Willingness of Older Canadians with HIV to Participate in HIV Cure Research Near and After the End of Life: A Mixed-Method Study.

HIV cure research requires interrogating latent HIV reservoirs in deep tissues, which necessitates autopsies to avoid risks to participants. An HIV autopsy biobank would facilitate this research, but such research raises ethical issues and requires participant engagement. This study explores the willingness to participate in HIV cure research at the end of life. Participants include Canadians with HIV [people with HIV (PWHIV)] aged 55 years or older. Following a mixed-method study design, all participants completed a phone or online survey, and a subset of participants participated in in-depth phone or videoconference interviews. We produced descriptive statistics of quantitative data and a thematic analysis of qualitative data. Barriers and facilitators were categorized under domains of the Theoretical Domains Framework. From April 2020 to August 2021, 37 participants completed the survey (mean age = 69.9 years old; mean duration of HIV infection = 28.5 years), including 15 interviewed participants. About three quarters of participants indicated being willing to participate in hypothetical medical studies toward the end of life (n = 30; 81.1%), in HIV biobanking (n = 30; 81.1%), and in a research autopsy (n = 28; 75.7%) to advance HIV cure research, mainly for altruistic benefits. The main perceived risks had to do with physical pain and confidentiality. Barriers and facilitators were distributed across five domains: social/professional role and identity, environmental context and resources, social influences, beliefs about consequences, and capabilities. Participants wanted more information about study objectives and procedures, possible accommodations with their last will, and rationale for studies or financial interests funding studies. Our results indicate that older PWHIV would be willing to participate in HIV cure research toward the end of life, HIV biobanking, and research autopsy. However, a dialogue should be initiated to inform participants thoroughly about HIV cure studies, address concerns, and accommodate their needs and preferences. Additional work is required, likely through increased community engagement, to address educational needs.

Key recommendations for developing a national action plan to advance the sexual and reproductive health and rights of women living with HIV in Canada.

Action on the World Health Organization Consolidated guideline on sexual and reproductive health and rights of women living with HIV requires evidence-based, equity-oriented, and regionally specific strategies centred on priorities of women living with HIV. Through community-academic partnership, we identified recommendations for developing a national action plan focused on enabling environments that shape sexual and reproductive health and rights by, with, and for women living with HIV in Canada. Between 2017 and 2019, leading Canadian women's HIV community, research, and clinical organizations partnered with the World Health Organization to convene a webinar series to describe the World Health Organization Consolidated guideline, define sexual and reproductive health and rights priorities in Canada, disseminate Canadian research and best practices in sexual and reproductive health and rights, and demonstrate the importance of community-academic partnerships and meaningful engagement of women living with HIV. Four webinar topics were pursued: (1) Trauma and Violence-Aware Care/Practice; (2) Supporting Safer HIV Disclosure; (3) Reproductive Health, Rights, and Justice; and (4) Resilience, Self-efficacy, and Peer Support. Subsequent in-person (2018) and online (2018-2021) consultation with > 130 key stakeholders further clarified priorities. Consultations yielded five cross-cutting key recommendations:1. Meaningfully engage women living with HIV across research, policy, and practice aimed at advancing sexual and reproductive health and rights by, with, and for all women.2. Centre Indigenous women's priorities, voices, and perspectives.3. Use language that is actively de-stigmatizing, inclusive, and reflective of women's strengths and experiences.4. Strengthen Knowledge Translation efforts to support access to and uptake of contemporary sexual and reproductive health and rights information for all stakeholders.5. Catalyse reciprocal relationships between evidence and action such that action is guided by research evidence, and research is guided by what is needed for effective action.Topic-specific sexual and reproductive health and rights recommendations were also identified. Guided by community engagement, recommendations for a national action plan on sexual and reproductive health and rights encourage Canada to enact global leadership by creating enabling environments for the health and healthcare of women living with HIV. Implementation is being pursued through consultations with provincial and national government representatives and policy-makers.

Social capital and HIV-serodiscordance: Disparities in access to personal and professional resources for HIV-positive and HIV-negative partners.

