Disparities relating to race and ethnicity have been strongly linked to a variety of health inequities for youth [1]. Relating to the broader Canadian context, scholars suggest that an understanding of HIV-vulnerability in Indigenous peoples must begin with understanding the social determinants that are linked to the historical legacy of European colonization that has contributed to their suffering and unjust circumstances [2]. Indigenous youth are currently overrepresented in the HIV positive population [3]. HIV diagnosis during adolescence and young adulthood occurs at a time when individuals are forming their social identities and new relationships. It is also a time when young people are contemplating their futures. These factors warrant attention on the impact of HIV diagnosis on youth and their health and lives. However, minimal research exists on understanding Indigenous young people’s experiences of living with HIV during the critical period (i.e., the HIV diagnosis and early years following the HIV diagnosis). Indigenous youth also often must face an HIV diagnosis alone due to fear of stigma and discrimination, and are less likely to access services [4, 5]. It is clear that young Indigenous people living with HIV need to have their voices heard and be involved in identifying solutions to overcoming health and social disparities experienced by them. Furthermore, recent studies point to the need to understand the social determinants as they relate specifically to Indigenous youth [6, 7].

Persons of Indigenous descent (Métis, Inuit, and First Nations) are currently overrepresented in the HIV epidemic in Canada [3, 8]. While Indigenous people account for a mere 4.3% of the population [9], an estimated 6850 Indigenous people were living with HIV in 2014 (up 12.1% from 2011 estimates); that is, 9.1% of all HIV infections across Canada [8]. In the same year, an estimated 278 new HIV infections (10.8% of all infections) were reported among Canadian Indigenous peoples – a slight (1.7%) decrease from the figures estimated for 2011 estimate (250 to 450). This decrease may indicate a levelling-off in terms of overall representation of Indigenous peoples with regards to all new HIV infections. Indigenous people in Canada are also infected with HIV at a younger age than those who are not Indigenous [3]. Between 1998 to 2012, one-third (32.3%) of positive HIV test reports among the Indigenous were youth between 15 to 29 years of age, a percentage that well exceeds that of other ethnicities (20.6%). 72.2% of these youth identified as First Nation, 8.7% identified as Métis, 0.7% identified as Inuit, and 18.4% identified as “Indigenous unspecified.” Of the 950 reported cases of infection in Indigenous youth (15–29) in Canada between 1998 and 2012, 63% of the cases were due to intravenous drug use (IDU) [3]. 26.4% were due to heterosexual contact, of which 6.7% was men who have sex with men (MSM) and 3.6% MSM/IDU [3]. However, other social determinants can impact young Indigenous people. The broader social determinants that have been found to have health effects on Canadians include ‘Aboriginal status,’ disability, early life, education, employment and working conditions, food insecurity, health services, gender, housing, income and income distribution, race, social exclusion, social safety net, and unemployment and job history [10].

Negin et al. conducted a systematic review of the literature relating to HIV infection among Indigenous peoples in Canada, Australia, New Zealand, and the United States and found that domestic violence, stigma and discrimination, and injection drug use were the social determinants that were particularly important [7]. Many Indigenous youth including those with HIV are experiencing the trans-generational effects of colonialism, including the Residential School System, the ‘Sixties Scoop,’ and the on-going overrepresentation of Indigenous children in the child welfare system [11]. Residential Schools in Canada started in the 1870s and was a system of government funded, church-run schools that “were set up to eliminate parental involvement in the intellectual, cultural, and spiritual development of Aboriginal children.” The last Residential School closed in 1996 [12]. The ‘Sixties Scoop’ is a term coined by Patrick Johnson in the 1983 report Native Children and the Child Welfare System, which refers to the “mass removal of Aboriginal children from their families into the child welfare system,” which was particularly pronounced in the 1960s. Children were typically placed with middle-class Euro-Canadians [13].

