“I Didn’t Know What They’re Gonna Do to Me: So That’s Why I Said No”: Why Youth Decline HIV Testing in Emergency Departments

Abstract

Youth between the ages of 13 and 24 account for over 20% of new HIV diagnoses in the United States but are the least likely age group to be HIV tested in healthcare settings including the emergency department. This is in part due to the fact that almost 50% of youth decline testing when offered. We elucidated youth patients’ perspectives on barriers to and facilitators of routine HIV testing of youth in an urban emergency department setting. Thirty-seven patients aged 13–24 years were recruited from the pediatric and adult emergency departments at a high-volume hospital in New York City from August 2019 to March 2020. Semi-structured in-depth interviews were conducted with all participants. Interviews were audio-recorded and transcribed verbatim, and transcripts were coded using an inductive thematic analysis approach. Youths’ main reasons for declining HIV testing when offered included low risk perception, privacy concerns, HIV-related stigma, and low levels of HIV-related knowledge. Participants’ responses suggested that HIV educational materials provided when testing is offered may be insufficient. Participants recommended providing additional HIV education and better incorporating HIV testing into the emergency department routine to increase testing among youth. Efforts are needed to help youth recognize their own HIV risk and increase their HIV-related knowledge. This may be accomplished by providing youth with additional educational materials on HIV, possibly via tablet-based interventions or other methods that may enhance privacy, combined with discussions with healthcare providers. Such efforts may help increase HIV testing acceptance among youth seen in the emergency department.

Keywords:

• Barriers
• emergency department
• youth
• HIV testing
• facilitators

Introduction

According to the Centers for Disease Control and Prevention, the 15% of HIV-infected people in the U.S. who are unaware of their diagnosis account for almost 40% of HIV transmissions in the country.¹ As such, the Ending the HIV Epidemic: Plan for America (introduced in 2019), has as its first pillar the goal to “diagnose all individuals with HIV as early as possible after infection.”² Youth aged 13 to 24 years are the least likely age group to know their HIV status,³ and have the highest HIV transmission rate in the U.S. at 5.1 cases per 100 person-years.¹ Therefore, increasing HIV testing and early diagnosis among youth is imperative to successfully end the HIV epidemic in the U.S.

Emergency departments (EDs) may be important venues to increase HIV testing and diagnoses among youth as they serve as the primary source of healthcare for a sizeable proportion of youth.⁴ Youth at high risk for HIV infection prefer the ED as their source of healthcare, are less likely to have primary care physicians and more likely to seek care in the ED than their sexually inexperienced peers.⁴ Yet, such youths’ HIV infections often go undiagnosed for years despite having multiple visits to the ED. This is particularly the case with youth seen in pediatric EDs. For example, among a sample of young adults diagnosed with HIV in an adult ED, 10 of them had 26 pediatric ED visits during the time in which they were likely already HIV-infected. Four of them had sexual risk documented in their medical records during those visits, yet only one of them received an HIV test. Seven out of the ten had CD4 counts under 200 at the time of diagnosis.⁵

Due to the low HIV testing rates of youth (particularly adolescents) in EDs, a panel of experts identified “How can we optimize HIV screening for the asymptomatic adolescent ED population across different ED settings?” as a key research question for evidence-based sexual and reproductive health.⁶ Providers often do not offer HIV testing to youth they deem to be at low risk for HIV.⁷ Furthermore, almost 50% of youth decline testing when offered, with younger adolescents being more likely to decline.⁸ To facilitate early detection of HIV infections among youth, it is imperative to identify and address factors that lead them to decline HIV testing when offered.

Therefore, the goal of the current study was to explore barriers and facilitators of routine HIV testing of youth in urban EDs from the perspective of patients aged 13–24 years. Specifically, the study explored reasons why youth decline testing when offered, as well as ways to increase testing acceptance from patients’ perspectives to identify ways to increase HIV testing among youth seen in the ED.

Methods

Study design

This qualitative study involved patients that were recruited from the pediatric and adult EDs at a large, high-volume hospital in New York City, from August 2019 to March 2020, as part of a Hybrid Type 1 Effectiveness-Implementation Trial evaluating a technology-based intervention for increasing HIV testing among youth in the ED. The trial is described in detail elsewhere.⁹ Briefly, 295 participants were randomized into one of two study conditions: (i) patients completed a computer-based HIV education and risk assessment intervention and were offered HIV testing via a tablet computer or (ii) patients did not receive the computer-based intervention but instead were given an educational pamphlet on HIV testing and offered an HIV test by a research assistant after entering basic demographic information into a tablet computer. The study was approved by all governing Institutional Review Boards.

