scholarly journals 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

PLoS ONE ◽  
2021 ◽  
Vol 16 (5) ◽  
pp. e0250882
Author(s):  
Sogol S. Javadi ◽  
Kushagra Mathur ◽  
Susanna Concha-Garcia ◽  
Hursch Patel ◽  
Kelly E. Perry ◽  
...  
Keyword(s):  
Focus Group ◽  
End Of Life ◽  
Personal Growth ◽  
Hiv Cure ◽  
Next Of Kin ◽  
Focus Group Study ◽  
Related Research ◽  
Small Focus ◽  
The University ◽  
Study Participants

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.

scholarly journals Ethical and practical considerations for HIV cure-related research at the end-of-life: a qualitative interview and focus group study in the United States

2022 ◽  
Vol 23 (1) ◽  
Author(s):  
John Kanazawa ◽  
Sara Gianella ◽  
Susanna Concha-Garcia ◽  
Jeff Taylor ◽  
Andy Kaytes ◽  
...  
Keyword(s):  
United States ◽  
End Of Life ◽  
Community Involvement ◽  
Ethical Issues ◽  
The United States ◽  
Hiv Cure ◽  
Undue Influence ◽  
Focus Group Study ◽  
Related Research ◽  
Context Specific

Abstract Background One of the next frontiers in HIV research is focused on finding a cure. A new priority includes people with HIV (PWH) with non-AIDS terminal illnesses who are willing to donate their bodies at the end-of-life (EOL) to advance the search towards an HIV cure. We endeavored to understand perceptions of this research and to identify ethical and practical considerations relevant to implementing it. Methods We conducted 20 in-depth interviews and 3 virtual focus groups among four types of key stakeholders in the United States (PWH, biomedical HIV cure researchers, HIV clinicians, and bioethicists) to obtain triangulated viewpoints because little was known about the ethics of this topic. Each group was queried as to ethical considerations, safeguards, and protections for conducting HIV cure-related research at the EOL to ensure this research remains acceptable. Results All four key stakeholder groups generally supported HIV cure-related research conducted at the EOL because of the history of altruism within the PWH community and the potential for substantial scientific knowledge to be gained. Our informants expressed that: (1) Strong stakeholder and community involvement are integral to the ethical and effective implementation, as well as the social acceptability of this research; (2) PWH approaching the EOL should not inherently be considered a vulnerable class and their autonomy must be respected when choosing to participate in HIV cure-related research at the EOL; (3) Greater diversity among study participants, as well as multi-disciplinary research teams, is necessitated by HIV cure-related research at the EOL; (4) The sensitive nature of this research warrants robust oversight to ensure a favorable risk/benefit balance and to minimize the possibility of therapeutic misconception or undue influence; and (5) Research protocols should remain flexible to accommodate participants’ comfort and needs at the EOL. Conclusion Because of the ethical issues presented by HIV cure-related research at the EOL, robust ethical safeguards are of utmost importance. The proposed ethical and practical considerations presented herein is a first step in determining the best way to maximize this research’s impact and social value. More much inquiry will need to be directed towards understanding context-specific and cultural considerations for implementing EOL HIV cure research in diverse settings.

scholarly journals Primary care physicians’ educational needs and learning preferences in end of life care: A focus group study in the UK

2017 ◽  
Vol 16 (1) ◽  
Author(s):  
Lucy Ellen Selman ◽  
Lisa Jane Brighton ◽  
Vicky Robinson ◽  
Rob George ◽  
Shaheen A. Khan ◽  
...  
Keyword(s):  
Primary Care ◽  
Focus Group ◽  
End Of Life ◽  
End Of Life Care ◽  
Primary Care Physicians ◽  
Educational Needs ◽  
Learning Preferences ◽  
Life Care ◽  
Focus Group Study ◽  
The Uk

The impact of existential vulnerability for nursing home doctors in end-of-life care: A focus group study

