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Sustained engagement in HIV care is critical for achieving viral suppression, reducing transmission risk, and improving overall health and well-being of people living with and at risk of HIV (PLHIV) (World Health Organization, 2021). However, a significant proportion of individuals disengage from care within the first few months of initiating treatment, leading to higher rates of transmission, increased morbidity, and poor long-term health outcomes, with the burden disproportionately affecting equity-deserving groups (Geng et al., 2010). Structural barriers rooted in the social determinants of health have been identified as key factors contributing to care disengagement such as housing instability, financial insecurity, and transportation challenges (Aidala et al., 2016; Odediran et al., 2022). Additionally, stigma and discrimination, particularly against race and ethnic minorities, people who are gender-diverse, and individuals who are socioeconomically disadvantaged, has been shown to hinder HIV healthcare engagement, and ultimately reinforce disparities in access to treatment and essential support services (Burke et al., 2024; Hall et al., 2017; Logie et al., 2011; Turan et al., 2017).

A growing body of research has sought to address these structural barriers and stigma that hinder sustained engagement in HIV care. However, many existing studies and interventions continue to adopt a one-size-fits-all approach that does not adequately consider the complex ways in which multiple intersecting forms of oppression shape individuals’ experience with HIV care (Stangl et al., 2022). Consequently, the compounded barriers faced by those at the intersection of multiple forms of oppression remain understudied. Furthermore, a fundamental limitation in HIV retention research is survivorship bias, wherein studies disproportionately focus on individuals who remain engaged in care while overlooking the experiences of those who disengage prematurely (Mugavero et al., 2014; Yehia et al., 2015). This skews retention models and intervention strategies designed primarily for those who have already established access to care, rather than addressing the realities of those who struggle to remain engaged. Accordingly, existing approaches often fail to address the needs of the most vulnerable populations to early dropout.

To address these gaps, it is crucial to shift the research focus toward individuals at the highest risk of care dropout and integrate an intersectionality-informed framework. By prioritizing the lived experiences of those who disengage from care prematurely and navigate multiple layers of oppression, this project aims to foster a more inclusive and structurally responsive approach to HIV care retention.

This project, conducted in partnership with Casey House, adopts an intersectionality-informed, community co-designed, mixed-methods approach to examine the factors contributing to early disengagement from HIV care and develop tailored, community-driven interventions to improve retention. By integrating clinical data analysis with qualitative insights, this project ensures that HIV care strategies are informed by both lived experiences and systemic patterns. 

Objectives

In collaboration with Casey House, this project aims to:

1. Identify key factors contributing to early dropout among people living with HIV who disengage from care within the first three months of treatment initiation,
2. Analyze clinical data from Casey House to examine disengagement patterns, demographic trends, and common challenges faced by those who leave care prematurely,
3. Conduct in-depth interviews with individuals who have disengaged from care to gain firsthand insights into their experiences, challenges, and potential support needs,
4. Apply an intersectionality-informed lens to explore how layered social identities and systemic oppression influence early disengagement from HIV care,
5. Co-design retention strategies to ensure that solutions are patient-centred, inclusive, and responsive to the diverse needs of the community.

Project phases

This project will be a collaborative co-design process led by Casey House and researchers from Canadian Excellence Research Chair in Health Equity and Community Wellbeing (CERC-HECW) to ensure that research priorities, methodologies, and intervention strategies are rigorously developed and meaningfully informed by clinical expertise as well as insights from PLHIV. Central to this process is the engagement of PLHIV from equity-deserving communities, including people who use substances, Indigenous peoples, people who identify as women, individuals who identify as sexual and/or gender minorities, African, Caribbean, and Black communities, and those at the intersections of these, and other identities.

Phase 1: Co-design and Governance Workshops

The project will begin with a structured co-design process, including roundtable discussions with knowledge users, to establish research priorities, refine methodologies, and align interventions with the specific needs of individuals most vulnerable to early disengagement. 

Phase 2: Qualitative Interviews

In-depth interviews will be conducted with PLHIV from diverse communities. These conversations will provide insights into their lived experiences, the challenges they face, and their unmet healthcare needs in regards to EDR. Individuals who are interviewed will also be invited to join a community leadership group (CLG) and will be involved in co-design, co-facilitation, and knowledge mobilization.

Phases 3 and beyond will be co-designed with our community leadership group and are subject to change

Phase 3: Quantitative Data Analysis

Retrospective aggregate clinical data will be analyzed to identify trends, disparities, and key factors associated with early disengagement from HIV care. This phase will help uncover patterns specific to equity-deserving populations and guide further qualitative inquiry in Phase 4 by pinpointing areas that require deeper exploration.

Phase 4: Qualitative Focus Groups Using Arts Based Methods

Findings from Phase 3 will be co-analyzed by the CLG and the research team to identify key groups and themes to discuss in arts-based focus groups with community members and Casey House clients. Timeline drawing will be used to map the experiences of clients onto the findings from data and expand on the quantitative factors believed to be affecting EDR and drawing out further factors important to community members in relation to their experiences with EDR. 

Phases 5/6:

Final analysis will be completed by the CLG and research team to consolidate findings between each phase (Phase 5). This will allow the whole research team to identify key findings and generate ideas on the best use of the outcomes to impact care and push transformative change in the HIV space. Phase 6 will conclude the project with the end of project knowledge mobilization by the research team and the CLG to create useful and accessible products from this research. This will add to the continuous KMB that will be undertaken throughout the project.  

Goals and Implications

This project aims to enhance accessibility, address structural barriers, and improve long-term health outcomes for PLHIV. By applying intersectionality-informed framework, findings will contribute to broader efforts to eliminate health inequities faced by equity-deserving populations and who may experience intersecting systemic barriers. Ultimately, this project will help transform retention as a systemic responsibility rather than an individual burden and foster a more inclusive, equitable, and supportive HIV care environment.