As people living with HIV are living longer lives, they have a correspondingly greater opportunity to enjoy long-term romantic and sexual partnerships, including with persons who do not live with HIV ("serodiscordant" relationships). In these dyads, asymmetries may emerge in access to social resources between partners. In this paper we examined how serodiscordant couples access informal (interpersonal, such as family and friends) and formal (practitioner, such as doctor or social worker) social resources for health. We recruited 540 participants in current serodiscordant relationships, working with 150 AIDS service organizations and HIV clinics across Canada from 2016 to 2018. Our findings demonstrate that partners with HIV have greater access to formal resources than their partners (through health care professionals, therapists/counselors/support workers), while both persons have similar access to resources through informal social relationships (family and friends). Furthermore, the findings indicated that HIV positive partners accessed more varied forms of support through formal ties, compared to HIV negative persons. We offer recommendations for changes to how HIV-negative partners in a serodiscordant relationship are served and cared for, and particularly, the importance of moving toward dyad-focused policies and practices.

Findings among Indigenous participants of the Tracks survey of people who inject drugs in Canada, Phase 4, 2017-2019.

BACKGROUND: The Tracks survey of people who inject drugs (PWID) collected data in 14 sentinel sites across Canada (2017-2019). These findings describe the prevalence of human immunodeficiency virus (HIV), hepatitis C and associated risk behaviours among Indigenous participants. METHODS: Information regarding socio-demographics, social determinants of health, use of prevention services and testing, drug use, risk behaviours, and HIV and hepatitis C testing, care and treatment was collected through interviewer-administered questionnaires. Biological samples were tested for HIV, hepatitis C antibodies and hepatitis C ribonucleic acid (RNA). Descriptive statistics were calculated and reviewed by an Indigenous-led advisory group using the Two-Eyed Seeing approach. RESULTS: Of the 2,383 participants, 997 were Indigenous (82.9% First Nations, 14.9% Métis, 2.2% Inuit). Over half (54.5%) were cisgender male and the average age was 38.9 years. A large proportion (84.0%) reported their mental health as "fair to excellent". High proportions experienced stigma and discrimination (90.2%) and physical, sexual and/or emotional abuse in childhood (87.5%) or with a sexual partner (78.6%). Use of a needle/syringe distribution program (90.5%) and testing for HIV (87.9%) and hepatitis C (87.8%) were high. Prevalence of HIV was 15.4% (78.2% were aware of infection status) and 36.4% were hepatitis C RNA-positive (49.4% were aware of infection status). CONCLUSION: High rates of HIV and hepatitis C were identified. Challenges in access to and maintenance of HIV and hepatitis C care and treatment were noted. This information informs harm reduction strategies, including the need to scale-up awareness of prophylaxis in a culturally relevant manner.

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.

A Qualitative Study of Community-Based HIV/AIDS Prevention Interventions, Programs, and Projects for Rural and Remote Regions in Canada: Implementation Challenges and Lessons Learned.

CONTEXT: Fifteen percent to 20% of the Canadian and American populations live outside urban areas, and despite growing regional HIV/AIDS-related health disparities, there is little published research specific to rural or remote (rural/remote) HIV/AIDS prevention programming. OBJECTIVE: To document implementation challenges, lessons learned, and evaluation approaches of promising and proven HIV/AIDS prevention programs and interventions developed and delivered by organizations with rural/remote catchment areas in Canada to provide a foundation for information sharing among agencies. DESIGN: Qualitative study design, using a community-based participatory research approach. We screened Canadian community-based organizations with an HIV/AIDS prevention mandate to determine whether they offered services for rural/remote populations and invited organizational representatives to participate in semistructured telephone interviews. Interviews were audio-recorded and transcribed. Content analysis was used to identify categories in the interview data. SETTING: Canada, provinces (all except Prince Edward Island), and territories (all except Nunavut). PARTICIPANTS: Twenty-four community-based organizations. RESULTS: Screening calls were completed with 74 organizations, of which 39 met study criteria. Twenty-four (62%) interviews were conducted. Populations most frequently served were Indigenous peoples (n = 13 organizations) and people who use drugs (n = 8 organizations) (categories not mutually exclusive). Key lessons learned included the importance of involving potential communities served in program development; prioritizing community allies/partnerships; building relationships; local relevancy and appropriateness; assessing community awareness or readiness; program flexibility/adaptability; and addressing stigma. Evaluation activities were varied and used for funder reporting and organizational learning. CONCLUSIONS: Rural/remote HIV/AIDS programs across Canada expressed similar challenges and lessons learned, suggesting that there is potential for knowledge exchange, and development of a community of practice. Top-down planning and evaluation models may fail to capture program achievements in rural/remote contexts. The long-term engagement practices that render rural/remote programs promising do not always conform to planning and implementation requirements of limited funding.

