How To Support Siblings of Children With Retinoblastoma
Monday April 27, 2020
Siblings of children with retinoblastoma often experience big fears, worries and emotions when their brother or sister is first diagnosed, during treatment, and beyond. Early Years Educator and Child Life Intern Keanna Gordon explores childhood eye cancer from the sibling’s perspective, and how parents can best support their wellbeing.
In future articles, we will separately address supports for well siblings who require surveillance EUAs for retinoblastoma, and supports for infant siblings. These subjects are too complex to address within this article. These future articles will be linked here when published.
Learning that your child has retinoblastoma can be difficult news to digest. Even though a single child is given the diagnosis, all members of their family are affected in many different ways. Although most siblings of retinoblastoma patients are not diagnosed themselves, they are still required to adjust to a “new normal” and how their sibling’s diagnosis may impact their family life as a whole.
When a child is diagnosed, all members of the family will need support so they are able to understand what is happening. A lot of attention will need to be focused on the child with cancer, but their siblings will also need tender love and care at this time. Siblings especially may require reminders of their importance within the family.
Communication Is Key
Having conversations with your children about retinoblastoma can seem overwhelming. Siblings will have questions about the diagnosis and their diagnosed brother or sister that need to be addressed. Your first reaction as a parent or caregiver may be to withhold information or only to share the information that you feel is “less scary” or distressing. Most research shows that communicating openly and honestly, and being there to answer your child’s questions about their sibling is the best way to help them cope.
Setting The Stage
How and when information is shared about a sibling’s diagnosis can help to set the stage for future conversations. Talking about cancer is not easy, but by talking to your child honestly, you can help normalize this challenging situation. Sharing information early on about their sibling’s diagnosis helps to build trust, and can lessen the risk of a sibling feeling “left out”.
Prepare What You Want To Say Beforehand
Many parents and caregivers practice what they are going to say beforehand, as finding the right words can be a challenge. Writing some key points down and rehearsing beforehand may help to keep the conversation going. In some cases, less is more. Providing small, manageable amounts of information over time may help to increase the sibling’s understanding of plans for treatment, and give them an opportunity to ask their own questions and share any concerns they may have. Make sure you take time to repeat and revisit this information to help clarify any misunderstandings or misinformation siblings might have.
Sharing the News: the conversation
Be honest: When sharing the news about the sibling’s retinoblastoma, be as honest and direct as possible. Having this tough conversation allows brothers and sisters to feel included, and lessens the possibility of their imagination running wild.
Welcome emotions: This is essential during conversations. Talking openly with a child about their sibling’s diagnosis, and acknowledging feelings or worries, helps to provide reassurance that their feelings are normal and valid. It allows for emotional expression. Sharing your own thoughts and feelings as a parent about the diagnosis can also help to normalize this very abnormal experience for your child.
Find out what your child thinks and knows: Some parents find it helpful to begin the conversation by asking what questions their child has, and what they already think and understand. This enables the parent to assess the child’s knowledge and worries, and clear up any misunderstandings at the start.
Review what you have shared: Check in during the conversation to ensure the information you are giving is simplified yet understandable. You can do this by asking questions that invite your child to explain what they have just learned. If what you have shared is not quite making sense to your child, try to reframe it using simpler language. Or consider offering a break, since too much information at once can be overwhelming.
Encourage open communication: Most important of all, let your child know they can come to you whenever they have questions or concerns, and that they will continue to be included in conversations when changes happen. You can offer to give simple updates once a week or daily, depending on what they desire. Reassure them that they are not alone and can come to you no matter what emotions or feelings they are experiencing.
Provide Appropriate Explanations
The information you share will need to be adjusted for the age and developmental level of your child. Across all age groups, using the appropriate language is essential. Stay away from euphemistic alternative language and use the correct term of “retinoblastoma” and “cancer.” By using the proper language, children can differentiate everyday injury and illness and being “sick” with a cold, from their sibling’s diagnosis, reducing fear and anxiety.
Explaining the diagnosis by using the Four C’s model can help to provide the appropriate information in a manageable way.
The Four C’s: Catch, Cause, Cure, Care
Catch: You cannot catch retinoblastoma from your sibling, and they did not catch if from you or anyone else.
