"My Death Will Not [Be] in Vain": Testimonials from Last Gift Rapid Research Autopsy Study Participants Living with HIV at the End of Life
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 rese...
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| Veröffentlicht in: | AIDS research and human retroviruses 2020-12, Vol.36 (12), p.1071-1082 |
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| creator | Perry, Kelly E Dubé, Karine Concha-Garcia, Susanna Patel, Hursch Kaytes, Andy Taylor, Jeff Javadi, Sogol Stephanie Mathur, Kushagra Lo, Megan Brown, Brandon Sauceda, John A Wohl, David A Little, Susan Hendrickx, Steven Rawlings, Stephen A Smith, Davey M Gianella, Sara |
| description | 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 (
= 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. |
| doi_str_mv | 10.1089/AID.2020.0020 |
| format | Article |
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= 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.</description><identifier>ISSN: 0889-2229</identifier><identifier>EISSN: 1931-8405</identifier><identifier>DOI: 10.1089/AID.2020.0020</identifier><identifier>PMID: 32449625</identifier><language>eng</language><publisher>United States: Mary Ann Liebert, Inc</publisher><subject>Altruism ; Autopsies ; Autopsy ; Cardiovascular diseases ; Cognition ; Content analysis ; Coronary artery disease ; Death ; End of life ; Ethical standards ; Ethics ; Female ; Heart diseases ; HIV ; HIV Infections ; Human immunodeficiency virus ; Humans ; Illnesses ; Male ; Risk ; Sociobehavioral ; Terminal diseases</subject><ispartof>AIDS research and human retroviruses, 2020-12, Vol.36 (12), p.1071-1082</ispartof><rights>Copyright Mary Ann Liebert, Inc. Dec 2020</rights><rights>Copyright 2020, Mary Ann Liebert, Inc., publishers 2020 Mary Ann Liebert, Inc., publishers</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c415t-b5e36b8a3c600e8855d595440b80db0d702a5a63fd107e7fba8125d1f06bb35c3</citedby><cites>FETCH-LOGICAL-c415t-b5e36b8a3c600e8855d595440b80db0d702a5a63fd107e7fba8125d1f06bb35c3</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><link.rule.ids>230,314,776,780,881,27903,27904</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/32449625$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Perry, Kelly E</creatorcontrib><creatorcontrib>Dubé, Karine</creatorcontrib><creatorcontrib>Concha-Garcia, Susanna</creatorcontrib><creatorcontrib>Patel, Hursch</creatorcontrib><creatorcontrib>Kaytes, Andy</creatorcontrib><creatorcontrib>Taylor, Jeff</creatorcontrib><creatorcontrib>Javadi, Sogol Stephanie</creatorcontrib><creatorcontrib>Mathur, Kushagra</creatorcontrib><creatorcontrib>Lo, Megan</creatorcontrib><creatorcontrib>Brown, Brandon</creatorcontrib><creatorcontrib>Sauceda, John A</creatorcontrib><creatorcontrib>Wohl, David A</creatorcontrib><creatorcontrib>Little, Susan</creatorcontrib><creatorcontrib>Hendrickx, Steven</creatorcontrib><creatorcontrib>Rawlings, Stephen A</creatorcontrib><creatorcontrib>Smith, Davey M</creatorcontrib><creatorcontrib>Gianella, Sara</creatorcontrib><title>"My Death Will Not [Be] in Vain": Testimonials from Last Gift Rapid Research Autopsy Study Participants Living with HIV at the End of Life</title><title>AIDS research and human retroviruses</title><addtitle>AIDS Res Hum Retroviruses</addtitle><description>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 (
