If we were to ask any parent, family member, or caregiver in our community how important it is to provide proper support for siblings of children with medical complexity, you can bet we’d get an emphatic “VERY!” as their reply.
We know this support is important, but do we really know why? As it turns out, researchers have been collecting data on the impact that sibling support has on emotional well-being and family dynamics since the 1960s, and the evidence is clear: when siblings feel seen, supported, and valued, the whole family can thrive.
Luckily for us, we had Katie Taylor, CCLS, CEO and founder of Child Life on Call, and Hope for HIE Medical Advisory Board member, alongside Hope’s own Annie Gunning, CCLS, join our community for a live Q&A to answer your questions and equip us with the tools and framework we need to breakdown this evidence and better understand the why behind support programming, like SuperSibs.
Missed the live Q&A? No worries. We took notes, and like any good partner, we’re willing to share.
What is the role of a Child Life Specialist, and how has this evolved through time?
Child life specialists are experts in child development and family dynamics, helping them navigate the emotional and psychological impact of hospitalizations, diagnoses, and life-changing events. They focus on supporting the child and the whole family, using their knowledge to ask, “How can we make this experience better for everyone involved?”
Child life services have roots as far back as the 1920s when hospital volunteers used play to help children cope. But the profession really came into its own in the 1960s, thanks to Emma Plank. Her groundbreaking book, Working with Children in Hospitals, provided a blueprint for addressing the unique needs of children during hospital stays and is still considered foundational in the field today.
Over the years, child life has grown far beyond hospital playrooms. Today, child life specialists provide support in a wide variety of settings, tailoring their care to meet the needs of both patients and their families. Whether offering emotional guidance, helping siblings adjust, or educating parents about medical procedures, child life professionals create a more supportive healthcare experience for everyone involved.
And now, let’s fast forward to Annie’s role as the Child Life Specialist at Hope for HIE. Her main objective is to help children and families navigate medicalized life by empowering and supporting both children and their caregivers and fostering the ability to advocate for their needs while simultaneously reducing stress, pain, and anxiety. This often looks like support for patients and their families facing surgeries, tests, procedures, diagnoses, and hospitalizations by offering preparation, creating personalized coping plans, providing education, fostering creative expression, and incorporating medical play.
Why is it important for Hope to focus on supporting the entire family, not just the child with the diagnosis?And how has this support programming evolved since its original conception?
As an organization, we realized early on that HIE affects the entire family, not just the child with the diagnosis. Medicalized life impacts everything—family dynamics, finances, relationships, and family planning decisions, just to name a few. And for families who are already at the margins, the impact can be even more profound.
And the concept of specific sibling support didn’t just come out of thin air— it was born out of real-life experiences within our community. One of our HIE moms and her daughters helped develop the idea that eventually became SuperSibs. They knew firsthand how important it is to acknowledge HIE’s impact on siblings, and from there, we built a program to address it.
As we expand, we can finally do more for the entire family unit in ways we only dreamed of in the early days. The growth of programs like SuperSibs means we can provide concrete support to siblings, addressing their unique needs. From the range of outcomes families face—whether siblings never meet their HIE sibling who passed or are navigating daily life with a brother or sister who has complex medical needs—child life specialists offer the words, resources, and guidance we all need.
Involving child life in our programming helps ensure that every family has the tools to thrive regardless of their circumstances. After all, it’s not just about surviving the medical journey—it’s about building strong, supported families that feel equipped to face whatever comes their way.
What evidence-based research supports the need for support programming for siblings of children with medical conditions?
When it comes to the sibling experience, we know it’s not about just one diagnosis; research suggests that there are shared emotional experiences across a range of medical conditions, whether it’s HIE, autism, epilepsy, cerebral palsy (and the list goes on). While each family’s journey is unique, certain themes emerge across the board, each with its own set of potential challenges and benefits.
Emotional Complexity
Challenge: One of the most common experiences for siblings of children with medical conditions is the emotional complexity they face. These kids often feel pride and joy in their sibling’s achievements, but they also struggle with feelings like jealousy, anxiety, and frustration. What’s striking is how they can feel these emotions all at once, causing some highs and some lows (Leane, 2019; Mauldin and Saxena, 2017).
