows the medical team to monitor for early signs of the cancer. Early detection is crucial – if tumours develop, they will usually be found when very small, and early treatment offers the best opportunity to save the child’s sight with less aggressive therapy.
This practice aims to reduce the risk of the cancer developing undetected. When retinoblastoma is discovered at a late stage, it is more difficult to treat, with less chance of saving sight, and higher risk to the child’s life.
Routine screening of a patient at high risk for cancer is also called surveillance.
For at-risk siblings not diagnosed with retinoblastoma, this screening only needs to take place for a few years while the retina is still developing, since tumours arise from immature cells of the developing retina. Screening protocols differ slightly around the world. However, all reflect that risk of new tumours decreases with age, and disappears completely once the retina is fully formed by age 5-6.
Exploring lab equipment during the child life program at a Canadian Rb Research Advisory Board (CRRAB) Family Day.
How Do I Explain the Need for Screening To My Child?
Retinoblastoma genetics are complicated, especially when a child has cancer in one eye. The different scenarios and what they mean for medical care can cause great confusion and upset for young siblings. So here are some helpful ways to talk with siblings about screening, and help them feel safe through the experience.
Keep it Simple
Any explanations about medical assessments and procedures need to be as simple as possible in order for young children to best understand. Kids stop listening when you over explain, and although it may seem rude, this is normal – children at earlier stages of development are still learning how to focus on lots of information.
Stick to the Facts
Just tell them what is most important for them to know. For example, you can use these simple scripts to stay focused on the most important facts:
“Because your brother/sister was diagnosed with Rb, the doctors and nurses would like to see you too and check on your eyes and health. This is sometimes called screening.”
“These special screening appointments will take place (Frequency) and at (Location).”
“These screening appointments will help us check on your body and eyes and make sure you get any special care you need to be and feel healthy.”
Give Them Time to Digest Information
Once you have shared these facts about their need for screening, some children may have a million questions. Others need time to think about what they have just learned, and come back with questions at a later time. Children of all ages process new information differently, and many do this while they play with toys, video games, or even while playing sports.
Ensure you support a break, and encourage time for play so your child can process this new information.
Acknowledge Feelings and Fears
Feelings about siblings’ cancer screening are diverse. For some children, any cancer related news can cause distress and upset. For others, this screening process might be welcomed. Some may feel reassured that their own eyes are being looked after. Some may feel they are finally included and an active participant in the medical experience they were previously left out of.
It is important to let children of all ages know that all feelings are ok in this situation, and that they are supported no matter what. Here are some strategies for helping your child cope with big emotions, and manage stress behaviors.
How Do I Answer My Child’s Questions About Retinoblastoma?
Children experiencing screening for retinoblastoma may have questions that are more challenging to answer because of their risk for developing cancer. Their questions may be hard for parents to hear and acknowledge, and difficult to answer because the future is uncertain.
As with giving information about the need for screening, keep your responses simple, and stick to the facts. Remember that it is always better to say “I don’t know” than give misinformation that may confuse your child, or potentially damage their trust in you later.
Here are two of the most difficult questions parents hear when talking with their child about screening, with a recommended scripted response.
Will I Get Cancer Too?
“We don’t know if you will or won’t. The doctors will look at your eyes often so that if you do develop cancer, it will be very small and they can treat it right away. Whatever happens, we will take care of you.”
Avoid saying that the doctors “can treat it quickly/easily”. Young children take words literally, and a child may understand this statement to mean the treatment will be short in duration, rather than its intended meaning of treatment starting promptly.
Will I Still See If I Get Cancer?
“I don’t know. If you do get cancer, it will be much smaller than your brother/sister’s cancer, and it will start in a part of your eye that you don’t use to see. So the doctors will be more able to treat it before it changes how you see.”
Do not promise that your child’s vision will be unaffected. Although tumours in older children develop in the peripheral retina that is not used in vision, all retinoblastoma treatments have some impact on vision. We also cannot predict with certainty how tumors (or the whole body) will respond to treatment.
How Do I Support My Child Through Screening?
All children cope better with medical experiences when they know what to expect, have skills to manage stress, and feel they are an active participant in their care. Here are some helpful ways to prepare and support a sibling receiving routine screening for retinoblastoma.
Just like children of all ages receiving cancer treatment and assessments, siblings need to know what to expect, as much as possible, at an upcoming appointment.
Offer siblings medical focused play to practice what will take place during their appointment. This play and exploration can promote a sense of mastery in the healthcare experience.
