What Keeps People Living with HIV/AIDS Engaged in Care: The Health and Service Provider Perspective

Background & Purpose: Within the context of HIV ‘treatment as prevention’ there has been a growing interest in understanding what enables people living with HIV/AIDS (PHAs) to successfully progress from testing and diagnosis to being linked to care, initiating treatment and achieving viral suppression, and remaining engaged in care for the long-term. Currently, there is a well-documented cascade effect with fewer numbers of PHA at each stage of this care continuum. This qualitative study fills an important gap in the literature by soliciting the perspectives of clinical and community-based care providers about what personal, relational, social, and cultural issues they think leads PHAs to engage or disengage from care.

Methods: In-depth semi-structured qualitative interviews were conducted with 29 HIV-focused clinical care providers (seven physicians, nine nurses, and six social workers) and community-based care providers (seven program managers and service providers) in Toronto and Ottawa, Canada. The interviews were audio-recorded, transcribed verbatim, and inductively analyzed for major themes.

Results: Care providers in this study reported that their patients/clients continue to experience barriers to accessing HIV treatment and appropriate services and healthcare, especially if patients/clients are managing intersecting forms of social and economic marginalization. Specifically, participants identified ongoing HIV-related stigma (especially within newcomer and immigrant communities) and structural factors like poverty (e.g., not being able to afford transit to attend appointments, or having stable housing) as creating significant barriers for their patients/clients to remain engaged in care. Participants identified PHAs who are managing substance use and mental health issues as particularly complex and challenging to care for, and many felt unprepared to provide this care effectively. Participants described a range of strategies they use to orient newly diagnosed PHAs to care (e.g., through site visits), and explained how they communicate with patients/clients about the risks and benefits of treatment initiation (e.g., discussing how to manage potential side effects) and desired clinical outcomes (e.g., explaining viral suppression in accessible language). Participants emphasized the importance of patient/client-centred approaches to care and establishing treatment readiness, especially for the precariously housed and street involved. Participants identified strategies they use to retain and re-engage patients/clients in care, including offering more flexible and phone-based services, setting up routine testing at more accessible clinics, phone check-ins after missed appointments, and letting patients/clients know they can always return.

Conclusions & Implications: Findings suggest that despite the positive health outcomes associated with early HIV treatment initiation, the social determinants of health continue to limit the ability of many PHAs to stay engaged in care. Interventions to support PHAs with mental health and addictions issues are especially needed. Social work has an important role to play by supporting individual PHAs to access treatment and meet their psychosocial and material needs but also by advocating for structural supports like income maintenance and housing. Findings from this study can be used to develop multi-level interventions to ensure a greater number of PHAs not only remain in engaged in care, but receive high quality patient/client centred care that is responsive to their needs.