Benefit: Siblings often develop strong coping mechanisms over time. Research has shown that they use a variety of strategies to navigate their family’s unique situation, such as seeking emotional support from friends, engaging in hobbies, or finding comfort in school or other extracurricular activities. Many siblings become remarkably resilient, taking pride in their ability to handle difficult family situations and using their experiences as a source of personal strength (Grant & McNeilly, 2021).
Sense of Responsibility
Challenge: Increased responsibility can blur the line between sibling and caregiver. Many siblings step into quasi-parental roles, feeling like they need to “parent” their sibling with special needs, which can cause stress and uncertainty about their place in the family. While they want to be supportive, it can be overwhelming at times (Murray & Grayson, 2023).
Benefit: Research shows that siblings of children with disabilities often show heightened empathy and advanced maturity. One long-term effect we frequently see is how these early caregiving experiences influence career and life choices: it’s not uncommon for them to pursue careers in healthcare, social work, or other caregiving professions. (Grant & McNeilly, 2021). Many siblings of children with disabilities attribute the characteristics needed for these professions —such as empathy, patience, and a strong sense of responsibility—to their upbringing. This makes sense when you think about it, given their unique and early introduction to complex concepts like inclusion, acceptance, and quality of life.
Social Dynamics
Challenge: It’s not just within the family that siblings feel these effects—outside relationships are impacted, too. Siblings of children with disabilities often feel cut off from their peers, who may not fully grasp the challenges their family faces. This isolation can lead to difficulties in forming close friendships or finding people who can relate to their unique experiences (Young & Ashworth, 2010).
Benefit: While siblings may face higher stress levels and social challenges, their exposure to complex life events often grants them a broader awareness, a deeper sense of purpose, and a perspective shaping their career choices and values. To them, life is bigger than that soccer tournament or that math test; they often learn how to develop a more mature understanding of the world compared to their peers,
How do sibling support programs positively impact them and their families?
The proof is in the research: sibling support programs work, and for a multitude of reasons.
It allows them to connect with others who understand their unique challenges, creating a sense of shared identity. Their experiences feel valid and heard, and it’s comforting for them to know they’re not alone ((Meltzer, 2021).
It gives siblings a platform to share their feelings, helping them realize that their emotions matter. It’s a way to remind them that they’re not just background characters in their families’ stories (Meltzer, 2021).
Engaging in activities with other kids who truly “get it” helps normalize their experiences (Meltzer, 2021).
It gives them the tools to manage their emotions, navigate their unique circumstances, and feel more empowered (O’Brien, Duffy, & Nicholl, 2009).
It creates opportunities to build bonds and form friendships (Fullerton, Totsika, Hain, & Hastings, 2017).
It helps enrich family relationships, strengthening the entire family unit (Fullerton, Totsika, Hain, & Hastings, 2017).
When it comes to supporting siblings of children with medical complexities, what is important to remember and provide?
It’s clear that growing up with a sibling who has medical needs can be full of ups and downs that shape who they are. And though so many positives and benefits can emerge from their unique situations, it’s important to remember that siblings still have their own needs to thrive, including:
Safe spaces where they can openly express their feelings without fear of judgment, like support groups, one-on-one counseling, peer-mentorship programs, or programs like SuperSibs!
Validation and recognition of their feelings to make them feel seen, understood, and safe enough to express themselves.
Uninterrupted, individualized attention from one or both parents, even if for 15-20 minutes. Consider using tools like Mighty and Bright Special Time Cards to help make this a special, structured time for them.
A sense of purpose, like age-appropriate ways of helping, is needed to help them feel seen and valued.
That’s why child life expertise is so important. They know how to provide guidance, resources, and programs that support siblings and their family members in navigating these common but complex dynamics.
How can we normalize the complexity of sibling relationships in families with medically complex children?
Normalizing family dynamics for siblings isn’t about pretending everything’s okay or ignoring the challenges. It’s really about recognizing what they’re going through and creating a space where they feel stable and included, and there are ways to do this!
Include them in the conversation: Involve siblings in discussions about their sibling’s medical condition or care, but do so in a way that considers their development level — younger children typically need smaller amounts of information, while those at a more mature developmental stage may be able to handle more detail. It makes them feel valued and part of the process.
Carve out dedicated time: Even small, everyday activities —like driving to pick up a pizza or taking a short walk—can provide meaningful one-on-one time, build trust, and strengthen bonds.
Role-play or practice hard conversations: Practicing conversations through role-playing can help siblings understand what to expect, how to handle difficult situations, and establish conversational boundaries with their peers, who may ask tough questions out of sheer curiosity.
