Optimizing Community-Based HIV Testing and Linkage to Care for Young Persons in Metropolitan Atlanta

Abstract

HIV continuum of care analyses in Georgia during 2013 revealed that 82% of adolescents and adults living with HIV knew their diagnosis and that 75% were linked to care. However, of all persons in Georgia living with HIV in 2014, only 60% had at least one HIV care visit, and just 48% were retained in care. Understanding barriers for HIV testing, linkage, and retention in youth may strengthen HIV-related encounters and improve patient outcomes. We conducted 17 qualitative focus groups with HIV-positive and -negative youth, ages 18–24 years, from the Atlanta Metropolitan Statistical Area. Using computer-assisted thematic analyses, we examined focus group responses on ways to approach youth for community-based HIV testing and how service providers should discuss a new positive HIV diagnosis with youth. Of 68 participants, 85% were male, 90% were African American, 68% were HIV positive, and 50% had high school education or less. Mean age was 21.5 years (standard deviation: 1.8 years). Thematic analyses identified the following three key themes for approaching someone for HIV testing: (1) discretion, (2) being candid about testing, and (3) incentivizing testing. When service providers discuss an HIV positive test, participants recommended enhanced emotional support and reassurance of a potential healthy life span despite an HIV diagnosis. Community-based testing may be a viable option for increasing HIV screening of at-risk youth. Structuring an empathetic new diagnosis disclosure that addresses potential misconceptions and describes successful HIV treatment is essential to improving linkage to care among youth.

Introduction

Annual HIV infections in the United States declined 18% from 2008 to 2014.¹ However, HIV infection among youth remains a serious public health concern in the United States, with individuals aged 13–24 years accounting for more than one in five new HIV diagnoses in 2014.² Further, the Centers for Disease Control and Prevention (CDC) estimates that 44% of HIV-infected youth ages 18–24 are unaware of their status.² While the national decline in rates of HIV diagnoses among certain subgroups, including men who have sex with men and women, is promising, data suggest that more work is needed to prevent HIV acquisition and ongoing unintended transmission among youth.

Engagement in HIV care has been conceptualized as a continuum that begins with HIV diagnosis and linkage to care and progresses through to viral suppression, but many HIV-positive persons intermittently disengage from HIV care across the span of the continuum.³ Nationally and in many state jurisdictions, engagement in HIV care is suboptimal, with as few as 30% of HIV-positive persons achieving viral suppression.⁴ The state of Georgia ranks fifth in the nation for the number of new HIV diagnoses,⁵ and HIV continuum of care analyses in Georgia during 2013 revealed that 82% of adolescents and adults living with HIV knew their diagnosis and that 75% were linked to care.⁶ This suggests that increased efforts are needed to reach national and international HIV prevention and care goals of linking 85% of those to care within 30 days of a diagnosis,⁷ 90% of all people living with HIV will know their status by 2020, 90% of all people diagnosed with HIV infection will receive sustained antiretroviral therapy (ART) by 2020, and that by 2020 all people receiving ART will have viral suppression.⁸

HIV testing facilitates early diagnosis and linkage to care and decreases the risk of unintentional transmission for persons who may be unaware of their infection.^9,10 The CDC and the United States Preventive Services Task Force (USPSTF) support routine HIV testing during healthcare visits for adults and adolescents, as young as age 13, as part of an overall HIV prevention and care strategy.^11,12 Nationally it is estimated that 33% of young adults who have had sexual intercourse (persons with ages 18–24 years) report ever receiving an HIV test.¹³ From 2011 to 2013, there was a significant decrease in the prevalence of testing among young adult females overall (from 42.4% to 39.5%), young adult white females (from 37.2% to 33.9%), and young adult black females (from 68.9% to 59.9%).¹³ This is especially alarming for young adult black females who have higher rates of HIV infection than females of any other race or ethnicity.²

