Diversity Corner

Co-Producing Anti-Racism Strategies to Promote Research Participation for Adolescents and Young Adults Living with Chronic Pain

 

Society of Pediatric Psychology: Anti-Racism Grant

Background

When it comes to children and young people (CYP) from racialized communities, we’re falling short in pediatric chronic pain research. They’re underrepresented, which means we’re not fully understanding or addressing their unique healthcare needs. Why? Systemic inequities, mistrust of medical institutions, and a lack of culturally inclusive approaches make it harder for families to participate. On top of that, logistical challenges and complicated research materials don’t help. We also need to think about caregivers' critical role—they’re often making healthcare decisions, so their experiences and perspectives are vital to improving outcomes.

 What We’re Doing

Our project focuses on breaking down these barriers to research participation, especially for kids with chronic pain conditions like sickle cell disease (SCD) and juvenile idiopathic arthritis (JIA). To figure out what’s working—and what’s not—we’ve been speaking directly with caregivers from diverse racialized backgrounds (Indian, British-Iranian, British-Black Caribbean, and African). Their insights are already proving invaluable. Plus, a caregiver of a child with SCD is working alongside us to ensure that our study stays inclusive and culturally relevant.

What We’re Learning

Here’s what caregivers are telling us so far:

• Mistrust runs deep: Past injustices and negative experiences with healthcare systems linger.
• Simpler is better: Research materials must be culturally relevant, easy to understand, and kid-friendly.
• Collaboration matters: Caregivers want to consult family or trusted sources before making decisions and value clear, respectful communication about study goals.
• Community is key: Co-creating research materials with input from the community can help build trust and relevance.

What’s Next

We’re expanding the conversation to include CYP, gathering their input to create recruitment materials that are not just effective but equitable. The goal? To foster research practices that truly meet the needs of racialized communities.

Takeaway: Building trust through culturally inclusive and community-driven approaches isn’t just the right thing to do—it’s essential for creating research that works for everyone.

 

Dr. Anna Hood, Ph.D.
Lecturer in Psychology
Division of Psychology and Mental Health
University of Manchester