Creating your own social story/prep book for the sibling can be an effective way of sharing the steps you know will take place during their screening appointment. Here is an example of our prep books – join my medical play puppet, Kamau, for his EUA.
Examinations Under Anaesthetic (EUA) are the primary screening tool for siblings at-risk of retinoblastoma. Here are ten ways to support children of all ages through EUA, to benefit everyone’s wellbeing.
Create a Coping Plan
Some siblings may benefit from a coping plan to help them be and feel successful during their screening experiences. Depending on the frequency of these appointments, the coping plan may change over time as the child grows, develops and changes.
Here is an example of a coping plan created for children having a potentially painful procedure. This coping plan includes:
- Watch (the procedure) or look away
- Sit with my special person (parent or caregiver)
- Hear the steps (of the procedure)
- Take deep breaths
- Counting or singing
- iPad/tablet or iPhone/cell phone
- My special toy or comfort item
- Play a game (I Spy or a pop it toy)
Here is a blank template you can use with your child to create their personalized coping strategies. Use the tabs to the right to add an image and text for each coping strategy.
It’s also important to have fun with your child’s coping plan. For example, they need to start their day with a dance party to their special song, or watch a favorite show/movie as you head to the medical appointment, how can you help them do this? Consider setting the positive mood for the day with routines that support coping.
Coping can also include something special for the sibling, such as a favorite meal after the screening day is completed, or a family game night to celebrate completing that screening. Whatever it is that your child needs to cope, you are only limited by lack of imagination – have fun exploring coping strategies you all use in your family.
Offer Choices Whenever Possible
It can be hard to offer choices all the time, but simple choices within the healthcare arena can help children cope better, and feel they are active participants in the medical experiences they must endure.
Choices can be extremely simple and begin even before you leave your home. For example, what special toy would you like to bring to snuggle during your appointment, or what colour shirt would you like to wear today?
Healthcare choices can include whether a child sits on the examination table/chair independently, or on a parent/caregiver’s lap.
Advocate for Your Anxious Child
Some siblings of children with cancer experience anxiety about going to the hospital, and all children can become distressed by repeat and new medical interactions during retinoblastoma screening or treatment.
Hospital anxiety can manifest in different ways, but parents can help children cope, be active participants in their ongoing care, and raise their quality of life. Here is some more information about hospital anxiety in older children, with a few more ways to help them cope.
General Sibling Support
In addition to support for their own retinoblastoma screening, siblings may need additional support during their brother or sister’s cancer treatment. Help to understand what is happening in the medical care their diagnosed sibling is receiving, to navigate their fears and emotions, and cope with changes in family life.
Our past blog, How to support siblings of children with retinoblastoma, provides further guidance and resources to help siblings cope through this experience. Our friends at Upopolis also have some helpful tips for Meeting the Needs of Siblings.
A few formal programs offer sibling supports. Some are in person, some online, and some provide special gifts and materials that siblings receive throughout the year.
Gilda’s Club offers sibling support programs across North America. Here is a link to some of the sibling and family programs offered at a Gilda’s Clubhouse in Ontario, Canada.
Similarly, SuperSibs SibSpot at Alex’s Lemonade Stand Foundation is dedicated to comforting, encouraging, and empowering siblings during their family’s battle against childhood cancer. This is a community for brothers and sisters, and a support portal for the whole family.
Sibs UK supports and advocates for brothers and sisters who are growing up with, or have grown up with a disabled sibling. They provide information, support and training on sibling issues for adult siblings, young siblings, parents and professionals.
Sibs UK runs the Young Sibs website, an online information and support service for children and young people aged 7-17 whose brother or sister is disabled, has special educational needs or a serious long-term condition.
About the Author
Morgan Livingstone is a Certified Child Life Specialist and Certified Infant Massage Instructor/Trainer. She is passionate about improved child life and psychosocial supports for children and families affected by retinoblastoma.
As the Child Life Officer of World Eye Cancer Hope, Morgan contributes to the website’s Child Life sections, and speaks globally about child life supports for children with retinoblastoma. Morgan provided enriched multi-day child life programming for children of all ages at both One Rb World in Washington, D.C. in October 2017 and the Canadian Retinoblastoma Research Advisory Board meeting in December 2017.
Morgan also writes and creates resources for children and adults, and participates in child life research studies. She won the inaugural Innovation Grant at Operation Smile for developing an APP that uses Virtual Reality to prepare children receiving cleft lip and palate surgery for their operation.
Download Morgan’s helpful parent manual for supporting children’s worries using Worry Eaters.