Linkage to HIV care for HIV-positive youth is also suboptimal. It is estimated that of those youth diagnosed with HIV, 62% engaged in medical care within 12 months of diagnosis, and less than six percent remain virally suppressed.¹⁴ One tactic that may be helpful for engaging youth in HIV testing and timely linkage to care is community-based efforts. Although 40.5% of young adults report receiving their last HIV test at a private doctors office/health maintenance organization,¹³ the International Advisory Panel on HIV Care Continuum Optimization (IAPAC) suggests community-based HIV testing for those who are less likely to attend facility-based HIV testing.¹⁵ Recent data from the CDC also highlighted the importance of community-based testing; although more youth were likely to be tested in a healthcare facility, tests were less likely to yield diagnoses than tests performed in nonhealthcare facilities.¹⁶ Community-based testing includes HIV testing in mobile vans, night clubs, city parks, and in pharmacies.^17,18 Studies have shown that community-based testing can successfully reach high-risk adolescents^19,20 who may be missed by testing in clinic-based settings for various reasons—for example, providers assuming that their patients do not need HIV testing or adolescents not being transparent with their providers about their sexual activity.^21,22

Programs specifically tailored for youth which focus on HIV testing and subsequent linkage to care are lacking, and rates along the continuum of care are less than ideal.^14,16 Community-based testing, therefore, shows promise as a strategy to improve HIV testing rates (and rates of subsequent linkage to care) among sexually active youths. To improve outcomes of a community-based testing initiative, we sought to understand what youth consider to be important factors for community-based testing, and for those who receive a positive HIV test result, what they feel is important to hear from providers to strengthen linkage to care. In this study, we analyzed data from qualitative focus groups with youth in Atlanta to identify key elements for optimal community-based testing and linkage to care and to inform future HIV prevention interventions.

Methods

Researchers from the Metropolitan Atlanta Community Adolescent Rapid Testing Initiative (MACARTI) team conducted focus groups with HIV-positive and negative youth from the Atlanta metropolitan statistical areas (MSA) during 2012–2013, as part of the MACARTI trial, a mixed methods study. The goal of MACARTI was to develop and test an intervention to improve engagement in care for adolescents and young adults. Before beginning the trial, we conducted formative research to plan for community-based testing and linkage to care. The intervention began with rapid sixty-second targeted HIV testing conducted in nontraditional venues, such as night clubs and at community events (e.g., Gay Pride). Next, MACARTI implemented a new linkage model with aggressive upfront motivational interviewing and strength-based case management support established before disclosure of a new HIV diagnosis and before medical intervention for linkage to care. Study details have been published previously.^23,24 This article reports on the formative phase of the study.

Eligible participants were those who were between 18 and 24 years of age and lived in the Atlanta MSA. Youth were recruited through various outreach activities, including collaborations with community partners and the Young Adult Network Group within the Ponce Family and Youth Clinic (PFYC) of the Grady Infectious Disease Program. Youth recruited from PFYC were living with HIV and engaged in care. MACARTI research team members wanted to hear the experiences of youth living with HIV and understand the fears of those who were HIV negative. The goal was to enroll youth of different ages, races, and genders. Eligible participants provided written informed consent and completed Audio Computer-Assisted Self-Interviewing surveys that gauged opinions of potential risk factors for HIV acquisition in youth, demographic data, local places where youth like to meet and addressed acceptability, and ways to approach youth for HIV testing in nontraditional venues.

Enrolled youth also participated in exploratory qualitative focus group sessions. Domains of the focus group discussion guide included identifying target venues for HIV testing, strategies for approaching at-risk youth for testing, opinions on testing methodologies, barriers to testing, reasons for delaying entry to HIV care if applicable, and social aspects of the HIV epidemic. Three members of the research team led the focus groups, one interviewer and two note-takers, using a semistructured guide. The focus group discussions lasted 90–120 min and were audio recorded. Participants were compensated $25 for their participation. The Emory University Institutional Review Board, Grady Research Oversight Committee, and CDC's National Center for HIV, Viral Hepatitis, STD, and TB Prevention Project Determination review approved this research study.

One focus-group moderator transcribed the group audio recordings verbatim. A second research team member (ACG) reviewed the transcripts to ensure points from the notes were captured in the transcriptions. Although the discussion guide covered several topics,²³ this article focuses on responses to questions regarding key elements for community-based HIV testing and linkage to care after a new HIV diagnosis (Table 1). A qualitative data analyst (LT) uploaded transcripts into NVivo (QSR International Pty Ltd. Version 8, 2008) and applied structural codes to the data to label each question and participants' responses.²⁵ Two qualitative data analysts (AM, LT) thoroughly read each transcript. The analysts reviewed five transcripts by structural code to create an emergent, data-driven code list.²⁶ The analysts then compared their code lists, discussed discrepancies, and created a preliminary content codebook. To ensure coding consistency, analysts independently coded two transcripts and assessed inter-coder agreement using Kappa scores. The analysts reviewed and discussed codes with a Kappa score less than 0.80 until a consensus was reached. Text segments were recoded as necessary, and the codebook was finalized. Each analyst then coded five of the remaining ten transcripts. Salient and co-occurring concepts were identified and organized into thematic categories.

