Focus Group Guide

[NCHHSTP] Understanding HIV/STD Risk and Enhancing PrEP Implementation Messaging in a Diverse Community-Based Sample of Gay, Bisexual, and Other Men Who Have Sex with Men in a Transformational Era

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Understanding HIV/STD Risk and Enhancing PrEP Implementation Messaging in a Diverse Community-Based Sample of Gay, Bisexual, and Other Men Who Have Sex with Men in a Transformational Era (MIC-DROP)



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Focus Group Guide English




















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Exploring Health Messaging and PrEP Preferences

Focus Group Guide


  • At least 3 participants in Focus Group

  • Focus group participants all completed consent

  • Recorders turned on

  • Moderator note: Probes are designed to facilitate conversation; not all probes will be used in each group. Ask probes that best reflect the conversation direction provided by participants.


RESPONDENT IDS: ________


MODERATOR INITIALS (XXX): _______


DATE: _________ START TIME: __:__AM/PM


Introduction and Focus Group Purpose


Welcome and thank you again for agreeing to participate in this focus group. My name is ________ and I am part of a research team working to understand different perspectives on HIV prevention. During our discussion we will be talking about sex, HIV, prevention, PrEP, and related topics. We want to hear about what you know, think and believe. There are no right or wrong answers. I want to hear, in your own words, your thoughts, experiences and opinions about the topics we’ll be discussing. Everyone’s input is important; I may call on you if you are being quiet. The study team will keep your answers and information secure and private, so feel free to speak your mind. We also ask that you not share comments you hear today with anyone outside of this group. You should know that there is the possibility that a focus group participant may not honor this request. I may need to cut a discussion short to get through all the questions.


Please remember that you can choose not to respond to a question at any time and that your participation in this study is completely voluntary. Does anyone have any questions before we begin?


  1. TOPIC: Show selected (e.g. 5-10) prevention messages from the message bank to the group through online polling functionality.

PROBES/ACTIVITIES

    1. I want to show you a set of prevention messages that we are considering for use in a future project. These will be delivered in a messaging app over time, for instance a person might receive one message sent per week. Please select your top 2 messages, based on what resonates with you or that you find most impactful.

    2. Can you explain why you selected a particular message to be among your favorites? (probe as needed to include different group members)

    3. Now please select 2 messages that you liked the least.

    4. Can any of you explain why you selected a particular message to be among your least favorites? (probe as needed to include different group members)


  1. TOPIC: Explore a selection of health positive messages from the messages bank

PROBES/ACTIVITIES

    1. Thank you for the discussion so far. We have found in the past that participants may tire of receiving messages, such as the ones we just discussed, that only directly relate to HIV prevention. As a reminder, participants might receive one such message each week for one year. We are interested in exploring whether providing other types of messages might improve interest and engagement. For instance, we might add messages with a different emphasis. Here is a sample of some messages (show 3-5 messages) affirming positive health that we could use. What are your thoughts overall on this concept?

    2. Now we are going to show you a series of messages. Please discuss what you like or dislike about each message.

    3. (after show a sample of messages). Were there any messages that were your favorites?

    4. Would occasionally receiving these health affirming messages change how you stay engaged in an HIV prevention messaging intervention?

    5. How often would you prefer to receive these affirming messages relative to the standard HIV prevention messages we presented earlier?


  1. TOPIC: Current understanding of PrEP modalities, and messaging needed for modalities

PROBES/ACTIVITIES

    1. Now we want to talk about PrEP. There are a number of possible ways that PrEP can be taken. Tell me about what the different ways you know a person can take PrEP?

