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.
|Journal||International Journal of Qualitative Methods|
|State||Published - 2020|
Bibliographical noteFunding Information:
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: 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).
Funded studies discussed in this article that RLW received funding for are as follows: The journey for survivors of childhood brain tumors: From post-treatment into adolescence and adulthood (abbreviated: Survivors of Childhood Brain Tumours), CIHR Operating Grant (Grant #: CIHR MOP-142460), 2015–2020. Youth’s voices: Their lives and experiences of living with an anxiety disorder (abbreviated: Youth Living with Anxiety), CIHR Operating Grant (Grant #: CIHR MOP-119277), 2012–2016. Living with and managing hemophilia from diagnosis and through key care transitions: The journey for families of children with hemophilia (abbreviated: Living with Hemophilia and other Bleeding Disorders), Canadian Hemophilia Society (CHS): Care until Cure Grant, 2013–2016. Aboriginal youth living with HIV: From diagnosis to learning to manage their health and lives (abbreviated: Aboriginal Youth Living with HIV), CIHR Operating Grant, Priority Announcement (PA): First Nations, Inuit and Metis Health from the Institute of Aboriginal Peoples’ Health (Grant #: CIHR IPH 131574) and CIHR Manitoba Regional Partnerships Program Funding (Manitoba Health Research Council), 2013–2015. Youth involvement in health-care decisions: Ethical, social, and cultural perspectives (abbreviated: Youth Involvement in Health Care Decisions), CIHR Operating Grant (Grant #: CIHR MOP 89895), 2008–2014.
© The Author(s) 2020.
- arts based methods
- community based research
- methods in qualitative inquiry
- mixed methods
ASJC Scopus subject areas