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Barriers impeding care for people living with HIV: early findings from Community-Led Monitoring in Haiti

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BACKGROUND: Community-led monitoring (CLM) is an emerging and powerful approach to improving the quality of health care for people with HIV (PWH), and members of key populations (KP) and other affected groups. CLM consists of a routine cycle of civil society-led monitoring and advocacy with the aim of improving services for PWH and promoting accountability for the communities receiving care. In 2020, the Community Observatory for HIV Services (OCSEVIH) launched a CLM project in Haiti to identify barriers to HIV care and to advocate for better health services.
DESCRIPTION: Surveys were conducted in 41 healthcare facilities in the Nord, Artibonite, and Ouest departments from April to June 2021, including 41 observation-based surveys of facilities, 41 facility manager interviews, and 980 patient surveys (including 689 PWH). Data were collected by a team of PWH and KP community monitors. Separately, 6 focus groups and 45 semi-structured individual interviews were conducted in the broader community. Qualitative data were analyzed using a thematic codebook developed by the monitors and other CLM team members.
LESSONS LEARNED: 60% of patients surveyed reported traveling long distances to clinics, despite 59% having facilities closer to home. Wanting to avoid being seen was cited by 44% of these respondents as the primary reason for traveling to remote facilities. Monitors observed at least one privacy concern in 22% of clinics, such as consulting multiple patients in one room. Other concerns included buildings in bad condition (29% of clinics), feeling unsafe (24% of patients surveyed), and staff reprimanding patients for missed visits (11%). Qualitative data reveal violations of privacy (described in 31 out of 45 interviews) and disclosure of HIV status (21 out of 45) in clinics, mainly via separation of PWH from other patients in waiting rooms, counseling and discussions of health information in public spaces, and disclosure of HIV status by health personnel to community members. These findings are being used in advocacy with duty bearers to address these barriers.
CONCLUSIONS: Ensuring confidentiality and privacy is critical, particularly in settings where HIV-related stigma is high. Improving treatment initiation and retention for PWH is critically dependent on improving patient confidentiality and acceptability of healthcare services.