Involving youth with disabilities in the development and evaluation of a new advocacy training: Project TEAM

Abstract

Purpose: This paper describes a participatory research process in which six youth with disabilities (Youth Panel) participated in the development and evaluation of a manualized advocacy training, Project TEAM (Teens making Environment and Activity Modifications). Project TEAM teaches youth with disabilities how to identify environmental barriers, generate solutions, and request accommodations. Method: The Youth Panel conducted their evaluation after the university researcher implemented Project TEAM with three groups of trainees. The Youth Panel designed and administered a survey and focus group to evaluate enjoyment and usefulness of Project TEAM with support from an advocate/researcher. Members of the Youth Panel analyzed survey response frequencies. The advocate/researcher conducted a content analysis of the open-ended responses. Results: Sixteen of 21 Project TEAM trainees participated in the evaluation. The evaluation results suggest that the trainees found the interactive and individualized aspects of the Project TEAM most enjoyable and useful. Some instructional materials were difficult for trainees with cognitive disabilities to understand. Conclusions: The Youth Panel’s involvement in the development of Project TEAM may explain the relatively positive experiences reported by trainees. Project TEAM should continue to provide trainees with the opportunity to apply concepts in real-life situations. Project TEAM requires revisions to ensure it is enjoyable and useful for youth with a variety of disabilities.

Implications for Rehabilitation

• Group process strategies, picture-based data collection materials, peer teamwork, and mentorship from adults with disabilities can enable youth with disabilities to engage in research.

• Collaborating with youth with disabilities in the development of new rehabilitation approaches may enhance the relevance of interventions for other youth with disabilities.

• Youth with cognitive disabilities participating in advocacy and environment-focused interventions may prefer interactive and experiential learning activities over passive teaching approaches such as powerpoints and videos.

Keywords::

• Advocacy
• Participatory Action Research (PAR)
• young adults

Acknowledgements

The authors would like to acknowledge the Project TEAM trainees who participated in the training. We would also like to thank the following research staff who assisted with this project and the development of Project TEAM (all affiliated with Boston University unless noted): Sarah Bonderud, Sarah Kreditor, Stacy Hart of the Boston Center of Independent Living, Kristin Heinze, Kendra Liljenquist, Sarah Olsen, Michelle Mermelstein, and Julia Shin.

Declaration of Interest: This study was supported by a grant from the Deborah Munroe Noonan Memorial Research Fund, Bank of America, N.A., Trustee, PI: Jessica Kramer. Authors have no other conflicts of interest to report.