Educational content related to postcolonialism and indigenous health inequities recommended for all rehabilitation students in Canada: a qualitative study.

BACKGROUND: Postcolonial analysis can help rehabilitation providers understand how colonization and racialization create and sustain health inequities faced by indigenous peoples. However, there is little guidance in the literature regarding inclusion of postcolonialism within rehabilitation educational curricula. Therefore, this study explored perspectives regarding educational content related to postcolonialism and indigenous health that rehabilitation students in Canada should learn to increase health equity. METHODS: This qualitative study involved in-depth, semi-structured interviews with 19 individuals with insight into postcolonialism and health in Canada. Data were analyzed collaboratively to identify, code, and translate themes according to a structured six-phase method. RESULTS: Four themes emerged regarding educational content for rehabilitation students: (1) the historic trauma of colonization and its ongoing impacts on rehabilitation for indigenous peoples; (2) disproportionate health burden and inequitable access to health services; (3) how rehabilitation is related to Indigenous ways of knowing; and (4) why rehabilitation is well-positioned to address health inequities with Indigenous Peoples. CONCLUSION: Results call for reflection on assumptions underpinning the rehabilitation professions that may unintentionally reinforce health inequities. A postcolonial lens can help rehabilitation educators promote culturally safe services for people whose ill health and disability are linked to the effects of colonization. Implications for Rehabilitation Given the powerful, ongoing effects of colonization and racialization on health and disability, recommendation #24 from the Truth and Reconciliation Commission of Canada calls for the education of health professionals related to Indigenous history, rights, and anti-racism. However, there is little curricula on these areas in the education of rehabilitation professional students or in continuing education programs for practicing clinicians. This is the first study to investigate expert perspectives on content related to postcolonialism and indigenous-settler inequities that should be included in the education of rehabilitation students in Canada. According to the participants in this study, rehabilitation educators in Canada should consider incorporating the following four themes into curricula to better address Indigenous-settler inequities in the context of rehabilitation: (1) the historic trauma of colonization and its ongoing impacts on rehabilitation for Indigenous Peoples in Canada; (2) disproportionate health burden and inequitable access to health services; (3) how rehabilitation is related to Indigenous ways of knowing; and (4) why rehabilitation is well-positioned to rise to the challenge of addressing health inequities with Indigenous Peoples in Canada. Postcolonialism is useful for rehabilitation providers because it is an approach that redirects the focus of problems from Indigenous People to the systems of oppression (specifically colonization and racialization) that cause ill health and disability.

Decolonizing Scoping Review Methodologies for Literature With, for, and by Indigenous Peoples and the African Diaspora: Dialoguing With the Tensions.

This article summarizes our deepened understanding of decolonizing research with, for, and by Indigenous peoples and peoples of African descent that emerged from conducting a scoping review of the methodological literature and reflecting on our review process. Although our review identified decolonizing methodologies as a promising approach, we questioned if our scoping review process engaged in decolonizing knowing. To unpack the epistemological tensions between decolonizing knowing and Western ways of doing scoping reviews, we engaged in individual and collective reflective processes- dialoguing with the tensions-moving from individual immersion in the literature to transformative dialogues among the team. In reflecting upon our tensions with the scoping review process, themes that emerged included (a) ontological/epistemological disjunctures, (b) tensions with concepts and language, and (c) relationships with the literature and beyond. This reflexive process provides valuable insight into ways in which review methods might be made a decolonizing research experience.