= 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.</description><subject>Altruism</subject><subject>Autopsies</subject><subject>Autopsy</subject><subject>Cardiovascular diseases</subject><subject>Cognition</subject><subject>Content analysis</subject><subject>Coronary artery disease</subject><subject>Death</subject><subject>End of life</subject><subject>Ethical standards</subject><subject>Ethics</subject><subject>Female</subject><subject>Heart diseases</subject><subject>HIV</subject><subject>HIV Infections</subject><subject>Human immunodeficiency virus</subject><subject>Humans</subject><subject>Illnesses</subject><subject>Male</subject><subject>Risk</subject><subject>Sociobehavioral</subject><subject>Terminal diseases</subject><issn>0889-2229</issn><issn>1931-8405</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2020</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><recordid>eNpdkU9v1DAQxSMEokvhyBWNyoVLlokdOw6HSktb2pWWPyqlHBCynMTpukrsxXaK9ivwqfGqpQIuM4f56c28eVn2vMB5gaJ-vVgezwkSnGMqD7JZUdMiFyWyh9kMhahzQki9lz0J4RoRa0LY42yPkrKsOWGz7NfB-y0caxXX8NUMA3xwEb691d_BWLhUxh68gQsdohmdNWoI0Hs3wkqFCKemj3CuNqaDcx208u0aFlN0m7CFz3HqtvBJ-Whas1E2BliZG2Ov4KdJm86Wl6AixLWGE9uB69O010-zR31aoZ_d9f3sy7uTi6OzfPXxdHm0WOVtWbCYN0xT3ghFW46ohWCsYzUrS2wEdg12FRLFFKd9V2Clq75RoiCsK3rkTUNZS_ezw1vdzdSMumu1jV4NcuPNqPxWOmXkvxNr1vLK3ciqQkoYTQKv7gS8-zGl78jRhFYPg7LaTUGSEjmrOBFFQl_-h167ydtkL1GcI8d0W6LyW6r1LgSv-_tjCpS7lKUyndylLHcpJ_7F3w7u6T-x0t_PO6HQ</recordid><startdate>20201201</startdate><enddate>20201201</enddate><creator>Perry, Kelly E</creator><creator>Dubé, Karine</creator><creator>Concha-Garcia, Susanna</creator><creator>Patel, Hursch</creator><creator>Kaytes, Andy</creator><creator>Taylor, Jeff</creator><creator>Javadi, Sogol Stephanie</creator><creator>Mathur, Kushagra</creator><creator>Lo, Megan</creator><creator>Brown, Brandon</creator><creator>Sauceda, John A</creator><creator>Wohl, David A</creator><creator>Little, Susan</creator><creator>Hendrickx, Steven</creator><creator>Rawlings, Stephen A</creator><creator>Smith, Davey M</creator><creator>Gianella, Sara</creator><general>Mary Ann Liebert, Inc</general><general>Mary Ann Liebert, Inc., publishers</general><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>7QL</scope><scope>7T2</scope><scope>7T5</scope><scope>7T7</scope><scope>7TK</scope><scope>7U7</scope><scope>7U9</scope><scope>8FD</scope><scope>C1K</scope><scope>FR3</scope><scope>H94</scope><scope>M7N</scope><scope>P64</scope><scope>7X8</scope><scope>5PM</scope></search><sort><creationdate>20201201</creationdate><title>"My Death Will Not [Be] in Vain": Testimonials from Last Gift Rapid Research Autopsy Study Participants Living with HIV at the End of Life</title><author>Perry, Kelly E ; Dubé, Karine ; Concha-Garcia, Susanna ; Patel, Hursch ; Kaytes, Andy ; Taylor, Jeff ; Javadi, Sogol Stephanie ; Mathur, Kushagra ; Lo, Megan ; Brown, Brandon ; Sauceda, John A ; Wohl, David A ; Little, Susan ; Hendrickx, Steven ; Rawlings, Stephen A ; Smith, Davey M ; Gianella, Sara</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c415t-b5e36b8a3c600e8855d595440b80db0d702a5a63fd107e7fba8125d1f06bb35c3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2020</creationdate><topic>Altruism</topic><topic>Autopsies</topic><topic>Autopsy</topic><topic>Cardiovascular diseases</topic><topic>Cognition</topic><topic>Content analysis</topic><topic>Coronary artery disease</topic><topic>Death</topic><topic>End of life</topic><topic>Ethical standards</topic><topic>Ethics</topic><topic>Female</topic><topic>Heart diseases</topic><topic>HIV</topic><topic>HIV Infections</topic><topic>Human immunodeficiency virus</topic><topic>Humans</topic><topic>Illnesses</topic><topic>Male</topic><topic>Risk</topic><topic>Sociobehavioral</topic><topic>Terminal diseases</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Perry, Kelly E</creatorcontrib><creatorcontrib>Dubé, Karine</creatorcontrib><creatorcontrib>Concha-Garcia, Susanna</creatorcontrib><creatorcontrib>Patel, Hursch</creatorcontrib><creatorcontrib>Kaytes, Andy</creatorcontrib><creatorcontrib>Taylor, Jeff</creatorcontrib><creatorcontrib>Javadi, Sogol