Table 1.

IRB-approved interview guide and focus group question route

Ethical and practical considerations for HIV cure-related research at the end-of-life
Introduction
Can you please describe your involvement in HIV (cure)-related research?
Are you familiar with the type of research discussed above? [If yes, move to next question. If no, discuss more]
What, if any, concerns do you have about this sort of research?
Do you think this research should be done [or not]? Why do you think/feel that way? Please explain
HIV cure-related research at the end of life (Ask for explanation after every answer: Why do you think/feel that way?)
What can be done to ensure these types of studies are implemented effectively?
What can be done to ensure these types of studies are implemented in an ethical way?
What can be done to ensure these studies remain patient/participant-centered?
What can be done to ensure these studies remain socially acceptable?
How should we navigate the potential conflicts between research aims and clinical care needs? Who should decide?
What about advance directives? How do they relate to the priority of the research aims?
What about palliative care? How does it relate to the priority of the research aims?
Additional considerations (Ask for explanation after every answer: Why do you think/feel that way?)
What should the role of the HIV care provider be in this type of research?
Do you think EOL research could also be relevant to other fields? Why or why not?
Do you think cultural differences play a part in how people view this research? If yes, how so?
How do you think COVID-19 might affect perceptions around rapid research autopsy programs?
What are the ethical issues brought about by medical-assistance-in-dying–now (MAiD) legal in California and Canada?
Wrap up and closing
Would you like to add anything or make additional comments?