Rosen JG, Nakyanjo N, Ddaaki WG, Zhao T, Van Vo A, Nakubulwa R, Ssekyewa C, Isabirye D, Katono RL, Nabakka P, Ssemwanga RJ, Kigozi G, Odiya S, Nakigozi G, Nalugoda F, Kigozi G, Kagaayi J, Grabowski MK, Kennedy CE. Identifying longitudinal patterns of HIV treatment (dis)engagement and re-engagement from oral histories of virologically unsuppressed persons in Uganda: A thematic trajectory analysis. Soc Sci Med. 2023 Dec;339:116386. doi: 10.1016/j.socscimed.2023.116386. Epub 2023 Nov 14. PMID: 37984182; PMCID: PMC10841599.
Abstract
Background:
There is limited study of persons deemed "harder to reach" by HIV treatment services, including those discontinuing or never initiating antiretroviral therapy (ART). We conducted narrative research in southern Uganda with virologically unsuppressed persons identified through population-based sampling to discern longitudinal patterns in HIV service engagement and identify factors shaping treatment persistence.
Methods:
In mid-2022, we sampled adult participants with high-level HIV viremia (≥1000 RNA copies/mL) from the prospective, population-based Rakai Community Cohort Study. Using life history calendars, we conducted initial and follow-up in-depth interviews to elicit oral histories of participants' journeys in HIV care, from diagnosis to the present. We then used thematic trajectory analysis to identify discrete archetypes of HIV treatment engagement by "re-storying" participant narratives and visualizing HIV treatment timelines derived from interviews and abstracted clinical data.
Results:
Thirty-eight participants (median age: 34 years, 68% men) completed 75 interviews. We identified six HIV care engagement archetypes from narrative timelines: (1) delayed ART initiation, (2) early treatment discontinuation, (3) treatment cycling, (4) prolonged treatment interruption, (5) transfer-related care disruption, and (6) episodic viremia. Patterns of service (dis)engagement were highly gendered, occurred in the presence and absence of optimal ART adherence, and were shaped by various factors emerging at different time points, including: denial of HIV serostatus and disclosure concerns; worsening HIV-related symptoms; psychological distress and depression; social support; intimate partner violence; ART side effects; accessibility constraints during periods of mobility; incarceration; and inflexible ART dispensing regulations.
Conclusions:
Identified trajectories uncovered heterogeneities in both the timing and drivers of ART (re-)initiation and (dis)continuity, demonstrating the distinct characteristics and needs of people with different patterns of HIV treatment engagement throughout the life course. Enhanced mental health service provision, expanded eligibility for differentiated service delivery models, and streamlined facility switching processes may facilitate timely (re-)engagement in HIV services.