Table 1.

Focus-Group Moderator Guide in the MACARTI Trial, Atlanta, GA 2012–2013

Topic	Question	Sample codes
Testing motivation	What types of things would make you want to get tested out in the community?/What types of things would make you not want to get tested?	Test confidentiality
		No test with friends
		TestCoins type
		Stigma test
Approach for HIV testing	What do you think is the best way to approach someone out in the community to get tested?	Direct approach
		Indirect approach
		Info approach
		No approach
Testing counseling	Think about what you were told when you were diagnosed. What was said that was helpful and what was said that was not? Is there anything you wish you had been told?	Direct positive
		Emotion support
		Info positive
		Promote healthy HIV
Unknown positives	Do you think some of your friends are infected and don't know it? Do you think they will allow us to test them?	Stigma rejection
		Fear result
		Denial
		Provide incentive
Treatment motivations	What motivates you/people to stay in treatment?/Why don't people your age seek out treatment	Children
		Family
		Medication effects
		Stress
Treatment options	Think about treatment and healthcare options in your community. What is available to you? Where do your friends, family, or neighbors go? Why do they go there?	Health Department
Treatment options		ASO (AIDS Service Organization)

MACARTI, Metropolitan Atlanta Community Adolescent Rapid Testing Initiative.

Results

Among the 68 youth who participated in 17 focus groups, the mean age was 21.5 years, 85% were male, 90% were African American, 50% lived with their parents or guardians, and 50% had received a high school education or less. In addition, 68% were HIV positive (patients of the PFYC) (Table 2). Seventy-two percent of male participants reported sexual activity with other males at least once during their lifetime.

Table 2.

Baseline Demographic Characteristics of Participants in the MACARTI Trial, Atlanta, GA 2012–2013

Characteristic	Category	N (%)
Gender	Male	58 (85.3)
Gender	Female	10 (14.7)
Race	African American	61 (89.7)
	American Indian	1 (1.5)
	Hispanic or Latino	3 (4.4)
	White	3 (4.4)
Age (mean ± SD)	—	21.5 ± 1.8
HIV positive	Yes	46 (67.7)
HIV positive	No (self-report)	22 (32.4)
Living situation	Parents/guardian/other family	34 (50.0)
	Partner/friends/college	18 (26.5)
	Group home/homeless	2 (2.9)
	Alone	11 (16.2)
	Other	3 (4.4)
Education	High school or less	34 (50.0)
	College	26 (38.2)
	Graduate school	3 (4.4)
	Other	5 (7.4)

MACARTI, Metropolitan Atlanta Community Adolescent Rapid Testing Initiative; SD, standard deviation.

Of the 17 focus groups, 11 were conducted with only HIV-positive youth, 2 groups were conducted with only HIV-negative youth, and 4 groups contained a combination of HIV-positive and -negative youth. Main themes discussed in response to the following questions are presented below: (1) What do you think is the best way to approach someone out in the community to get tested? (asked of everyone), and (2) Think about what you were told when you were diagnosed. What was said that was helpful and what was said that was not? Is there anything you wish you had been told? (only asked of HIV-positive participants). There were no differences in responses based on the HIV status of participants.

Approaching people in the community for HIV testing

Participants' recommendations for approaching people in the community for HIV testing centered around three themes: (1) discretion, (2) being candid about testing, and (3) incentivizing testing.

Most focus groups discussed the importance of a discreet approach that was characterized as being indirect, informational, building rapport, and confidential. These participants recommended that testing organizations allow people to approach the testers rather than vice versa. Some participants noted that if the testers approached individuals in public spaces, they should use an informational approach, providing information on HIV testing and services for people living with HIV rather than asking directly, “Do you want to be tested for HIV?”