Cause: Your sibling did not cause retinoblastoma to happen, and neither did you or anyone else.
Cure: The doctors/nurses/medical team are doing their best to help your sibling stay healthy/cure your sibling. It is not your job to make your sibling’s retinoblastoma go away.
Care: Your sibling is being cared for by the doctors/nurses/medical team and our family. Even though we (caregivers) may be busier/away at different times, you are still loved and will be cared for too.
- Talk about any potential changes in routine, or impacts to daily life the sibling will experience.
- Explain who will be there to continue their care (another parent, other family members, friends etc.) if necessary.
Children’s Understanding of Disease (from Cancer.org)
| Newborns, Infants & Toddlers | Younger Children (age 3 to 5) | Older Children (age 6 to 12) | Teenager (age 13 to 18) |
|---|---|---|---|
| • They have little awareness of illness. • Infants are aware of feelings that parents show, including anxiety. • They are aware of periods of separation from parents. • Toddlers may react to physical changes in their parent or relative or the presence of side effects (e.g. vomiting). | • They have a basic understanding of illness. • Children may believe that they caused the illness, e.g. by being naughty or thinking bad thoughts. This is called magical thinking. • Children are egocentric and think everything is related to them – Did I cause it? Can I catch it? Who will look after me? • Children may think cancer is contagious. | • Able to understand more complex explanations of cancer and basic information about cancer cells. • Some children may have heard about cancer but may not know how it starts. They may fill gaps in their knowledge with simple cause-and-effect logic. • They may feel responsible for causing illness because of bad behaviour. • Younger children may be starting to understand that people can die. Older children tend to understand the finality of death and its impact. If a child has been exposed to illness or death at a young age, they may have a more mature understanding of dying. | • They are capable of abstract thinking: they can think about things they have not experienced themselves. • They are starting to think more like adults and may want lots of information about the diagnosis. • They are able to understand that people are fragile. • They are able to understand complex relationships between events. • They are able to understand cause and effect, that is, relating to symptoms and illness or between action and outcome. • They are more likely to deny fear and worry to avoid discussion. They may talk to friends about what is happening, and act as though their friends are more important than their family. |
Changes Is Hard – But You Can Help!
Any change in family life and routine can be difficult for children to understand. A cancer diagnosis impacts the whole family regardless of who is diagnosed, just in different ways. When a retinoblastoma diagnosis happens, a lot can change very quickly.
Changes to daily life, parental availability, and attention can sometimes lead to behaviours and emotions in siblings that they previously did not experience or had grown out of. Changes in behaviour are normal, and siblings of all ages and stages of development may experience them when someone important is impacted by serious illness.
Let siblings know that the same rules about behaviour apply now. Practicing patience and understanding during this time of family transition is very important for everyone – parents, the diagnosed child and siblings. Children cope in many different ways, so work together to figure out a few different coping strategies for all members of the family.
Again, by continuing to communicate openly with siblings, they can share how they are feeling, what is worrying them, and what can be done to help them cope better.
