Building Bridges: Describing a Process for Indigenous Engagement in Epidemiology.

BACKGROUND: Processes for epidemiology embedded with Indigenous methodology are needed. Building Bridges was developed to engage Indigenous peoples in epidemiology to address health issues relevant to them. OBJECTIVES: We describe our process for meaningfully engaging Indigenous leaders and peoples living with human immunodeficiency virus (HIV) in epidemiology research. METHODS: As a community-based research (CBR) project, Indigenous methodologies and leadership ensured the quality and relevance of findings. Study phases included 1) advisory board formation, 2) recruitment, 3) research question identification, 4) data analysis from the Canadian HIV Observational Cohort (CANOC) collaboration, 5) data interpretation and contextualization, and 6) knowledge translation and exchange. LESSONS LEARNED: Support and guidance from Indigenous team members, Spiritual Leaders and Elders along with meaningful relationships with allied academic researchers were pivotal. Expertise and lived experiences in Indigenous culture, HIV, epidemiology and services enabled multidirectional learning. CONCLUSIONS: Building Bridges' success hinged on ongoing co-learning and engagement of Indigenous peoples, service providers and researchers.

"I Guess I Shouldn't Come Back Here": Racism and Discrimination as a Barrier to Accessing Health and Social Services for Urban Métis Women in Toronto, Canada.

Racism serves as a major barrier in access to health and social services, leading to absent, delayed, and/or avoidance of treatment. Métis Peoples experience barriers to accessing both Indigenous-specific and mainstream services yet are often left out of discourses surrounding racism and service access. Racism and discrimination experienced by Métis people is rooted within a deep history of assimilative and racist colonial policies. The objective of this research was to create space for the all too often unacknowledged voices of Métis Peoples by engaging with the traditional community health experts, Métis women. This research aimed to learn from Métis women's experiences to build an understanding on steps toward filling the health service gap. Nested within a longitudinal cohort study, this research employed a conversational method with urban Métis women in Toronto, Canada. In this paper, we share the experiences of racism and discrimination faced by urban Métis women when accessing and working within health and social services. Métis women (n = 11) experience racial discrimination such as witnessing, absorbing, and facing racism in mainstream service settings, while experiencing lateral violence and discrimination in Indigenous-specific services. This research highlights the need for reframing conversations around race, identity, health services, and the urban Métis community.

Increased mortality among Indigenous persons in a multisite cohort of people living with HIV in Canada.

OBJECTIVE: Compare all-cause mortality between Indigenous participants and participants of other ethnicities living with HIV initiating combination antiretroviral therapy (cART) in an interprovincial multi-site cohort. METHODS: The Canadian Observational Cohort is a collaboration of 8 cohorts of treatment-naïve persons with HIV initiating cART after January 1, 2000. Participants were followed from the cART initiation date until death or last viral load (VL) test date on or before December 31, 2012. Cox proportional hazard models were used to estimate the effect of ethnicity on time until death after adjusting for age, gender, injection drug use, being a man who has sex with men, hepatitis C, province of origin, baseline VL and CD4 count, year of cART initiation and class of antiretroviral medication. RESULTS: The study sample consisted of 7080 participants (497 Indigenous, 2471 Caucasian, 787 African/Caribbean/Black (ACB), 629 other, and 2696 unknown ethnicity). Most Indigenous persons were from British Columbia (BC) (83%), with smaller numbers from Ontario (13%) and Québec (4%). During the study period, 714 (10%) participants died. The five-year survival probability was lower for Indigenous persons (0.77) than for Caucasian (0.94), ACB (0.98), other ethnicities (0.96) and unknown ethnicities (0.85) (p < 0.0001). In an adjusted proportional hazard model for which missing data were imputed, Indigenous persons were more likely to die than Caucasian participants (hazard ratio = 2.69, p < 0.0001). CONCLUSION: The mortality rate for Indigenous persons was higher than for other ethnicities and is largely reflective of the BC population. Addressing treatment challenges and identifying HIV- and non-HIV-related causes for mortality among Indigenous persons is required to optimize their clinical management.

