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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 PhD, MSc, BSc, RCN*; Cox, Karen PhD, BSc, RGN, Onc Cert, DipHE, DN, FHEA; Mugerwa, Henry MSc (CEB), MBChB; Evans, Catrin PhD, MA, BSc, RGN

Journal of the Association of Nurses in AIDS Care: September-October 2019 - Volume 30 - Issue 5 - p e96–e108
doi: 10.1097/JNC.0000000000000057
Research Article
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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.”

Sylivia Nalubega, PhD, MSc, BSc, RCN, is a Lecturer, Soroti University, Soroti, Uganda. Karen Cox, PhD, BSc, RGN, Onc Cert, DipHE, DN, FHEA, is Professor, Vice Chancellor, and President of the University of Kent, Kent, United Kingdom. Henry Mugerwa, MSc (CEB), MBChB, is the Head of Research, Joint Clinical Research Centre, Kamplala, Uganda. Catrin Evans, PhD, MA, BSc, RGN, is Associate Professor, School of Health Sciences, University of Nottingham, Nottingham, United Kingdom.

Corresponding author: Sylivia Nalubega, e-mail: syliviaogwang@yahoo.com

Sponsorships or competing interests that may be relevant to content are disclosed at the end of this article.

© 2019 Association of Nurses in AIDS Care
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