| Literature DB >> 32449625 |
Kelly E Perry1, Karine Dubé1, Susanna Concha-Garcia2,3, Hursch Patel1, Andy Kaytes4, Jeff Taylor4,5, Sogol Stephanie Javadi2, Kushagra Mathur2, Megan Lo2, Brandon Brown6, John A Sauceda7, David A Wohl8, Susan Little2,9, Steven Hendrickx2, Stephen A Rawlings2,9, Davey M Smith2,9, Sara Gianella2,9.
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.Entities:
Keywords: HIV cure research; Last Gift; altruism; end of life; rapid research autopsy; sociobehavioral research
Mesh:
Year: 2020 PMID: 32449625 PMCID: PMC7703253 DOI: 10.1089/AID.2020.0020
Source DB: PubMed Journal: AIDS Res Hum Retroviruses ISSN: 0889-2229 Impact factor: 2.205