The trans-generational effects of colonialism have contributed to the separation of families and the erosion of culture, in turn producing health and social disparities [14]. As is explained by Riediger (in McDonald), the Residential School System that removed Indigenous children from their families and tribal communities attacked “individual and cultural identity, and left alcoholism, suicide, violence, and ongoing sexual abuse in their wake” [15]. Kirmayer, Brass, and Valaskakis further note that the displacement or appropriation of land undermined Indigenous peoples’ spiritual connection to their environment, and has led to a fragmentation of identity and alienation from the world [16]. Finally, the historical trauma that has devastated many Indigenous communities appears to have resulted in a sort of “soul wounding” that is often transmitted across generations through transactions between parents and their children and social disadvantage [17, 18]. These realities in combination with several other aspects of the colonial encounter have eroded Indigenous “cultural buffers,” which have the potential to mediate youth’s vulnerability to negative health outcomes such as HIV infection [18].

Furthermore, given that adjusting to the diagnosis and learning to cope has serious health and social ramifications, research that details the experiences and needs of Indigenous people who were infected with HIV in their youth is critically needed. This article investigates the lived experiences of Indigenous people who became infected with HIV between the ages of 15 and 29. The research took place in Winnipeg, a mid-Western Canadian city with a small and steadily rising population of 750,000 people [19]. The city also has the highest proportion of Indigenous peoples for any Canadian city. Although limited in breadth and scope, the literature on the social determinants relating to HIV infection and health following diagnosis in young Indigenous people in Canada has centered on the Western (British Columbia) and Eastern (Ontario, Quebec) provinces, often to the neglect of Prairie Provinces such as Manitoba. HIV epidemiology on the Prairies and in Manitoba retains some important distinctive features. Hence, capturing the Manitoba perspective can add to and enrich existing research from other parts of Canada thereby contributing to a national model of young Indigenous people’s experiences of living with HIV/AIDS. Research situated in Manitoba is especially important because in 2015, 22.8% of new HIV infections were among Indigenous peoples [20].

Our study highlights the intersectional social determinants of HIV infection and life beyond diagnosis for young Indigenous people in Manitoba, Canada. The stories that the participants shared revealed their deeply interconnected social worlds, and how social determinants were connected throughout various stages of their lives. Such stages included childhood, adolescence and young adulthood (the time of HIV infection), and later adulthood for older participants. The participants who shared their stories and lived experiences with us and were often highly capable of understanding the behaviours that put their health at risk [35], as well as the intersectional nature of the social determinants of health [36]. Through an intracategorial approach to understanding intersectionality and listening to the stories of young people who had become infected with HIV in their youth, it was possible to account for the multiple interconnected social determinants that were associated with HIV infection and overall health trajectory prior to and following HIV diagnosis [22, 23, 26].

Social determinants like intimate partner violence and other types of abuse were associated with the participant’s stories about the years leading up to and early years following diagnosis. These interrelated factors have been linked to the burden of HIV infection among Indigenous youth in areas across Canada, and in particular have affected young Indigenous women [37–40]. Studies outside of Canada have also revealed a strong connection between HIV infection in young women and partner violence [41–43]. It is estimated that nearly half (47.3%) of all positive HIV test reports of Indigenous people in Canada were female between 1998 and 2012, compared to the 31.6% among their non-Indigenous counterparts [3]. In 2015, Manitoba continued to have the highest proportion of new cases of Indigenous female HIV infection in Canada [20]. Young Indigenous women appear to be more susceptible to HIV infection than their male counterparts due to sex and drug-related harm. Parallel to our findings, Mill found that female Indigenous youth from across Canada tended to associate the sexual abuse they often endured in early childhood with risky sexual behavior such as early sexual contact, unsafe sex, and prostitution [37]. Maté, former physician of Vancouver’s beleaguered Downtown Eastside, also observed that the effects of sexual abuse often led Indigenous women to serious forms (intravenous) of drug use in their struggle to overcome suffering [44]. Work by Stevens et al. revealed that an HIV diagnosis was experienced as a ‘traumatic event’ in women that caused a rift in their sense of identity and resulted in them facing unrelenting misery, escalated drug and alcohol use, depression, suicidal behaviours, transmission risks, destabilization of relationships, and lowered income and shelter during the early years [45].

