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| Publication Abstract Display | | Type: Published Abstract | | Title: Altruism in end of life HIV research: Insights from the Last Gift Study. | | Authors: , Nathan A, Mathur K, Concha-Garcia S, Patel H, Kaytes A, Taylor J, Smith D, Gianella S | | Year: 2019 | | Publication: CROI | | Volume: Issue: Pages: | | Abstract:End-of-life (EOL) HIV cure-related research provides a novel approach to study HIV reservoirs and promising HIV cure research interventions. The Last Gift is a clinical research study at the University of California San Diego enrolling terminally ill persons living with HIV (PLWH) to contribute towards HIV cure science without personal benefits. As part of a socio-behavioral sub-study we elucidate motivations for participation and experiences while in the study.
The Last Gift study enrolled 7 participants since summer 2017 (n=7 males; aged 45–72 years). All were first-time HIV cure research participants but were not new to clinical research. Along with HIV, they had a terminal illness with a prognosis of <6 months. Ante-mortem procedures involved blood draws, baseline and follow-up interviews. Post-mortem procedures involved a rapid autopsy (<6 hours of death) to characterize the size, distribution and molecular characteristics of HIV reservoirs in various tissues. Results from the socio-behavioral interviews to Last Gift participants and their Next of Kin (NOK) were transcribed verbatim and coded using thematic analysis. Questions included (1) motivation for participation, (2) perceived benefits, (3) understanding of the study goals, (4) meaning of the Last Gift study, (5) post-mortem insights or concerns (NOK only).
Deep altruism (but not monetary compensation) was the main motivator to participation. All Last Gift participants and NOK expressed psychosocial benefits and meaningfulness from being part of the Last Gift study. Participants and NOK displayed a sophisticated understanding of the study and its purpose. NOK did not perceive any risks or ethical concerns towards study participation but would like to be included earlier in the process. The post-mortem interviews were emotional and overwhelmingly positive. NOK expressed that the study benefited the grieving process and they did not report any decisional regrets from Last Gift participants.
Interviews identified societal and psychological benefits to participation in the Last Gift study. Terminally ill PLWH valued the altruistic benefits and the deep sense of purpose of being an integral part of HIV cure research. Thus, we are encouraged to continue the development of our EOL research model. Results emphasize the importance of incorporating perceptions of family members, as well as socio-behavioral research methodologies to understand the effects of participation on everyone involved. |
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