When I first heard the term informal caregiver, I paused.
It wasn’t in a sibling space.
It wasn’t in a family systems conversation.
It wasn’t even in an OT lecture.
And when the role was described — spouses, aging parents, adult children —
Siblings weren’t mentioned.
I remember thinking:
Wait. What about us?
The Invisible Role
World Federation of Occupational Therapists discussions often center occupation, participation, and systems of care. And yet, in so many professional spaces, sibling caregiving remains unnamed.
Siblings often:
- Coordinate behind the scenes
- Manage medical information
- Provide emotional buffering
- Anticipate future planning
- Step in when parents age
But because it’s not always daily hands-on care, it gets minimized.
We are “just” siblings.
Except we’re not.
We are lifelong relational anchors in disability systems.
When Language Changes Identity
The term informal caregiver matters.
Language shapes policy.
Language shapes research.
Language shapes funding.
Language shapes who gets supported.
If siblings are not named, we are not measured.
If we are not measured, we are not funded.
If we are not funded, we are left to self-regulate indefinitely.
That’s not sustainable.
The Nervous System Cost
From an occupational therapy perspective, informal caregiving affects:
- Sleep
- Occupational balance
- Career choices
- Financial planning
- Long-term stress physiology
Many siblings live in low-grade anticipatory stress:
“What happens when…?”
And we often carry it quietly.
Because no one formally assigned us the role.
Changing the Narrative
We need to move from:
“Support the identified client.”
To:
“Support the ecosystem.”
That means:
- Naming siblings in caregiver conversations
- Including sibling data in research
- Building prevention models that include long-term family roles
- Creating spaces where siblings don’t have to explain why they’re tired
Caregiving isn’t just a task.
It’s an occupational identity.
And siblings deserve to be recognized within it.
A Call to Action
If you are a professional:
Start naming siblings in your assessments.
If you are in research:
Include siblings in your data.
If you are a sibling:
You are not “overreacting.”
You are navigating a lifelong role that has rarely been acknowledged.
We change narratives by speaking them out loud.
And I’m done letting siblings be the invisible line item in caregiving conversations.
