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Title	Know your rights with research: A new approach to knowledge exchange with youth
Creator	Johnson, Joy Shoveller, Jean Chabot, Cathy Read, Jennifer
Contributor	University of British Columbia. NEXUS Spring Institute
Date Issued	2009-04
Description	This paper presents some of the ethical issues encountered during a participatory action research (PAR) study with youth and the challenges and opportunities the project created for knowledge exchange (KE). The study aimed to develop ways to meaningfully engage young people in research and have them co-develop research examining youth sexual health. Members of the Youth Sexual Health Team employed and trained four youth aged 18-22 years old as Youth Co-Researchers (YCRs). Together, we examined how existing policies regarding the conduct of academic research can affect young people’s participation in research and its implications for knowledge exchange. Our study revealed that many youth do not understand their rights as research participants. To address this gap, we created the “Know Your Rights with Research” card. This handout explains in youth-friendly language the basic and fundamental rights that youth need to be aware of in order to make informed decisions about their participation in research. The “Know Your Rights with Research” handout is proving to be a valuable exchange tool in our research. We use it during the informed consent process to help explain the meaning and operationalization of informed consent, confidentiality, and anonymity, among other issues. We suggest that the “Know Your Rights with Research” handout is not solely about conducting research in an ethical manner but is also providing new opportunities for knowledge exchange with young people – a population where conventional KE strategies are not always successful.
Extent	596283 bytes
Subject	Social context Participatory action research Youth Sexual health Knowledge exchange Health behaviour
Genre	Conference Paper
Type	Text
FileFormat	application/pdf
Language	eng
Date Available	2009-11-25
Provider	Vancouver : University of British Columbia Library
Rights	Attribution-NonCommercial-NoDerivatives 4.0 International
DOI	10.14288/1.0103678
URI	http://hdl.handle.net/2429/15808
Affiliation	Applied Science, Faculty of Nursing, School of
Peer Review Status	Unreviewed
Scholarly Level	Faculty Researcher
Rights URI	http://creativecommons.org/licenses/by-nc-nd/4.0/
AggregatedSourceRepository	DSpace

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Know Your Rights with Research: A New Approach to Knowledge Exchange with Youth Cathy Chabot, Research Manager Jean Shoveller, Principal Investigator Joy Johnson, Co-Investigator Jennifer Reade, Research Coordinator Our interdisciplinary research team examines the ways in which gender, culture, and place help to shape the social relations and structural conditions that affect the sexual health of young people, particularly those living in northern, rural, and remote communities. Gender Norms Introduction „ How can these issues become opportunities for knowledge exchange? „ What are some of the ethical issues encountered in participatory research with youth? „ Develop new ways to meaningfully engage in a social determinants of health analysis of youth sexual health outcomes. „ Most research that purports to use participatory approaches focuses on “consulting with” and “informing” youth about their sexual health needs. „ Participatory action research (PAR) “is a collaborative approach in which those typically ‘studied’ are involved as decision-makers and co-researchers in some or all stages of the research.” (Cahill, 2007) „ Our study challenged existing research models and addresses the under-explored area of the social determinants of sexual health by engaging youth as co-researchers. Developing New Research Approaches to Engage Youth Youth Co-Researchers’ Training „ YCRs received training in research methods including: „ Research ethics „ Recruitment „ Interviewing techniques „ Participant observation „ Reflexivity „ Data analysis „ Youth sexual health issues Aims & Methods „ What were the existing policies regarding how academic research with youth is conducted? „ What were youth’s previous experiences with research re: consent procedures, research methods, and engagement in the research process? „ In-depth interviews were conducted with: „ 9 community stakeholders „ 20 youth „ Many youth did not understand the purpose of previous studies they had participated in. „ 7 out of 20 reported not being asked to give informed consent. „ Many believed their participation in school-based research was compulsory. „ Youth rarely interacted with researchers outside of the study setting. „ Many did not know how data would be used or stored. „ Youth rarely could give feedback to researchers and did not know how to access study findings. Findings Know Your Rights with Research Card Implications for Knowledge Exchange „ Educate youth about the informed consent process to mitigate risk. „ Demonstrate respect for youth’s developing sense of autonomy by allowing them to consent on their own behalf. „ This may empower youth and increase their involvement in the research process. „ This may encourage marginalized youth’s participation and allow researchers’ to obtain a more diverse sample. Our Research Team Stephenie Berlinger (YCR), Jean Shoveller (PI) & Jennifer Reade (RC) Jesse Ogen (YCR) Joy Johnson & Ken Prkachin (Co-Invs)

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