Study setting and population

Patients aged 13–24 years who spoke English, were not currently incarcerated, not noticeably under the influence of drugs or alcohol, and not categorized by ED staff as being in most severe need of treatment were eligible to participate. Research assistants approached potential participants in the treatment area of the ED after they had been seen by a triage nurse and briefly described the study to them and asked if they would be interested in participating. Interested youth were given more details about the study and asked to provide written informed consent. For patients younger than 18 years, both patient assent and parental consent were obtained. As part of their study participation, each participant was offered HIV testing (either via a tablet computer or by the research assistant, based on their assigned study condition). Prior to approaching the participants, the research assistants checked their medical records to determine whether they had been offered an HIV test and if so, whether they had accepted or declined testing. All participants were offered HIV testing as part of the study regardless of whether testing had previously been offered by ED staff as part of their care. Of the 295 participants, only about one-third (n = 95) had been offered an HIV test before enrollment in the study.⁹ The process for HIV testing in this study differed only slightly from treatment as usual. The key difference is that in the study, participants were offered HIV testing after viewing an educational video intervention via tablet computer (intervention condition) or after reading a printed New York State information sheet on HIV testing (modified treatment as usual condition). ED staff usually offer HIV testing to youth without an educational presentation. The EDs in which the study took place use blood-based HIV testing. After completing the trial, participants from both groups were asked if they would like to be interviewed about HIV testing.

Study protocol

Interviews were conducted by the research assistant (MB, a female) who did most of the recruitment for the trial. MB did not have any relationship with the participants prior to recruiting them for the trial. Prior to data collection, MB, who has a bachelor’s degree and at the time of data collection was a research coordinator in the ED received four months of qualitative research training from the study’s principal investigator (feedback was also provided on each interview during data collection). All interviews were conducted in the ED, in a quiet location without other people (e.g., parents) present. Interviews were conducted using a semi-structured interview guide that was a modified version of an interview guide used in prior studies by the principal investigator. The interview guide included questions about the interventions participants had just completed as well as questions about reasons why youth do not get tested for HIV and ways to improve testing services in the ED to increase willingness to test. The specific questions guiding the current analysis are presented in Table 1.

Table 1. Interview questions.

Domain	Question
Barriers to testing	What are some of the reasons why people don’t get tested for HIV?
	How could testing services be improved so that more people might be willing to test?
Response to test offer	Why did (didn’t) you choose to test for HIV today when I asked you?
	Was there anything in particular that made you say yes/no?
	Was there something I could have done differently when I asked you that would have been more helpful?

All interviews lasted approximately 20 minutes and were digitally recorded. The interviewer also wrote fieldnotes after each interview. Interviewed participants received $25 gift cards as an incentive. In total, a convenience sample of 37 youth agreed and were interviewed.

Data analysis

All interviews were transcribed verbatim. Transcripts were coded using an inductive thematic analysis approach.¹⁰ A preliminary codebook was developed based on a list of codes two researchers (MI and ASB, both of whom have doctoral-level qualitative research training and extensive experience) independently compiled after reading five transcripts. The codebook was refined and finalized by the two researchers in consultation. All transcripts were coded independently by MI and ASB with Dedoose Version 8.0.35 (SocioCultural Research Consultants, LLC; Los Angeles, CA) using the finalized codebook. Discrepancies in coding were resolved via discussion until consensus was reached. Two researchers (MI and ASB) independently reviewed the final coding reports to identify main themes. Data for the current analysis emerged primarily from the codes “Barriers to testing,” “Facilitators of testing,” “Testing decision,” and “HIV education and messaging.” The first author selected representative quotes to be included in the text. The quotes have been edited for clarity.

Results

Sample characteristics

The mean age of the interviewed patients was 17.1 years (range: 13–22). Of the 37 participants, 17 were from the intervention group, while the remaining 20 had received the control condition. Most participants were Hispanic (68%), Black (68%) and female (60%) (Table 2).

Table 2. Demographic and HIV testing characteristics of youth interview participants (n = 37).

