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Canadian Journal of Aboriginal Community-Based HIV/AIDS Research
Volume 1, Summer 2006
THE CANADIAN ABORIGINAL AIDS NETWORK (CAAN)
The Canadian Aboriginal AIDS Network is a national, not-for profit organization:
• Established in 1997
• Represents over 200 member organizations and individuals
• Governed by a National thirteen member Board of Directors
• A four-member Executive Board of Directors
• Provides a National forum for members to express needs and concerns
• Ensures access to HIV/AIDS-related services through advocacy
• Provides relevant, accurate and up-to-date HIV/AIDS information
As a key national voice of a collection of individuals, organizations and provincial/territorial associations,
CAAN provides leadership, support and advocacy for Aboriginal people living with and affected by HIV/AIDS.
CAAN faces the challenges created by HIV/AIDS in a spirit of wholeness and healing that promotes
empowerment and inclusion, and honours the cultural traditions, uniqueness and diversity of all First Nations,
Inuit and Métis people, regardless of where they reside.
The Canadian Aboriginal AIDS Network would like to thank the project steering committee members: Margaret
Akan, Randy Jackson, Renee Masching, Jann Ticknor, and Art Zoccole for their direction and support throughout
the project. In addition, contributions from Yvon Allard and Dina Epale helped move this project forward.
Production of this document has been made possible through a financial contribution from the Canadian Institutes
of Health Research (CIHR). The views expressed herein do not necessarily represent the views of CIHR.
ISBN No. 1-894624-48-3
ISSN No. 1912-0958
Canadian Aboriginal AIDS Network 602-251 Bank Street Ottawa, Ontario, K2P 1X3 Telephone: 1-613-567-1817 Toll-Free: 1-888-285-2226 Internet: www.caan.ca Email: email@example.com Summer 2006
Canadian Journal of Aboriginal Community-based HIV/AIDS Research (CJACBR)
Published by the Canadian Aboriginal AIDS Network (CAAN)
Editorial Policies: Purpose and Audience
The CJACBR is an annual on-line and paper journal published by CAAN as a service to its members and anyone
with an interest in Aboriginal Community-Based Research.
The CJACBR is a peer-reviewed journal which welcomes contributions for any author. Priority however, may be
given to an author of Aboriginal ancestry/background, should manuscripts of comparable quality be available.
First consideration will be given to innovative articles covering areas identified as HIV/AIDS research-intensive
which demonstrates the use of Aboriginal Community-Based Research (ACBR) methods or philosophy.
Articles published in CJACBR are directed toward several audiences. The primary audience is Aboriginal
HIV/AIDS service organizations and Aboriginal people living with HIV/AIDS (APHAs). The CJACBR
secondary audiences include community leaders, policy and decision-makers, and anyone with an interest in
HIV/AIDS, particularly within Aboriginal populations and communities.
CAAN would like to acknowledge the members of the Editorial Peer Review Board. Each member contributed to
the development of review policies in addition to contributing to the peer review process.
Editorial Peer Review Board members were:
Melanie Rivers Additional Reviewers: Additional contributions were offered by Blye Frank, Roda Grey and Marlene Brant Castellano. CAAN Editors:
Randy Jackson, MSW – Research and Policy Manager Email: firstname.lastname@example.org Renée Masching, MSW – Community-based Research Facilitator (East) E-mail: email@example.com
The Canadian Aboriginal AIDS Network 602-251 Bank Street, Ottawa ON, K2P 1X3 Phone: (613) 567 – 1817 Fax: (613) 567-4652 Toll Free: 1-888-285-2226 Journal Layout: Allegra Print & Imaging, 1069 Bank Street, Ottawa
Table of Contents
Introduction . 1
Section 1 – Dissemination of Results Findings . 3
Life Experiences of Aboriginal Women Living with HIV/AIDS . 5 Kim McKay-McNabb
“River of Life, Rapids of Change”: Understanding HIV Vulnerability among Two-Spirit Youth
who Migrate to Toronto . 17 Doris O’Brien Teengs & Robb Travers
Section 2 – Emerging Issues in Aboriginal Community-based HIV/AIDS Research (ACBR) …. 29
Knowledge Translation and Aboriginal HIV/AIDS Research: Methods at the Margins . 31 Renee Masching, Yvon Allard, and Tracey Prentice
Section 3 – Ownership, Control, Access, and Possession . 45
Ethics in Aboriginal Research: Comments on Paradigms, Process and Two Worlds . 47 Mike Patterson, Randy Jackson, and Nancy Edwards
Section 4 – Professional/Personal Development . 63
Negotiating Partnership and Ownership in Community-Based Research: Lessons from a Needle
Exchange in Montréal . 65 Viviane Namaste and Pascal Jauffret
Call for Papers …………………………………………………………………………………. 75
In November 2003, it had become clear that there were few opportunities specific to the Aboriginal HIV/AIDS
community to implement the dissemination plans of the research process within which Aboriginal stakeholders
had been involved. For this reason, based on a review of the literature and existing resources, the Canadian
Aboriginal AIDS Network (CAAN) partnered with community stakeholders and applied for project funding. The
overall goal of the project was to enhance dissemination of Aboriginal community-based HIV/AIDS research
using a variety of methods.
CAAN recognized that in recent years there had been a notable increase in the scientific examination of the HIV
epidemic as it impacts the Aboriginal community. However, while we knew much work was being done, there
was not a notable or similar increase in the number of research studies presented in academic journals or at HIV/
AIDS academic conferences that highlighted the work of Aboriginal community-based researchers. A review of
the literature revealed that virtually no academic journals at this time provide a dedicated venue specific to
Canadian Aboriginal community-based HIV/AIDS research.
Almost 3 years later, the inaugural issue of the Canadian Journal of Aboriginal Community-Based HIV/AIDS
Research (CJACBR) is complete. The CJACBR has evolved from a desire to assist in the dissemination of
research findings into a vehicle to promote and encourage Aboriginal community-based HIV/AIDS research.
Great effort has been put into the development of policies to guide journal submissions and peer review processes.
Authors from around the world submitted manuscripts and the Editorial Peer Review Board offered carefully
considered feedback for each article. The outcome is a journal that strives to balance academic excellence with
community relevance in an interesting and engaging format.
The articles included in this inaugural issue cover a variety of topics. Research findings are presented from two
studies that highlight the needs of two spirit youth and women living with or affected by HIV/AIDS. The
emerging research concept of Knowledge Translation is explored and presented in the context of Aboriginal
HIV/AIDS research. The Principles of Ownership, Control, Access and Possession (OCAP) are linked with
research ethics in a practical discussion about academic and community partnerships. The importance of
negotiating partnerships is further outlined in the final article which draws on lessons learned to demonstrate the
importance of clearly agreeing upon the boundaries of the research process before the work begins.
This is a new medium for sharing insights regarding research processes within the Aboriginal HIV/AIDS
movement and a proactive step forward. The publication of this journal fills a significant void and has created
opportunities to highlight excellent community-based research. This journal is a foundation to continue sharing
ideas, enhance, support and complement research initiatives in all regions and sectors so that Aboriginal people
can continue to find innovative ways of taking control of a disease that has taken too much from us.
Canadian Aboriginal AIDS Network
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