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.

Arts-based HIV and STI prevention intervention with Northern and Indigenous youth in the Northwest Territories: study protocol for a non-randomised cohort pilot study.

INTRODUCTION: Indigenous youth are disproportionately represented in new HIV infection rates in Canada. Current and historical contexts of colonisation and racism, disconnection from culture and land, as well as intergenerational trauma resulting from the legacy of residential schools are social drivers that elevate exposure to HIV among Indigenous peoples. Peer-education and arts-based interventions are increasingly used for HIV prevention with youth. Yet limited studies have evaluated longitudinal effects of arts-based approaches to HIV prevention with youth. The authors present a rationale and study protocol for an arts-based HIV prevention intervention with Northern and Indigenous youth in the Northwest Territories (NWT), Canada. METHODS AND ANALYSIS: This is a multicentre non-randomised cohort pilot study using a pretest/post-test design with a 12-month follow-up. The target population is Northern and Indigenous youth in 18 communities in the NWT. The aim is to recruit 150 youth using venue-based sampling at secondary schools. Participants will be involved in an arts-based intervention, Fostering Open eXpression among Youth (FOXY). Participants will complete a pretest, post-test survey directly following the intervention, and a 12-month follow-up. The primary outcome is new or enhanced HIV knowledge, and secondary outcomes to include: new or enhanced sexually transmitted infections knowledge, and increased self-esteem, resilience, empowerment, safer sex self-efficacy and cultural connectedness. Mixed effects regression analyses will be conducted to evaluate pretest and post-test differences in outcome measurement scores. ETHICS AND DISSEMINATION: This study has received approval from the HIV Research Ethics Board at the University of Toronto (REB: 31602). In addition, the project is currently registered in the NWT with the Aurora Research Institute (Licence: 15741). Trial results will be published according to the Transparent Reporting of Evaluations with Nonrandomised Designs statement. TRIAL REGISTRATION NUMBER: NCT02743026; Pre-results.

What all students in healthcare training programs should learn to increase health equity: perspectives on postcolonialism and the health of Aboriginal Peoples in Canada.

BACKGROUND: The ongoing role of colonialism in producing health inequities is well-known. Postcolonialism is a theoretical approach that enables healthcare providers to better understand and address health inequities in society. While the importance of postcolonialism and health (PCH) in the education of clinicians has been recognized, the literature lacks guidance on how to incorporate PCH into healthcare training programs. This study explores the perspectives of key informants regarding content related to PCH that should be included in Canadian healthcare training programs, and how this content should be delivered. METHODS: This qualitative study involved in-depth, semi-structured interviews with nineteen individuals with insight into PCH in Canada. Data were analyzed collaboratively to identify, code and translate key emergent themes according to the six phases of the DEPICT method. RESULTS: Three themes emerged related to incorporating PCH into Canadian healthcare training programs: (1) content related to PCH that should be taught; (2) how this content should be delivered, including teaching strategies, who should teach this content and when content should be taught, and; (3) why this content should be taught. For the Canadian context, participants advised that PCH content should include a foundational history of colonization of Aboriginal Peoples in Canada, how structures rooted in colonialism continue to produce health inequities, and how Canadian clinicians' own experiences of privilege and oppression affect their practice. Participants also advised that this content should be integrated longitudinally through a variety of interactive teaching strategies and developed in collaboration with Aboriginal partners to address health inequities. CONCLUSIONS: These findings reinforce that clinicians and educators must understand health and healthcare as situated in social, political and historical contexts rooted in colonialism. Postcolonialism enables learners to understand and respond to how colonialism creates and sustains health inequities. This empirical study provides educators with guidance regarding PCH content and delivery strategies for healthcare training programs. More broadly, this study joins the chorus of voices calling for critical reflection on the limits and harms of an exclusively Western worldview, and the need for action to name and correct past wrongs in the spirit of reconciliation and justice for all.