Characteristic	N	%
Age
Under 18	18	48.6
18 and older	19	51.4
Gender
Female	22	59.5
Male	13	35.1
Genderqueer	1	2.7
Transgender	1	2.7
Ethnicity
Hispanic	25	67.6
Non-Hispanic	12	32.4
Race
Black	25	67.6
White	8	21.6
Native Hawaiian/Pacific Islander	5	13.5
American Indian/Alaska Native	3	8.1
Asian	2	5.4
HIV testing
Computer-based HIV test offer	17	45.9
Face-to-face HIV test offer	20	54.1
Accepted HIV test	10	27.0
Declined HIV test	27	73.0

Why youth decline HIV testing when offered

Most of the interviewed youth (73%) declined HIV testing when it was offered to them as part of the trial. (In the full trial sample, 64% declined testing). In their subsequent interviews, participants provided several reasons for why they and other youth decline testing when offered in the ED. These included risk perception, privacy concerns, stigma, and a lack of HIV knowledge as discussed below.

Risk perception

Several youth participants cited low risk perception as the reason why they declined HIV testing when offered. This is illustrated by the following quotes:

Basically, when I made the decision, I thought about basically all the sexual things that I did and like, I use condoms and the same females that I like, I hook up with girls, so it’s like, I know she’s on birth control, and I know if she get checkups […] we both ‘gon be good, like if she good, I know I’m good. That’s how I see it. (19-year-old Hispanic Male, declined HIV test)

Um, just basically I trust myself. I trust the people that I’ve been with. Um, and I trust that, you know, I am clean and I don’t have anything, so … I don’t get tattoos. I don’t have any tattoos. I don’t share any needles for drugs or anything. Um, I don’t drink. (18-year-old Black Female, declined HIV test)

While several youths declined testing due to low risk perception, they also indicated that fear might deter those who consider themselves to be at high risk for HIV from getting tested. This included the fear of receiving an HIV diagnosis as well as fear of the implications of such a diagnosis. According to a 14-year-old Hispanic girl, “a lot of anxiety would happen ‘cause you don’t know the possible ways HIV can affect you. It can affect your appetite. It could possibly affect your life.” As such, youth may decline HIV testing to delay or avoid having to face the consequences of an HIV-positive diagnosis.

Privacy concerns

Youth often cited privacy concerns as the reason why they declined HIV testing when offered. Some youths were concerned about how others might react if they found out they were HIV-positive. As one 14-year-old Hispanic girl explained:

Another thing would be the, the conditions they might think the people around them would think. Like, "Oh, will my friends, like, reject me?" Or, "Will my parents, like, get mad at me for having HIV, and I never admitted it to them?" Or, number one, to the stuff that got me to HIV. (declined HIV test)

For many youths the reactions of others to HIV testing itself regardless of the result was a key factor in their decisions to decline testing, as the mere act of testing revealed information that they might not be willing to disclose. For instance, several youths noted that agreeing to an HIV test while their parents were present would reveal that they are sexually active to their parents. This was a deterrent for some, but not all, participants as illustrated by the following quote:

I think HIV and I think just sexual health in general is kind of touchy when you’re with any types of parents or guardians. So, I think I probably would’ve responded better my myself than with parents around. Um, I don’t know. I think that just the notion of even wanting a test might concern some parents. (18-year-old Black Male, declined HIV test)

This was particularly the case for younger adolescents. With several youth being accompanied to the ED by parents or guardians, the fear of loss of confidentiality was a concern for many participants. This may also explain why the youngest participants (those aged 13–15 years) were significantly less likely than participants of other age groups to test for HIV at the end of the study intervention.¹¹ On the other hand, some participants did not see the presence of others as a barrier. As one participant put it,

“It doesn’t really […] concern me if somebody was here with me or not […] at the end of the day, it is my life, it is my health. […] I wouldn’t really care for the other’s opinion.” (19-year-old Multiracial Male, accepted HIV test)

For this participant, what ultimately mattered was taking care of his health and not what others present may think or do if he got tested.

Stigma

Participants were also reluctant to accept HIV testing due to the stigma attached to HIV. They believed that by getting tested for HIV or testing positive they would be stigmatized. For some youth, HIV testing would mean risking being branded as promiscuous as illustrated below:

“There’re a lot of ignorant people that would think, like, ‘oh you got HIV because you’re having sex with everybody, you’re having intercourses with a lot of people’.” (18-year-old Hispanic Female, declined HIV test)

Other youth felt that if they accepted HIV testing, people would make assumptions about them and the behaviors they engaged in. As one 17-year-old Hispanic male who accepted HIV testing stated, people would think that “you act like disgusting, or they view you differently.” Some youth also decline HIV testing due to its historical association with stigmatized groups. As an 18-year-old Black male who declined HIV testing put it:

I think that HIV is also very commonly associated with, um, the homosexual community as well, and I think on that note, I feel like, not to use the word again, but I also think there’s a stigma against that […] So, I think, um, a lot of heterosexual people might not want to take a test or might not wanna be informed about HIV simply because it, it seems to be somewhat correlated to a population that isn’t necessarily always accepted.

