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. 2020 Oct 29:3:33.
doi: 10.12688/aasopenres.13104.2. eCollection 2020.

A Journey of Hope: giving research participants a voice to share their experiences and improve community engagement around advanced HIV disease in Uganda

Fiona V Cresswell  1   2   3 , John Kasibante  1 , Emily M Martyn  1 , Lillian Tugume  1 , Gavin Stead  1 , Kenneth Ssembambulidde  1 , Morris K Rutakingirwa  1 , Enock Kagimu  1 , Laura Nsangi  1 , Carol Namuju  1 , Jane F Ndyetukira  1 , Cynthia Ahimbisibwe  1 , Florence Kugonza  1 , Alisat Sadiq  1 , Alice Namudde  1 , Joanna Dobbin  4 , Diksha Srishyla  5 , Carson Quinn  6 , Mable Kabahubya  1 , Conrad Muzoora  7 , Stephen Watiti  8 , David B Meya  1 , Alison M Elliott  2   3
Affiliations

A Journey of Hope: giving research participants a voice to share their experiences and improve community engagement around advanced HIV disease in Uganda

Fiona V Cresswell et al. AAS Open Res. .

Abstract

Over the last decade excellent progress has been made globally in HIV management thanks to antiretroviral therapy (ART) rollout and international guidelines now recommending immediate initiation of ART in people living with HIV. Despite this, advanced HIV disease (CD4 less than 200 cells/mL) and opportunistic infections remain a persistent challenge and contribute significantly to HIV-associated mortality, which equates to 23,000 deaths in Uganda in 2018 alone. Our Meningitis Research Team based in Uganda is committed to conducting clinical trials to answer important questions regarding diagnostics and management of HIV-associated opportunistic infections, including tuberculosis and cryptococcal meningitis. However, clinical research is impossible without research participants and results are meaningless unless they are translated into benefits for those affected by the disease. Therefore, we held a series of community engagement events with the aims of 1) giving research participants a voice to share their experiences of clinical research and messages of hope around advanced HIV disease with the community, 2) dispelling myths and stigma around HIV, and 3) raising awareness about the complications of advanced HIV disease and local clinical research and recent scientific advances. The purpose of this Open Letter is to describe our community engagement experience in Uganda, where we aimed to give clinical research participants a greater voice to share their experiences. These activities build upon decades of work in HIV community engagement and lays a platform for future research and engagement activities.

Keywords: Public engagement; advanced HIV diseases; clinical research; meningitis.

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Conflict of interest statement

No competing interests were disclosed.

Figures

Figure 1.
Figure 1.. Purposes and pillars of public engagement.
Figure 2.
Figure 2.. Knowledge exchange session in Western Uganda.
Figure 3.
Figure 3.. Infographic leaflets distributed to share information about TB meningitis and the RifT clinical trial.
The RifT clinical trial studied the safety, tolerability and pharmacokinetics of high dose rifampicin compared to standard of care TBtreatment of adult tuberculous meningitis in Uganda.
Figure 4.
Figure 4.. Infectious Diseases Institute Community Advisory Board Meeting.
Figure 5.
Figure 5.. Public audience drawn to the circus event.
Figure 6.
Figure 6.. Study physician Dr Ssembambulidde records material for CBS radio broadcasts.
Figure 7.
Figure 7.. Dr Kasibante, Dr Cresswell and Mr Tugume appear on NTV.
Figure 8.
Figure 8.. Dramatisation of meningitis illness by IDI drama group.
Figure 9.
Figure 9.. Cake cutting with the research team, study participants and IDI Executive Director.
See this image and copyright information in PMC

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