Cresswell, Fiona V;
Kasibante, John;
Martyn, Emily M;
Tugume, Lillian;
Stead, Gavin;
Ssembambulidde, Kenneth;
Rutakingirwa, Morris K;
... Elliott, Alison M; + view all
(2020)
A Journey of Hope: giving research participants a voice to share their experiences and improve community engagement around advanced HIV disease in Uganda [version 2; peer review: 2 approved].
AAS Open Research
, 3
, Article 33. 10.12688/aasopenres.13104.2.
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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.
| Type: | Article |
|---|---|
| Title: | A Journey of Hope: giving research participants a voice to share their experiences and improve community engagement around advanced HIV disease in Uganda [version 2; peer review: 2 approved] |
| Location: | England |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.12688/aasopenres.13104.2 |
| Publisher version: | http://dx.doi.org/10.12688/aasopenres.13104.2 |
| Language: | English |
| Additional information: | Copyright: © 2020 Cresswell FV et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. |
| Keywords: | Public engagement, advanced HIV diseases, clinical research, meningitis |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Epidemiology and Health UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Epidemiology and Health > Primary Care and Population Health |
| URI: | https://discovery.ucl.ac.uk/id/eprint/10184623 |
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