Assessing Client Factors Associated with Detectable HIV Viral Loads; and Models of Care the Ryan White HIV/AIDS Program

RWHAP Models of Care – Focus Group Guide

OMB Number: 0906-XXXX

Expiration Date: XX-XX-20XX

An agency may not conduct or sponsor, and a person is not required to respond to, a collection of information unless it displays a currently valid OMB control number.  The OMB control number for this project is 0906-XXXX.  Public reporting burden for this collection of information is estimated to average 90 minutes per focus group. Send comments regarding this burden estimate or any other aspect of this collection of information, including suggestions for reducing this burden, to HRSA Reports Clearance Officer, 5600 Fishers Lane, Room 14N39, Rockville, Maryland, 20857.

Attachment E: Ryan White HIV/AIDS Program Models of Care – Focus Group Guide

VERBAL CONSENT CONFIRMATION

Thank you all for agreeing to participate. My name is [NAME] and I work for Abt Associates, I’ll be the discussion leader for our group today. [NAME] is also with Abt Associates and will be taking notes during today’s group. The focus group will take about 90 minutes.

Let us get started by going over some ground rules for our discussion today.

• We ask that, to the extent possible, individuals speak one at a time so that we do not miss any information.

• Please be respectful of the opinions of others.

• We are not seeking agreement on anything in today’s group.

• Please respect one another’s privacy and do not share anything you hear in today’s focus group with anyone outside of the focus group.

• Feel free to ask me questions at any time.

For our discussion today, we are interested in hearing about where and how you get your health care and from which clinics, doctors, and other staff such as social workers. We are also interested in hearing about other support services you might get like case management and help with housing or transportation. We will talk about how easy or difficult it may be to get these different services. We are interested in hearing from you about your experiences or your peers’ experiences.

The information you provide in the interview will be kept confidential. Your name will not appear in any internal or published reports from the study. You can choose not to answer any of the questions and you may leave at any time.

We will provide a $20 gift card to [STORE NAME] to compensate you for the time spent participating in the focus group.

When I ask you, please provide a verbal “yes” to indicate that you have agreed to participate in the focus group.

1. Focus Group Participant Introductions

In this first section I would like to start by finding out more about you and your health coverage status.

1. Let us go around the room and do introductions. Please tell us:

• Your first name.

• How long you have been coming to this clinic.

• If you have health care coverage, for example, private insurance, Medicaid, VA or Medicare? Or no coverage?

2. HIV Medical Services

Now, please take a moment to think about the HIV medical services that you receive from this clinic. By HIV medical services, I mean services that are specifically related to your HIV like getting lab tests on your viral load or CD4 count.

1. Let us look at this chart of different HIV medical services that you might get. [SHOW FLIPCHART WITH A LIST OF POSSIBLE SERVICES] I will read off each service listed and I want you to tell me by show of hand, if you get the service here in the clinic, or if you go to another clinic for this?

HIV services	Received here in the clinic	Gets at another clinic
Orders for lab tests for viral load or CD4 count	#	#
Prescription for HIV medications	#	#
Visits with a provider about your HIV	#	#

2. Now think about the providers you see here at this clinic for your HIV care. Which provider(s) do you see (or communicate with) most often for your HIV care?

Probe: You can name the person or tell me if they are a doctor, nurse, pharmacist, or case manager.

1. Who at this clinic manages or takes care of your HIV?

Probes: Do you know the person’s name? Do you know if it is a doctor, nurse, physician assistant, or medical assistant? Is it the same person that you say you see the most?

3. Is there somewhere else you go to get HIV medical services besides this clinic?

1. If so, where? Why do you sometimes go to another clinic(s)?

Probes: Are there services that you need that this clinic does nothave? Is the other clinic more convenient to get to? Do you feel more comfortable with the staff at that other clinic?

4. Why do you choose to come to this clinic for some [if some go to more than this clinic], if not all, of your HIV care?

Probes: Location/convenience, staff, services offered, reputation, insurance accepted, referred by someone trusted, did not have a choice.

3. Non-HIV Medical Services

Next, we are going to discuss primary care services, mental health services, or other medical services that are not necessarily related to HIV care. This could include things like care for high blood pressure, diabetes, hepatitis, depression or anxiety, or any other medical issues not focused on HIV.

1. Now let us look at a list of services that are NOT related to HIV. [SHOW FLIPCHART WITH A LIST OF POSSIBLE NON-HIV MEDICAL SERVICES] We can call these non-HIV medical services. Again, I will read off each service listed and ask who gets this service here or at another clinic. Just raise your hand if it applies to you.

   Non-HIV medical services	Received here in the clinic	Gets at another clinic
   Care for conditions that you have for a long time, like high blood pressure, diabetes, or hepatitis	#	#
   Care for illnesses or injuries that last for a shorter time, like the flu or bronchitis	#	#
   Screening for cancer or other diseases	#	#
   Vaccines, like the flu shot or hepatitis C shot	#	#
   Mental health treatment	#	#
   Substance use services/treatment	#	#
   Help with quitting smoking	#	#

2. So how many of you come to this clinic for both your HIV care and your primary care or any of these services listed? By primary care I mean when you are sick or injured, unrelated to HIV.

3. Now think about who at this clinic provides the services that are NOT related to your HIV. Is the main provider for these services the same or different from the one that directs your HIV care?

