stigma, vulnerable population, privacy, HIV, online focus group discussions, clinicians, medical students, nursing students
Mounting evidence suggests that key populations at risk for HIV who experience and/or anticipate stigma and discriminatory treatment from clinicians are less likely to initiate, engage in, and/or adhere to HIV care. Stigma is a significant barrier to HIV care in a Southeast Asian country where civil and religious laws criminalize same-sex relations, limit gender expression, and punish illicit drug use. Although 83% of people in this country living with HIV know their HIV status, the number is far lower for members of key populations. Less than half of men who have sex with men (MSM), transgender people, people who inject drugs (PWID), and female sex workers know their HIV status. Of additional concern, most members of key populations in this country are not being reached by HIV prevention programs.
Stigma in health care settings against members of key populations is associated with worse patient care. A research team in this country showed evidence of substantial prejudice, stereotypes, and intentions to discriminate against members of key populations among practicing medical doctors as well as medical and dental students. Toward developing a stigma reduction intervention, the researchers conducted online focus group discussions with 30 to 40 general practitioners and family medicine clinicians. The main goal of the focus groups was to learn about perspectives on stigma related to key populations in health care settings. Another goal of the focus groups was to understand opportunities and challenges for delivering stigma reduction intervention.
The research team chose an online communication platform (similar to Facebook) for the focus group sessions to minimize barriers to participation, allay privacy concerns, extend geographic reach, and accommodate COVID-19 pandemic–related concerns. The participants were invited to create an account with the platform. Access to the online group discussions was limited to the invited participants and research team. To maintain anonymity, participants were encouraged to create a screen name that was different from their actual name. The online focus group sessions were asynchronous, meaning that two questions were posted daily by a trained interviewer to a secure website over the course of 3 days. In turn, participants responded to questions at their convenience. During the sessions, the researchers introduced a video conference intervention to reduce stigma and answered questions about it, assessing reactions from the participants. Participants received compensation for their time.
The researchers conducted a detailed informed consent process with potential research participants. The consent form stated that practitioners might enjoy the opportunity to provide feedback on a new training program targeted to them. They were encouraged to avoid conversations that make them uncomfortable, skip questions, and end participation at any time. Although participants were given an option of not revealing their identity during the focus group sessions, many chose to disclose their identity. However, no personal identifiers were used during data analysis and publication to protect their confidentiality.
Questions
What risks of harm to participants and others are raised by the above case? What features of the research design either give rise to or help minimize those risks? What modifications might you suggest the researchers consider to further minimize associated risks?
To preserve anonymity of the participants, researchers ensured that no real names or other directly identifiable information were recorded. During the asynchronous online focus group discussions, some of the participants were reluctant to use pseudonyms or to be anonymous. Do you see any ethical issues when participants chose to not use pseudonyms, especially when the researchers had little control over the discussion content?
When researchers use a third party–owned online communication platform to facilitate data collection, what ethics and regulatory considerations should they consider in advance with respect to data ownership, access, and use? How would you suggest the researchers go about addressing and disclosing relevant information to participants about these considerations?
