genus perspective
Listening to children in a caregiving household
A January 2025 exploratory study followed young people helping a family member with ALS. Their changing experiences remind us to ask children what family care feels like, while adults protect time for school, friends and ordinary childhood.
What we found in the research
A study published January 31, 2025 (opens in a new tab) followed 15 young people aged 10–19 who helped a family member with amyotrophic lateral sclerosis, or ALS. They completed brief assessments across seven days.
“Young carers are deeply involved in care and perceive care differently across moments, both positive and negative.”
— Melinda S. Kavanaugh and colleagues, Healthcare
The researchers found associations between how care moments were experienced and the young people’s feelings. This was a small exploratory study in southeastern Wisconsin, not a national sample or a test of an intervention.
It gives us a reason to listen closely without assuming that every child in a caregiving household has the same experience.
Why this matters to us
A child may enjoy time with a parent or grandparent and also worry when they are away. They may feel proud of helping but uncertain about what is expected.
At genus, we think both experiences deserve room in the conversation. Gratitude for a child’s kindness should not turn into an assumption that they can carry adult responsibilities.
Care can affect the rhythm of a household even when a child is not providing it. Plans change, conversations become serious and adults have less attention to spare. A child may need a simple opportunity to ask what is happening.
Make adult support visible
Our suggestion is to have a quiet conversation suited to the child’s age and understanding.
Ask what they enjoy doing with the family member and whether anything has felt difficult or confusing. Give them time to answer without correcting their feelings or praising them into taking on more.
Explain which adults are responsible for the care arrangement and whom the child can approach with a question. If something has become too much, make a concrete change rather than relying only on reassurance.
Protect ordinary activities such as school, time with friends and play. A child should not have to solve the adult coverage problem before joining an activity.
Keep family connection separate from responsibility when possible. Reading together, choosing music or sharing a drawing can be ways of spending time together without making the child responsible for care.
If concerns persist, seek appropriate support from a health professional or school support person. The family's practical plan should make room for the child’s needs as well as the adult’s.
The genus connection
Today, the genusConnect Care App (opens in a new tab) supports enabled conversations, events and tasks for invited community members. Features and access depend on the organization’s configuration.
Adults can use practical coordination to agree who is available while children attend their own activities. Our connection is to the adult support around the household, without assuming children should manage the platform or the care plan.
One question to take away
Does the child know which adult will handle a concern when they are away enjoying their own day?
Supporting references
- Moments of Care: Perceptions of Young Carers and Day-to-Day Well-Being (opens reference preview; direct link opens in a new tab)
Healthcare · 2025-01-31
Melinda S. Kavanaugh and colleagues followed 15 young carers aged 10–19 in southeastern Wisconsin for seven days, recording 260 brief assessments about helping a family member with ALS.