2016 ◽  
Vol 99 (12) ◽  
pp. 2043-2048 ◽  
Author(s):  
Kristian Jansen ◽  
Sabine Ruths ◽  
Kirsti Malterud ◽  
Margrethe Aase Schaufel
Keyword(s):  
Nursing Home ◽  
Focus Group ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Focus Group Study ◽  
The Impact

scholarly journals 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

PLoS ONE ◽  
2021 ◽  
Vol 16 (7) ◽  
pp. e0254148
Author(s):  
John Kanazawa ◽  
Sara Gianella ◽  
Susanna Concha-Garcia ◽  
Jeff Taylor ◽  
Andy Kaytes ◽  
...  
Keyword(s):  
United States ◽  
End Of Life ◽  
Community Support ◽  
The United States ◽  
Empirical Ethics ◽  
Hiv Care ◽  
Hiv Cure ◽  
Related Research ◽  
Stakeholder Groups ◽  
The Impact

Background A unique window of opportunity currently exists to generate ethical and practical considerations presented by interventional HIV cure-related research at the end-of-life (EOL). Because participants would enroll in these studies for almost completely altruistic reasons, they are owed the highest ethical standards, safeguards, and protections. This qualitative empirical ethics study sought to identify ethical and practical considerations for interventional HIV cure-related research at the EOL. Methods and findings We conducted 20 in-depth interviews and three virtual focus groups (N = 36) with four key stakeholder groups in the United States: 1) bioethicists, 2) people with HIV, 3) HIV care providers, and 4) HIV cure researchers. This study produced six key themes to guide the ethical implementation of interventional HIV cure-related research at the EOL: 1) all stakeholder groups supported this research conditioned upon a clearly delineated respect for participant contribution and autonomy, participant understanding and comprehension of the risks associated with the specific intervention(s) to be tested, and broad community support for testing of the proposed intervention(s); 2) to ensure acceptable benefit-risk profiles, researchers should focus on limiting the risks of unintended effects and minimizing undue pain and suffering at the EOL; 3) only well-vetted interventions that are supported by solid pre-clinical data should be tested in the EOL translational research model; 4) the informed consent process must be robust and include process consent; 5) research protocols should be flexible and adopt a patient/participant centered approach to minimize burdens and ensure their overall comfort and safety; and 6) a participant’s next-of-kin/loved ones should be a major focus of EOL research but only if the participant consents to such involvement. Conclusions To our knowledge, this empirical ethics study generated the first ethical and practical considerations for interventional HIV cure-related research at the EOL. The ethical complexities of such research must be considered now. We must navigate this ethical conundrum so that we are good stewards of the participants’ extremely altruistic gifts by maximizing the impact and social value of this research. We hope that this study will serve as the foundation for future research and discussion on this topic.

scholarly journals Students’ and professionals’ perceptions of test-driven development: a focus group study

2016 ◽  
Author(s):  
Giuseppe Scanniello ◽  
Simone Romano ◽  
Davide Fucci ◽  
Burak Turhan ◽  
Natalia Juristo
Keyword(s):  
Focus Group ◽  
Thematic Analysis ◽  
Qualitative Method ◽  
Future Research ◽  
Unit Testing ◽  
Qualitative Investigation ◽  
Focus Group Study ◽  
Test Driven Development ◽  
Testing Techniques ◽  
The University

We have conducted a qualitative investigation on test-driven development (TDD) with focus groups in order to develop insights on the opinions of developers using TDD regarding the unintuitive process involved, its claimed effects, as well as the context factors that can facilitate (or hinder) its application. In particular, we conducted two focus group sessions: one with professional developers and another with Master students in Computer Science at the University of Basilicata. We used thematic analysis template (TAT) method for iden- tifying patterns, themes, and interpretations in the gathered data. The application of this qualitative method allowed us to obtain a number of results that can provide directions for future research. Our main results can be summarized as follows: (i) applying TDD without knowing advanced unit testing techniques can be difficult; (ii) refactoring (one of the phases of TDD) is not done as often as the process re- quires; (iii) there is a need for live feedback to let developers understand if TDD is being applied correctly; and (iv) the usefulness of TDD hinges on task and domain to which it is applied to.

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