Possible Reactions to a Sibling’s Diagnosis (from Cancer.org)
| Newborns, Infants & Toddlers | Younger Children (age 3 to 5) | Older Children (age 6 to 12) | Teenager (age 13 to 18) |
|---|---|---|---|
| • newborns and infants: unsettled, especially if weaned suddenly. • newborns and infants: may want to breastfeed more frequently for emotional comfort. • fussy and cranky. • clingy. • change in sleeping or eating habits. • colic. • toddlers: tantrums, more negativity (saying ‘no’). • return to, or more frequent, thumb-sucking, bed-wetting, baby talk, etc. | • thumb-sucking. • fear of the dark, monsters, animals, strangers and the unknown. • nightmares, sleep-walking or sleep-talking. • bed-wetting. • stuttering or baby talk. • hyperactivity or apathy. • fear of separation from significant others, especially at bedtime and going to preschool. • aggression (e.g. hitting or biting), saying hurtful things or rejecting the parent with the cancer diagnosis. • repeated questions about the same topic, even if it has been discussed several times. | • irritable, sadness, crying, anxiety, guilt, envy. • physical complaints (headaches, stomach-aches). • sudden worry about the health of other well family members. • separation anxiety when going to school or away. • regressive behaviour • hostile reactions like yelling or fighting, including towards the sick family member. • poor concentration, daydreaming, lack of attention, poor marks. • withdrawal from family and friends. • difficulty adapting to changes. • fear of performance, punishment or new situations. • sensitivity to shame and embarrassment. • trying to be extra good, with the risk that their distress and anxiety is not identified by parents – this is more common in girls. | • want to be more independent and treated like an adult. • anger and rebellion. • critical of how adults react to or handle the situation. • depression or anxiety. • worry about being different. • poor judgment and risk-taking behaviour (e.g. binge drinking, smoking, staying out late, unsafe sex). • withdrawal. • apathy. • physical symptoms from stress (e.g. stomach-aches, headaches). • more likely to turn feelings inward (so adults are less likely to see reactions). • regression: some lapse into previous behaviours, such as watching children’s TV shows or being very insecure and dependent on parents. • worry that they will also get the cancer themselves. |
Schedule a Family Meeting
Family meetings are a great way to keep all members of the family informed on what upcoming days or weeks may look like. Let siblings know about any changes to their typical daily routines (such as a doctor’s appointments, changes to school pick up routines, or parental abscesses).
Try to keep routines as consistent as possible. When extra support or help is needed, aim to call on other people outside the immediate family that your children know and have a good relationship with, such as grandparents or close family friends. This can lessen the stress of routine changes and changes in parental availability. Continue to reassure your children that they will always be well cared for and informed of changes, and that no matter where you may be, they are in your heart (and vice versa!).
The Invisible String is a wonderful book about connection, and how family members and loved ones are all connected by love, no matter where they are or what is happening – available from Amazon and as a read along on YouTube.
Get Help When Necessary
Balancing daily work and home life can be challenging even in normal times, and these challenges can increase when a child is diagnosed with retinoblastoma. Seek help from family members, friends and neighbors when necessary. By providing people outside of the family with specific tasks and ways they can help, you will be able to focus more time and energy on your family.
Let Others Know What Is Happening
As the diagnosed child and their well siblings experience this period of change in their family life, they may experience change within themselves as well. In collaboration with your child, inform those close to them of the diagnosis, such as teachers, coaches, and friends. The better informed the prominent figures in your child’s life are, the more likely they will be able to exercise patience and understanding, and offer support in many different ways.
Spend Time Together
Changes in routine and parental availability can present a difficult period of adjustment for siblings. By making an effort to spend one-to-one time with well siblings, you help to reassure them that they are loved and important. Take time to show each of your children how they are valued and appreciated. Sometimes a simple gesture such as having a snack together and asking about their day can make a world of difference.
In addition to alone time with well siblings, initiating whole-family time is also beneficial. Time spent having fun together as a family when possible, without a focus on stresses associated with the illness can help to maintain a sense of normalcy for children, and can help siblings feel connected with the family as a whole.
Provide Extra Support When Needed
Some children may require further support to cope with their sibling’s diagnosis and changes in the family routine. Many different professionals (hospital social workers, child life specialists, art therapists, etc.) are trained and able to support siblings of ill children. Various community programs have also been established to help siblings understand cancer and family routine changes, and facilitate their connection with other children who share similar family experiences. Ask your local healthcare team for assistance in connecting to an appropriate professional or sibling support program in your area.
Check out the SuperSibs porgram for siblings of kids with cancer aged four years+, at Alex’s Lemonade Stand Foundation.
About the Author
Keanna Gordon is a Registered Early Childhood Educator and graduate student residing in Vaughan, Ontario. She is currently completing a Master of Science degree focused on pediatric psychosocial care. Recently, Keanna completed a child life internship at the Children’s Hospital in Calgary, Alberta, before starting another internship providing children in the community with child life services.
Her goal is work with children in hospital settings and medical contexts by becoming a Certified Child Life Specialist after completing her degree this summer. Her own health care experiences as a child have driven her desire to make a difference in the lives of children and their families facing illness. In addition to her two child life internships, Keanna has also completed undergraduate placements at an autism therapy centre, a pediatric hospice, a children’s hospital, and child care settings, among others.
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