Incorporating the Perspectives of Youth: The Role of Youth Evaluation Partners in Study Design and Implementation

Background: Youth participatory action research (YPAR) is an increasingly popular tool for enhancing youth engagement in all aspects of the research process.  In designing an evaluation of the Mount Sinai Adolescent Health Center (MSAHC), ICF International included adolescent input in several study aspects, from instrument and protocol design to retention efforts and dissemination. Using YPAR in the research process is consistent with MSAHC’s approach to service delivery, which seeks to help adolescents develop into informed, active consumers of health care within a comfortable, respectful and confidential space.

Methods:  ICF developed rigorous written protocols for recruiting, interviewing, and training a team of youth evaluation partners (YEPs). Five adolescent evaluation team members were recruited based on recommendations from MSAHC leaders, members of the peer education program and through advertising at the clinic. After delivering intensive training in research design and ethics, ICF researchers worked with the youth evaluation partners on various aspects of study design and implementation.

Findings/Conclusions: YEPs were incredibly instrumental in shaping and directing the study. They helped with protocol and instrument development, cognitive and respondent burden testing, as well as providing input on participant recruitment, retention, data collection, and dissemination. Though youth were initially asked to commit to at least six months, all five YEPs stayed with the study at least one year and one YEP is still supporting retention efforts three years into the study. Successes of and challenges to training, engaging and retaining YEPs will be shared during this session.