Well Child Syndrome: Supporting Siblings of Children with Acute and Chronic Conditions
Have you ever heard of these terms?
Well Child Syndrome
Well Sibling Syndrome
Glass Children
Forgotten Children
All of them are used to describe siblings of children with an acute or chronic condition. Research shows that an estimated 20-25% of school-aged children live with a chronic illness.
When I worked at a children’s hospital, a crucial part of my role became providing therapy for siblings of sick children. And more often than not, they presented as:
strong
resilient
kind
helpers
well-behaved
mature
flexible
Over time, I would realize how much these siblings benefitted from therapy. I’d often see their relief when they were able to talk about their feelings and experiences.
These siblings are called “glass children” not because they are fragile or easily broken, but because they are often looked through in order to focus on their sibling’s needs.
Along with higher rates of empathy, maturity, and compassion, there’s an increased risk for internalizing emotions, developing anxiety and depression, a sense of abandonment, and higher rates of post-traumatic stress (Fleary & Heffer, 2013) for these siblings.
I continue to specialize in providing therapy for siblings of sick children in Montclair, NJ, and online for clients in other parts of NJ and NY. It’s something I’m passionate about; there’s a real need to address the mental health of siblings.
In this post, I’ll cover some points on how to support siblings of children who have higher needs due to an acute or chronic condition.
Support Connection & Involvement
Keeping siblings connected during a time that is marked by either planned or sudden disconnection and separation (E.g. long hospitalizations, frequent trips to the doctor, emergency visits, physical restrictions, changes in typical mood or behavior due to medications) can be tricky.
Involving siblings in the care of a sick child may feel daunting. It can mean thinking of new ways your children can bond, such as writing letters or drawing pictures to exchange. Perhaps it’s hosting a family brainstorming session around thinking up safe activities for play together and discussing any new limitations or rules.
In times when there’s an abundance of change or disruption, creating opportunities for involvement and connection can help increase a sense of consistency and predictability. Whether it’s physical involvement, such as including siblings in visits to the hospital or doctor’s office, or emotional, such as inviting siblings to talk about their questions or concerns, keeping a connection is key.
Therapist Tip
Children are impacted by changes, stress, and long and short-term absences of loved ones. It’s a myth that children are “too young to remember” or that they will be traumatized if they’re more involved. Children require child-friendly ways to understand adult concepts.
Consider the Environment
What words come to mind when you think of hospitals and other medical environments? If you’re like me, probably something along the lines of:
sterile
cold
bare
scary
loud
fast-paced
For siblings of sick children, preparing and practicing for what they will see and experience in any kind of medical setting is key. It can be shocking to visit a loved one and see them in a hospital gown, within a bare room, with beeping machines, heavy double doors, the scent of antiseptic, or noticeable physical changes that have happened.
When preparing a sibling, consider the 5 senses. What will they see, smell, touch, taste, and hear during their visit? Draw pictures, play out scenes, and normalize the environment before they are in it. Invite them to ask questions. Parents may need to do this a few times; siblings may need more time to acclimate to medical settings because they visit less frequently. Checking in with well-children and providing an outlet for self-expression can help.
Keeping the home environment as routine as possible is important, too. Rules and boundaries should stay the same. Calling upon support systems, relying on the community, and asking for help is also important for keeping home life as stable as possible.
Therapist Tip
Pediatric hospitals will offer an abundance of support and resources for siblings of sick children. Ask your child’s psychosocial team about scheduling therapy sessions or for a list of sibling support programs in your area.
Make Space for Emotions
When a child is sick, everyone will experience emotions and cope differently. For siblings of a sick child, they may feel anger, resentment, or jealousy around the fact that their sibling is receiving more parental time, energy, and attention. They may also experience fear, anxiety, and worry.
Children typically tell us how they feel through their behaviors, not their words. This is why art therapy is so effective; children can use play, art, and other creative modalities to express their inner world. Children may regress or act out entirely new behaviors. It can be disorienting and overwhelming for parents to witness this as they also are caring for their sick child. It’s important for parents to know that these are generally typical responses to atypical situations, and there are many ways to support your well-child through.
Scheduling 1:1 time with your children that is focused on having fun and being in the moment can improve relationships and support emotional processing. Therapy for siblings of a sick child can also help. Children often need some extra support around processing their emotions during stressful times. Since siblings of children are at a higher risk of developing trauma and anxiety, therapy can be a form of preventative care.
Therapist Tip
Parents don’t want to see their child upset; it’s typical for a parent to reassure their child that everything will be okay and not to worry. A more effective strategy that parents can utilize when a child is deeply upset is to listen to and validate their pain. This communicates that you are unafraid to be with them in their experience, which models emotional strength for your child.
Questions and Education
Children with acute and chronic conditions can face many phases of treatment over the course of a few months or for the rest of their life. This means that siblings of sick children will also face ongoing stressors and changes, and they will likely develop new questions and need ongoing education and support over time.
Sharing books, educational resources, or bringing your child to a therapist who specializes in the unique situation that is happening in their life can help siblings receive the support they need. It’s different to have a sibling who has cancer than it is to have a sibling who has a mental illness than it is to have a sibling who has Chron’s disease. A therapist who understands the nuanced impacts of different conditions is important.
Therapist Tip
Being the sibling of a sick child is an experience that indefinitely shapes and impacts one’s life. Sometimes, it’s only in adulthood that a person might fully begin to think about how much these experiences have shaped them. It’s never too late to seek therapy around processing what it was like to be the sibling of someone who needed (or continues to need) higher levels of care.
Help and Support
If you are looking for support, I provide child therapy in Montclair, NJ. Having previously worked as a therapist in top-ranked hospitals for a decade, and through my own personal experience of growing up as the sibling to a child who required ongoing medical care for a chronic condition, I know how crucial this type of support is.
I also work with adults who grew up with a sick sibling and are motivated to process this experience in psychotherapy.
