After the research, it’s like we have closed the contract”: Transitioningbeyond trials and unveiling healthcare perspectives and practices forpost-trial participants in HIV clinical trials in Tanzania by Rose Mwangi 1*, Ester Mshana2, Debora Kajeguka1, Blandina Mmbaga1,2,3, Rachel Manongi1,

Abstract

Background: The fight against HIV/AIDS has seen significant progress through
rigorous research and clinical trials. However, the post-trial transition from research
to routine care remains underexplored, offering unique insights into healthcare
practices on transitioning HIV patients from research-controlled environment to
standard care.

Methods: To investigate the experiences of healthcare workers responsible for
transitioning HIV-positive individuals from clinical trials to standard care, the study
employed a phenomenographic qualitative methodology. Healthcare professionals
from diverse backgrounds were purposively selected from a referral hospital;
Kilimanjaro Christian Medical Center and interviewed. The interviews were taperecorded and later transcribed verbatim. Data analysis was conducted using NVivo
12, and findings were reported thematically.

Findings: Healthcare workers emphasized the significance of referral letters as
essential tools to ensure continuity of care during the transition from research
settings to routine healthcare. Emotional challenges, including sadness and worry
among participants due to perceived loss of intensive care during trials were
reported. Complexities in post-trial care such as societal stigma, disparities in
medication between the context of research and standard care medication and
adherence issues were revealed, along with coping strategies employed by
participants. There was emphasis for effective communication and post-trial
engagement between researchers and participants, including access to study results
and ongoing support.

Conclusion: The study highlights a gap between clinical research and healthcare
practice in transitioning participants from HIV studies to standard care. The study
raises ethical concerns regarding equitable treatment and the need for improved
integration of research outcomes into healthcare practices. The findings emphasize
the need for a more patient centered approach to ensure the ongoing care of HIV positive individuals both during clinical trials and afterward.