دورية أكاديمية
Perceived risks and benefits of enrolling people with HIV at the end of life in cure research in Southern California, United States
| العنوان: | Perceived risks and benefits of enrolling people with HIV at the end of life in cure research in Southern California, United States |
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| المؤلفون: | Karine Dubé, Brittany Shelton, Hursch Patel, Samuel O. Ndukwe, Susanna Concha-Garcia, Cheryl Dullano, Stephanie Solso, Steven Hendrickx, Andy Kaytes, Jeff Taylor, Thomas J. Villa, Susan J. Little, Patricia K. Riggs, David Lessard, Anish K. Arora, Cecilia T. Costiniuk, Shadi Eskaf, Davey M. Smith, Sara Gianella |
| المصدر: | Journal of Virus Eradication, Vol 9, Iss 2, Pp 100328- (2023) |
| بيانات النشر: | Elsevier, 2023. |
| سنة النشر: | 2023 |
| المجموعة: | LCC:Microbiology LCC:Public aspects of medicine |
| مصطلحات موضوعية: | HIV cure Research, End of life, Perceived risks, Perceived benefits, Last gift, Altruism, Microbiology, QR1-502, Public aspects of medicine, RA1-1270 |
| الوصف: | Introduction: Although current antiretroviral therapy allows most people with HIV (PWH) to experience normal longevity with a good quality of life, an HIV cure remains elusive due to HIV reservoir formation within deep tissues. An HIV cure remains highly desirable to the community of PWH. This study reports on the perceived risks and benefits of participation in the Last Gift study, a study aimed at characterizing HIV reservoirs via post-mortem autopsy, among PWH at the end of life (EOL) and their next-of-kin (NOK)/loved ones. Methods: Last Gift participants (PWH with a terminal illness and/or near the end of life) and their NOK/loved ones were surveyed for perceptions of risks, benefits, and meaning for participation in the Last Gift study. Results: The average age of the 17 Last Gift participants was 66.6 years, 3 were females, 1 person identified as Hispanic, and 15 as Caucasian. The average age of the 17 NOK/loved ones was 56.7 years, and relationships to Last Gift participants included partner/spouse, sibling, friend, child, parent, grandparent, and nephew. The only perceived personal risk of the Last Gift among participants was the blood draws (3/17). NOK/loved ones perceived the following risks: blood draws (2/17), physical pain (3/17), worry that something bad will happen (2/17), and unpleasant side effects (1/17). Participants in Last Gift and NOK/loved ones indicated the study had various positive social effects. For both participants and NOK/loved ones, the most frequent perceived personal benefit of the Last Gift was the satisfaction of supporting HIV cure research. Discussion: Participants perceived minimal personal and societal risks and valued the altruistic benefits of participating in the Last Gift study. Last Gift participants and NOK/loved ones were cautious about possible personal risks of EOL HIV cure research but still viewed that the emotional, psychological and societal benefits of participation outweighed potential risks. |
| نوع الوثيقة: | article |
| وصف الملف: | electronic resource |
| اللغة: | English |
| تدمد: | 2055-6640 |
| Relation: | http://www.sciencedirect.com/science/article/pii/S2055664023000146; https://doaj.org/toc/2055-6640 |
| DOI: | 10.1016/j.jve.2023.100328 |
| URL الوصول: | https://doaj.org/article/4efada383d2c44e395d7146547e72941 |
| رقم الأكسشن: | edsdoj.4efada383d2c44e395d7146547e72941 |
| قاعدة البيانات: | Directory of Open Access Journals |
Full Text Finder | تدمد: | 20556640 |
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| DOI: | 10.1016/j.jve.2023.100328 |