Impact & Research Understanding and Supporting Youth Caregivers

Youth caregiving is a significant but underrecognized reality affecting millions of young people in the United States. While other countries have established national frameworks, the U.S. currently lacks coordinated research, standardized identification pathways, and structured policy responses. COYE is committed to advancing research, building evidence, and advocating for systematic recognition and support locally, statewide, and nationally. Behind every statistic is a young person balancing responsibility beyond their years.

Youth Caregiving in the United States

Youth caregivers are young people who provide unpaid care to a family member or loved one facing chronic illness, disability, mental health challenges, substance use disorders, or terminal diagnosis.

National estimates include:

5.4 million youth caregivers under age 18 in the U.S.
72% of youth caregivers care for a parent or grandparent
Youth caregiving is associated with:
- Chronic absenteeism
- Academic strain
- Emotional stress and burnout

In a Bronx pilot study conducted in 2015, 43% of surveyed middle and high school students identified as youth caregivers, revealing a prevalence that is consistent with national estimates but largely unmeasured in formal systems.

Despite this evidence, there is no standardized national research framework or federal policy recognition in the U.S. to identify, measure, or address youth caregiving at scale.

“Sometimes I miss school because I have to stay home with my mom.”

— Middle school caregiver

Recognition begins with measurement — and measurement makes change possible.

Global Context: Lessons from Other Countries

Youth caregiving is increasingly recognized internationally. Several countries have established frameworks, service infrastructures, and research initiatives that inform best practices.

United Kingdom

The United Kingdom has a well-developed network of young carers organizations, supported by legislative frameworks and integrated within education and health systems. Organizations such as:

Provide systemic support, awareness, and advocacy. They collaborate with schools, social services, and the National Health Service (NHS), and are increasingly incorporated into public policy discussions.

Australia

Australia’s Little Dreamers (littledreamers.org.au) exemplifies a nationwide approach centered on youth wellbeing, community engagement, and psychosocial support.

Emerging International Recognition

Programs and awareness efforts are developing in other regions, including Japan and China, demonstrating growing global interest in recognizing and supporting youth caregivers.

United States — State Efforts

In the U.S., states such as Florida are taking preliminary steps. The American Association of Caregiving Youth has led programmatic efforts to identify and serve youth caregivers in community and school settings, providing valuable lessons for national models.

The Research Gap in the U.S.

While international models demonstrate formal recognition and system coordination, the United States has not yet established:

A federal or statewide mandate for youth caregiver identification
Standardized screening tools embedded in education or healthcare
A national research agenda with longitudinal data
Coordinated cross-sector data sharing

Without systematic research, youth caregivers remain statistically and institutionally invisible, limiting policy responses, resource allocation, and coordinated support.

COYE’s Research & Evaluation Framework

COYE is advancing a structured approach to research and evaluation that can inform policy, practice, and funder investment:

Screening Instruments

Validated tools designed to identify youth caregivers across settings (schools, healthcare, community organizations).

Classification Model

Categorizes youth caregiving based on context, intensity, and risk factors.

Pre/Post Evaluation Tools

Assessment measures that track change over time, including educational engagement, wellbeing, and resource access.

Needs Assessment Framework

Qualitative and quantitative tools for community and system needs analysis.

COYE’s tools are built to be scalable, adaptable, and aligned with research best practices. They are available for partners and stakeholders seeking to implement structured measurement in their own systems.

Strategic Partnerships

COYE’s partnership network strengthens both implementation and research feasibility:

SM Medical – clinical insights and referral pathways
Montefiore BOLD Program – integrated care coordination
Bronx Schools & Educators – pilots of identification frameworks
Community Organizations – youth and family support networks

These partnerships create a foundation for collaborative research, shared data goals, and system-level alignment.

Advancing Formal Research & National Recognition

COYE believes that the U.S. can and must do better in its understanding of youth caregiving. To that end, COYE advocates for:

A formal statewide research initiative (New York first, then national replication)
Cross-sector research partnerships (education, health, community)
Longitudinal data collection to measure prevalence, outcomes, and service impact
Integration of youth caregiver screening within public systems
Policy frameworks that institutionalize recognition, referral, and support

Youth caregiving is not an isolated family matter — it is a public systems issue that intersects with education, mental health, workforce development, and health equity.