'[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
| Autor: | Sogol S. Javadi, Hursch Patel, Kelly E. Perry, Karine Dubé, Susan J. Little, Sara Gianella, Davey M. Smith, Andy Kaytes, Jeff Taylor, Kushagra Mathur, Susanna Concha-Garcia |
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| Přispěvatelé: | Fernández-Alcántara, Manuel |
| Rok vydání: | 2020 |
| Předmět: |
RNA viruses
Social Cognition Psychological Defense Mechanisms 0301 basic medicine Male Stress management Emotions Social Sciences HIV Infections Pathology and Laboratory Medicine Research Ethics Altruism 0302 clinical medicine Immunodeficiency Viruses Medicine and Health Sciences Psychology 030212 general & internal medicine Research Integrity Qualitative Research media_common Terminal Care Multidisciplinary Community engagement Collaborative learning Focus Groups Middle Aged Research Personnel Death Medical Microbiology Viral Pathogens Viruses Medicine HIV/AIDS Female Autopsy Pathogens Research Article Medical Ethics Adult Social Psychology Science Policy General Science & Technology Science media_common.quotation_subject education Clinical Trials and Supportive Activities Surgical and Invasive Medical Procedures Microbiology 03 medical and health sciences Nursing Clinical Research Retroviruses Gratitude Behavioral and Social Science Humans Social Behavior Microbial Pathogens Behavior Research ethics Lentivirus Organisms Cognitive Psychology Biology and Life Sciences HIV Focus group Altruistic Behavior Prosocial Behavior 030104 developmental biology Good Health and Well Being Cognitive Science Patient Participation Medical Humanities Medical ethics Neuroscience |
| Zdroj: | PloS one, vol 15, iss 11 PLoS ONE, Vol 15, Iss 11, p e0242420 (2020) PLoS ONE |
| Popis: | 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. |
| Databáze: | OpenAIRE |
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