Youth-Based Participatory Research: Lessons Learned From a Transition Research Study

Abstract

Transitions to postsecondary education for youth with disabilities, special health care needs, or both are often challenging. Adults design most interventions aimed at assisting youth in the transition process. In this article, we report on how youth can enhance transition interventions and research. Youth representing a variety of communitybased organizations that serve diverse immigrant populations served as co-researchers in a randomized controlled study called OPT4College, a program that provides postsecondary education transition support for youth with disabilities, special health care needs, or both. This youth-based participatory study used an iterative process that is quite different from the traditional researchstudy flow. The involvement of empowered youth and communities, in concert with academic and public health partners, increases the probability of creating interventions that ensure successful postsecondary transitions for youth with disabilities, special health care needs, or both. Pediatrics 2010;126:S177-S182

Youth as Partners, Participants or Passive Recipients: A Review of Children and Adolescents in Community‐Based Participatory Research (CBPR)

“…Whereas Girls Study Girls, Inc., utilized a participatory strategy with youth to evaluate an existing program, OPT4College is a youth-based participatory research project with the goal of creating a curriculum to support youth with disabilities who are transitioning to post-secondary education (Rosen-Reynoso et al 2010). The research team, many of whom had physical or learning disabilities or special health care needs, consisted of 6 adults, 12 youth, and 3 graduate students.…”

An assessment of the experiences and needs of adolescents with chronic conditions in transitional care: a qualitative study to develop a patient education programme

“…Different studies have investigated the participation of adolescents with chronic conditions in developing interventions (Rosen‐Reynoso et al . , McDonagh & Bateman , Serlachius et al . , Jacquez et al .…”

“…Adolescents with chronic conditions are able to act as experts regarding their needs (Brooks & Shemmings 2008). Different studies have investigated the participation of adolescents with chronic conditions in developing interventions (Rosen-Reynoso et al 2010, McDonagh & Bateman 2012, Serlachius et al 2012, Jacquez et al 2013, including the phase of transition (Brumfield & Lansbury 2004, Dovey-Pearce et al 2005, Huang et al 2011, Applebaum et al 2013, Kime et al 2013. No generic patient education programme focusing on the transition from paediatric to adult care in a group setting is currently available in Germany.…”

Letting Youths Choose for Themselves

“…Similar challenges with participant burden associated with the involvement of youths in CBPR have previously been described. [32][33][34] Concept mapping does, however, afford options that may reduce participant burden. While we did not exercise such options for this study, concept mapping software has allowed for participants to do activities online in their own time, that is, participants can stop the online activity at any point and save their work for later.…”