Abstract
This article explores ethical challenges in qualitative research by bringing forward examples from the literature and from IN•GAUGE®, a research program spanning over 15 years and focusing on the significance of multiple perspectives and the value of gauging the health needs of young people and their families. In addition to exploring the ethical challenges in working with children and youth in research, we make the case that ethical considerations need to extend beyond research ethics boards protocols and present “sustaining mindful presence” as a conceptual frame practical guide for working through ethical challenges in qualitative research. We contend that greater participation of research subjects, including children and youth, is the way forward for developing more holistic and effective approaches to ethics within research institutions.
| Original language | English |
|---|---|
| Journal | The International Journal of Qualitative Methods |
| Volume | 16 |
| Issue number | 1 |
| DOIs | |
| Publication status | Published - Jul 17 2017 |
| Externally published | Yes |
Bibliographical note
Funding Information:The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: R.L.W. is supported by a Canadian Institutes of Health Research (CIHR) Applied Chair in Reproductive, Child and Youth Health Services and Policy Research (Grant#: CIHR APR-126339), 2012–2017.
Funding Information:
Funded studies discussed in this article that R.L.W. received funding for are as follows: 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’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. Changing geographies of care: Using therapeutic landscapes as a framework to understand how families with medically complex children participate in communities (abbreviated: Changing Geographies of Care Study). CIHR Operating Grant (Grant #: CIHR MOP 89895), 2008–2014. Youth involvement in health-care decisions: Ethical, social, and cultural perspectives (abbreviated: Youth Involvement in Health Care Decisions). CIHR Operating Grant (Grant #: CIHR MOP 89366) and CIHR-Manitoba Regional Partnerships Program Funding (Manitoba Health Research Council), 2008–2010. Youth speaking for themselves about health within their own life situations: An ethnographic study of youth’s perspectives of health and their own health interests (abbreviated: Youth Speaking for Themselves about Health within their Own Life-Situations Study). Social Sciences and Humanities Research Council Research of Canada (Grant #: 30715), 2007–2010. All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. Informed consent was obtained from all individual participants included in the study.
Publisher Copyright:
© 2017, © The Author(s) 2017.
ASJC Scopus Subject Areas
- Education