Research Done in "A Good Way": The Importance of Indigenous Elder Involvement in HIV Community-Based Research.

OBJECTIVES: We examined the role that Indigenous Elders can play in ensuring that community-based research (CBR) is conducted ethically. METHODS: We present data from a larger qualitative study exploring ethical issues that occur in HIV-related CBR through the experiences of researchers engaged in CBR. Between May 2010 and July 2011, we interviewed 51 academic and community research team leaders of federally funded HIV CBR studies. We used thematic analysis techniques to identify themes. RESULTS: Participating researchers engage Elders in research because Elders are keepers of Indigenous knowledge, dynamic ethical consultants, community protectors, and credible sources of information who are able to counsel and support, mediate conflict, provide local context and history, and conduct ceremonial roles. Potential challenges cited by participants to engaging Elders in research include finding the right "fit," approaching Elders in a culturally appropriate way, and bureaucratic environments that do not honor Indigenous processes. CONCLUSIONS: Culturally appropriate Elder engagement in HIV CBR with Indigenous communities is vital for promoting positive relationships and culturally safe research that respects ceremony and Indigenous ways of knowing.

The Complexities of Accessing Care and Treatment: Understanding Alcohol Use by Aboriginal Persons Living with HIV and AIDS.

The role of alcohol in the transmission of HIV and access to health services for persons living with HIV/AIDS is relatively unexamined across the globe. Our team's community-based, mixed methods study examined both of these questions from the perspectives of Aboriginal persons living in Canada with HIV/AIDS (APHA) and service providers (SP). A bilingual national survey was undertaken with APHAs and SPs and the findings were followed up on in peer interviews. A complex relationship was identified between alcohol use, perceptions of alcohol use and access to services. Nearly half of APHAs surveyed reported that alcohol played a role in their becoming HIV positive. APHAs and SPs differed in their assessment of the impact of alcohol in the lives of Aboriginal persons once diagnosed, with a far greater proportion of SPs identifying it as problematic. Both SPs and APHAs associated the misuse of alcohol with diminished health. Nearly half of the APHAs surveyed shared they had been told they were drinking by a SP when they were not, while over one-third reported ever being denied services because of drinking when in fact they were not. Both SPs and APHAs identified physical health and discrimination as key reasons. Notwithstanding these results that point to shortcomings in service provision, the data also reveal that most APHAs are recieving care in which their choices are respected and from providers they trust. The findings point to the need for a nuanced strategy to solidify the strengths and address the shortcomings in APHA's service provision.

HIV diagnoses in indigenous peoples: comparison of Australia, Canada and New Zealand.

In industrial countries, a number of factors put indigenous peoples at increased risk of HIV infection. National surveillance data between 1999 and 2008 provided diagnoses for Aboriginal and Torres Strait Islanders (Australia), First Nations, Inuit and Métis (Canada excluding Ontario and Quebec) and Maori (New Zealand). Each country provided similar data for a non-indigenous comparison population. Direct standardisation used the 2001 Canadian Aboriginal male population for comparison of five-year diagnosis rates in 1999-2003 and 2004-2008. Using the general population as denominators, we report diagnosis ratios for presumed heterosexual transmission, men who have sex with men (MSM) and intravenous drug users (IDU). Age standardised HIV diagnosis rates in indigenous peoples in Canada in 2004-2008 (178.1 and 178.4/100 000 for men and women respectively) were higher than in Australia (48.5 and 12.9/100 000) and New Zealand (41.9 and 4.3/100 000). Higher HIV diagnosis rates related to heterosexual contact among Aboriginal peoples, especially women, in Canada confirm a widening epidemic beyond the conventional risk groups. This potential of a generalised epidemic requires urgent attention in Aboriginal communities; available evidence can inform policy and action by all stakeholders. Although less striking in Australia and New Zealand, these findings may be relevant to indigenous peoples in other countries.