Strategies to increase participant diversity in pediatric research: a systematic review.
TL;DR
The review highlights how building trust, maintaining contact, and using familiar language and venues for study activities can improve research recruitment and retention in under-researched children and young people.
Abstract
Background
Multiple strategies have been introduced to improve research recruitment and retention of underserved children and young people (CYP) with long-term conditions. For the first time, this systematic review presents a structured description of CYP and caregiver preferences for these strategies and collates evidence of their impact on participation.
Methods
The Embase, MEDLINE, CINAHL, PsycINFO, Scopus, and Cochrane CENTRAL databases were searched. Studies were included from the inception of the database to September 2025 if they were undertaken in a high-income country, with CYP under 19 years with a long-term condition.
Results
We assessed 16,727 records and included 21 studies published between 1998 and 2024, all based in the USA, predominantly drawn from African American and Latino populations. We determined preferences for the positive impact of the use of familiar venues and culturally attuned community events for study activities; communication that was bilingual, used educational games or social media; reliable and equitable relationships with study facilitators; and the co-production of recruitment strategies and study interventions.
Conclusions
There was a lack of comparative evidence across individual approaches. The time and resources needed to build awareness, trust, and facilitate research participation in underserved CYP need broader acknowledgement from funders and policymakers. IMPACT The review highlights how building trust, maintaining contact, and using familiar language and venues for study activities can improve research recruitment and retention in under-researched children and young people. The additional time and resources required to increase the diversity of children and young people participating in research need to be understood by funding bodies. The review's structured description of recruitment and retention strategies and their comparative effectiveness provides valuable and practical insight for those wishing to diversify research participation.