“[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

Abstract

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.

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

“…While the potential scientific knowledge to be gained is vast by testing interventions in PWH at the EOL and the social value of this research is enormous [9,10], it is also rife with ethical concerns [8,11,12]. This manuscript builds upon our prior work which detailed ethical considerations for observational HIV cure-related research at the EOL [3,[13][14][15].…”

Lessons learned from the Last Gift study: ethical and practical challenges faced while conducting HIV cure-related research at the end of life

“…We have a separate sociobehavioural research component designed to examine the emotional effects of the programme on NOK/loved ones 12 17 and research staff. 18 In addition, a suggestion was made to create a grieving fund to support affiliated individuals who may need additional support.…”

“…Our research team recognises the possible benefits and risks to NOK/loved ones and research staff in sharing these non-professional spaces. We have a separate sociobehavioural research component designed to examine the emotional effects of the programme on NOK/loved ones12 17 and research staff 18. In addition, a suggestion was made to create a grieving fund to support affiliated individuals who may need additional support.…”

“…We also consulted UCSD research ethics committees and stakeholder groups, such as the UCSD AntiViral Center (AVRC) Community Advisory Board (CAB) advising on the study. Our team is also committed to robust qualitative research12 16–18 to understand how interested parties perceive HIV cure research at the EOL, including what they consider ethical and acceptable. We hope our critical reflections and ethical analysis will meaningfully contribute to the field of HIV cure-related research at the EOL and that our lessons learnt may prove beneficial for future similar or analogous studies.…”

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

“…The Last Gift program has employed a 360-degree approach to socio-behavioral sciences to understand perspectives and experiences of participants [ 126 ], next-of-kin/loved ones [ 71 , 127 ], clinical and rapid research autopsy staff [ 60 ], community members, and other stakeholders. This holistic approach helps ensure sensitive EOL research remains acceptable to various groups.…”