Background
Methods
Results
Conclusions

Background

• HIV counseling, testing, and referral (CTR) in non-health care settings complement HIV testing in medical settings, particularly for at-risk persons who may not typically access care in traditional clinical venues.
• CDC is updating the 2001 Revised Guidelines for HIV CTR specifically for use in non-health care settings. Study results will be used in conjunction with systematic literature reviews and recommendations from teleconferences and a consultation with external stakeholders.
• The objectives of this focus group study were to explore past and potential clients’ attitudes about and experiences with HIV CTR in non-health care settings.

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Methods

Sample

• 21 focus groups: Chicago, IL; Miami, FL; Los Angeles, CA; Raleigh-Durham, NC; and New York, NY
• Overall participant inclusion criteria:
  • Recent risk behavior or HIV-positive
• Specific sub-populations were recruited:
  • Heterosexual men
  • Heterosexual women
  • Men who have sex with men (MSM)
  • Injection drug users (IDU)
  • Transgender women
  • Male and female adolescents (15-19 years)
• For each sub-population, both HIV-positive and negative (recently tested and not recently tested) individuals were recruited.
• Passive recruitment conducted online (e.g., Craigslist) and by AIDS service and prevention organizations.

Focus groups

• Focus groups were segmented by age (15 adult groups, 6 adolescent groups), sub-population, HIV status, and recency of HIV test.
• Average focus group size: 9 participants (range 4-11)
• Discussion topics:
  • Facilitators and barriers to using CTR services
  • Ideal service components to decrease barriers to early diagnosis, decrease risk behaviors, link people with follow-up care, and ensure client rights
  • Perceived risks and benefits of CTR

Table 1. Demographic characteristics, n=186

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Results

Barriers to testing

• Barriers focused more on psychosocial rather than logistical issues. However, adolescents in particular were concerned about cost and reported that they may be too uncomfortable to ask about free tests.
• Denial, stigma, and fear of a positive diagnosis and the life-changes it would bring were primary reasons for not seeking an HIV test, despite risk

  “Many people don’t test because they don’t want to know: And that is the number one reason. No matter how much we push, they just don’t want to know.”
  —Transgender woman, HIV-positive, LA

• Given the high rate of sex work among transgender women, potential loss of income and vulnerability to violence were barriers to testing.

Facilitators for testing

• Reasons for testing ranged from self-motivation to required testing and were often multi-faceted.
  • Self-motivation: Want to know one’s status or starting a new relationship.
  • In response to perceived risk: Engaged in risk behaviors, peers testing positive, and symptoms of illness. Many HIV-positive participants suspected they were positive before testing.

  “Well, the number one reason seems to be they start getting symptoms and then they’re encouraged to [test]…In my case I went and got tested because I knew how I lived for a long time, so I found myself getting, you know, kind of serious with an old girlfriend of mine.”
  —Male, heterosexual, HIV-positive, Miami

  • External motivation: Incentives offered for testing and testing being encouraged by someone else (e.g., friend, physician).
  • Opportunistic: Adding HIV-testing with other medical services, routine screening, required testing for a job.

  “It was actually me and my partner,… we were [at the department of health], like we were just getting a screening for everything, she’s like, ‘Do you want an HIV test?’ so I was like, ‘Yep.’”
  —Male, adolescent, HIV-positive, NYC

Methods to encourage testing

• Participants recommended active outreach and advertising, with an emphasis on privacy and confidentiality.

  “Or the word ‘private’ used in a prominent way. Like where if you knew that, you know, if it said ‘Private, anonymous, and convenient,’ you know, where they made it like you could go anywhere and nobody’s really going to know why you’re there for the people that are like really nervous.”
  —Transgender, HIV-negative, Chicago

• Opinions differed on the use of incentives.

  “I think if you’re paying somebody to do something when it comes to their health, they might not walk away grasping exactly why they were there in the first place, and maybe a behavior change wouldn’t be promoted, or wouldn’t be really absorbed as well as it would be if I wanted to go on my own.”
  —Male, heterosexual, HIV-negative, Chicago

  “You would have a lot of drug users, you would have a lot of people who live on the street, and probably have a lot of unprotected sex. You would have a lot of those people who could use those stipends.”
  —Transgender woman, HIV-positive, Chicago

Comparisons of test settings

• Perceived benefits of non-health care settings:
  • Convenience
  • More time with a counselor
  • Empathetic counselor

  “I liked that it was someone that would seem like relatively my age. I thought pretty knowledgeable. Whatever question I had, they answered it. I don’t know. I was just comfortable. I mean, everything, the way we spoke was just like a conversation with a friend pretty much…They asked me the questions that they needed to ask. But then when we got into like the counseling, we started talking. It was just like we had a full-length conversation. I just felt really good.”
  —Male, heterosexual, HIV-negative, Chicago

• Many expressed preference for medical settings due to perceived greater privacy, test accuracy, hygiene, and professionalism.

  “It’s like at a hospital, a medical setting, like you get a piece of paper [informed consent] but at a health fair or whatnot, she’s like, “Oh, let me test you.” And then you get tested and it doesn’t seem as professional or, you know, locked in and finalized.””
  —Female, adolescent, HIV-negative, Raleigh-Durham

Informed consent

• Written informed consent was considered essential to protecting clients’ privacy and rights.
• Some felt requiring a name on the consent form could deter people from being tested, due to privacy concerns, which were pronounced.
• The concept of providing consent was not well understood by some adolescents. Some thought they needed someone else's consent. Parental involvement was often considered a barrier to testing.