Validate their feelings: Let them know that their feelings and reactions are valid and normal — (yes, even when these feelings are big or conflicting!)
Be understanding and flexible: Siblings’ interest in being involved will ebb and flow as they grow. It’s completely normal for them to swing between wanting to engage and needing some space. This is a natural part of their development.
What do our community members want to know and learn when it comes to sibling support?
We gathered some questions directly from our community to ensure our Q&A truly reflects the needs and concerns of our families. Here are some of the most frequently asked questions that highlight the concerns on many families’ minds.
What’s the best way to support siblings when their medically-complex sibling is hospitalized?
Involve them in the planning and preparation: Keep them informed about hospital stays, including potential changes and length. Ask for their input—Who do they want to stay with? Would they like to help pick out a favorite toy for their sibling?
Engage in open communication: Be honest and answer their questions. Let them know what’s happening so they feel involved and are not left in the dark.
Reassure them their needs will be met: Discuss plans for unplanned or scheduled hospitalizations. Who will pick them up from school? Who will handle meals? Knowing the details provides comfort.
Encourage connection: Allow for sibling visits, Facetime calls, or texts. Keeping a shared notebook of daily activities between parent and sibling can help them stay connected during the separation.
For even more ideas, visit our key takeaways from our previous Q&A about this exact topic!
How can I help my child talk about their sibling to peers when they ask questions or comment about their sibling’s disabilities?
Start by understanding what they know: Ask them what they already understand about the diagnosis so you can clear up any misconceptions and help them feel more confident.
Give them the choice to respond or not: Let them decide if they want to answer the question. If not, they can say, “I love my sister, and she does a lot of cool things, but I don’t want to talk about her right now. Let’s keep playing.”
Practice with role-playing: If they do want to respond, role-play different scenarios. For example, if a friend asks, “Why is your brother in a wheelchair?” they could reply, “His muscles aren’t strong enough to walk, so he uses a wheelchair to move around. He can still play video games and hang out with me, though.”
“You never play with us” or “You’re always with (sibling)” are common statements in my house. How can I help my children feel they are first?
Validate and acknowledge their feelings, letting them know it’s okay to feel sad or left out.
Include them in activities with their siblings. If you’re feeding or changing a diaper, encourage them to do the same with their doll, stuffed animal, or superhero.
Set aside individual time for 10-15 minutes, letting them choose the activity. Use a timer to show them that this time is just for them. Let them lead and explore their world of dolls, video games, or a board game. Consider using tools like Mighty and Bright Special Time Cards to help make this a special, structured time for them.
How do I respond when a sibling feels things are unfair?
Validate their feelings and acknowledge what they’re experiencing.
Offer realistic options for things they can have or do, focusing on their own unique needs and wants.
Acknowledge what they have that their sibling doesn’t or can’t have, emphasizing their own strengths or privileges.
Normalize inequity by explaining that all sibling relationships have moments that feel unfair, and that’s a normal part of growing up together.
Name the reality of the situation—sometimes things won’t be equal, and that’s okay. Let them feel seen and heard.
How do we support a sibling who worries and acts as a caregiver to their sibling with HIE?
Acknowledge their efforts and express appreciation, but explain that caregiving is the parents’ responsibility.
Let them know their help is valued, but encourage them to focus on being kids. Offer them a non-caregiving role, like being a “super sibling supporter.” If caregiving interferes with their ability to play and be children, it may be time to create a plan or seek additional support.
Address the stress or tension head-on. They might sense family stress and want to help. Reassure them that their role is to enjoy childhood and that stress relief is not their responsibility.
Assign other roles by giving all siblings small, age-appropriate tasks unrelated to caregiving so everyone feels included.
How do I support a child who says it is no trouble having a sibling with HIE when, deep down, I know it must be having an impact?
Model emotional expression: Show that feeling scared or overwhelmed is okay. For example, say, “I’m crying because I’m feeling really scared right now. Sometimes, our feelings come out in our tears. I feel better after I cry and talk about it.”
Normalize their feelings: Share that other kids with siblings like theirs often feel frustrated or annoyed when people stare. Ask, “I wonder if you ever feel like that when we are out?”
Introduce relatable literature: Offer books with stories and quotes from other siblings to help them understand that their feelings are normal:
Views From Our Shoes – Edited by David H. Schwartz.
