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Attitudes and perceptions of next-of-kin/loved ones toward end-of-life HIV cure-related research: A qualitative focus group study in Southern California.
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- Author(s): Javadi, Sogol S.1 (AUTHOR) ; Mathur, Kushagra1 (AUTHOR); Concha-Garcia, Susanna1,2 (AUTHOR); Patel, Hursch3 (AUTHOR); Perry, Kelly E.3 (AUTHOR); Lo, Megan1 (AUTHOR); Taylor, Jeff4,5 (AUTHOR); Kaytes, Andy4 (AUTHOR); Little, Susan1,6 (AUTHOR); Gianella, Sara1,6 (AUTHOR); Smith, Davey1,6 (AUTHOR); Dubé, Karine3 (AUTHOR)
- Source:
PLoS ONE. 5/7/2021, Vol. 16 Issue 5, p1-21. 21p.
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- Abstract:
As end-of-life (EOL) HIV cure-related research expands, understanding perspectives of participants' next-of-kin (NOK) is critical to maintaining ethical study conduct. We conducted two small focus groups and two one-on-one interviews using focus group guides with the NOK of Last Gift study participants at the University of California, San Diego (UCSD). Participating NOK included six individuals (n = 5 male and n = 1 female), including a grandmother, grandfather, partner, spouse, and two close friends. Researchers double-coded the transcripts manually for overarching themes and sub-themes using an inductive approach. We identified six key themes: 1) NOK had an accurate, positive understanding of the Last Gift clinical study; 2) NOK felt the study was conducted ethically; 3) Perceived benefits for NOK included support navigating the dying/grieving process and personal growth; 4) Perceived drawbacks included increased sadness, emotional stress, conflicted wishes between NOK and study participants, and concerns around potential invasiveness of study procedures at the EOL; 5) NOK expressed pride in loved ones' altruism; and 6) NOK provided suggestions to improve the Last Gift study, including better communication between staff and themselves. These findings provide a framework for ethical implementation of future EOL HIV cure-related research involving NOK. [ABSTRACT FROM AUTHOR]
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