Despite major advances in HIV care and treatment, many people living with HIV continue to experience interruptions in their treatment. These breaks — often driven by complex social, structural and health-related factors — can negatively impact clinical outcomes and overall well-being. To explore this issue, a qualitative study was conducted with healthcare providers (HCPs) in British Columbia (BC) who have specialized experience supporting individuals to begin or return to HIV treatment. These providers offered valuable insights into the barriers to and facilitators of HIV care engagement and the strategies used to overcome barriers to care. Findings spotlight the importance of comprehensive care that considers client-determined needs and focuses on relational practices that prioritize working collaboratively with people living with HIV in their own healthcare journeys. Results highlight the significance of relationship building, person-centred care and coordinated, multidisciplinary efforts to address context- and community-specific needs as essential components of successful engagement and re-engagement in HIV care.
Results
Between November 2020 and May 2021, 19 HCPs across five regional health authorities in BC were interviewed by phone. All participants worked with people living with HIV to engage or re-engage them in HIV care through the RETAIN or STOP HIV/AIDS programs. The STOP HIV/AIDS program aims to increase access to HIV testing and treatment and expand support services (e.g., community-based case management, outreach) to facilitate care continuity and engagement. The RETAIN (Re-engagement and Engagement in Treatment for Antiretroviral Interrupted and Naïve populations) program is a system that alerts prescribing clinicians when their clients are more than 60 days late for refilling their antiretroviral therapy (ART) and then refers clients who remain disengaged from care to outreach nursing teams across the province.
Of the 19 HCPs who participated:
- five identified as men and 14 identified as women
- nine were working in urban centres and 10 were working in more rural or remote communities
- all were nurses, peer navigators, social workers, pharmacists or other HCPs who directly engage with people living with HIV
Strategies used by healthcare providers to support engagement in HIV care
Three main themes emerged through strengths-based qualitative analysis relating to strategies used by HCPs to support the engagement and re-engagement in HIV care.
Relationship building
A key theme that emerged was the importance of building and maintaining relationships rooted in respect, compassion and nonjudgment. This was seen as essential to supporting ongoing care, improving engagement and supporting re-engagement.
Three key strategies emerged for building strong relationships with clients. First, providers emphasized the importance of establishing rapport and laying a foundation of trust. This often meant meeting people where they were at — and beginning with considering their most immediate needs, rather than focusing on HIV treatment right away. This approach was especially important for individuals who had had negative experiences in healthcare settings in the past and had lost trust in providers. Second, providers discussed the need to show dependability, highlighting the need to follow through. The final key strategy for building relationships was incorporating regular check-ins to keep the communication and relationship going.
“My position as healthcare provider is that I have no leverage unless I have a relationship. Unless they understand and trust me, I’ve got nothing. So, I worked hard to create that.”
(Nurse, urban)
Person-centred care
HCPs reported the importance of person-centred care. This included three subthemes that described the central aspects of this approach.
Tailored holistic care for addressing multiple needs
HCPs reported that tailoring care to the diverse needs and abilities of people living with HIV and ensuring that clients were active participants in their own care were foundational elements of successful engagement and re-engagement in HIV care. HCPs noted that supporting a client’s overall stability by addressing needs traditionally seen as external to the medical system (e.g., housing, employment, income, food security) was instrumental in increasing their readiness to re-engage. HCPs reported the significance of providing care via multidisciplinary teams with an understanding of the underlying reasons for disengagement from HIV care, including social determinants of health. By meaningfully involving clients at all levels of care provision and planning, HCPs supported the autonomy, agency and self-determination of people living with HIV throughout their healthcare journeys.
“Just leaving that window open so that when they are ready, we are there to assist them. They have every potential to be fully autonomous and have full agency in their care [and] complete independence, but they might just need a little guidance to get to that point.”
(Outreach worker, urban)
Trauma-informed care models and practices
HCPs noted the importance of recognizing how trauma and negative experiences within the healthcare system can impact service use and hinder ongoing engagement. HCPs acknowledged that understanding trauma as an ongoing and pervasive systemic factor, alongside personal experiences of trauma, was also important to working productively with clients. HCPs reported the need for better system-level approaches to trauma-informed care provision and adequate training regarding trauma-informed practices and evidence-based psychological approaches (e.g., motivational interviewing).
“When I do my work, it’s really from a trauma-informed lens so it’s realizing that trauma exists and there are multiple sources. I don’t really need to know the specifics, but that healthcare, the criminal justice system or the ministry systems could potentially be a source of this trauma, and then working along within those lines.”
(Outreach worker, urban)
Centering accessibility and community needs to enhance care equity for diverse populations
HCPs reported the need for community-appropriate services and community-specific providers to provide adequate care for people living with HIV who experience discrimination and inequities within the healthcare system. HCPs reported the need for community-rooted supports to increase flexibility and access to care (e.g., peer navigator programs, translation services, providers representative of communities with whom they worked, inclusive hiring practices to fill current staffing gaps).
“...my program has a contract with Provincial Language Services and it’s easy, you can just phone them any time and get whatever language you need...it’s pretty easy to get an interpreter, you can just right on instant, it takes minutes and you have an interpreter.”
(Nurse, rural/remote)
Coordinated care approaches
HCPs highlighted the importance of coordinated, collaborative care in supporting people living with HIV, including those disengaged from care. Providers emphasized the value of strong inter- and intra-disciplinary relationships, both formal and informal, to bridge gaps in the fragmented health system. These collaborative networks can span health authorities, community organizations and ancillary services to more seamlessly provide follow-up, person-centred care and proactive outreach. By leveraging these relationships, providers can identify and reconnect individuals who have become disengaged in HIV care.
“That has been the valuable part of it for me… to make these connections with agencies or other medical health services, where I can just phone, hey, so-and-so, can you drop over and see what is happening with so-and-so’s hand or something.”
(Nurse, rural/remote)
Recommendations for service providers
On the basis of the study results, the researchers generated a series of recommendations aimed at strengthening clinical guidance and the implementation of strategies for engaging and re-engaging clients in HIV treatment.
- Embed relationship building as a core aspect of HIV care to foster continuity and trusting relationships with clients grounded in respect, compassion and nonjudgment.
- Integrate relationship-focused care practices across diverse clinical settings to provide people living with HIV with better care management and to prevent disengagement from HIV care.
- Implement standardized care approaches that are context specific and tailored to address client-determined priorities.
- Expand team-based HIV care across health authorities to best address client-identified priorities relating to intersecting health needs (e.g., psychosocial).
- To minimize re-traumatization in healthcare engagement and service provision, expand the implementation of universal and ongoing training and education at all levels of care provision (e.g., management, policy- and decision-makers)
- Prioritize inclusive hiring practices and strengthen supports for peer navigator staff.
- Develop pathways to expand community-based support networks, peer-led services and resources and accessible supports.
- Evaluate resource allocation to better understand regional and systemic disparities in HIV care.
Related resources
What are the characteristics of effective HIV peer support programs? – CATIE article
A linkage to care program to enhance the engagement of people living with HIV – CATIE article
HIV Peer Support and Navigation – CATIE case study
The Vancouver STOP Project – CATIE resource list
Swiss study explores trends in interruption and re-engagement in HIV care – CATIE article
Reference
Pakhomova TE, Parry R, Wesseling T et al. Healthcare provider strategies and approaches to supporting people living with HIV who are experiencing HIV treatment disengagement in British Columbia, Canada. Qualitative Health Research. 2025;0(0):1-15. Available from: https://doi.org/10.1177/10497323251318218