"[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

• Published in: PloS one 2020-11, Vol.15 (11), p.e0242420
• Main Authors: Perry, Kelly E, Taylor, Jeff, Patel, Hursch, Javadi, Sogol Stephanie, Mathur, Kushagra, Kaytes, Andy, Concha-Garcia, Susanna, Little, Susan, Smith, Davey, Gianella, Sara, Dubé, Karine
• Format: Article
• Language: English
• Subjects: Adult; AIDS research; Altruism; Analysis; Autopsies; Autopsy; Beliefs, opinions and attitudes; Biology and Life Sciences; Cognitive ability; Community involvement; Community participation; Death; Demographic aspects; Descent; Donations; End of life; Ethics; Female; Focus groups; Focus Groups - methods; HIV; HIV - pathogenicity; HIV Infections - metabolism; HIV patients; Human immunodeficiency virus; Humans; Infectious diseases; Information processing; Living wills; Male; Medical ethics; Medicine and Health Sciences; Middle Aged; Patient outcomes; Patient Participation - psychology; Public health; Public opinion; Qualitative analysis; Qualitative Research; Quality control; Research ethics; Research Personnel - psychology; Research scientists; Science Policy; Social Behavior; Social Sciences; Sustainability; Terminal care; Terminal Care - psychology; Terminal illnesses
• ISSN: 1932-6203; 1932-6203
• DOI: 10.1371/journal.pone.0242420

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. 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. 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. 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.