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

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: Jan 18, 2020
• 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