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'My Death Will Not [Be] in Vain': Testimonials from Last Gift Rapid Research Autopsy Study Participants Living with HIV at the End of Life

Authors :
David A. Wohl
Stephen A. Rawlings
Kelly E. Perry
Sara Gianella
Davey M. Smith
Sogol S. Javadi
Kushagra Mathur
Hursch Patel
John A. Sauceda
Susanna Concha-Garcia
Andy Kaytes
Megan Lo
Susan J. Little
Karine Dubé
Jeff Taylor
Steven Hendrickx
Brandon Brown
Source :
AIDS Res Hum Retroviruses, AIDS research and human retroviruses, vol 36, iss 12
Publication Year :
2020
Publisher :
Mary Ann Liebert Inc, 2020.

Abstract

End-of-life (EOL) HIV cure-related research provides a novel approach to studying HIV reservoirs. The Last Gift is a rapid autopsy research study at the University of California San Diego that enrolls terminally ill people living with HIV (PLWHIV) with a desire to contribute to HIV cure-related research. We conducted in-depth baseline and follow-up interviews with Last Gift study participants. We analyzed interview data applying conventional content analysis. Since summer 2017, 13 participants have been enrolled (n = 11 males and 2 females; aged 45-89 years) and 8 participants interviewed. Terminal illnesses included cancers, heart diseases, and neurodegenerative illnesses. Our analysis revealed five key themes: (1) The Last Gift study has tremendous meaning for participants at the end of their life. (2) HIV-specific altruism was a primary motivator to join the Last Gift study, nested within the context of community, scientific advancement, and moral obligation. (3) Participants did not expect physical benefits yet they perceived emotional/psychological, financial, and societal/scientific benefits. (4) There were minimal participant-perceived risks and concerns. (5) Last Gift participants expressed immense gratitude toward study staff. The Last Gift study provides a framework for ethical HIV cure-related research at EOL and highlighted participants' perspectives, motivations, and experiences. Knowing how PLWHIV understand and experience such studies will remain critical to designing ethical, fully informed HIV cure research protocols that are acceptable to PLWHIV.

Details

ISSN :
19318405 and 08892229
Volume :
36
Database :
OpenAIRE
Journal :
AIDS Research and Human Retroviruses
Accession number :
edsair.doi.dedup.....b1072d2898012588f6ebf463816ea6f8