Supporting Siblings Through a Child’s Cancer Treatment

By Dr. Mikey Pariseau, PhD

When a child is diagnosed with cancer, the whole family feels the impact—including siblings. Many siblings of cancer patients experience fear, confusion, and even traumatic stress symptoms during treatment, and beyond. The good news? A recent research study found key strategies for involving siblings in treatment to support their emotional health.

Study Finds Ways to Help Siblings of Children with Cancer

I’m a pediatric psychologist and I’ve done research on siblings of pediatric cancer patients for a little over a decade. In my recent study, I worked to better understand the different ways families involve siblings in cancer treatment, and how it influences their emotional well-being.

We found specific things that families can do during cancer treatment to help siblings cope with their cancer-related emotions and support their emotional adjustment.

Tips for Helping Siblings of Cancer Patients

Below is list of tips for involving siblings in their brother or sister’s cancer treatment based on what we learned in our study. You can also find additional information on helping siblings in CopingSpace’s sibling section.

Be Prepared for Times Siblings of Kids with Cancer Are Likely to Be Upset

There are common experiences that tend to be frightening and distressing to siblings of pediatric cancer patients. These often-upsetting times include:

• Learning the cancer diagnosis
• Seeing the patient in the hospital for the first time
• Seeing visible symptoms (e.g., hair loss, weight loss, vomiting, fatigue)
• Watching or hearing about medical procedures (e.g., surgeries or port access)
• Seeing or hearing about medical emergencies (e.g., patient goes to the emergency room)
• Seeing other patients in the hospital or clinic

It’s helpful for families to be aware of these times so they can prepare siblings, normalize their reactions, and provide support.

Don’t “Shield” Siblings from Cancer-Related Experiences

Because many experiences during a child’s cancer treatment can be upsetting, it is understandable to want to “protect” siblings. But when families try to shield siblings by not allowing them to visit the hospital or clinic, they can actually feel more scared.

Children have strong imaginations. When they do not see what cancer treatment looks like, they often come up with things that are scarier than the truth. However, when siblings get to visit the patient and see what treatment looks like, it can help them feel less scared over time.

It’s totally normal for siblings to feel upset during and after their first visit to the hospital or clinic. Big emotions and worries can come up. For example, seeing the patient in their hospital bed can be a shock and trigger worries.

When a sibling reacts strongly, it can be confusing if you should stop visits all together. But actually, for siblings with big reactions it can be particularly important for them to visit again! Going back gives them the chance to become more familiar with what they are seeing and to learn how the doctors help.

What parents can do:

• When possible, allow siblings to visit treatment settings multiple times.
• First visits can trigger big emotions— support siblings to visit again to help them become more comfortable.
• If in-person visits are not possible, consider virtual ways to help siblings get more familiar (e.g., give the sibling a virtual tour of the hospital room or ask the oncologist to introduce themself via video call).

Share Honest, Age-Appropriate Information with Siblings of Kids with Cancer

Children who understand what is happening and what to expect tend to feel less scared. So, sharing age-appropriate information about the cancer diagnosis and preparing siblings for visits is essential.

Prepare siblings before visits to the hospital or clinic by telling them what they will see and what is going to happen. Preparation is particularly important before first visits and when any changes occur. Examples include when the patient is starting a new treatment or has new symptoms.

What parents can do:

• Explain the diagnosis and treatment to siblings in age-appropriate, honest terms.
• Prepare siblings for what they will see (machines, hair loss, procedures). Especially for kids who haven’t spent time in hospitals before, it can be helpful to describe sights, sounds and smells they may experience.

Make Time for Siblings to Ask Questions

While visiting and observing medical care, siblings are taking in a lot of new information! To help them make sense of it, create opportunities for them to ask questions – of you and the medical staff.

It can be helpful for this to happen when the patient is not present so siblings can ask questions openly. Somemay want to know more than the patient does, or may have questions that would be upsetting to their brother or sister.

At times, siblings of cancer patients may ask questions that you don’t know the answer to. That’s okay! You don’t need to have all the answers. You can say, “I don’t know, but we can find out together.”

At other times you may not know how to answer their questions in a way that is age-appropriate. In this case, ask your care team for guidance. Your child life specialist can give you tips for talking to the sibling about various topics. You can also ask them or the doctor to meet with the sibling to answer their questions directly.

What parents can do:

• Create regular opportunities to ask questions – including time when the patient is not there.
• Ask medical providers and child life specialists to help explain things to siblings of pediatric cancer patients. You can also visit the age-appropriate Children’s page for further phrases and guidance.

