{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,2,27]],"date-time":"2026-02-27T05:06:04Z","timestamp":1772168764742,"version":"3.50.1"},"update-to":[{"DOI":"10.12688\/aasopenres.13104.1","type":"new_version","label":"New version","source":"publisher","updated":{"date-parts":[[2020,10,29]],"date-time":"2020-10-29T00:00:00Z","timestamp":1603929600000}}],"reference-count":16,"publisher":"F1000 Research Ltd","license":[{"start":{"date-parts":[[2020,10,29]],"date-time":"2020-10-29T00:00:00Z","timestamp":1603929600000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100009250","name":"New Partnership for Africa's Development","doi-asserted-by":"publisher","award":["DEL-15-004"],"award-info":[{"award-number":["DEL-15-004"]}],"id":[{"id":"10.13039\/501100009250","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100009914","name":"Makerere University","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100009914","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100009660","name":"London School of Hygiene and Tropical Medicine","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100009660","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100011858","name":"African Academy of Sciences","doi-asserted-by":"publisher","award":["DEL-15-004"],"award-info":[{"award-number":["DEL-15-004"]}],"id":[{"id":"10.13039\/501100011858","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100004440","name":"Wellcome Trust","doi-asserted-by":"publisher","award":["210772\/Z\/18\/Z"],"award-info":[{"award-number":["210772\/Z\/18\/Z"]}],"id":[{"id":"10.13039\/100004440","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100004440","name":"Wellcome Trust","doi-asserted-by":"publisher","award":["107743"],"award-info":[{"award-number":["107743"]}],"id":[{"id":"10.13039\/100004440","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100014163","name":"Alliance for Accelerating Excellence in Science in Africa","doi-asserted-by":"publisher","award":["DEL-15-004"],"award-info":[{"award-number":["DEL-15-004"]}],"id":[{"id":"10.13039\/501100014163","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["aasopenresearch.org"],"crossmark-restriction":false},"short-container-title":["AAS Open Res"],"abstract":"<ns4:p>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.\u00a0These activities build upon decades of work in HIV community engagement and lays a platform for future research and engagement activities.<\/ns4:p>","DOI":"10.12688\/aasopenres.13104.2","type":"journal-article","created":{"date-parts":[[2020,10,29]],"date-time":"2020-10-29T10:40:07Z","timestamp":1603968007000},"page":"33","update-policy":"https:\/\/doi.org\/10.12688\/aasopenres.crossmark-policy","source":"Crossref","is-referenced-by-count":0,"title":["A Journey of Hope: giving research participants a voice to share their\u00a0experiences and improve community engagement around\u00a0advanced HIV disease in Uganda"],"prefix":"10.12688","volume":"3","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-5070-532X","authenticated-orcid":false,"given":"Fiona 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status","group":{"name":"current-referee-status","label":"Current Referee Status"}},{"value":"10.21956\/aasopenres.14203.r27765, Angela Kaida, Faculty of Health Sciences, Simon Fraser University, Burnaby, BC, Canada, 08 Sep 2020, version 1, 1 approved, 1 approved with reservations","URL":"https:\/\/aasopenresearch.org\/articles\/3-33\/v1#referee-response-27765","order":0,"name":"referee-response-27765","label":"Referee Report","group":{"name":"article-reports","label":"Article Reports"}},{"value":"<b>fiona cresswell<\/b>; \n<i>Posted: 18 Oct 2020<\/i>; \n<i>Many thanks for your positive feedback on our work and manuscript, gratefully received. We have corrected the language to PLHIV as suggested. Thank you for raising the important point of activity evaluations. The only event which we collected \u2018formal\u2019 feedback was for the circus event where exit interviews were conducted. At the healthcare worker \u2018knowledge exchange\u2019 events, we only received informal verbal feedback and it was not possible to evaluate the impact of the radio or TB event. In future events we like to create a formal feedback questionnaire so that improvements and suggestions can be documented and acted upon.&nbsp;<\/i>","URL":"https:\/\/aasopenresearch.org\/articles\/3-33\/v2#referee-comment-3166","order":1,"name":"referee-comment-3166","label":"Referee Comment","group":{"name":"article-reports","label":"Article Reports"}},{"value":"10.21956\/aasopenres.14264.r28105, Deborah Baron, Department of Health Behavior, University of North Carolina, Chapel Hill, NC, USA, 20 Nov 2020, version 2, indexed","URL":"https:\/\/aasopenresearch.org\/articles\/3-33\/v2#referee-response-28105","order":2,"name":"referee-response-28105","label":"Referee Report","group":{"name":"article-reports","label":"Article Reports"}},{"value":"This work was supported by the African Academy of Sciences (AAS) through a Makerere University\/Uganda Virus Research Institute Infection and Immunity Centre of Excellence (MUII-plus) endeavour award. MUII-plus is supported through the Developing Excellence in Leadership, Training and Science in Africa (DELTAS Africa) Initiative [DEL-15-004], which is an independent funding scheme of the AAS\u2019s Alliance for Accelerating Excellence in Science in Africa (AESA) and supported by the New Partnership for Africa\u2019s Development Planning and Coordinating Agency (NEPAD Agency) with funding from the Wellcome Trust [107743] and the UK Government.\n\nFVC is supported by the Wellcome Trust through a Clinical PhD Fellowship [210772\/Z\/18\/Z]. The events were funded through London School of Hygiene and Tropical Medicine (small grant for public engagement and continued development public engagement award) and Makerere University\/Uganda Virus Research Institute Infection and Immunity Centre of Excellence endeavour award. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.","order":3,"name":"grant-information","label":"Grant Information"},{"value":"This is an open access article distributed under the terms of the Creative Commons Attribution Licence, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.","order":0,"name":"copyright-info","label":"Copyright"}]}}