In one study among low-income women in Baltimore, there was a “cumulative and syndromatic relationship among commonly co-occurring vulnerabilities (homelessness, incarceration, low-income, residential transition) in association with HIV-related risk behaviors” [46]. This was the case for the participants, both male and female, who were engaged through this study. Access to food and housing was especially important for the participants, some even making direct connections between their ability to manage their illness with medications (ART) and their ability to have food (especially healthy food) and housing (especially that which was affordable and sustainable). Work by other scholars has also determined the impact of affordable and sustainable housing on the health outcomes [47, 48], including the material, meaningful and spatial dimensions of housing on both physical and mental health [49]. Furthermore, German and Latkin found that “social policies and programs aiming to enhance housing and overall social stability are likely to be beneficial for HIV prevention” [46] (p. 168). Study participants also connected housing with food (i.e. having a place to cook) and talked about their overall need to access foods, which also connected them with health (HIV) programs and services that were offered in the same places as food banks. A community food security assessment by Zurba et al. in Manitoba’s main urban centre (Winnipeg) found that access to healthy and culturally appropriate foods was connected to reducing drug use and other social determinants of health, and was important for overall emotional well-being [50]. Education was also an important factor in HIV prevention and well-being following diagnosis. Reducing the stigma around HIV and providing thorough information in culturally appropriate formats will be important for affecting the health trajectories of Indigenous youth following diagnosis.

Many participants were aware of the effects of colonial systems on their health trajectories. The strong connections existing between social determinants of HIV and health following diagnosis run parallel with those associated with the Residential School System, the ‘Sixties Scoop,’ and the on-going overrepresentation of Indigenous children in the child welfare system [51]. Negin et al. emphasised the effects of colonization and marginalization on HIV-related behaviors, especially domestic violence, injection drug use, and stigma and discrimination [7]. Several Indigenous scholars agree that the trans-generational trauma that is created by the breaking apart of families will need to be addressed through various forms of action within the health, child welfare and other institutions if Indigenous peoples in Canada (and other places with similar colonial histories) are to have improved health outcomes [52–56]. Many also argue that institutional transformation cannot only come through simple changes in policy [57], but will require pathways within institutions to make way for Indigenous resurgence through nation-building, reconnection to homelands, integration of culture and spirituality, leadership, and decolonized forms of decision-making [56, 58–60]. Similarly, a qualitative study by Larkin et al. found that young Indigenous people (from Ontario) were more aware of structural inequities that contribute to HIV risk than those who were not Indigenous [2]. The participants of this study also understood the interconnections between social determinants, which were often multiple, with some determinants being deeply entangled and more pronounced during different stages of life, from birth through early adulthood.

Our study considered the intersecting social determinants of HIV infection and health following diagnosis from the perspectives of Indigenous people who had become infected with HIV as youth. Study participants were often able to identify the social determinants and how they were interconnected throughout different stages in their lives. The findings highlight the need for policies and programs that are broadly focused, addressing multiple social determinants together. Overall, there needs to be more emphasis on the multiple social determinants in the life situations of all Indigenous youth. Reducing the health and social disparities in Indigenous youth is key to reducing the number of young Indigenous people diagnosed with HIV. The findings also shed light on the importance of listening to young Indigenous people who have experienced HIV diagnosis and life following diagnosis. By situating young Indigenous people’s perspectives at the centre of investigation, a deeper understanding of how to best meet their needs may be advanced and will contribute to the development of meaningful and culturally-sensitive services and programs for young Indigenous people living with HIV.