Beyond the bottle: Alcohol Use by Aboriginal persons living with HIV and its association with access to care and treatment R. Masching 1, C.A. Dell 2, J.P. Egan 3, N. Gros-Louis McHugh 4, D. Lee 5, T. Prentice 6, L. Storm 7, C. Thomas 8, A. McGee 9, H. Dale-Harris 9 1 Canadian Aboriginal AIDS Network, Research and Policy Unit, Dartmouth, NS, Canada, 2 University of Saskatchewan, Saskatoon, SK, 3 University of British Columbia, Vancouver, BC, 4 Commission de la Santé et des Services Sociaux des Premières Nations du Québec et du Labrador, Quebec City, QC, 5 Community Member, Prince George, BC, 6 University of Ottawa, Ottawa, ON, 7 Community Member, Vancouver, BC, 8 Elder, Ottawa, ON, 9 Drawing Insight, Ottawa, ON. Methods Collectively 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 OCAP The 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 Background Previous 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 Demographics Our two study samples represent Aboriginal People living with HIV & AIDS (APHAs) and Service Providers (SPs) across Canada. Thirty-three (33%) of APHAs reported to never have or to no longer drink alcohol Persons who speak an Aboriginal language were more likely to report having been denied in-patient care when they were not drinking. Service providers indicated an extremely high level of real or perceived alcohol use among their Aboriginal clients. Possible explanations for misperceived drunkenness were: deeply embedded stigma and stereotypes of Aboriginal people, mistrust and linkages to smell, behavior and heath conditions in particular related to diabetes. Service providers emphasized safety for themselves and other clients as a primary motive for implementing policies such as denying a client service Strong examples of positive service provision were documented than expected. Low levels of denial to care in settings that historically had been rated as challenging to access in the context of living with HIV & AIDS. Harm reduction based policies that allowed for responses directly proportional to the person’s behaviour were most often described in practice. Scene from Video: Peer Researcher Engagement Limitations The 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. Dedication To 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. Acknowledgments Institutional 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. Key Results 9 central themes: Impact of alcohol use Misperceptions of drunkenness The role of alcohol in becoming positive Using alcohol and being HIV positive Alcohol and HIV treatment Experiences with service providers Service provider experiences Service provider organization practices Discrimination Twenty-two percent (22%) of APHAs reported ever being denied care for drinking alcohol when sober in primary care settings. APHAs and SPs reported that alcohol use reduced harm reduction behaviour such as using protection during sex and clean needles for IV drug use. Non consensual sex was linked to excessive alcohol intake. SPs varied in their opinions of effective HIV service provision among APHAs who are actively consuming alcohol, with the majority supporting it. Over 35% of SPs were uncomfortable and/or unwilling to provide services to clients perceived to be under the influence of alcohol. Few SPs knew of formal policies within their organizations to guide service provision when a client is perceived to have been drinking. The most consistent sources of discrimination and denial of service occurred in social service settings. 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 Translation Ethical 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