Developing a Youth-Centered Ethics Training for Youth Participatory Action Research: Navigating the Academic IRB

Background

Institutional Review Boards (IRBs) are a critical procedural step for academic researchers to ensure research ethics and protections for participants. Yet, as innovative forms of research focused on social change, such as community participatory approaches, are increasingly used within social work, challenges can emerge in relation to IRBs.

Compounding such tensions is the emergence of youth participatory action research (YPAR). At its core, YPAR systematically engages youth throughout the research process, from conceptualization, to implementation and analysis, to the utilization of findings to promote social change. YPAR acknowledges that young people are experts in their lives, have a unique contribution to the research endeavor, and are capable of engaging in the research process and impacting their communities. YPAR is growing in popularity as an approach, with multiple sessions and SIGs at recent SSWRs focused on YPAR practices.

The core concepts of YPAR stand in contrast to the traditional role of young people as research subjects. In most IRB processes, young people are viewed as vulnerable, as a population needing special protections, and often without agency. More knowledge is needed to examine how social work research can navigate IRB practices and protocols while centering young people as research partners.

Methods

This paper focuses on lessons learned from an effort by social work researchers to engage youth in a YPAR project. Because youth researchers were actively engaged in data collection, the university required them to receive human subjects training and approval. However, standard CITI trainings are tailored to academic researchers, and a youth-appropriate training option was not available through the university. As a result, the academic researchers were asked to develop a youth-centered research ethics training, subject to review and approval by the university’s IRB.

Results

An intentionally youth-focused training was developed, paralleling the university’s training protocol. It included sections on (1) understanding the role and limitations of the IRB, (2) exploring issues of consent and confidentiality through examples relevant to young people’s lives, and (3) critical discussions about youth’s agency and role within the research process. Youth team members piloted the training; upon completion, the university IRB granted them “co-researcher” status as full collaborators in the research process, with research credentials they could use in the future.

Implications

Social work research focused on social change is strengthened by meaningful community engagement, especially the involvement of youth as co-researchers. New models for navigating traditional research structures will be needed as these forms of social work research evolve. The implications of this pilot highlight the potential for IRBs to credential young people as co-researchers.

In this project, working with the IRB to create training tailored to youth researchers involved months of negotiations to come to agreement on an appropriate approach. Social work will benefit from models of how to work with IRBs to meaningfully prepare youth for research responsibilities. We offer recommendations from our experience for how to train young people to be active - and ethical - participants in the research process.