      1. What have you heard of non-daily oral PrEP? What are your thoughts about this? (If unfamiliar, explain using Appendix A)

      2. Should we call it 2-1-1 PrEP or non-daily oral PrEP in public messaging?

      3. Here are messages about 2-1-1 PrEP. What do you think about these messages?

      4. Are there other messages you think people would like to hear about 2-1-1 PrEP?

    2. What have you heard of injectable PrEP? What are your thoughts about this? (If unfamiliar, explain using Appendix A)

    3. Here are messages about injectable PrEP. What do you think about these messages?

    4. Are there other messages you think people would like to hear about injectable PrEP?

    5. Have you heard of PEP? What are your thoughts on it, and messaging that should be used regarding it?

    6. PrEP prescriptions can be made available in different ways: local pharmacies, telemedicine, vans or mobile services, clinics, and LGBTQ-friendly health centers. What are your preference for PrEP provision locations, and why?


  1. TOPIC: Preference for side effects communication (including long-term use, how to communicate long-term safety given existing knowledge)

PROBES/ACTIVITIES

    1. Side effects are a common concern for PrEP users. What do you think are the side effects of PrEP?

    2. Here are some messages we have developed around PrEP side effects. What do you think about these messages? messages you prefer among these? and if there are any that you think we should avoid?

    3. What other concerns should we address with messaging about PrEP side effects? For instance, messages might address duration or side effects, types of side effects, or frequency of side effects.


  1. TOPIC: Preferences for formats messages might be received

PROBES/ACTIVITIES

    1. We can seek to communicate messages through formats standard to specific platforms: infographics for X (Twitter), brief videos for Youtube, brief texts for app notifications, and tiktok style formats. What formats do you think we should prioritize for health messaging, and why?

    2. What platforms would you prefer to receive health messages on: geosocial network apps (e.g. Grindr/Jack’d), social media platforms (Facebook, Instagram, Youtube), dedicated health apps, or other ways to receive messages?


  1. TOPIC: (For persons who have sought PrEP) Experiences with enhanced PrEP services

PROBES/ACTIVITIES

    1. In seeking or receiving PrEP care, have you been offered PrEP navigation, which includes appointment scheduling, care linkage, and financial assistance in getting the costs of PrEP drugs and laboratory services covered? Tell me about your experience with and thoughts about receiving these services?

    2. In receiving PrEP care, have you been offered supportive services, such as referral to mental health or other healthcare, linkage to various services such as housing support, food vouchers, substance use treatment? Tell me about your experience with and thoughts about receiving these services?

    3. If not received services: would you have wanted to receive this?

    4. Does receiving PrEP support services impact your PrEP seeking and staying in PrEP care?


  1. TOPIC: Awareness of ongoing efforts to promote PrEP

PROBES/ACTIVITIES

    1. Have you seen or heard any advertisements or messages about PrEP? What messages were perceived as helpful, what were not helpful?

    2. Do these messages impact your PrEP seeking or PrEP use?


  1. TOPIC: Explore new areas for messaging around PrEP that we should add/include, based on our discussion.

PROBES/ACTIVITIES

    1. What are new areas for PrEP messaging that should be added/made available?

    2. What are new areas for PrEP-related services that should be added/made available?


Moderator guidance: The goal of the focus group discussions is to better understand PrEP messaging content, including the perceived impact/efficacy of HIV prevention and PrEP messages. This also involves exploring areas of PrEP receipt to understand future areas of messaging. For this study, messaging is to be in the context of messages sent through a prevention platform such as an app. Note that not all probes must be asked or all activities conducted, depending on how topics may be covered naturally in participants’ discussions and emergent information as the focus groups are conducted. New probes may be developed by moderators based on information suggested by participants.




Appendix A: Information about PrEP modalities, provided if individuals or groups are unaware of these modalities

Pre-exposure prophylaxis (PrEP) is taking an antiretroviral medicine, either as a pill (also called Truvada or Descovy) or as an injection (also known as Apretude) given every 2 months, to reduce a person's chance of getting HIV.  PrEP helps prevent HIV infection for HIV-negative persons. PrEP is currently available in the form of (1) a daily pill, (2) on-demand or event-driven pill (2-1-1 pill dosing around the time of sex), and long-acting injectable administered by a provider every 2 months.  