Let Siblings of Cancer Patients Make Decisions About Their Involvement

It’s important to ask siblings how much they want to be involved in the patient’s treatment.  Often siblings want to be more involved than their parents realize. However, every child is different. There are also siblings who wish they spent less time at the hospital/clinic. So, taking the time to ask them is an important first step.

You should also ask siblings what they want to do in cancer treatment settings – because again, preferences vary! For some, it helps to learn more about cancer. Activities like talking to providers and learning about medical procedures can help siblings feel less anxious.

Other siblings want to focus on finding ways to help the patient. It can be upsetting that it often feels like there is nothing they can do. Identifying ways for these siblings to help can make them feel better. For example, a sibling could bring something to cheer up the cancer patient, such as a toy, a playlist, or a silly news-style report of the school gossip. Siblings can also take on special helper roles. Examples include getting family snacks from the cafeteria, turning on the switch to the patient’s stem cell transplant, or helping the patient with PT exercises.

Other siblings may just want to spend time together and for things to feel “normal.”  In this case, you could ask the care team for help with planning family activities in the hospital, such a family movie night or a party to celebrate their birthday or a holiday.

Of course, families are juggling a lot during cancer treatment and sometimes can’t involve siblings exactly as they’d like. But research shows that even when families can’t do exactly what their child wants, taking the time to ask about their preferences helps them feel seen and included. Families can then come up with a compromise that still meets the sibling’s needs.

Remember, there is no one “right” way to involve siblings of pediatric cancer patients– and their preferences are likely to change over time. Ongoing communication and creativity are key to finding things that work for everyone.

What parents can do:

• Ask siblings how they want to be involved in cancer treatment – and revisit the conversation over time.
• Talk to siblings about different ways to be involved (e.g., learning about cancer, emotionally supporting the patient, spending time together) and help them do it.
• Offer choices, when possible, even small ones.

Make Space for All Feelings

Finally, it’s important to give siblings of children with cancer opportunities to express their feelings – including the tough ones like fear, sadness, anger, and jealousy. When a family is coping with a cancer diagnosis, parents can feel the need to “stay positive” and “be strong,” and these same messages can get sent to siblings.

This is totally understandable – staying positive can be an important part of finding a way forward and supporting the patient. However, issues can arise when siblings feel like they need to be positive all of the time and can’t talk about their tough feelings.

It’s helpful for parents to let siblings know that it’s normal for them to feel things like fear, sadness, anger, and jealousy, and that having these feelings doesn’t mean that they’re not strong or supportive. Parents can also help siblings of cancer patients by modeling healthy ways to share and manage their emotions, and having regular check-ins to see how they’re doing.

Siblings will vary in how they want to communicate their feelings, as well as their ability to put big emotions into words. Offering several ways to process and share feelings can help. While some children like to talk about their feelings, others may want to write them out, draw a picture of how they feel, or just have space to cry while being comforted.

Finally, families can ask their care team, such as their child life specialist or psychologist, for specific ways to help siblings share their emotions. You can also visit the Coping Tips for Siblings page for more ways to support them.

What parents can do:

• Avoid messages that suggest siblings need to be “strong” or hide emotions.
• Let siblings of cancer patients know it’s okay to feel scared, sad, angry, or jealous.
• Have regular check-ins to see how siblings are doing.
• Model healthy emotional expression of tough feelings.

A Final Word for Parents of Cancer Patients

There is no single “right” way to support siblings during cancer treatment.  All families are different and what works for one sibling might not work for another.

That said, what this latest research suggests is that involvement, information, choice, and emotional support can help siblings’ mental health.

There are many ways to do this. By working together, with the sibling and your care team, you can find strategies that work for your family.

**Statements on this blog reflect the author’s personal opinion and do not represent the views of Ryan’s Case for Smiles. They are also not to be viewed as personal medical advice, but rather for the purpose of general knowledge. The reader should speak to their healthcare team, or their child’s, for medical advice.**

About the Author: Dr. Mikey Pariseau is a pediatric psychologist and assistant research scientist at Nemours Children’s Health. She received her PhD in Clinical Psychology from Boston University (BU), where she started to do research on siblings of young people with cancer while she was working with Dr. Kristin Long. In her current role at the Center for Healthcare Delivery Science at Nemours, Dr. Pariseau continues to study patient and family adjustment to pediatric cancer. She also does clinical work with youth and families. She lives in Baltimore, Maryland with her fiancé Aly and their two pups, Billie and Esme.

Dr. Pariseau would like to thank the siblings and parents who participated in this study and shared their experiences. If you’re interested in the original research publication, you can check it out here.