Information before testing

• Participants agreed that basic test information, especially accuracy, and implications of test results should always be provided.
• Almost all agreed counselors should emotionally prepare clients for the test and a possibly reactive result.

  “I would want to know what kind of treatment is available if I am infected, to know that there is services out there and ones that I could afford or ones that I could go to.”

  “Now, you would want to know that before you were tested?”

  “Yes, to kind of prepare myself in the worst case scenario. That way, it eases the blow if I was infected, and if I were, now I know, all right, I’ve had a couple of days to think about this. This is the process I should be going through instead of just worrying"

  “Oh my gosh, I’m going to jump off a cliff or something, you know, because what am I going to do now?”
  —Male, heterosexual, HIV-negative, Chicago

Testing methodology

• Accuracy and quick results were most important, but many believed that one could not have both in a single test
• Generally rapid tests were perceived as less accurate than venipuncture and, thus, were less preferred.

  “…there’s a tradeoff between speed and accuracy. I don’t want something that comes back in twenty minutes and it isn’t accurate.”
  —Transgender woman, HIV-negative, NYC

Mobile CTR Units

Prevention counseling preferences

• Receptiveness to prevention counseling varied.

  “You know, at this point, when I am asked if I want the pre-counseling or whatever, I just say, ‘No, let’s just do it’….because I’ve heard it so many dozens of times but the first few times I was like intent on hearing every little thing and that’s what I wanted to know because, you know, when you don’t know, it’s kind of scary.”
  —MSM, HIV-negative, LA

  “I think [I would want prevention counseling] because sometimes when you go to a person you know already you could tell everything since you have confidence, but sometimes they stop you with good points. Like you don’t want to tell everything because it’s your friend… But when you go to somebody you don’t know, maybe you can say more and she could explain to you something that a friend can’t explain to you because your friend would say, ‘Oh, don’t worry, honey. I did that before.’”
  —Transgender woman, HIV-negative, NYC

After a non-reactive test

• Following non-reactive test results, participants wanted:
  • Behavioral prevention counseling
  • Referral to interventions, and support groups
  • Referral to drug treatment, rehab, or detox
  • Written copy of their results – Information regarding seroconversion “window” period and when to retest
• Some participants favored having a counselor follow-up with them every couple months.

  “Maybe a two month follow-up and [to have a counselor] say, you know, ‘How are you doing?’ Kind of opening the door for more conversation.”
  —Male, heterosexual, HIV-negative, Chicago

After a reactive test

• Information about HIV, emotional support and counseling, and referrals to medical care and support groups were considered essential by almost all participants.

  “… it felt like a ton of bricks fell down on me [testing HIV-positive]…. they sent in a counselor to speak with me, and she was real nice and she was telling me about all the resources, you know, “You’re not going to die now. Don’t even try to think that way or nothing like that…. there’s a lot of resource you can go to.” She put pamphlets in front of my face for me to read… and so that ton of bricks was lifted at that moment there. When I walked out of that medical center from her back to my dorm, I didn’t no longer feel that, that weight that fell down."
  —MSM, HIV-positive, Los Angeles

• HIV+ participants valued referral to financial assistance or benefits and either being referred to a person or a case manager instead of a service or organization

  “Like medical benefits and stuff. They sent me to a center that helps with getting housing and all the benefits that you can get… But it’s a process, and it’s such a long, inconsiderate process.”
  —Male, adolescent, HIV-positive, New York City

• When asked about a hypothetical HIV-positive diagnosis, participants with an unknown/HIV-negative status often reported pessimism about HIV and possible self-destructive behaviors.

  “There ain’t nothing they can do for you. Man, you’re screwed.”
  —Male, heterosexual, HIV-negative, Los Angeles

Recommendations for CTR in non-health care settings

•  A range of options:
  • Communities can offer a range of service options – medical and non-medical
  • Agencies should tailor services both to the client population and specific individual
• Enhancing uptake:
  • Improve community perceptions of staff qualifications, privacy, and test accuracy
  • Outreach and advertising to encourage self-motivation, increase perceptions of risk, and raise awareness of HIV treatment to attenuate fears of an HIV diagnosis
  • Enhanced motivation/incentives, but with caution – requires enhanced attention to preparing clients for results
  • Increase opportunities for unplanned testing in non-traditional settings
• Enhancing services:
  • Pre-test emphasis on client rights, preparing clients for testing and results (possibly positive), explaining accuracy of testing methodology, and serocoversion “window” period
  • Prevention counseling can support client risk reduction, but clients should be able to opt-out
  • Provide linkage to comprehensive services for HIV+ and HIV- clients
• Vulnerable populations:
  • Agencies should be aware of and sensitive to the unique needs of vulnerable populations, such as adolescents and transgender women.

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Conclusions

• Opinions regarding ideal CTR services in non-health care settings are diverse, suggesting the need for services tailored to the client.
• Acceptance of HIV-testing in non-health care settings can be increased through emphasis on staff qualifications, privacy, test accuracy, and the offer of other services, such as mental health counseling, drug treatment interventions, and other support.

Clockwise from top left: Mobile CTR Unit, CTR staff, Non-health-care Testing Facility, Health Fair Rapid Testing

¹ Centers for Disease Control and Prevention, Division of HIV/AIDS Prevention Atlanta, GA
² Research Triangle Institute, Research Triangle Park, NC

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