Literature DB >> 32449625

"My Death Will Not [Be] in Vain": Testimonials from Last Gift Rapid Research Autopsy Study Participants Living with HIV at the End of Life.

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


  40 in total

1.  The ethics of altruism in clinical research.

Authors:  Lynn A Jansen
Journal:  Hastings Cent Rep       Date:  2009 Jul-Aug       Impact factor: 2.683

Review 2.  Medical Assistance in Death as a Unique Opportunity to Advance Human Immunodeficiency Virus Cure Research.

Authors:  Teslin S Sandstrom; Stephanie C Burke Schinkel; Jonathan B Angel
Journal:  Clin Infect Dis       Date:  2019-08-30       Impact factor: 9.079

3.  Tracking the rise of the "expert patient" in evolving paradigms of HIV care.

Authors:  Karina Kielmann; Fabian Cataldo
Journal:  AIDS Care       Date:  2010

4.  Live organ donation: social context, clinical encounter, and the psychology of communication.

Authors:  Owen S Surman; Isao Fukunishi; Terre Allen; Martin Hertl
Journal:  Psychosomatics       Date:  2005 Jan-Feb       Impact factor: 2.386

5.  Can research at the end of life be a useful tool to advance HIV cure?

Authors:  Sara Gianella; Jeff Taylor; Timothy R Brown; Andy Kaytes; Cristian L Achim; David J Moore; Susan J Little; Ronald J Ellis; Davey M Smith
Journal:  AIDS       Date:  2017-01-02       Impact factor: 4.177

6.  The gift of a lifetime: analysis of HIV at autopsy.

Authors:  Frank Maldarelli
Journal:  J Clin Invest       Date:  2020-04-01       Impact factor: 14.808

7.  Indirect Benefits in HIV Cure Clinical Research: A Qualitative Analysis.

Authors:  Adam Gilbertson; Elizabeth Poole Kelly; Stuart Rennie; Gail Henderson; JoAnn Kuruc; Joseph D Tucker
Journal:  AIDS Res Hum Retroviruses       Date:  2018-08-22       Impact factor: 2.205

8.  Acceptability of HIV cure-related trials: the challenges for physicians and people living with HIV (ANRS-APSEC).

Authors:  Marie Preau; Marjolaine Doumergue; Christel Protiere; Cécile Goujard; Marion Mora; Laurence Meyer; Jean-Daniel Lelievre; François Raffi; Bruno Spire; Olivier Lambotte; Marie Suzan-Monti
Journal:  AIDS Care       Date:  2018-01-18

9.  Participating in Human Immunodeficiency Virus Cure Research at the End of Life.

Authors:  Joshua J Vásquez; Peter W Hunt
Journal:  Clin Infect Dis       Date:  2019-08-30       Impact factor: 9.079

10.  Recruitment and ethical considerations in HIV cure trials requiring treatment interruption.

Authors:  Michael P Arnold; David Evans; Nelson Vergel
Journal:  J Virus Erad       Date:  2015-01-01
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  10 in total

1.  Willingness of Older Canadians with HIV to Participate in HIV Cure Research Near and After the End of Life: A Mixed-Method Study.

Authors:  David Lessard; Karine Dubé; Martin Bilodeau; Patrick Keeler; Shari Margolese; Ron Rosenes; Liliya Sinyavskaya; Madeleine Durand; Erika Benko; Colin Kovacs; Charlotte Guerlotté; Wangari Tharao; Keresa Arnold; Renée Masching; Darien Taylor; José Sousa; Mario Ostrowski; Jeff Taylor; Andy Kaytes; Davey Smith; Sara Gianella; Nicolas Chomont; Jonathan B Angel; Jean-Pierre Routy; Éric A Cohen; Bertrand Lebouché; Cecilia T Costiniuk
Journal:  AIDS Res Hum Retroviruses       Date:  2022-07-28       Impact factor: 1.723

2.  Perceptions of Risks and Benefits of Participating in HIV Cure-Related Research Among Diverse Young Adults Living with HIV in the United States: Qualitative Research Findings.

Authors:  Parya Saberi; Chadwick K Campbell; John A Sauceda; Samuel Ndukwe; Karine Dubé
Journal:  AIDS Res Hum Retroviruses       Date:  2022-06-28       Impact factor: 1.723

Review 3.  Lessons for Understanding Central Nervous System HIV Reservoirs from the Last Gift Program.

