Background Indigenous communities worldwide continue to lead and partner in health initiatives, yet no global synthesis has mapped how implementation science is being applied with Indigenous peoples, communities, and organizations across health and health-related settings. Existing literature is fragmented across disciplines, regions, and publication types, and uses diverse terminology. This limits understanding of where Indigenous-led and partnered implementation science is occurring, how it is conceptualized and operationalized, and how Indigenous leadership, governance, and data sovereignty are reported. Methods This protocol outlines a global scoping review guided by Joanna Briggs Institute methodology and reported according to PRISMA-ScR. We will include peer-reviewed and grey empirical literature from any country and any year involving Indigenous peoples or communities and an explicit implementation focus, such as implementation determinants, strategies, processes, outcomes, use of implementation science theories, models, or frameworks, or implementation-focused designs. Searches will be conducted in bibliographic databases and structured grey literature sources. Two reviewers will independently screen records and extract data. Charted items will include study characteristics, region, setting, population, health area, program type, implementation approaches, theories/models/frameworks, Indigenous leadership and partnership, governance and advisory structures, data-sovereignty practices, authorship or reflexivity, and key implementation findings. Quantitative data will be summarized descriptively and qualitative information will be synthesized using iterative thematic and content-analytic approaches. Indigenous partners will help interpret emerging findings and shape dissemination products for communities and policy audiences. Discussion This review will provide the first global map of Indigenous-led and partnered implementation science in health and health-related contexts. It will support future Indigenous-led research, capacity building, funding priorities, and policy by identifying geographical, topical, methodological, and reporting gaps, and by documenting promising practices in co-design, governance, and ethical implementation. The review is also intended to strengthen awareness and application of implementation science approaches aligned with Indigenous priorities, self-determination, cultural safety, and equity. Registration: Open Science Framework, https://doi.org/10.17605/OSF.IO/SX2T6
In 2022, a community-academic collaborative team published 5 key recommendations for developing a national action plan to advance the sexual and reproductive health and rights (SRHR) of women living with HIV in Canada. In 2023, a national gathering was convened to strategize implementation of the recommendations across policy, practice, and research settings. Discussions highlighted that meaningful engagement of women living with HIV (recommendation 1) is foundational to implementing the other recommendations. Meaningful engagement requires SRHR stakeholders to: actively dismantle power differentials; commit to engagement as an ongoing process; learn about regionally specific epidemiology and sociostructural forces that create and sustain vulnerability for HIV among women; invest in creating supportive infrastructure; and integrate Equity, Diversity, and Inclusion principles to call diverse groups into the conversation. This Canadian initiative demonstrates how global guidelines can be transformed into nationally tailored action plans to advance the SRHR of women living with HIV, grounded in meaningful engagement.
Background: The Canadian HIV Cure Enterprise (CanCURE) is a pan-Canadian research collaboratory, investigating approaches for achieving sustainable HIV remission. In preparation for the next research cycle, CanCURE researchers and the Community Advisory Board (CAB) co-designed a web-based survey to identify HIV research priorities from the perspective of people with HIV (PWH) in Canada. The current study examined gender-based differences in these priorities. Methods: From August to December 2024, we recruited PWH across Canada through community organizations and community members. We collected data using REDCap electronic data capture tools hosted at The Research Institute of the McGill University Health Centre. The survey included 36 demographic questions, 16 questions related to general knowledge about HIV and HIV cure-related concepts, and 21 questions ranking research priorities. Knowledge questions were multiple choice, while priorities could be ranked on a scale. We summarized participant characteristics via descriptive statistics, and the research priorities were further stratified according to gender. Results: Of 109 participants, 48.6% self-identified as men, 46.8% as women, and 4.6% as two-spirit, non-binary, agender, or other. The median age was 53 years old. Approximately one-third of participants had lived with HIV for ≤14 years, one-third for 15-24 years, and one-third for ≥25 years. Overall, the median knowledge score of respondents was 79%. Among the 78 participants with prior HIV research experience, three times as many men (61.1%) as women (19.0%) participated in interventional studies involving medication or medical procedures. Men ranked preventing HIV transmission to partners as a priority, studying where the virus hides as the second, and avoiding high comorbidity risks as the third. In contrast, women ranked not having to take pills daily as a priority and avoiding higher risks for comorbidities as the second priority. Both genders equally valued expanding community involvement in HIV cure research. However, men focused more on integrating social and behavioural research, while women emphasized the need for diverse ethnic representation in research. Conclusions: Although both men and women share some common priorities regarding HIV cure research, there are notable gender differences in their specific concerns. Furthermore, a significant gender gap in participation in interventional studies, essential for advancing HIV cure research, highlights the importance of aligning research priorities with concerns of both genders.
