Understanding Barriers to HIV Care Engagement: An intersectionality-Informed, Co-Designed Mixed-Methods Study of Early Dropout and Initial Non-Engagement

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 HIV (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 such as People of Colour (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 People of Colour, gender-diverse, and socioeconomically disadvantaged individuals, has 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, 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 stakeholders 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 those with lived experiences of HIV care disengagement. Central to this process is the engagement of individuals living with HIV from equity-deserving communities, including those affected by substance use, Indigenous peoples, transgender individuals, African, Caribbean, and Black communities, older adults and those at the intersections of these identities.

Phase 1: Co-design the research

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

Phase 2: Clinical data analysis

Retrospective 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 the qualitative inquiry in Phase 3 by pinpointing areas that require deeper exploration.

Phase 3: Interview 

In-depth interviews will be conducted with people living with HIV from diverse communities who have disengaged from care. These conversations will provide insights into their lived experiences, the challenges they face, and their unmet healthcare needs. 

Phase 4: Strategy development

Findings from Phases 3 and 4 will inform the co-development of evidence-based and community-driven retention strategies. These strategies will be tailored to address structural barriers and enhance accessibility, feasibility, and effectiveness in real-world implementation.

Goals and Implications

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