Beyond the bottle:Alcohol Use by Aboriginal persons living with HIV and its

association with access to care and treatmentR. Masching1, C.A. Dell2, J.P. Egan3, N. Gros-Louis McHugh4, D. Lee5, T. Prentice6, L. Storm7, C.

Thomas8, A. McGee9, H. Dale-Harris9

1Canadian Aboriginal AIDS Network, Research and Policy Unit, Dartmouth, NS, Canada, 2University of Saskatchewan, Saskatoon, SK, 3University of British Columbia, Vancouver, BC, 4Commission de la Santé et des Services Sociaux des Premières Nations du Québec et du

Labrador, Quebec City, QC, 5Community Member, Prince George, BC, 6University of Ottawa, Ottawa, ON, 7Community Member, Vancouver, BC, 8Elder, Ottawa, ON, 9Drawing Insight, Ottawa, ON.

MethodsCollectively our team engaged in research design, data collection and analysis. Using a mixed methods approach, APHAs and Service Providers (SPs) in various settings across Canada participated in quantitative surveys and a subset of follow up in-depth interviews.

Ethics and OCAPThe principles of Ownership, Control, Access, and Possession (OCAP) guided this study to sustain a balance between community approaches to information gathering and sharing and academic processes premised upon rigour and validity.

In the project, the spirit and practice of the OCAP principles were realized by: •engaging community in identifying and developing the research topic, questions and methodology•developing a research team that balanced community and academic expertise;•developing and formally agreeing upon a shared team Principles of Research Collaboration Agreement; •abiding by ethical research protocols as articulated in the Canadian Tri-Council Policy Statement 2; •prioritizing capacity building with peer researchers, including but not limited to: mentoring participation in all stages of the research process, and training for specific skills in the research process such as ethics and interviewing; •privileging and learning from APHA knowledge in the research process; •securely storing all research materials at the community-based organization leading the project;•inviting an Elder to join the team to bring ceremony, wisdom and guidance to the team and the research process; and•using a shared decision-making model that made room for multiple voices and viewpoints.

Quantitative Surveys

N = 225

116 APHAs, 109 SPs

41 questions/ 19 pages Available in English and French

Quantitative Surveys

N = 225

116 APHAs, 109 SPs

41 questions/ 19 pages Available in English and French

Qualitative Interviews

N = 48

25 APHAs, 23 SPs

Open ended questions Avg. of 45 minutes

Qualitative Interviews

N = 48

25 APHAs, 23 SPs

Open ended questions Avg. of 45 minutes

BackgroundPrevious research highlighted the absence of knowledge regarding the impact of real or perceived use of alcohol in the lives of Aboriginal people living with HIV & AIDS (APHAs) in Canada. Anecdotally we had reports of APHAs being denied care for being drunk when they were sober.

The purpose of this study was to determine the association between alcohol use and access to services from the perspectives of Aboriginal persons living with HIV & AIDS and Service Providers (SPs).

Our research team is comprised of scholars, community-based researchers and service delivery people and is guided by First Nation Elder Cliff Thomas.

Sample DemographicsOur two study samples represent Aboriginal People living with HIV & AIDS (APHAs) and Service Providers (SPs) across Canada.

Scene from Video: Peer Researcher EngagementScene from Video: Peer Researcher Engagement

LimitationsThe majority of the surveys were distributed by AIDS service organizations, and at three AIDS-related conferences, therefore APHA and SP respondents are likely to be connected with AIDS related resources in their communities and work places. Our sample may not capture APHAs who are not accessing these resources and SPs who do not regularly provide care.

Our findings may be more troubling in areas of concern such as indications of discrimination and reduced access to care for those who are less engaged than those in our sample population.

Similarly, areas of positive findings may have slightly increased credibility as they may represent services and/or approaches that are applied more frequently within HIV & AIDS care.

Conclusions• Alcohol use and perceived use continues to impact directly upon access to and

delivery of care, treatment and support services. • Services Provider’s misconceptions regarding alcohol use require greater attention

and resource development.• Ongoing, discriminatory practices and attitudes by Service Providers demand a

constructive and direct response. • Service Provider and APHA concerns regarding safety and/or feeling safe, in often

crowded community-based services, identifies a significant barrier to effective service.

• Clear policy guidelines, consistent with Service Provider’s practice and principles, will improve quality of service delivery.

Presented at AIDS 2012 – Washington, D.C., USA

Poster # WEPE598

Funding for this project was provided by: The Canadian Institutes of Health Research, Institute of Infection and Immunity through the HIV/AIDS Community-based Research Initiative.

DedicationTo the APHAs and those involved in the Aboriginal HIV & AIDS movement who have passed on to the spirit world and those who continue to contribute. To the individuals who shared and all who helped to make those connections. To the Creator.

AcknowledgmentsInstitutional support for this project was provided by:Canadian Aboriginal AIDS Network, CIHR Canadian HIV Trials Network, Commission de la santé et des services sociaux des Premières Nations du Québec et du Labrador (First Nations of Quebec and Labrador Health and Social Services Commission), University of British Columbia and University of Saskatchewan

The research team would like to acknowledge the expertise, collaboration, and hard work of the people and organizations who contributed to the project across Canada. Without them this research would not have been possible.

• 43% identified as male, 34% female and the remainder two-spirited

• 81% live in an urban centre, defined as a population of more than 10,000

• 51% felt they had treatment and care in their home city, 19% moved to access it and 11% are considering moving

• 71% identified as female, 20% male and 8% as 2 -Spirited.

• 43% of their places of employment are Aboriginal service organizations• of the remainder, 70% offer targeted

services for Aboriginal clients

Sharing Results and Knowledge TranslationEthical guidelines prioritize sharing Indigenous research results within the community first!

Preliminary results have been shared throughout the project in community forums and academic conferences. A final report will highlight major findings and a technical report will be prepared as an additional resource including data collection tools and tables of statistical analysis. To enhance dissemination, a video featuring Peer Researchers’ reflections on findings and research engagement will also be released