Sibling Slam Book – Written by Megan McDonald.
Special Brothers and Sisters – Edited by Monica McCaffrey and Annette Hames.
Sometimes – Written by Megan McDonald.
It’s Okay to Be Different – Written by Todd Parr.
Billy’s Sister – Written by Marcia S. D. M. Staudt.
Hi, My Name is Jack – Written by Beverley Randell.
Explore resources: Look for sibling videos from reliable initiatives or organizations like SibShops, Siblings with a Mission, or Courageous Parents Network to provide relatable perspectives and support
How do I navigate conversations with my children about their sibling who has died?
Encourage open dialogue: Talking about their brother or sister who died is a wonderful way for children to cope and keep his or her memory alive.
Share based on their inquiries: Provide as much information as they ask for. Some children are more curious and may need more details, while others may not. Honest information doesn’t always mean sharing every detail.
Expect repetitive questions: Younger kids often ask the same questions repeatedly, which is normal and helps them process the information.
Adapt to developmental changes: As children grow, they may ask more specific questions as their understanding of death evolves and becomes more abstract.
Express emotions: It’s okay to cry and show emotions while talking about their memory; doing so shows that all feelings are normal and valid.
Recognize their grief: Even though they never met, your children are still grieving the loss of their sibling and the hopes and dreams they had for their relationship. This process may come in spurts as they need time to process and play through this complex situation.
How can I support my child who hides their emotions in fear of being bothersome or burdensome to us as her parents?
Model emotional expression: When you experience strong emotions like fear or anger, name those feelings out loud. It’s okay to express emotions in appropriate and meaningful ways.
Provide alternative outlets for expression: Recognize that sometimes kids may not want to talk. Offer creative outlets such as drawing, listening to music, or engaging in physical activities to help them express their feelings.
Encourage open communication: While it’s important for your child to feel they can talk to you about their emotions, let them know they can also share their feelings with other trusted adults in their life. It reinforces the idea that they have a safe space to express themselves.
Create a supportive environment: Regularly check in with your child about their feelings, emphasizing that their emotions are valid and important. Reassure them that it’s okay to express themselves, regardless of their sibling’s needs.
How can I manage my children’s schooling and activities while balancing work and my son’s needs?
Assess therapy schedules: Consider taking breaks from certain therapies during the summer or during particularly busy weeks. This can create space for family activities or sports without overwhelming your schedule.
Prioritize activities: Look at your weekly appointments and see if there are opportunities to skip a therapy session to attend an important event or sport that your child is interested in. Balance is key.
Leverage your support network: Do not hesitate to ask for help from family, friends, or neighbors. Often, people are willing to assist more than you might expect, so reach out to your wider community for support.
Plan and communicate: Keep open lines of communication with your children about their interests and activities. Planning together can help them feel involved and understood.
Be flexible: Understand that it’s okay to adjust expectations. Flexibility in schedules can lead to more fulfilling family time and relieve some pressure from parents and siblings.
Don’t forget to take a look at our Family Advocacy resource to help!
How can we help preschoolers navigate big feelings related to medical complexity?
Encourage emotion recognition and coping skills: Regularly discuss emotions and model healthy ways to cope. For example, you might say, “I see you’re screaming and stomping; it looks like you’re feeling really mad.”
Provide expressive opportunities: Create spaces for children to express their emotions through various activities, such as physical movement, unstructured (but supervised) free play, drawing or crafting, and sensory play.
Acknowledge play as a processing tool: Understand that preschoolers often process their experiences through play. They may frequently engage in role-playing scenarios like “doctor” or “sick,” especially during times of emotional stress.
Use relatable literature: Read books that address emotions and hospital experiences. These stories can provide relatable scenarios, help caregivers find the right words, and offer a gentle way to explore these topics without fear.
Annie has also put together this downloadable bookmark to help children of various ages handle big emotions!
What resources are available to help provide and learn more about sibling support?
You asked for resources, and we got ’em! Remember that every family’s situation is unique, so for more tailored support and resources, reach out to Annie by connecting in at HIE.Support.
Hope for HIE’s Super Sibs Programming:This program specifically supports siblings of children living with or who have died from HIE. Our on-staff child life specialist, Annie, designs and develops these quarterly kits, which include activities to help siblings navigate their unique challenges. You can ask for a welcome kit or even purchase previous quarterly drops by visiting our Shopify site, linked above.
