Conceptualizing Youth Participation in Children’s Health Research: Insights from a Youth-Driven Process for Developing a Youth Advisory Council

Abstract

Given the power asymmetries between adults and young people, youth involvement in research is often at risk of tokenism. While many disciplines have seen a shift from conducting research on youth to conducting research with and for youth, engaging children and teens in research remains fraught with conceptual, methodological, and practical challenges. Arnstein’s foundational Ladder of Participation has been adapted in novel ways in youth research, but in this paper, we present a new rendering: a ‘rope ladder.’ This concept came out of our youth-driven planning process to develop a Youth Advisory Council for the Human Environments Analysis Laboratory, an interdisciplinary research laboratory focused on developing healthy communities for young people. As opposed to a traditional ladder, composed of rigid material and maintaining a static position, the key innovation of our concept is that it integrates a greater degree of flexibility and mobility by allowing dynamic movement beyond a 2D vertical plane. At the same time, the pliable nature of the rope makes it both responsive and susceptible to exogenous forces. We argue that involving youth in the design of their own participatory framework reveals dimensions of participation that are important to youth, which may not be captured by the existing participatory models.

Physical activity and social connectedness interventions in outdoor spaces among children and youth: a rapid review

“…Further, given the underrepresentation of youth across the evidence base, there is a clear need for policy makers and researchers to work collaboratively with youth populations in Canada in both research and practice. 102…”

Engaging Youth in Research

“…Additionally, youth engagement can advance CER goals of promoting equity and inclusion in the research process (Ardoin et al 2014;Berg et al 2009;Flicker 2008;Ozer 2017;Ozer et al 2010;Ozer and Douglas 2012;Ozer and Wright 2012). Despite the opportunities to facilitate youth development through research, engaging youth in CER is subject to challenges, including a pervasive deficits-based view of youth and institutional-centric research process that can lead to mere tokenism in research rather than genuine engagement and involvement of youth (Arunkumar et al 2018). In the following subsections, we review the literature to highlight the benefits, outcomes, and tensions of youth engagement in CER.…”

“…Such predetermined research goals, interests, and timelines limit the capacity for youth engagement and leadership in developing research questions, designs, and methods. Arunkumar et al (2018) discuss how these institutional processes of research may lead to a dynamic where adult researchers simply integrate youth into conventional research processes without consideration for youth. In a similar vein, Reich et al (2017) discuss how projects that lack the infrastructure required to support youth may result in tokenistic and superficial involvement of youth in research.…”

“…Such conditions may undermine the meaningful involvement of youth. Often, research projects that engage youth are short-term and leave limited benefits for youth and their communities (Arunkumar et al 2018). Writing from an Indigenous perspective, Reich et al (2017) emphasize the importance of adult allies providing research training to youth as well as developing long-term, meaningful, and accountable relationships with youth researchers (Reich et al 2017).…”

“…Relatedly, with a growing appreciation for the importance of youth participation and voice in the decisions that impact their day-to-day lives (Arunkumar et al 2018;Jardine and James 2012), interest about the benefits that engaged research offers to youth and communities has also increased (Hawke et al 2018). With global shifts in youth policies, practices, and research toward positive youth development (PYD), a strengths-based and asset-building approach for youth development (Lerner et al 2005), there is great potential of CER to shift the idea of youth as just consumers and objects of knowledge to youth as producers of knowledge (Mosher et al 2014;Nichols et al 2013).…”