The historical focus of the HIV movement on men who have sex with men has led to the systematic exclusion of women from research, programming, and decision-making. In the early 2000s, women researchers, advocates, and community leaders drove transformative shifts in Canada's HIV sector through community-based participatory research (CBPR) approaches. Their use of CBPR not only revolutionized women's engagement but also propelled significant progress towards gender-equitable research, including with trans communities and gender diverse and expansive persons. In this article, we critically examine the history of CBPR, specifically in the HIV field, from an intersectional feminist lens. We then present a case study of our research program: the Women and HIV Research Program, as a framework for meaningful community partnership. Next, as academics and community leaders, we describe the conceptualization of meaningful community-engaged research that we developed over 20 years. Our research program has been built upon a strong foundation of genuine academic-community partnerships and has embraced co-creation as a core principle. We reflect on the changes we have seen and responded to in the field over time. Our goal is for this article to serve as a reflective blueprint for those interested in meaningful community engagement and partnership in research.
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.
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.
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.
Contexte : L’enquête Track auprès des utilisateurs de drogues injectables a permis de recueillir des données dans quatorze sites sentinelles au Canada (2017 à 2019). Ces résultats décrivent la prévalence du virus de l’immunodéficience humaine (VIH), de l’hépatite C et des comportements à risque associés à ceux-ci chez les participants autochtones. Méthodes : Des informations sur les caractéristiques sociodémographiques, les déterminants sociaux de la santé, le recours aux services de prévention et au dépistage, la consommation de drogues, les comportements à risque, ainsi que le dépistage, les soins et le traitement du VIH et de l’hépatite C ont été recueillies par l’entremise de questionnaires administrés par un intervieweur. Les échantillons biologiques ont été analysés pour y détecter la présence d’anticorps anti-VIH et anti-hépatite C et l’acide ribonucléique (ARN) de l’hépatite C. Les statistiques descriptives ont été calculées et examinées par un groupe consultatif dirigé par des autochtones, selon l’approche à double perspective (Two-Eyed Seeing). Résultats : Parmi les 2 383 participants, 997 étaient des autochtones (82,9 % étaient des membres des Premières Nations, 14,9 % étaient des Métis et 2,2 % étaient des Inuits). Plus de la moitié (54,5 %) étaient des hommes cisgenres et l’âge moyen était de 38,9 ans. Une grande proportion (84,0 %) des participants ont déclaré que leur santé mentale était de « passable excellente ». Une forte proportion d’entre eux ont été victimes de stigmatisation et de discrimination (90,2 %) ainsi que de violences physiques, sexuelles et/ou psychologiques durant l’enfance (87,5 %) ou de la part d’un partenaire sexuel (78,6 %). Un pourcentage élevé d’entre eux ont déclaré utiliser un programme de distribution de seringues (90,5 %) et avoir été dépisté pour le VIH (87,9 %) et l’hépatite C (87,8 %). La prévalence du VIH était de 15,4 % (78,2 % d’entre eux avaient connaissance de leur statut infectieux) et 36,4 % d’entre eux étaient séropositifs pour l’ARN de l’hépatite C (49,4 % d’entre eux avaient connaissance de leur statut infectieux). Conclusion : L’enquête a révélé des taux élevés de VIH et d’hépatite C. Elle a également révélé des défis liés à l’accès et au maintien des soins et des traitements liés au VIH et à l’hépatite C. Ces renseignements éclairent les stratégies de réduction des méfaits, y compris la nécessité d’accroître la sensibilisation à la prophylaxie d’une manière culturellement pertinente.
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.
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.
Abstract: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.
The relationship between the First Peoples of Canada and researchers is changing as processes of self-determination and reconciliation are increasingly implemented. We used storytelling and ceremony to describe a historic event, the Indigenous Women’s Data Transfer Ceremony, where quantitative data of 318 Indigenous women living with HIV were transferred to Indigenous academic and community leaders. Relationship building, working together with a common vision, the Ceremony, and the subsequent activities were summarized as a journey of two boats. The Truth and Reconciliation Commission of Canada's Calls to Action and Indigenous ethical principles were central to the process. The article ends with team members’ reflections and the importance of shifting power to Indigenous Peoples in regard to data collection, their stories, and the resulting policies.
