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

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.; Hendrickx, Steven; Rawlings, Stephen A.; Smith, Davey M; Gianella, Sara

doi:10.1089/aid.2020.0020

Cited by 21 publications

(32 citation statements)

References 41 publications

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“…In our discussions, it was noted by a NOK that one participant did not feel comfortable declining blood draws, likely because he felt an obligation towards the study [ 23 ]. Among research participants, feelings of obligation may precipitate from a desire to reciprocate for care and attention received in the past [ 24 ].…”

Section: Discussionmentioning

confidence: 99%

“…According to NOK, by calming their worries and guiding them through the EOL process, the Last Gift team gave them greater confidence and less stress. Existing literature has shown that EOL conversations between family members and physicians may contribute to reducing depression and alleviating grief during the bereavement process [ 23 , 29 ]. Additionally, in a study by Aoun and colleagues, family members who felt supported by palliative care staff before the death of a loved one had a more positive bereavement experience [ 30 ].…”

Section: Discussionmentioning

confidence: 99%

“…Oftentimes, NOK feel responsible for protecting their loved ones from pain and stress at the EOL [ 23 , 39 ]. In our study, while participants had provided informed consent to undergo frequent blood draws and interviews at the EOL, NOK still felt the urge to intervene when they sensed that frequent study procedures could pose a potential for discomfort, either physically due to blood draws, or emotionally due to inopportune timing of interviews.…”

Section: Discussionmentioning

confidence: 99%

“…• The research design must remain sensitive to feelings of obligation or social desirability that participants may experience. As such, it is imperative for EOL study staff to emphasize that all parts of the study are optional and there will be absolutely no consequences for opting out or withdrawing [23][24][25] Perceived benefits of Last Gift study for NOK…”

Section: Ethical Conduct Of the Last Gift Studymentioning

confidence: 99%

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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

et al. 2021

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As end-of-life (EOL) HIV cure-related research expands, understanding perspectives of participants’ next-of-kin (NOK) is critical to maintaining ethical study conduct. We conducted two small focus groups and two one-on-one interviews using focus group guides with the NOK of Last Gift study participants at the University of California, San Diego (UCSD). Participating NOK included six individuals (n = 5 male and n = 1 female), including a grandmother, grandfather, partner, spouse, and two close friends. Researchers double-coded the transcripts manually for overarching themes and sub-themes using an inductive approach. We identified six key themes: 1) NOK had an accurate, positive understanding of the Last Gift clinical study; 2) NOK felt the study was conducted ethically; 3) Perceived benefits for NOK included support navigating the dying/grieving process and personal growth; 4) Perceived drawbacks included increased sadness, emotional stress, conflicted wishes between NOK and study participants, and concerns around potential invasiveness of study procedures at the EOL; 5) NOK expressed pride in loved ones’ altruism; and 6) NOK provided suggestions to improve the Last Gift study, including better communication between staff and themselves. These findings provide a framework for ethical implementation of future EOL HIV cure-related research involving NOK.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Ethical Conduct Of the Last Gift Studymentioning

confidence: 99%

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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

et al. 2021

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“…Due to the novel and potentially controversial nature of EOL HIV cure-related research, we are conducting extensive empirical research with Last Gift participants and their next-of-kin/ loved ones to understand their perceptions of such research [7,8]. To complement these perspectives, we implemented focus groups in order to understand the perspectives of clinical and rapid research autopsy staff members and the impact that the Last Gift study had on them.…”

Section: Introductionmentioning

confidence: 99%

“[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

Perry¹,

Taylor

Patel³

et al. 2020

PLoS ONE

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Introduction Little is known about the effects of HIV reservoir research at the end of life on staff members involved. Staff members’ perceptions and experiences were assessed related to their involvement in the Last Gift, a rapid autopsy study at the University of California San Diego enrolling people living with HIV who are terminally ill and have a desire to contribute to HIV cure-related research. Methods Two focus group discussions consisting of clinical (n = 7) and rapid research autopsy (n = 8) staff members were conducted to understand the perspectives of staff members and the impact the Last Gift rapid autopsy study had on them. The total sample consisted of 66.7% females and 33.3% males and was ethnically diverse (66.7% Caucasian, 6.7% African American, 20.0% Asian descent, 6.7% Hispanic descent and American Indian) with a range of experience in the HIV field from 1 year to 30 years. Results Qualitative focus group data revealed five major themes underlying study staff members’ multilayered mental and practical involvement: 1) positive perceptions of the Last Gift study, with sub-themes including Last Gift study participants’ altruism, fulfillment, and control at the end of life, 2) perceptions of staff members’ close involvement in the Last Gift study, with sub-themes related to staff members’ cognitive processing, self-actualization and fulfillment, stress management and resilience, coping mechanisms, and gratitude toward Last Gift participants and toward the study itself, 3) considerations for successful and sustainable study implementation, such as ethical awareness and sustained community and patient engagement, 4) collaborative learning and organizational processes and the value of interdependence between staff members, and 5) considerations for potential study scale-up at other clinical research sites. Discussion Understanding staff members’ nuanced emotional and procedural experiences is crucial to the Last Gift study’s sustainability and will inform similar cure research studies conducted with people living with HIV at the end of life. The study’s potential reproducibility depends on a robust research infrastructure with established, interdependent clinical and rapid autopsy teams, continuous community engagement, and an ethical and well-informed engagement process with people living with HIV.

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The Importance of Social Engagement in the Development of an HIV Cure: A Systematic Review of Stakeholder Perspectives

Noorman,

de Wit,

Marcos

et al. 2023

AIDS Behav

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As research into the development of an HIV cure gains prominence, assessing the perspectives of stakeholders becomes imperative. It empowers stakeholders to determine priorities and influence research processes. We conducted a systematic review of the empirical literature on stakeholder perspectives. PubMed, Embase, Web of Science, and Scopus were searched for empirical, peer-reviewed articles, published before September 2022. Our analysis of 78 papers showed that stakeholders could be divided into three categories: people with HIV, key populations, and professionals. Following thematic synthesis, two main themes were distinguished: stakeholders’ perspectives on HIV cure research and stakeholders’ perspectives on HIV cure. Research on perspectives on HIV cure research showed that stakeholders’ hypothetical willingness to participate (WTP) in HIV cure research was relatively high, while actual WTP was found to be lower. Studies also identified associated (individual) characteristics of hypothetical WTP, as well as facilitators and barriers to hypothetical participation. Additionally, we reported research on experiences of actual HIV cure research participation. Our analysis of stakeholder perceptions of HIV cure showed that most stakeholders preferred a cure that could eliminate HIV and outlined positive associated impacts. Furthermore, we observed that most included studies were conducted among PWHIV, and in the Global North. To empower stakeholders, we recommend that future research include an even greater diversity of stakeholders and incorporate theories of behavior to further explore how stakeholders decide to meaningfully engage in every stage of HIV cure research.

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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

Cited by 21 publications

References 41 publications

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

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

“[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

The Importance of Social Engagement in the Development of an HIV Cure: A Systematic Review of Stakeholder Perspectives

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