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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
- 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.
- Subjects :
- end of life
Male
Risk
0301 basic medicine
medicine.medical_specialty
media_common.quotation_subject
Clinical Sciences
education
Immunology
Human immunodeficiency virus (HIV)
Terminally ill
HIV Infections
Context (language use)
Last Gift
medicine.disease_cause
Altruism
03 medical and health sciences
Cognition
0302 clinical medicine
Clinical Research
Virology
Behavioral and Social Science
Gratitude
medicine
Humans
030212 general & internal medicine
Meaning (existential)
media_common
sociobehavioral research
humanities
HIV cure research
Death
030104 developmental biology
Infectious Diseases
altruism
Content analysis
Moral obligation
Family medicine
HIV/AIDS
Female
Sociobehavioral
Autopsy
rapid research autopsy
Psychology
Subjects
Details
- ISSN :
- 19318405 and 08892229
- Volume :
- 36
- Database :
- OpenAIRE
- Journal :
- AIDS Research and Human Retroviruses
- Accession number :
- edsair.doi.dedup.....b1072d2898012588f6ebf463816ea6f8