Imagine spending years living on the edge of your family’s story.
You know something is wrong with your brother or sister. You see the hospital visits and medication routines, the silent worry on your parents’ faces. You piece together things from overheard conversations, wondering if what you’re feeling is normal and if anyone notices what you’re missing.
This is a reality of life for millions of children worldwide with chronic health conditions. In the United States, up to 30% of children grow up with a sibling who has a chronic condition such as epilepsy, cystic fibrosis, childhood cancer or cerebral palsy.
Statistics in Aotearoa New Zealand and Australia are comparable. The ASB National Health Survey 2022 found that two in five (45%) Australian children live with at least one chronic condition.
New Zealand has no exact figures but the 2023 Household Disability Survey identified 98,000 disabled children, with asthma affecting only 15-20% of children. When the full range of chronic conditions is considered, the number of older children with affected siblings is likely similar to that seen in the United States and Australia.
Research consistently shows that the impact extends beyond the child who is sick.
Siblings experience high anxiety, school disruption, social isolation and major changes in family life. Yet as our work with the Sibling Advisory Group shows, siblings are not widely seen as designed to support families in clinical settings.
They often sit side by side while the conversation takes place around them rather than with them. Doctors talk to parents. Parents talk to the child about the situation. The brothers watch and are concerned but receive little direct information.
Many describe feeling overlooked or ignored during deployment and left without language to understand the situation.
Lack of sibling support in children’s hospitals
To find out how well children’s hospitals in New Zealand and Australia are helping siblings, we look not at policy documents or mission statements, but at what siblings and families can actually access.
We searched the websites of major children’s hospitals in both countries. Using the search term “sibling,” we examined whether any material was actually written for parents or clinicians for siblings. The findings were disappointing.
In New Zealand, only Starship Children’s Hospital returned search results. Of the 54 results, only two bereavement booklets were remotely relevant, but both were still written primarily for parents.
Kids First, Te Wau Noi and Whangarei Hospital have provided nothing for the siblings.
Across Australia, provision was uneven. The Sydney Children’s Hospital Network and Royal Children’s Hospital Melbourne offered special items for siblings, while Queensland Children’s Hospital, Monash Children’s Hospital and Perth Children’s Hospital had less.
Even where the material was available, sisters were rarely the desired audience. Most information mentions parents or mentioned siblings briefly in family sources. When siblings were admitted, it was in a context of grief, not the everyday reality of growing up alongside a brother or sister with a chronic condition.
Beyond the hospital bed
In contrast, some of the wealthiest and most intellectual patrons sat outside the hospital system entirely.
Charities and NGOs such as Siblings Australia, Canteen Australia, Drenched, Kidshealth and New Zealand’s Parent2Parent offered age-appropriate information, peer support programs, camps and opportunities for siblings to connect with others like them.
These aids are deeply important but are rarely signed up by health care teams and many families do not know they exist.
For the young people we work with, these findings are surprising. Members of our sister advisory group describe feeling invisible in clinical spaces, excluded from conversations about their sibling’s health, and left only to fill in the blanks.
Research replicates this experience, showing limited hospital access and information filtered through parents can leave siblings confused and distressed.
What are the brothers asking for?
Siblings want clear, honest information about their sibling’s condition, shared in ways that are appropriate for their age and understanding. They want to be included, not ruled out of the room.
They want clinicians to know that this is their experience as well. Evidence shows that when siblings receive accurate and timely information, anxiety is reduced and fears about their health or future are reduced.
Lots of opportunities to connect with friends. These are not unusual requests. They are the foundations of good child and family care, recognizing the whole family, not just the child in the hospital bed.
International reviews from Canada and elsewhere show similar findings to our review, with sibling-focused supports lacking, poorly integrated and often invisible to families.
Researchers in Sweden, Canada, Australia and New Zealand are now working together to ask siblings aged 5 to 18 what information they need and how they would prefer to receive it, with the aim of developing specific resources for siblings.
The message of Research, Action and Youth is clear. Siblings are afterthoughts in systems organized around patients and parents.
For doctors, change starts with accepting siblings and providing age-appropriate explanations. For hospitals, this means making sure that special resources are available for siblings.
Inclusive sibling care is not optional. For every child waiting outside a clinic room, their brother or sister is missing through a door they can’t follow, it’s the right thing to do.
Thanks to Research Assistant Jess Gardiner and the young people who make up the New Zealand Brothers Advisory Group.
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