Daily oral PrEP is a pill that a person who is HIV-negative takes every day in order to prevent getting HIV. PrEP is safe, but some people experience side effects like diarrhea, nausea, headache, fatigue, and stomach pain when taking a common PrEP medication. These side effects usually go away over time. You have to see a doctor or other healthcare provider to start daily oral PrEP and go back for check-ups once every 3 months to stay on it. Studies have shown that daily oral PrEP provides about 99% protection against HIV infection from sex when it is taken every day. 

There is a way that some people take PrEP pills called on-demand oral PrEP. On-demand oral PrEP is also known as “intermittent”, “2-1-1” or “event-driven” PrEP. With on-demand oral PrEP you take a series of pills around the time when you have sex. This means taking two pills 2 to 24 hours before sex, one pill 24 hours after the first dose, and one pill 24 hours after the second dose. Some studies found that on-demand PrEP is effective at preventing HIV infection.

A long-acting form of PrEP that is given as an injection in your buttocks once every 2 months has been found to be effective in preventing HIV infection. You would have to see a doctor or healthcare provider to start injectable PrEP and go back for check-ups once every 2 months to stay on it. The possible side effects of injectable PrEP are mild-to-moderate pain at the injection site that lasts 2 to 7 days, mild rash at the injection site that clears up on its own, or a headache that lasts a couple of days after injection. Studies have found that injectable PrEP is effective at preventing HIV infection. 

PEP, or post-exposure prophylaxis, is antiretroviral pills taken for 28 days only after having condomless sex for people not taking PrEP, to prevention HIV infection.  

Appendix B: Additional Messages

Messages about 2-1-1 PrEP

If you are considering stopping daily PrEP because you have sex less frequently, 2-1-1 PrEP is highly effective in preventing HIV and is a good option. Learn more here.

Consider talking to your doctor about 2-1-1 PrEP if you think this might be right for you. Non-daily PrEP is highly effective when taken on schedule.

Think that PrEP just isn’t right for you? There are many options, including non-daily dosing (2-1-1) and long-acting injectables. These can help address concerns about side effects or daily dosing. Find a doctor to discuss PrEP here.

Interested in minimizing the side effects of PrEP pills? 2-1-1 dosing might be right for you. Find out more here.

2-1-1 PrEP is when you take PrEP only when you have sex: two pills 2-24 hours before sex, one pill 24 hours after the initial dose, and one final pill 24 hours later. Find a PrEP provider here.

Messages about PrEP Side Effects

Did you know one study favorably compared the side effects of PrEP to Aspirin? PrEP side effects tend to be mild, and to go away after the first month of use.

Did you know that any long-term effects of being on PrEP, such as the rare case when people lose bone mineral density, reverse once you discontinue PrEP?

There are new formulations of PrEP that each have different side effects. Find one that works for you, talk to a PrEP provider today.

Did you know that different formulations of PrEP have different impact on weight loss and gain? Find out more here, or talk to your doctor.

Daily oral PrEP has “start-up” side effects, such as upset stomach, for the first month of use. After that period, most users do not have these types of side effects. Learn more about short-term PrEP side effects here.

Many people are concerned about the long-term effects of being on PrEP, but few are aware of the research showing that any negative impacts of taking PrEP reverse once you discontinue.

PrEP side effects can occur, but usually fade within the first month. Talk to your provider if you experience upset stomach, headache or vomiting that doesn’t go away.

Fever or chills are relatively rare side effects of PrEP use. Contact your doctor immediately if you experience these symptoms.

Messages about long-acting injectable PrEP

If taking pills doesn’t work for your life, there is a new PrEP option. Injectable PrEP prevents HIV without needing to take pills. Find a provider here.

If you have trouble remembering to take PrEP pills, injectable PrEP can give you full protection. Find out more here.



 


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