This paper examines youth’s disclosure experiences within the context of chronic illness, drawing on examples from IN•GAUGE, an on-going research program led by Dr. Roberta L. Woodgate. Youth’s descriptions of their disclosure experiences provide valuable insights into the ways in which they use their voice in everyday life. This examination of the disclosure experiences of youth offers a lens through which the concept of youth voice in the research process can be understood and youth’s agency foregrounded. We present implications for researchers, ethics boards, funding agencies, and others who engage in youth-centered research, and offer alternative terminology to use in characterizing the elicitation and dissemination of youth voice in the research process. We contend that conceptualizing such efforts as giving youth voice has the potential to discredit the significant agency and autonomy that youth demonstrate in sharing their stories, perspectives, and opinions within the research context. We advocate for the adoption of the phrase of providing or creating space for youth voice, as one alternative to the phrase giving youth voice.

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Published in International Journal of Qualitative Methods, v. 19.

© The Author(s) 2020

This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage).

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RLW is supported by a Tier 1 Canadian Research Chair (CRC) in Child and Family Engagement in Health Research and Healthcare (CIHR - Canadian Research Chair - 950-231845).