Incidence and prevalence of orphanhood in Rakai, Uganda: a population-based cohort study, 1995-2022

The introduction and scale-up of HIV treatment and prevention programmes have resulted in steady declines in orphanhood prevalence in sub-Saharan Africa, but orphanhood incidence and its associated factors are less understood. We aimed to describe the incidence and prevalence of orphanhood after HIV treatment and prevention programmes became available in Rakai, Uganda.

In this population-based cohort study, we used data from all children and adolescents younger than 18 years with censused parents residing in 28 continuously surveyed Rakai Community Cohort Study (RCCS) communities from 1995 to 2022 (N=92 441), to calculate maternal, paternal, and double orphanhood prevalence by census round. Orphanhood incidence was estimated by use of a non-parametric hierarchical Bayesian model over time among children whose parents were alive during their first census interview and who were censused at least twice without missing more than two consecutive census visits (N=54 411). Poisson regression models estimated incidence rate ratios of orphanhood and 95% CIs by time period (pre-antiretroviral therapy [ART; 1995-2003], ART partial availability [2004-14], and ART full availability [2015-22]), age at orphanhood, and socioeconomic status of the household. Population attributable fractions of incident orphanhood due to parents' HIV-positive status were estimated among those with surveyed parents who were tested for HIV.

Orphanhood prevalence declined considerably over the study period, with steepest declines after ART became available; from 21·5% (3421 of 15 941 individuals) in 2003-04 to 6·3% (1449 of 23 082 individuals) in 2020-22. In adolescents aged 15-17 years, orphanhood prevalence declined from 49·4% (1057 of 2138) in 2002-03 to 14·4% (526 of 3661 individuals) in 2020-22. Incidence rates declined sharply; double orphanhood declined from 5·13 (95% CI 4·02-6·45) per 1000 person-years in 2003-04 to 0·68 (0·42-1·05) per 1000 person-years in 2020-22. The proportion of new cases of orphanhood attributed to parental HIV status declined from 67% in 2004 to 11% in 2022 for paternal orphanhood and from 71% to 12% for maternal orphanhood.

Scale-up of ART in this Ugandan setting drove substantive declines in orphanhood incidence. Yet, a considerable burden of orphanhood persisted in 2022, particularly among adolescents. To consolidate these gains, sustained investment and adaptation of HIV programmes are crucial to mitigate the ongoing risk of orphanhood for this vulnerable population.

National Institute of Allergy and Infectious Diseases, National Institute of Child Health and Development, Gates Foundation, National Institute of Mental Health, and National Institutes of Health Fogarty International Center.