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Moving to another world: understanding the impact of clinical trial closure on research participants living with HIV in Uganda

Nalubega, Sylivia; Cox, Karen; Cert, Onc; Mugerwa, Henry; Evans, Catrin

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Authors

Sylivia Nalubega

Karen Cox

Onc Cert

Henry Mugerwa

Dr CATRIN EVANS CATRIN.EVANS@NOTTINGHAM.AC.UK
Professor of Evidence Based Healthcare



Abstract

Despite an increasing need for clinical trials involving people living with HIV (PLWH), little is known about how PLWH experience trial closure, particularly in low-income countries, where the majority of trials take place. We sought to explore the impact of trial closure on PLWH in Uganda. This was an interpretive, grounded theory study using in-depth interviews, conducted between October 2014 and August 2015. Adult participants (N = 23) from 3 trials were included. The findings indicated that trial closure was represented as “moving to another world” and was an emotional transition, linked to a loss of quality care in the research environment, the need to find alternative health facilities, fear of experiencing unwanted side effects, a desire to receive trial feedback, and difficulties linking to posttrial care. We concluded that PLWH leaving trials in a resource-limited setting required holistic care to facilitate their transition back to “usual care.”

Citation

Nalubega, S., Cox, K., Cert, O., Mugerwa, H., & Evans, C. (2019). Moving to another world: understanding the impact of clinical trial closure on research participants living with HIV in Uganda. Journal of the Association of Nurses in AIDS Care, 30(5), e96-e108. https://doi.org/10.1097/JNC.0000000000000057

Journal Article Type Article
Acceptance Date Dec 17, 2018
Online Publication Date Jan 17, 2019
Publication Date Jan 17, 2019
Deposit Date Jan 2, 2019
Publicly Available Date Mar 29, 2024
Journal Journal of the Association of Nurses in AIDS Care
Print ISSN 1055-3290
Electronic ISSN 1552-6917
Publisher Elsevier
Peer Reviewed Peer Reviewed
Volume 30
Issue 5
Pages e96-e108
DOI https://doi.org/10.1097/JNC.0000000000000057
Keywords Advanced and Specialised Nursing
Public URL https://nottingham-repository.worktribe.com/output/1439960
Publisher URL https://journals.lww.com/janac/Abstract/publishahead/Moving_to_Another_World__Understanding_the_Impact.99963.aspx