ArticlePloS one2020
"[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.
Article in PloS one, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 papers, 2 of them syntheses that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
16 citing papers in PubMed, 2 syntheses or guidelines pooled it, 13 citations in OpenAlex.
- Determinants of Interest-Holder Perspectives Toward Post-Mortem Tissue Donation in Oncology: A Systematic Review.Psycho-oncology · 2026Pooled it
- The Importance of Social Engagement in the Development of an HIV Cure: A Systematic Review of Stakeholder Perspectives.AIDS and behavior · 2023Pooled it
- Ethical frameworks and community engagement in HIV cure-related research at the end of life: looking back, moving forward.Current opinion in HIV and AIDS · 2026Article
- Mapping opioid exposure through prescription data and postmortem analysis of opioid drugs in multiple tissues.British journal of clinical pharmacology · 2026Article
- The brain as an HIV reservoir: Recent findings using autopsy tissues from people with HIV.PLoS pathogens · 2026Review
- Intersectionality-Informed HIV Cure-Related Research at the End of Life: A Call to Action.International journal of environmental research and public health · 2026Article
- Seeing the human behind the sample: How compassion training shaped inner awareness, relationships, and workplace meaning in HIV end-of-life research.Palliative care and social practice · 2026Article
- Integrating socio-behavioral, ethics, community, and translational science considerations in HIV cure research.Current opinion in HIV and AIDS · 2025Review
- Experts' attitudes towards 'targeted autopsies' using qualitative interviews in a medical network in Germany.BMJ open · 2025Article
- Motivations, acceptability and ethical considerations for interventional HIV cure research at the end of life: perspectives from long-term survivors of HIV in the United States.BMC medical ethics · 2025Article
- Perceived risks and benefits of enrolling people with HIV at the end of life in cure research in Southern California, United States.Journal of virus eradication · 2023Article
- Lessons learned from the Last Gift study: ethical and practical challenges faced while conducting HIV cure-related research at the end of life.Journal of medical ethics · 2023Article
- A Community-Driven Framework to Prioritize the Use of Donated Human Biological Materials in the Context of HIV Cure-Related Research at the End of Life.Pathogens & immunity · 2023Article
- Lessons for Understanding Central Nervous System HIV Reservoirs from the Last Gift Program.Current HIV/AIDS reports · 2022Review
- 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.BMC medical ethics · 2022Article
- Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
11 authors at 2 institutions in 1 country.
Funding
Abstract
introductionLittle 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.
methodsTwo 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.
resultsQualitative 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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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.