Stephanie</creatorcontrib><creatorcontrib>Mathur, Kushagra</creatorcontrib><creatorcontrib>Lo, Megan</creatorcontrib><creatorcontrib>Brown, Brandon</creatorcontrib><creatorcontrib>Sauceda, John A</creatorcontrib><creatorcontrib>Wohl, David A</creatorcontrib><creatorcontrib>Little, Susan</creatorcontrib><creatorcontrib>Hendrickx, Steven</creatorcontrib><creatorcontrib>Rawlings, Stephen A</creatorcontrib><creatorcontrib>Smith, Davey M</creatorcontrib><creatorcontrib>Gianella, Sara</creatorcontrib><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>Bacteriology Abstracts (Microbiology B)</collection><collection>Health and Safety Science Abstracts (Full archive)</collection><collection>Immunology Abstracts</collection><collection>Industrial and Applied Microbiology Abstracts (Microbiology A)</collection><collection>Neurosciences Abstracts</collection><collection>Toxicology Abstracts</collection><collection>Virology and AIDS Abstracts</collection><collection>Technology Research Database</collection><collection>Environmental Sciences and Pollution Management</collection><collection>Engineering Research Database</collection><collection>AIDS and Cancer Research Abstracts</collection><collection>Algology Mycology and Protozoology Abstracts (Microbiology C)</collection><collection>Biotechnology and BioEngineering Abstracts</collection><collection>MEDLINE - Academic</collection><collection>PubMed Central (Full Participant titles)</collection><jtitle>AIDS research and human retroviruses</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Perry, Kelly E</au><au>Dubé, Karine</au><au>Concha-Garcia, Susanna</au><au>Patel, Hursch</au><au>Kaytes, Andy</au><au>Taylor, Jeff</au><au>Javadi, Sogol Stephanie</au><au>Mathur, Kushagra</au><au>Lo, Megan</au><au>Brown, Brandon</au><au>Sauceda, John A</au><au>Wohl, David A</au><au>Little, Susan</au><au>Hendrickx, Steven</au><au>Rawlings, Stephen A</au><au>Smith, Davey M</au><au>Gianella, Sara</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>"My Death Will Not [Be] in Vain": Testimonials from Last Gift Rapid Research Autopsy Study Participants Living with HIV at the End of Life</atitle><jtitle>AIDS research and human retroviruses</jtitle><addtitle>AIDS Res Hum Retroviruses</addtitle><date>2020-12-01</date><risdate>2020</risdate><volume>36</volume><issue>12</issue><spage>1071</spage><epage>1082</epage><pages>1071-1082</pages><issn>0889-2229</issn><eissn>1931-8405</eissn><abstract>End-of-life (EOL) HIV cure-related research provides a novel approach to studying HIV reservoirs. 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= 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.</abstract><cop>United States</cop><pub>Mary Ann Liebert, Inc</pub><pmid>32449625</pmid><doi>10.1089/AID.2020.0020</doi><tpages>12</tpages><oa>free_for_read</oa></addata></record> |
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| ispartof | AIDS research and human retroviruses, 2020-12, Vol.36 (12), p.1071-1082 |
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| source | MEDLINE; Alma/SFX Local Collection |
| subjects | Altruism Autopsies Autopsy Cardiovascular diseases Cognition Content analysis Coronary artery disease Death End of life Ethical standards Ethics Female Heart diseases HIV HIV Infections Human immunodeficiency virus Humans Illnesses Male Risk Sociobehavioral Terminal diseases |
| title | "My Death Will Not [Be] in Vain": Testimonials from Last Gift Rapid Research Autopsy Study Participants Living with HIV at the End of Life |
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