A comparison of virological suppression and rebound between Indigenous and non-Indigenous persons initiating combination antiretroviral therapy in a multisite cohort of individuals living with HIV in Canada.

BACKGROUND: This study compared time to virological suppression and rebound between Indigenous and non-Indigenous individuals living with HIV in Canada initiating combination antiretroviral therapy (cART). METHODS: Data were from the Canadian Observational Cohort collaboration; eight studies of treatment-naive persons with HIV initiating cART after 1/1/2000. Fine and Gray models were used to estimate the effect of ethnicity on time to virological suppression (two consecutive viral loads [VLs] <50 copies/ml at least 3 months apart) after adjusting for the competing risk of death and time until virological rebound (two consecutive VLs >200 copies/ml at least 3 months apart) following suppression. RESULTS: Among 7,080 participants were 497 Indigenous persons of whom 413 (83%) were from British Columbia. The cumulative incidence of suppression 1 year after cART initiation was 54% for Indigenous persons, 77% for Caucasian and 80% for African, Caribbean or Black (ACB) persons. The cumulative incidence of rebound 1 year after suppression was 13% for Indigenous persons, 6% for Caucasian and 7% for ACB persons. Indigenous persons were less likely to achieve suppression than Caucasian participants (aHR=0.58, 95% CI 0.50, 0.68), but not more likely to experience rebound (aHR=1.03, 95% CI 0.84, 1.27) after adjusting for age, gender, injection drug use, men having sex with men status, province of residence, baseline VL and CD4+ T-cell count, antiretroviral class and year of cART initiation. CONCLUSIONS: Lower suppression rates among Indigenous persons suggest a need for targeted interventions to improve HIV health outcomes during the first year of treatment when suppression is usually achieved.

The Indigenous Red Ribbon Storytelling Study: What does it mean for Indigenous peoples living with HIV and a substance use disorder to access antiretroviral therapy in Saskatchewan?

Indigenous peoples living with HIV are less likely than non-Indigenous peoples living with HIV to access antiretroviral therapy; however, there is not enough contextual information surrounding this issue. The Indigenous Red Ribbon Storytelling Study was conducted in part to examine how Indigenous peoples living with HIV construct and understand their experiences accessing antiretroviral therapy. Our study design was critical Indigenous qualitative research, using the Behavioral Model of Health Services Use and community-based participatory research approaches. The study was conducted in partnership with Indigenous and non-Indigenous organizations. Study participants were adults from two Canadian cities. The study methods included 20 individual and two Indigenous sharing circle interviews, six participant observation sessions, a short survey and thematic analysis. Accessing antiretroviral therapy within the context of living with a substance use disorder was an overarching theme. Indigenous peoples living with HIV felt they had to choose between living with their active substance use disorder and accessing antiretroviral therapy. They felt misunderstood as a person living with a substance use disorder and often felt coerced into using antiretroviral therapy. Despite these challenges, they persevered as Indigenous peoples living with HIV and a substance use disorder. Further research on antiretroviral therapy access among Indigenous peoples living with HIV and a substance use disorder, particularly from the perspective of health service providers, is needed.

Getting the Canadian HIV epidemic to zero: Valuing indigenous cultures through holistic research.

This paper was orally presented at the Canadian Aboriginal AIDS Network, Wise Practices IV - Community-Based Research Gathering on September 25, 2013 in Saskatoon, Saskatchewan, Canada as the LaVerne Monette Memorial Lecture. The objectives of this paper are: (1) to describe the HIV epidemic among Aboriginal people living in Canada; and (2) to examine the value of incorporating indigenous cultures into research within the context of holistic research perspectives. The methodology used to address the objectives was an integrative review (i.e., structured review) of the literature. The major results of this review revealed that while Aboriginal people make up 3.8% of the Canadian population, they represent 12.2% of all new HIV infections in 2011. In 2011, a full 81% of newly diagnosed HIV cases in the Province of Saskatchewan were of Aboriginal ethnicity. Although there are diverse approaches to conducting research involving Aboriginal populations (e.g., critical social paradigm, indigenous research paradigm, and critical indigenous pedagogy vis-à-vis critical, indigenous qualitative research), each has its unique challenges. This paper concludes that Aboriginal people are overrepresented in the Canadian HIV epidemic and that valuing indigenous cultures through holistic research perspectives has the potential to get the Canadian HIV epidemic to zero.

