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“[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.

SUBMITTER: Perry K

PROVIDER: S-EPMC7673534 | biostudies-literature | 2020 Jan

REPOSITORIES: biostudies-literature

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Project description:BACKGROUND:There is extensive evidence that the role of nurse coordinators is beneficial for patients. Nurse coordinators are more available to patients compared to general registered nurses, know better to control symptoms and work as team players with multiple care providers. Despite its significance, there is a dearth of literature on the subject in Israel and a lack of clarity regarding the definitions of the role in terms of responsibilities and authorities. The aim of the study is to: To examine how the role of nurse oncology coordinator is implemented in various fields of oncology and to describe the actual performance of different kinds of oncology nurse coordinators and staff perceptions regarding this role in one tertiary hospital in Jerusalem. METHODS:A phenomenological approach was used to explore the participants' experiences and views of nurse coordinators' performance. We conducted a qualitative study using in-depth semi-structured interviews. Interviewees included 30 employees from different levels of the hospitals, and leading figures associated with oncology medicine outside of the hospital: Nurses and physicians of the Sharett Oncology Institute of Hadassah Ein Kerem Hospital in Jerusalem, the administrative staff of Hadassah Ein Kerem Hospital, head nurses of the Israel Cancer Association, the chairperson of the Non-Profit Organization of Oncology Nurses, nurse directors at the Ministry of Health Nursing Division, and seven nurse coordinators at Hadassah Ein Kerem Hospital in diverse fields of oncology. RESULTS:The nurse coordinator is perceived as an important staff member providing care to cancer patients. Several key elements were found to be common features in the work of all nurse coordinators: emotional support, guidance to patients, and coordination of patients' care. CONCLUSIONS:The nurse coordinator plays a noteworthy role in the health care system. In view of the variety of roles that the nurse coordinator assumes in different units, performance standards must be adapted to the performance areas for each unit, as well as nurses' professional development requirements. Changes in a service organization and careful attention to the continuum of care highlight the need to develop and to strengthen the role of a nurse who coordinates treatment over the entire continuum of care, both in the hospital and in the community.

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“[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

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