Creating Space for Youth Voice: Implications of Youth Disclosure Experiences for Youth-Centered Research

Roberta Lynn Woodgate; Pauline Tennent; Sarah Barriage

doi:10.1177/1609406920958974

Creating Space for Youth Voice: Implications of Youth Disclosure Experiences for Youth-Centered Research

Roberta Lynn Woodgate, Pauline Tennent, Sarah Barriage

School of Information Science

Research output: Contribution to journal › Article › peer-review

8 Scopus citations

Abstract

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.

Original language	English
Journal	International Journal of Qualitative Methods
Volume	19
DOIs	https://doi.org/10.1177/1609406920958974
State	Published - 2020

Bibliographical note

Funding 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).

Funding Information:
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.

Publisher Copyright:
© The Author(s) 2020.

Keywords

arts based methods
community based research
methods in qualitative inquiry
mixed methods
photovoice

ASJC Scopus subject areas

Education

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10.1177/1609406920958974

Cite this

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title = "Creating Space for Youth Voice: Implications of Youth Disclosure Experiences for Youth-Centered Research",

abstract = "This paper examines youth{\textquoteright}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{\textquoteright}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{\textquoteright}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.",

keywords = "arts based methods, community based research, methods in qualitative inquiry, mixed methods, photovoice",

author = "Woodgate, {Roberta Lynn} and Pauline Tennent and Sarah Barriage",

note = "Funding 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). Funding Information: 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{\textquoteright}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{\textquoteright} 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. Publisher Copyright: {\textcopyright} The Author(s) 2020.",

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volume = "19",

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AU - Barriage, Sarah

N1 - Funding 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). Funding Information: 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. Publisher Copyright: © The Author(s) 2020.

PY - 2020

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N2 - 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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KW - photovoice

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Creating Space for Youth Voice: Implications of Youth Disclosure Experiences for Youth-Centered Research

Abstract

Bibliographical note

Keywords

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