Authors:  Patricia K Riggs; Antoine Chaillon; Guochun Jiang; Scott L Letendre; Yuyang Tang; Jeff Taylor; Andrew Kaytes; Davey M Smith; Karine Dubé; Sara Gianella
Journal:  Curr HIV/AIDS Rep       Date:  2022-10-19       Impact factor: 5.495

4.  "It Can Be Hard But It's Not Bad": Three Questions to Solicit Caregiver Perceptions of Benefits and Burdens to Participating in Pediatric Palliative Care Research.

Authors:  Cheryl Reggio; Catriona Mowbray; Mia K Waldron; Adelaide L Rood; Gabriella Sibilia; Kim Mooney-Doyle; Pamela S Hinds
Journal:  J Palliat Med       Date:  2021-04-23       Impact factor: 2.947

Review 5.  Altruism: Scoping review of the literature and future directions for HIV cure-related research.

Authors:  Karine Dubé; Kelly E Perry; Kushagra Mathur; Megan Lo; Sogol S Javadi; Hursch Patel; Susanna Concha-Garcia; Jeff Taylor; Andy Kaytes; Lynda Dee; Danielle Campbell; John Kanazawa; David Smith; Sara Gianella; Judith D Auerbach; Parya Saberi; John A Sauceda
Journal:  J Virus Erad       Date:  2020-08-25

6.  Attitudes and perceptions of next-of-kin/loved ones toward end-of-life HIV cure-related research: A qualitative focus group study in Southern California.

Authors:  Sogol S Javadi; Kushagra Mathur; Susanna Concha-Garcia; Hursch Patel; Kelly E Perry; Megan Lo; Jeff Taylor; Andy Kaytes; Susan Little; Sara Gianella; Davey Smith; Karine Dubé
Journal:  PLoS One       Date:  2021-05-07       Impact factor: 3.240

7.  Ethical and practical considerations for HIV cure-related research at the end-of-life: a qualitative interview and focus group study in the United States.

Authors:  John Kanazawa; Sara Gianella; Susanna Concha-Garcia; Jeff Taylor; Andy Kaytes; Christopher Christensen; Hursch Patel; Samuel Ndukwe; Stephen A Rawlings; Steven Hendrickx; Susan Little; Brandon Brown; Davey Smith; Karine Dubé
Journal:  BMC Med Ethics       Date:  2022-01-11       Impact factor: 2.652

Review 8.  Ethics of HIV cure research: an unfinished agenda.

Authors:  Karine Dubé; John Kanazawa; Jeff Taylor; Lynda Dee; Nora Jones; Christopher Roebuck; Laurie Sylla; Michael Louella; Jan Kosmyna; David Kelly; Orbit Clanton; David Palm; Danielle M Campbell; Morénike Giwa Onaiwu; Hursch Patel; Samuel Ndukwe; Laney Henley; Mallory O Johnson; Parya Saberi; Brandon Brown; John A Sauceda; Jeremy Sugarman
Journal:  BMC Med Ethics       Date:  2021-06-30       Impact factor: 2.834

9.  "[It] is now my responsibility to fulfill that wish:" Clinical and rapid autopsy staff members' experiences and perceptions of HIV reservoir research at the end of life.

Authors:  Kelly E Perry; Jeff Taylor; Hursch Patel; Sogol Stephanie Javadi; Kushagra Mathur; Andy Kaytes; Susanna Concha-Garcia; Susan Little; Davey Smith; Sara Gianella; Karine Dubé
Journal:  PLoS One       Date:  2020-11-18       Impact factor: 3.240

10.  Ethical and practical considerations for interventional HIV cure-related research at the end-of-life: A qualitative study with key stakeholders in the United States.

Authors:  John Kanazawa; Sara Gianella; Susanna Concha-Garcia; Jeff Taylor; Andy Kaytes; Christopher Christensen; Hursch Patel; Samuel Ndukwe; Stephen Rawlings; Steven Hendrickx; Susan Little; Brandon Brown; Davey Smith; Karine Dubé
Journal:  PLoS One       Date:  2021-07-16       Impact factor: 3.240

  10 in total

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