Participants discussed the importance of building “rapport” and “having a conversation” before offering HIV testing. An HIV-positive male discussed the importance of building rapport:

The way I would approach someone out in public, I think I would, I don't know, I mean the world is very superficial so I would start off with a compliment, like “ya'll lookin good” “ya'll look like ya'll ready to party” you know warm em up because half the time if you at a night club or restaurant or bar that's what they doing, so you telling them they look good, they gonna walk up to you especially if you are cute or they are interested in you they goin to come over “thank you” or inquire about something that they wearing just to get the conversation going. Once I had the conversation going, you just have to slide in the HIV testing. You gotta be smooth.

Finally, some participants felt that offering rapid testing to a group of friends could compromise the confidentiality of the test and could make people feel uncomfortable as discussed by young men living with HIV:

Male 1: I don't think you should be so direct with it like if they are out with their friends pull them to the side and get them to open up.

Male 2: Like nobody just wants to come in there [to test], like you might want to but you really don't. You can do the onsite testing too, but it's good to give them a card too in case they are not comfortable doing it around their friends.

Male 3: They going to assume you got something if you don't get tested…

Moderator: So you think it would be better to take someone to the side as opposed to approaching a whole group?

Male 2: Yeah

Male 3: Yeah

Male 2: Like walk up to them and say can I talk to you for a quick survey, so if you pull them off individually and say can I ask you a quick question but don't say HIV until you pull somebody aside.

Male 3: Yeah because if you say HIV they going to be like, ‘No. First of all, you approached me on the street.’ Because I know I do it I'm like, ‘Get out of my face, I'm on a mission, don't disturb me…’

Male 2: …People are going to know although because if one person comes out happy and one comes out sad then everybody is going to know. That person's facial expression is going to change like you were at the club all hyped and pumped and then you're just like um you're going to give it away.

Being candid about testing

Other focus group participants favored a candid approach. As one HIV-negative female stated, “Just be blunt with it, don't beat around the bush.” Another commented, “I think you need to get someone who is straightforward. People like that,” (Male, HIV-negative). Similarly, this statement by a participant highlights his recommendation that testers be straightforward and upfront about the testing opportunity:

I disagree with [the indirect approach] because pulling them aside secretly, put it in the back of their mind, I think that's the problem now, everybody keeps it in the back of their mind, but if you have somebody coming up to you, upfront saying it's not the way it used to be, we have medicine to make sure you be okay and stay as healthy as you are now. If someone is coming at you like that then you'd be more open to coming to like groups like this or to proudly tell somebody before you have sex that you are HIV positive. It'll give you more of a lighting on it instead of keeping it in the dark… (Male, HIV positive)

Incentivizing testing

Many focus groups discussed the importance of incentives. Although participants cautioned that some people may not be prepared to get their HIV test results while out in the community or at a club, they noted that offering incentives such as money, free drinks, or free club admission could motivate some people to get tested.

9 times out of 10 once you mention the money thing they're just going to be amped about the money because this is the younger community, and money is going to basically pull them in. Some people…will probably be prepared to get their results. (Male, HIV positive)

Yeah, free drinks in the club and get an HIV test. Free drinks in the club if you get tested for HIV. Have a banner, like put up a banner somewhere like a week before, like if you are going to go on a Friday night, so have the club put up a banner that says “Free drinks on Friday night if you get HIV tested.” (Female, HIV positive)

Receiving a positive HIV test result

Youth living with HIV were asked what they wish they heard from the person administering the test and providing results when they were diagnosed with HIV infection. Two themes emerged: (1) emotional support and (2) reassurance of a healthy life span after an HIV diagnosis.

Several focus groups thought it was important that test counselors and providers offer a newly diagnosed person emotional and physical comfort (e.g., rubbing their back), as well as access to a psychosocial support system, as one HIV-positive female explained:

[Tell them that] everything is going to be okay and basically, I'm here to talk. Because we need to hear that, ‘I'm here to talk to’ so you can feel like I do have somebody to talk to and you not alone in this. I didn't have anybody there to tell me all this but I felt like you know if I did have somebody there showing me they care and you know asking me if I need to talk about anything or is there anything I need to talk about I would have been like less depressed.