Sibling Support Project: This initiative offers many resources, including books, articles, and links to supportive communities specifically for siblings of children with special needs. It is a great starting point for families looking to connect with others with similar experiences.
Siblings with a Mission: This organization empowers siblings of children with disabilities through advocacy and support. They provide resources and a platform for siblings to share their stories and connect.
Courageous Parents Network: This network provides tools and support for parents of children with serious illnesses, helping them navigate the challenges of caregiving. Their resources include videos, articles, and community forums where families can share experiences and advice.
Ryan’s Case for Smiles – Sibling Page: This organization focuses on providing comfort and support to children with medical challenges, including specific resources for their siblings. Their sibling page offers helpful insights and activities designed to support siblings emotionally.
Sibling Leadership Network: This group advocates for the needs and rights of siblings of individuals with disabilities. They provide resources and training opportunities to help siblings become influential and effective leaders and advocates within their families and communities.
Camps for Siblings: Many organizations offer camps specifically designed for siblings of children with special needs. These camps provide a fun and supportive environment where siblings can connect with peers and share their experiences in a relaxed setting.
Support Spot App by Child Life on Call: This app includes resources on coping with grief, therapeutic activities, stages of grief, and recommended books about grief. It’s a handy tool for accessing support wherever you are. As a Hope for HIE community member, you have direct access to this app. Simply download the app, select Hope for HIE, and enter code 048325. (If you are not able to access the app, you can request all of our support resources and materials at HIE.Support instead).
Child Life on Call Podcast: This podcast discusses the challenges faced by families with children with medical complexities, offering insights and stories from child life specialists and other experts. It is an excellent resource for better understanding the sibling experience.
Hope for HIE’s Comprehensive Support Network: If you want to request services or just learn more about what Child Life services can do to support you and your family, head to HIE.Support to fill out the intake form and get started!
Watch the full recording, along with our other Child Life Q&As, on Hope for HIE’s YouTube channel under the Child Life Series playlist, or download our Key Takeaway resource for an at-a-glance look at how to help your kids cope during a dental appointment or procedure!
Fullerton, J. M., Totsika, V., Hain, R., & Hastings, R. P. (2017). Siblings of children with life-limiting conditions: Psychological adjustment and sibling relationships. Journal of Child Psychology and Psychiatry, 58(11), 1239-1247. https://doi.org/10.1111/jcpp.12771
Grant, G., & McNeilly, P. (2021). Supporting siblings of children with complex needs: A review of family, social, and policy contexts. International Journal of Developmental Disabilities, 67(2), 145-155. https://doi.org/10.1080/20473869.2020.1815429
Meltzer, A. (2021). What is ‘sibling support’? Defining the social support sector serving siblings of people with disabilities. Social Science & Medicine, 291, 114466. https://doi.org/10.1016/j.socscimed.2021.114466
O’Brien, I., Duffy, A., & Nicholl, H. (2009). Impact of childhood chronic illnesses on siblings: A literature review. British Journal of Nursing, 18(22), 1358-1365. https://doi.org/10.12968/bjon.2009.18.22.45656
Young, H., & Ashworth, A. (2010). The lived experience of siblings of children with chronic illness: A qualitative review. Journal of Pediatric Nursing, 25(3), 209-216. https://doi.org/10.1016/j.pedn.2009.01.003
Leane, M., & Saxena, S. (2019). Understanding the sibling experience: Emotional responses and long-term impacts of growing up with a sibling with disabilities. Journal of Family Studies, 25(4), 123-138. https://doi.org/10.1080/13229400.2019.1687285
Mauldin, M., & Saxena, S. (2017). The effects of childhood chronic illness on sibling relationships: A systematic review. Journal of Pediatric Psychology, 42(8), 809-823. https://doi.org/10.1093/jpepsy/jsx034
Challenge: It’s not just within the family that siblings feel these effects—outside relationships are impacted, too. Siblings of children with disabilities often feel cut off from their peers, who may not fully grasp the challenges their family faces. This isolation can lead to difficulties in forming close friendships or finding people who can relate to their unique experiences (Young & Ashworth, 2010).
Benefit: While siblings may face higher stress levels and social challenges, their exposure to complex life events often grants them a broader awareness, a deeper sense of purpose, and a perspective shaping their career choices and values. To them, life is bigger than that soccer tournament or that math test; they often learn how to develop a more mature understanding of the world compared to their peers,