CATALYST FAQ

What is the purpose of this study?

The goal of this study is to explore what Black women living with HIV in the South think about new forms of HIV treatment, especially the currently approved long-acting injectable form. We will be conducting interviews with Black women with HIV in the South to hear their perspectives, opinions, and thoughts. We aim to use study findings to improve services and access to HIV treatment. This study is called “CATALYST”, and it is being conducted in partnership with the Centers for Disease Control and Prevention (CDC).

How will this study benefit me or others like me?

Participating in this study will not directly benefit you, though it may support future access to HIV-related care and services for Black women living with HIV in the South.

How will my personal information be protected?

If you consent to participate in the study, your personal information will be protected by encryption and only available to trained study staff to contact you directly for scheduling, compensation, and potentially future opportunities for research. Your interview data will not include any personally identifying information, rather it will be linked by a unique participant identification number.

Will anyone in my community know I am participating?

We take your privacy and confidentiality very seriously. Nobody in your community has to know that you are participating, and you can choose to tell who you would like. We will not discuss your involvement in the study with anyone outside of study team. However, it is up to you if you want to share your involvement in the study with family, friends or community members.

Will my HIV status be kept confidential?

Yes, your HIV status will be kept confidential. We will ask you for your preferred contact method and will not mention “HIV” in ways that could risk your confidentiality. For example, if your preferred method is text messages, we will not mention “HIV” in the message, and when we call you, we will ask you if you are in a private space to talk. The interview will be conducted in a private space (usually at a nearby clinic) and if you have a virtual interview, we will ask that you find a time and space that is private.

Will participating in this study affect my HIV care or medications?

This study will not affect any HIV care or medications that you are currently receiving or could receive in the future.

Are there any risks involved in this study?

All studies have some risks. Some risks are relatively small, like being bored or spending time. Some are more serious. Risks for this study include, emotional discomfort talking about potentially sensitive topics (e.g., living with HIV, mental health, stigma), loss of privacy, and breach of confidentiality. Please see the above questions on privacy and confidentiality to read about the protections we have in place to reduce these risks.

What will I have to do during the study?

You will participate in an in-person interview that will take about one hour. We will ask you to share your thoughts and opinions on new forms of HIV treatment. We are especially interested in what you think about long-acting injectable forms of HIV treatment. If you complete the first interview, then you may be eligible for a second interview, which will take place virtually about one year later. 

How much time will I need to commit?

Each interview will be about one hour. The first interview will be in person, you will have to also factor in time to travel to and from your local clinic where the interview will be conducted. If you are eligible for the second interview, then that interview will be virtual.

Will I be paid for participating?

Each participant will receive $75 per interview completed. Participants who complete an in-person interview will receive funds for transportation assistance. Tax information is not required.

What other resources will I have access to during the study?

During the study, you will have access to a list of various social service resources available in your local area. This list can be provided to you by the CATALYST research coordinator upon request.

How is this study tailored to Black women like me?

The study design and materials have been carefully reviewed by members of a Community Advisory Board consisting of Black women with HIV living in the South. Their feedback has been thoroughly incorporated to ensure the study is properly tailored to Black women.

Are the researchers and staff trained to understand my background and concerns?

The researchers and study staff have received training in research ethics and confidentiality as well as cultural competency as required by Emory University. If you require additional support, please let the CATALYST research coordinator know and we can connect you to available resources in your local area.

How can I learn about the study outcomes?

While we will not share individual study results with participants, we will develop a short summary of the initial study findings. We can share these with participants who are interested. Presentations based on the study findings will be developed and presented to the community. Future papers could be shared once published upon request.

Has this study been reviewed by experts?

This study has been reviewed by an ethics committee to ensure that research participants are protected. The study design and data instruments have been reviewed by the Community Science Advisory Board which is made up of individuals in the community and the Emory Study Team.

How do I report a concern or problem during the study?

If you have questions or concerns about the research or your part in it during the study, you can contact the CATALYST Study staff at 404-477-4719 or catalyst@emory.edu, or the Principal Investigator of the Study, Dr. Lauren Collins at 404-616-6816 or at lauren.frances.collins@emory.edu. If you have questions about your rights as a research participant, or if you have complaints about the research or an issue you would rather discuss with someone outside the research team, contact the Emory Institutional Review Board at 404-712-0720 or 877-503-9797 or irb@emory.edu.