In focus groups, participants repeatedly stated that it was important for the person delivering the results to “show that they care.” The youth discussed how important this was for them when they were diagnosed, and for some, comfort and support was something they did not receive and wished that they had, as described by an HIV-positive male:

Actually nobody told me anything, nobody gave me no helpful tips. I would have loved for them to give me some basic tips on how to protect me and my partner and how to cope with the diagnosis.

Youth felt that emotional support was not only important when receiving a diagnosis, but also necessary for continued care. An HIV-positive young man explained:

I just feel like it's a different level on certain people because certain people take it well some people don't and when you have the people who really don't take it well, I think you have to comfort them more while they're here before you let them go…I got happy when Dr. XXX told me that he could get me to the point where I was undetected and after the fact and I actually started coming and seeing how my T-cells and my viral load were just changing and I mean because I'm not going to lie, when I first found out, when I had to come here I may have had a smile on my face but I was like oh my God, but I kept coming and he's like your T-cells are this that or the other and it brought joy to me that I know that I'm working toward myself being healthy so it's like I'm happy about that and I'm still happy about that.

Positive healthy living with HIV

Participants in some focus groups shared that their first thought upon receiving their positive HIV test results was that, “I am going to die.” To combat this assumption, the youth stressed the importance of telling newly diagnosed individuals that they will be able to live a healthy life despite their HIV diagnosis.

Once they did the test and told me that I was HIV positive, I immediately thought, ‘this can't be happening’ and the first thing they told me was, ‘This doesn't mean you are going to die.’ Because that's the first thing someone thinks is like, ‘Oh my gosh I'm going to die.’ They tell you that you are not going to die and that's not it at all. We want you to know that there is medication for this. You're going to keep living a normal life you have always lived because people think once they're diagnosed then things have to change in their life and it doesn't have to be that way. You just have to take your medication and do whatever your doctor needs you to do. (HIV-positive male)

I would try to encourage them and tell them that its ways that you can have a long life from this by taking your meds every day and also if you take your meds all the time later in life …HIV will be in your body but not found, so it will be undetectable. You still have a chance, you just got saved actually. So you have a chance to fight to continue doing what you have to do and to pursue your dreams because I know if I can stand my head up and push through life and I'm going to continue my dreams, I know you can do the same thing because if you notice everyone dies sooner or later. (HIV-positive male)

Participants felt promoting that one can have a healthy life was especially important for those who may receive their diagnosis as a “death sentence” and even consider “suicide.” An HIV-positive male commented:

A lot of people can just get into that they want to commit suicide, well I'm going to die anyway I might as well just do it now and I just think you give them a lot of comfort. Just be like it's going to be okay, we can get you help, we can get you care.

Discussion

Community-based testing is an important strategy for identifying previously undiagnosed HIV-positive youth and linking them to care.^19,27,28 However, best practices for conducting community-based HIV testing and counseling among youth have not previously been well described. In this study, we spoke directly with youth to understand the factors that may improve experiences and outcomes of community-based testing. Our youth participants made recommendations about how best to approach individuals in the community when offering testing services and reflected on strategies for sensitive disclosure and discussion of positive HIV test results.

Regarding the best ways to approach youth in the community for HIV testing, participants emphasized discretion. This is consistent with prior research in which confidentiality was described as a primary concern related to HIV testing.^29,30 Regarding how to initiate a discussion about HIV testing, not all youth had the same preferences; some described a preferred approach in which testers build rapport and ease into an HIV-related discussion. However, other youth preferred a direct approach when asking about HIV testing at a nontraditional venue. These different perspectives from youth make it difficult to make a uniform recommendation about how best to approach youth and underscore the importance of remaining flexible with young persons when it comes to HIV prevention engagement strategies.

Several youth participants described the expectation of financial incentives for HIV testing. Although not planned, the majority of participants in our sample were young black men who have sex with men (YBMSM). For young men who have sex with men (YMSM), anecdotal reports suggest that multiple HIV research and prevention networks often target overlapping venues to reach HIV testing and diagnosis goals, so that the awarding of financial incentives has become normative for some MSM. The consequences of “over studying” YMSM are unclear—on the one hand, HIV testing is cost effective,³¹ particularly for young, black, and Latino MSM, who are disproportionately affected by HIV infections. On the other hand, expectations of financial incentives may undermine the efforts of public health initiatives that lack sufficient funding to pay youth to undergo HIV testing. Our feedback from youth in Atlanta indicates that when possible, financial incentives should be provided to maximize participation of youth in HIV testing campaigns. For scientific integrity purposes, these amounts should be noncoercive.³²

