Definitions of survey indicators.

BackgroundFailure to retain people living with HIV (PLHIV) in care remains a significant barrier to achieving epidemic control in Haiti, with as many as 30% lost from care within one year of starting treatment. Community-led monitoring (CLM) is an emerging approach of improving healthcare and accountability to service users, through a cycle of monitoring and advocacy. In 2020, a CLM program was launched in Haiti to identify barriers to retention and advocating for better health services.MethodsData from the community-led monitoring program in Haiti were analyzed, from a sample of 65 healthcare facilities in the Nord, Artibonite, and Ouest departments collected from April 2021 to February 2022. Qualitative data from six community-based focus groups and 45 semi-structured individual interviews were analyzed.ResultsConfidentiality and stigmatization emerged as barriers to care, particularly due to the separation of PLHIV from other patients in view of community members. To avoid identification, patients described traveling long distances, with the reimbursement of transportation costs described as being insufficient or unavailable. Costs of non-HIV clinical services were a frequent concern and respondents described a need for clinics to provide food during all patient visits. Stock-outs were a regular challenge; by contrast, treatment literacy did not emerge as a major barrier to retention.ConclusionsThese findings represent the first instance, to our knowledge, of original data from a community-led monitoring program being published in any country. These findings suggest that improving treatment retention for PLHIV is dependent on improving the acceptability and affordability of healthcare services. Ensuring confidentiality is critical, particularly where stigma is high. Retention could be improved by systematically strengthening patient confidentiality protections throughout the healthcare system, providing patients with sufficient travel compensation and other incentives, and delivering wraparound services provided for free. Addressing these challenges will require ongoing advocacy for community-developed recommendations and solutions.