For youth, accepting an HIV test would not only mean the possibility of being diagnosed with a stigmatized disease, it would also mean being associated with a stigmatized group and/or stigmatized behaviors such as injection drug use.

Lack of HIV (testing) knowledge

Another key factor that led several youth participants to decline HIV testing was their lack of knowledge both about HIV and HIV testing as illustrated in the following quote:

Interviewer (I): Can you talk a little bit about, like what was going on in your head when you decided not to [test]?

Participant (P): Well, first I just didn’t know what the test was gonna be like and I didn’t know like what they’re gonna do to me. So that’s why I said no. (14-year-old Hispanic Female, declined HIV test)

While not all youths actually mentioned a lack of knowledge as a barrier to HIV testing, their overwhelming responses on the need for more information about HIV testing when asked about ways to increase HIV testing among youth indicate that a lack of knowledge may in fact prevent them from getting tested.

Ways to facilitate HIV testing in the ED

Youth offered several ways to improve HIV testing acceptance in the ED. As previously mentioned, youths recommended the provision of HIV education when offering HIV tests. They also recommended better incorporating HIV testing into the ED routine.

Provide HIV education with the test offer

Most youth thought more education about HIV would increase HIV testing among youth in the ED as illustrated below:

I say, just teach them what is HIV. Just say before ask[ing] them, just say "You know what HIV is?" […] I would say, inform them before, and say, why it’s important to have HIV test and why you […] should get it, because you don’t even [know], what can happen to you […] in the future. (19-year-old Hispanic Female, accepted HIV test)

I: Um, so you have said no because you said that you didn’t know what the test was. […] What information would you have liked to know beforehand that would have made you say, “yeah, I’ll take a test.”

P: Um, like the whole process of it. Like um, how it starts, what you need to do for it or stuff like that. Steps, the steps to it. Taking a test. (14-year-old, Hispanic, Female, declined HIV test)

Some youths noted no barriers to testing, nevertheless, their responses indicated that a lack of knowledge may have led them to decline the test.

Integrate HIV testing into ED routine

Several youth participants believed that HIV testing could be facilitated by better incorporating it into the ED routine as illustrated below:

I feel like when they’re asked, when they’re giving the urine, cause that’s just a part of like regular checkup in the front from the nurses, the nurses should like ask them, would you like to be tested for this and this and that apart from like the regular urine testing that they usually do. I feel like that would be a good place to start. Had a nurse ask[ed] me then I also would have said yes if she would have asked me before I came in here. (19-year-old, Hispanic Female, accepted HIV test)

Suggestions from participants included adding questions about HIV testing to the paperwork patients fill out in the ED or including HIV along with the other tests that are done as part of the diagnostic process. Participants thought that such integration could help address the earlier noted privacy and stigma concerns. As one 15-year-old Hispanic girl noted,

If their parents don’t know that they’re having sex, then they would probably say no to testing. Unless you make it like a requirement, like every kid that’s a teenager has to take testing. Yeah. Then they would say no. Like it’s not an option, you have to take it. Like you know vaccinations, like they have to get it? […] So, if you would say, “yeah, you have to get HIV testing.” (declined HIV test)

In addition, to alleviating privacy concerns, incorporating HIV testing into the usual ED routine would help normalize it, potentially minimizing the stigma attached to it.

Discussion

Our study sheds light on reasons why youth decline routine HIV testing when offered in the ED and highlights possible ways to overcome testing barriers among this population. Despite the fact that all participants in the study were provided information about HIV and HIV testing (either by video ¹² or pamphlet ¹³) prior to being offered an HIV test, a lack of HIV knowledge appears to have led several participants to decline testing. Notably, few participants explicitly stated a lack of knowledge as their reason for declining testing. Yet their overwhelming responses to the question on ways to facilitate testing suggest that providing youth with additional information about HIV along with the test offer could increase test acceptance. Current New York State testing laws require patients to be provided with seven pieces of information when being offered an HIV test. Specifically, the state requires health care providers to inform patients of the modes of transmission of HIV, available prevention methods for those who test negative, the efficacy of available treatments for those who test positive, the confidentiality of testing and availability of anonymous testing, the illegality of HIV-based discrimination and the voluntary nature of testing.¹⁴ Such information can be provided in writing or in audiovisual form as was done in the current study. However, participants may have questions that are not answered by such material and require further discussion of HIV and answers before accepting the test offer. Research indicates that youth whose providers discuss HIV with them are more likely to get tested.¹⁵