For post-test counseling, participants emphasized the importance of providing emotional support and comfort and of positively framing the prognosis of HIV infection. This is consistent with studies in adult populations, which have identified the importance of both emotional and informational support in the immediate post-test period.³⁰ The CDC guidelines for HIV testing in nonclinical settings also recommend that testers “advise to access care and treatment for HIV, [as] treatment can help people with HIV live long healthy lives and prevent transmission”—our participants shed light on the emotional experience and importance of receiving this information.³³ Based on the perceptions of youth in our study, some HIV prevention and care providers may need additional trainings to ensure that information shared after a new HIV diagnosis is helpful, constructive, and delivered in a sensitive manner; such provider trainings may also help prevent HIV provider burn-out (which often contributes to suboptimal provider interactions).³³

Studies describing testing experiences and preferences among general youth populations have been conducted in many settings, contributing important knowledge to inform general strategies to improve testing uptake.^34
–36 For example, feedback from service providers who work directly with racial and ethnic minority YMSM (the majority of our sample) includes utilizing peers, providing holistic care, and making services fun to improve engagement in HIV testing and care with YMSM; these suggestions are aligned with some feedback from our sample.³⁷ In addition, focus group feedback from youth living with HIV infection in San Francisco indicated that mobile applications being developed to increase engagement with youth should ideally allow opportunities to connect with other HIV-positive youth, more easily access healthcare providers and personal laboratory data, and provide relevant educational information.³⁸ Importantly, our sample was somewhat unique in its inclusion of both HIV-positive and -negative youth. From an intervention development perspective, the experiences of youth living with HIV infection are extremely relevant to improving health services as youth progress through the continuum of HIV care. Lessons learned from this MACARTI trial indicate that directly involving youth in intervention development allows for targeted HIV prevention strategies, which can improve success with linkage and HIV care for HIV-positive youth.

Limitations

Our study has some limitations. First, our convenience sample of youth was all individuals who were amenable to participation. It is possible that our respondents skewed toward those who would favor such community-based testing and that youth who declined participation would have other beliefs and recommendations around HIV testing that are not reflected in this study. Second, we interviewed youth in one jurisdiction; our findings are not generalizable to youth in other areas. Future studies should engage youth in diverse settings, including rural, urban, and outside of the southeastern United States. Third, although the goal was to enroll youth of diverse backgrounds, including race and gender, our participants were mostly YBMSM. However, our sample does mirror the condition of HIV in Atlanta and the United States, in which YBMSM is the group most affected by and infected with HIV. Future studies should engage youth in diverse settings and of different genders, race/ethnicities, and sexual orientations. Finally, youth have unique developmental needs and psychosocial stressors that influence their likelihood of being tested for HIV^39
–41; in this study, we did not delve into individual participants' social circumstances that may have influenced their responses. As we know that psychosocial factors can affect one's context and progress along the HIV continuum of care, studies with youth should solicit information about psychosocial stressors as part of routine data collection.

CDC guidelines for HIV testing in nonclinical settings carefully outline the detailed steps involved in conducting an HIV test and disclosing the results; however, affective components mentioned by our sample of youth, such as comfort and rapport, are not included in this document.³³ Our results add an important, youth-specific layer of considerations to the basic recommended steps of testing and disclosure, which could enhance the likelihood of successful and timely linkage to care among youth newly diagnosed with HIV infection. Future research should aim to engage youth who may avoid community-based testing, and those who reside in other geographic locations, to further elicit potential barriers and facilitators for HIV testing and linkage efforts among youth.

Footnotes

Acknowledgments

Presented previously at the International AIDS Society Meeting, Melbourne-Australia, July 2014. The authors acknowledge their community partners AIDS Healthcare Foundation, AID Atlanta and Positive Impact, the Fulton County Department of Health and Wellness, and the LGTBQ unit of the Atlanta Police Department. Funding: This work was supported by the Centers for Disease Control and Prevention (grant no. 5U01PS00332).

Author Disclosure Statement

A.F.C.-G. has received research support from Gilead and Janssen Pharmaceuticals. He has also served as a consultant for Theratechnologies. R.C. has received research support from Gilead.

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