Assessment of Awareness and Acceptability of Hospital Autopsy Among People Living with HIV and Their Caregivers in Northern Uganda

Felix Bongomin; Winnie Kibone; Ritah Nantale; Byron Awekonimungu; Nixson Oyoo; Joseph Baruch Baluku; Francis Okongo; Megan Genevieve Latoya; David W Denning; Davidson H Hamer; Conrad Muzoora

doi:10.2147/HIV.S521230

Assessment of Awareness and Acceptability of Hospital Autopsy Among People Living with HIV and Their Caregivers in Northern Uganda

HIV AIDS (Auckl). 2025 Jun 9:17:143-152. doi: 10.2147/HIV.S521230. eCollection 2025.

Authors

Felix Bongomin^{1

2

3}, Winnie Kibone¹, Ritah Nantale⁴, Byron Awekonimungu¹, Nixson Oyoo⁵, Joseph Baruch Baluku⁶, Francis Okongo⁷, Megan Genevieve Latoya⁸, David W Denning³, Davidson H Hamer^{8

9

10}, Conrad Muzoora¹¹

Affiliations

¹ Department of Medical Microbiology and Immunology, Faculty of Medicine,Gulu University, Gulu, Uganda.
² Department of Internal Medicine, Gulu Regional Referral Hospital, Gulu, Uganda.
³ Manchester Fungal Infection Group, School of Biological Sciences, Faculty of Medicine, Biology and Health, The University of Manchester, Manchester, UK.
⁴ Department of Community and Public Health, Faculty of Health Sciences Mbale, Busitema University, Mbale, Uganda.
⁵ Kitgum General Hospital, Kitgum, Uganda.
⁶ Kiruddu National Referral Hospital, Kampala, Uganda.
⁷ Department of Cancer Research and Training, East Africa Centre of Excellence in Oncology, Uganda Cancer Institute, Kampala, Uganda.
⁸ Department of Global Health, Boston University School of Public Health, Boston, Massachusetts, USA.
⁹ Section of Infectious Diseases, Boston University Chobanian & Avedisian School of Medicine, Boston, Massachusetts, USA.
¹⁰ Center on Emerging Infectious Diseases, Boston University, Boston, Massachusetts, USA.
¹¹ Department of Internal Medicine, Faculty of Medicine, Mbarara University of Science and Technology, Mbarara, Uganda.

Abstract

Background: Autopsy is a valuable diagnostic tool utilized to identify causes of death and to confirm ante-mortem diagnoses of opportunistic infections among people living with HIV (PLHIV). We assessed acceptance of full or minimally invasive hospital (non-medicolegal) autopsies.

Methods: We conducted a multicentre, observational, cross-sectional study between October 2023 and January 2024 in four large HIV clinics in Northern Uganda among adult PLHIV and their caregivers, using a structured questionnaire. We conducted multivariable logistic regression to assess for association between acceptance of autopsy and selected exposures among PLHIV and caregivers with results expressed as adjusted odds ratios (aOR) and 95% confidence intervals (CI).

Results: A total of 310 participants, including 232 PLHIV and 78 caregivers were enrolled. Most participants (77.4%, n=240) had heard of autopsy. Overall, 132 (42.6%) participants reported that they would accept autopsy; 38/78 (48.7%) of the caregivers versus 94/232 (40.5%) of PLHIV. Most (81.3%, n=252) cited desire for accurate cause of death as their reason for accepting autopsy. However, 133 (42.9%) reported fear of body disfigurement, 77 (24.8%) lack of perceived benefit, 35 (11.3%) religiously unacceptable, and 52 (16.8%) culturally/traditionally forbidden as reasons for autopsy refusal. Autopsy acceptance among PLHIV was associated with being an inpatient (aOR: 4.6; 95% CI: 2.04-10.4), autopsy awareness (aOR: 5.1; 95% CI: 1.2-22.0), and inversely with having a primary education level (aOR: 0.44; 95% CI: 1.61-3.18). Among caregivers, no education was associated with acceptance of autopsy (aOR: 0.09; 95% CI: 0.02-0.55).

Conclusion: In Uganda, less than half of PLHIV or their caregivers would accept having an autopsy when they die. There is need for public sensitization about the relevance of autopsies in this population, with emphasis that the clinical diagnosis may not necessarily be the cause of death.

Keywords: HIV; Uganda; cause of death; minimally invasive autopsy.

Grants and funding

D43 TW012266/TW/FIC NIH HHS/United States