Background Action on the World Health Organization (WHO) Global Consolidated Guideline on Sexual and Reproductive Health and Rights (SRHR) of Women Living with HIV (WLWH) recommendations requires evidence-based, equity-oriented, and regionally-specific strategies which are responsive to the priorities and rights of WLWH. Methods In 2017/18, a team of leading Canadian women’s HIV community, research, and service organizations partnered with WHO to convene a webinar series to: define WLWH’s SRHR priorities in Canada; disseminate Canadian research and best practices; and highlight the importance of meaningfully engaging WLWH. Webinar topics included: Trauma- and violence-aware practice; Supporting safer HIV disclosure; Reproductive health, rights, and justice; and Resilience, self-efficacy, and peer support (>1,100 webinar views). Subsequent in-person and online consultation with >130 key stakeholders identified priorities for a National Action Plan to advance the SRHR of WLWH in Canada. Results Identified priorities to support SRHR across priority topics focused on transforming enabling environments include: •Incorporate Truth and Reconciliation calls-to-action for Indigenous and non-Indigenous Peoples; •Support WLWH’s leadership through equitable, adequately compensated opportunities; •Embed peer support and leadership throughout services for WLWH; •Prioritize women-centred care in service/program delivery, attending to women’s diverse priorities, experiences, and identities; •Use inclusive, respectful language to avoid reproducing stigma, discrimination, and marginalization; •Strengthen and expand support for WLWH’s extended networks (e.g. parental support); •Implement trauma- and violence-aware practices to ensure safer healthcare spaces; •Improve Knowledge Translation & Exchange initiatives. Additional topic-specific key messages were identified to inform a National Action Plan. Conclusion Guided by community engagement, recommendations from the National Action Plan encourage Canada to demonstrate global leadership in advancing SRHR of WLWH by emphasizing the need to create enabling environments for health and healthcare. Implementing the plan is being pursued through planned consultations with provincial and national government representatives and policy-makers. Disclosure No significant relationships.
Background With the highest rates of STIs in Canada, high mobility between North and South and a lack of adequate screening for STBBIs, it is possible that Inuit communities could face an HIV epidemic. If no action is taken to scale up prevention efforts, an epidemic in Inuit communities in the North could soon be a reality. Therefore, gauging an Inuit community’s level of readiness to develop and participate in community-based HIV prevention, education, screening, and ensuring approaches are culturally relevant is imperative. Methods This current research project builds directly on priorities outlined by Inuit stakeholders, and is facilitated through strong partnerships between the three communities (Kugluktuk, Arviat, and Clyde River Nunavut), Pauktuutit Inuit Women of Canada, the Canadian Aboriginal AIDS Network, and Dalhousie University. The goal of this research project is to engage Inuit communities and organizations in adapting, piloting and using the Community Readiness Model (CRM) to improve readiness to engage in HIV-modalities at the community level. This presentation will outline the community engagement and integrated knowledge translation processes, progress to date, and next steps for this community-based research project. Results This project has adopted Inuit Qaujimajatuqangit (IQ) as a framework, which supports personal wellness through a collective cultural sense of health. Consultations with the project advisory committee (Canadian Inuit HIV/AIDS Network (CIHAN)), Community Health Representatives from three respective Nunavut communities and the research team were held November 2015. We are working collaboratively to: (1) adapt the CRM; (2) ensure it is Inuit-specific; (3) pilot the adapted tool; and (4) determine the applicability of this tool. Representatives from Nunatsiavut, Nunavik and Inuvialuit will also be mentored on how to use the adapted CRM. Conclusion By engaging knowledge users and communities, this project will address HIV prevention in Inuit communities by identifying factors that impact readiness for HIV interventions. Disclosure No significant relationships.
Women living with HIV (WLHIV) experience stigma and elevated exposure to violence in comparison with HIV‐negative women. We examined the mediating role of experiencing recent violence in the relationship between stigma and depression among WLHIV in Canada.
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.
Stable Homes, Strong Families (SHSF) is a community-based research project that sought to investigate the connection between HIV, housing and Indigenous cultures and identify strategies to ensure culturally appropriate housing programs and policies for Indigenous peoples living with and affected by HIV. The impetus for this research stems from a body of knowledge that recognizes the inextricable link between housing and health, as well as growing momentum in Canada to reimagine the relationship between Indigenous and non-Indigenous peoples through decolonizing approaches and reconciliation. This paper outlines a number of solution-focused social policy recommendations that emerged from SHSF research findings to Indigenize the creation and management of housing for Indigenous peoples living with and affected by HIV. Recommendations include creating spaces for ceremonial practices and cultural traditions; integrating processes for community engagement and consultation; breaking down silos that exist between health, housing, and urban development stakeholders; and providing wrap around support services from an Indigenous perspective. In advocating for these recommendations, we aim to stimulate a dialog regarding how, and by whom, housing policies and practices can be developed, implemented, and mandated to best support Indigenous peoples living with and affected by HIV and AIDS across Canada and around the world.