Addressing HIV/AIDS among Aboriginal People using a Health Status, Health Determinants and Health Care Framework: A Literature Review and Conceptual Analysis.

OBJECTIVES: (1) To describe the Human Immunodeficiency Virus (HIV) infection among Aboriginal populations using a mixed methods approach (i.e. quantitative and qualitative methods); (2) to examine the individual-level and community-level relationships between HIV/AIDS, health determinants, and health care (e.g. diagnosis, access to treatment and health services planning); and (3) to explore innovative solutions to address HIV/AIDS among Aboriginal populations based upon research and infrastructure (e.g. partnerships, data sources and management, health indicators and culture) and policy (i.e. self-determination of Aboriginal Peoples). METHODS: Literature review and conceptual analysis using a health status, health determinants and health care framework. RESULTS: In comparison to non-Aboriginal persons, HIV infection is higher among Aboriginal persons, is more directly attributable to unique risk factors and socio-demographic characteristics, and yields more adverse health outcomes. Culture, poverty and self-determination are determinants of health for Aboriginal populations. Aboriginal people have inadequate primary care and, in particular, specialist care. It is necessary to include traditional Aboriginal approaches and culture when addressing Aboriginal health while understanding competing paradigms between modern medicine and Aboriginal traditions. CONCLUSION: There is a need for self-determination of Aboriginal Peoples in order to improve the health of Aboriginal communities and those living with HIV/AIDS. Research and policy affecting Aboriginal people should be of the highest quality and based upon Aboriginal community relevance and involvement.

The association of housing density, isolation and tuberculosis in Canadian First Nations communities.

BACKGROUND: First Nations communities in Canada experience disproportionately high levels of overcrowded housing, degree of isolation, and rates of tuberculosis (TB). A study was done to assess the association between housing density, isolation, and the occurrence of TB in First Nations communities. METHODS: Average persons per room (ppr), isolation type, average household income, population, and TB cases (1997-1999) at the community level were entered into a database. Tuberculosis notification rates and 95% CI were calculated for different strata of ppr and isolation. Two multiple logistic regression models were developed to examine the association of ppr, isolation, income, and population with the occurrence of >/=1, or >/=2, TB cases in a community. RESULTS: The rate was 18.9 per 100,000 (95% CI: 13.3-24.6) in communities with an average of 0.4-0.6 ppr, while communities with 1.0-1.2 ppr had a rate of 113.0 per 100,000 (95% CI: 95.4-130.5). An increase of 0.1 ppr in a community was associated with a 40% increase in risk of >/=2 TB cases occurring, while an increase of $10,000 in community household income was associated with 0.25 the risk, and being an isolated community increased risk by 2.5 times. CONCLUSIONS: This study shows a significant association between housing density, isolation, income levels, and TB. Overcrowded housing has the potential to increase exposure of susceptible individuals to infectious TB cases, and isolation from health services may increase the likelihood of TB.

Improving the health of future generations: the Canadian Institutes of Health Research Institute of Aboriginal Peoples' Health.

In the past and in the present, research studies and media reports have focused on pathology and dysfunction in aboriginal communities and have often failed to present a true and complete picture of the aboriginal experience. The Canadian Institutes of Health Research Institute of Aboriginal Peoples' Health is a national strategic research initiative led by both the aboriginal and research communities. This initiative aims to improve aboriginal health information, develop research capacity, better translate research into practice, and inform public health policy with the goal of improving the health of indigenous peoples.