Several participants also reported declining HIV testing due to low perceived risk. This is an often-cited barrier to HIV testing.^8,16,17 Adolescents under the age of 18 years are especially likely to refuse HIV testing due to low risk perception.¹⁸ This may explain the fact that only two of the 37 interview participants under the age of 18 accepted testing in the current study (although more young adolescents accepted testing in the full trial sample). While youth often perceive themselves to be at low risk for HIV, high rates of HIV and other STIs found among youth in the U.S.^19,20 indicate that they do engage in risk behaviors that may put them at high risk for HIV.

On the other hand, in line with our findings, youth who perceive themselves to be at high risk of contracting HIV or who are more concerned about HIV may also be more likely to decline testing due to fear of (the consequences of) receiving a positive diagnosis.^17,21,22 Low levels of HIV knowledge may contribute to such fear of testing. Youth with low levels of HIV knowledge may be less aware of the effectiveness of available HIV prevention and treatment options and as such may avoid getting tested to avoid having to deal with the consequences of the test result.

These findings underscore the importance of patient-provider discussions, as such discussions may help convince youth of the need for testing based on their risk profile. Such discussions are also important for providing youth with prevention education as well as prevention methods such as pre-exposure prophylaxis for those who test negative. However, research suggests that such conversations may prove highly challenging in the hectic ED environment.⁷

Patients’ suggestions of incorporating HIV testing into the ED routine to facilitate testing could potentially address several of the barriers identified by youth. Such incorporation would help with “cultivating a culture of testing,” eliminate the feeling of being singled out or targeted for testing,²³ and help alleviate some of the privacy concerns which deter youth from agreeing to test. This could be particularly helpful in increasing HIV testing among younger adolescents who are more likely to be accompanied to the ED by parents or guardians to whom they may be unwilling to disclose their engagement in sexual activity or other behaviors that may put them at risk for HIV. If HIV testing were posed and offered to all youth over the age of 13 as part of the routine tests offered during an ED visit regardless of perceived risk, this could encourage more youth to accept HIV testing.

Furthermore, routinizing HIV testing may also help reduce the stigma attached to HIV and potentially reduce youths’ reluctance to accept testing when offered. To facilitate testing routinization, in 2016, New York State eliminated the requirement for patient written or oral consent for HIV testing to “make HIV testing comparable to the manner in which other important laboratory tests are conducted.”¹⁴ As such, patients only need to be orally advised that an HIV test is going to be performed as part of their standard of care unless they object.¹⁴ Opt-out testing practices have been shown to yield higher levels of HIV test acceptance in ED settings.²⁴ Furthermore, studies from other clinical settings show that HIV test rates are higher when incorporated into the standard of care.^25–27

The study has a few limitations. There is a possibility of self-selection bias, as those youth who agreed to the interviews appear to be different from the larger trial sample given that a higher proportion of youth declined testing in this analytic sample than in the trial overall (73% vs. 64%). Furthermore, due to the IRB requirement for parental consent for youth under the age of 18, there is the possibility that some youth at great risk for HIV might have declined participation in the study.⁹ Participants were also recruited from a single hospital, predominantly Hispanic, and only English-speaking patients were enrolled hence limiting the generalizability of the findings to other ED settings. Data collection was stopped early due to the COVID-19 pandemic. As such, we were unable to reach our targeted sample size for the study. However, we believe data saturation was met. Despite these limitations, the study offers important insights.

Conclusions

Actively educating youth about the importance of routine testing, available prevention options and the benefits of early detection may help increase HIV testing acceptance.¹⁷ While youth may be provided with educational materials on HIV (in various formats including via tablet-based interventions), it is important to combine such materials with the opportunity to discuss them with providers. Efforts are needed to help youth recognize their own HIV risk.

Disclosure statement

The authors have no conflicts of interest to declare.

Additional information

Funding

This work was supported by the U.S. National Institutes of Health, Eunice Kennedy Shriver National Institute of Child Health & Human Development under grant R42HD088325; and the National Institute of Drug Abuse under grants P30DA029926 and P30DA011041.