Probes: Do you know the person’s name? Do you know if it is a doctor, nurse, physician assistant, or medical assistant? How many see a Primary Care Provider (PCP) in addition to your HIV provider? How many consider your HIV provider to be your PCP?

1. Does the clinician who you see for primary care also prescribe your HIV medications?

4. For those of you who have a PCP at another clinic, why do you go to that clinic(s) for non-HIV medical services? How often do you go to that other clinic?

Probes: Location/convenience, staff, services offered, reputation, insurance accepted, referred by someone trusted, did not have a choice.

1. How many more clinics do you have to go to see these other clinicians?

2. How many other clinicians do you have besides your PCP and HIV provider?

5. How do you prefer to receive your medical care?

Probes: Do you like to go to the same clinic, or different places for different services? Why?

1. Do you think that it is better for HIV clients to receive their HIV care and their other medical care at the same place? Why or why not?

4. Support Services

Now, let us talk about services you receive that are not strictly medical services. Here is a list of these kinds of services - [SHOW FLIPCHART BUT DO NOT GO THROUGH ITEMS ONE BY ONE DUE TO LARGE NUMBER OF ITEMS] – it includes anything from case management and housing assistance to transportation and food. I’ll refer to these services as “support services.”

1. First, let’s talk about if you get any of these support services here at this clinic or if you go somewhere else? Which of these do you get here at this clinic?

Probes: Or do you know if they offer any of these here?

1. How many of you go somewhere else for these support services?

2. Who at this clinic provides these services?

Probes: Do you know the person’s name? Do you know if it is a social worker, case manager, medical assistant, nurse, or other type of staff?

2.1 Or is there someone at this clinic that you see most often who coordinates you getting access to these services and talks to the different providers to arrange the services here?

3. Which services do you get at which place?

4. How do you decide where to go for these services?

Probe: Why do you choose to get your support services at the places where you get them?

E. Care Coordination

Now, let us talk about when your doctor refers you to see another clinician for something.

1. How many [show of hands] have ever been referred to a different clinician in this clinic?

1. Will someone share what they were referred for and describe the process?

Probes: Is there a clinician or staff person that helped you get to that other doctor or clinician here in the in the clinic? Do you know the person’s name? Do you know if it is a social worker, case manager, medical assistant, nurse, or other type of staff?

Probes: Did you have to have a referral slip or letter from your doctor or clinician to see the other clinician within the clinic? Did you have to fill out any paperwork?

2. How many [show of hands] have ever been referred to clinicians at a different clinic?

1. Will someone share what they were referred for and describe the process?

Probes: Is there a clinician or staff person that helped you get to that other doctor or clinician who was at the other clinic? Is that person who helped you here at this clinic or at the other clinic? Do you know the person’s name? Do you know if it is a social worker, case manager, medical assistant, nurse, or other type of staff?

Probes: Did you have to have a referral slip or letter from your doctor or clinician to see the other clinician within the clinic? Did you have to fill out any paperwork?

3. What makes it difficult for you to see a clinician at another clinic?

Probe: cost, proximity/transportation, job responsibilities, staff, poor relationship with the provider, health care coverage requires a referral, wait time for an appointment, limited appointment times

4. What makes it easy for you to see another clinician at another clinic?

Probes: What do you like about the other clinic? Proximity/transportation, accepts health care coverage, staff at other clinic, wait time for an appointment, number of appointment times

5. So which clinic would you consider your “main” clinic, like your home-based clinic? Is it this clinic or another clinic? Why do you consider it your “main” clinic?

F. Level of Comfort with Accessing Services

Now, I’d like to understand from you how judgment or sensitivity from the medical team has influenced your decision on where you go for your care. 

1. Have you ever been treated differently or unfairly by a doctor or, nurses, or clinic staff, because of your HIV status? Or did you feel judged?

2. How did that experience(s) influence where you go for HIV care, or medical care in general?

Probes: Have you ever avoided a clinic because of those experiences or because you were worried about people knowing you have HIV? 

3. What about cultural sensitivity?  By cultural sensitivity I mean respect for your individual background, race, ethnicity, religion, gender, etc. How does the clinic staff having cultural sensitivity make a difference for you in deciding where to get care?

Probes: Does it make a difference that the staff understand your culture or are from the same culture as you? 

4. [Moderator, based on what you’ve heard in the group about whether people go to multiple or one practice for their care probe specific individual situations, e.g. [NAME] you told us that have two sources of care, one for HIV and one for primary care.  Did judgment or cultural sensitivity have any influence on your decision where to get care?  [NAME another participant] what about you?

5. What can a clinic do to make their staff or services more sensitive or less judgmental? 

G. Ease of Accessing Services

Now please think about all the services that we have talked about so far – HIV medical services, non-HIV medical services, and support services. [REFERENCE FLIPCHARTS IN THE ROOM]

1. Which services are the most difficult for you to access? Why?

Probe: cost, transportation, job responsibilities, poor relationship with the provider, health care coverage requires a referral, wait time for an appointment

2. Which services are the easiest for you to access? Why?

Probes: Proximity/transportation, stable housing, financial aid.

3. Which services are most important in helping you take care of your HIV?

3. Are there services that you need that you do not receive now?

3. What can a clinic or provider do to help clients receive the services that they need?

Probes: What about the physical space in the clinic? Cultural background of the staff?

H. Closing

1. Are there any important points that you want to be sure we are aware of, that we did not talk about already?

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