Adolescent Perceptions of HIV Testing Access and Utilization Across Two States with Varying Laws Regulating Minors’ Access to Confidential Sexual Health Services: A Qualitative Study in Connecticut and New Jersey

Abstract

Confidentiality concerns have been identified as a significant barrier to sexual health service utilization for adolescents. This qualitative study compares perceptions of HIV testing access and utilization among sexually active adolescents in two U.S. states with varying laws regulating minors’ access to confidential sexual health services. Between November 2022 and June 2023, we conducted semi-structured interviews with a purposive sample of 60 sexually active adolescents aged 16–17 in Connecticut (i.e., where confidentiality for HIV testing is mandated; n = 30) and New Jersey (i.e., where confidentiality for HIV testing is not mandated; n = 30). Guided by Andersen’s behavioral model of health services use, we used Dedoose software to identify key themes and explore areas of thematic convergence and divergence across states. Overall, we identified few thematic differences between states. Despite stressing the importance of confidentiality, most participants reported a lack of awareness of state laws regulating minors’ access to confidential sexual health services. Confidential care—i.e., having time alone with a healthcare provider during visits, the ability to self-consent to services, and the privacy of health information maintained—was identified as a key theme underlying perceptions of HIV testing access and utilization. Participants connected receipt of confidential care to increased comfort engaging in discussion of sexual health issues, disclosing sensitive sexual health information, and testing for HIV. Findings suggest that confidentiality concerns may be a key mechanism that can be acted upon to increase adolescent HIV testing uptake.

Introduction

In the United States (U.S.), adolescents and young adults experience some of the worst health outcomes across the HIV care continuum. In 2022, individuals aged 13 to 24 accounted for 1 in 5 new HIV diagnoses in the U.S [1]. Young people are vulnerable to HIV infection for several reasons [2], including inadequate sex education [3], high rates of condomless sex [4] and sexually transmitted infections (STIs) [5], and low pre-exposure prophylaxis uptake [6]. Compared to other age groups, young people are the least likely to be aware of their HIV infection and linked to care in a timely manner [7]. In 2022, only 56% of young people living with HIV in the U.S. were aware of their status and only 66% had achieved viral suppression [7]—considerably lower than UNAIDS 95-95-95 targets to end the HIV epidemic by 2025 [8].

Given that 40% of new HIV infections in the U.S. are transmitted by people who are not aware of their status [9], HIV testing provides significant public health benefits by reducing HIV transmission and progression. Since 2006, clinical guidelines have recommended opt-out HIV screening for patients aged 13–64 in all healthcare settings in the U.S [10]. However, rates of lifetime HIV testing among U.S. high school students are low and have significantly declined in recent years, from 13% in 2011 to 7% in 2023 [4]. This suggests that recommendations for universal HIV screening [10] have not been widely implemented. Increasing adolescents’ knowledge of status—a key component of the National HIV/AIDS Strategy [11] and the Ending the HIV Epidemic in the U.S. initiative [12]—is crucial to improving health outcomes for young people at every step of the HIV care continuum.

Adolescent minors under age 18 face unique barriers to HIV prevention, including inequities in access to confidential sexual health services. Confidentiality concerns (i.e., fears that parental consent will be required or that parents or others will be informed of test results) have been identified as a substantial obstacle to sexual health service utilization for adolescents [13-16]. Although minors may consent to sexual health services without parental permission in all 50 U.S. states and the District of Columbia [17], there are wide cross-state inequities in access to confidential HIV testing. As of 2021, only 29 of the 51 jurisdictions that allow minors to independently consent to HIV testing specify confidentiality protections [17]. Among the 29 jurisdictions with confidentiality protections, only 14 mandate confidentiality for HIV testing; the remaining 15 jurisdictions allow healthcare providers to exercise discretion over which information they disclose to parents or guardians [17]. Lastly, only 5 jurisdictions have adopted payor-related confidentiality protections to address health insurance billing and claims processes that may inadvertently breach confidentiality (e.g., provisions to prevent parental disclosure through an explanation of benefits statement) [17].

Although confidentiality concerns may deter adolescents from HIV testing, limited research has explored the potential influence of U.S. state laws regulating minors’ access to confidential sexual health services on adolescent HIV testing utilization. Several quantitative studies have evaluated whether minor consent laws are associated with adolescent HIV testing rates, with mixed findings [18-22]; two studies found no association among small, non-probability samples of young men who have sex with men [18-19], while three other studies revealed an association for male adolescents among larger, representative samples [20-22]. Given the varying U.S. state laws regulating minors’ access to confidential sexual health services, a nuanced understanding of the ways in which confidentiality protections—or lack thereof—may affect HIV testing utilization is essential to increase adolescent HIV testing uptake. However, there is a dearth of qualitative research exploring the potential role of these laws on adolescent HIV testing. This study sought to address this gap by comparing perceptions of HIV testing access and utilization among sexually active adolescents in two U.S. states with varying laws regulating minors’ access to confidential sexual health services. Guided by Andersen’s behavioral model of health services use [23], we aimed to understand how sexually active adolescents in Connecticut (i.e., where confidentiality for HIV testing is mandated) and New Jersey (i.e., where confidentiality for HIV testing is not mandated) describe the following:

1. perceptions of HIV testing access and utilization;

2. awareness of state laws regulating minors’ access to confidential sexual health services;

3. the perceived roles of confidentiality and these laws in HIV testing utilization.

Methods

Conceptual Framework

According to Andersen’s behavioral model of health services use [23] (Fig. 1), health service utilization (e.g., HIV testing) and health-related outcomes (e.g., viral suppression) are a function of contextual (e.g., state laws regulating minors’ access to confidential sexual health services) and individual characteristics which influence personal health practices and predispose, enable (or hinder), and suggest a need for health services. In turn, outcomes affect subsequent predisposing and enabling factors, perceived need for health services, and health behavior. Predisposing factors include individual- and contextual-level demographic characteristics and attitudes, values, and knowledge related to health and health services. Enabling factors relate to having the resources necessary to access care, including individual- (e.g., income, health insurance) and contextual- (e.g., availability of services, health policies) level characteristics that support service utilization. At the individual level, perceived need for health services (i.e., how people view and experience their own health) and evaluated need (i.e., professional assessments of health status) may make individuals more or less likely to utilize services. At the contextual level, overall measures of community health (e.g., population health indices) shape the structural need for services.

Fig. 1.

Andersen’s behavioral model of health services use

Participants

Participants included 60 adolescents in Connecticut (n = 30) and New Jersey (n = 30). Regardless of age, minors in Connecticut may self-consent to HIV testing, and confidentiality is mandated [17]. In New Jersey, minors aged 13 and older may self-consent to HIV testing, but confidentiality is not mandated (i.e., parental disclosure is permitted) [17]. HIV testing also varies between these states; in 2021, 5.2% and 3.8% of high school students reported lifetime HIV testing in Connecticut and New Jersey, respectively [24]. These states were selected because they are relatively similar in terms of geographic location and sociodemographic characteristics, including lifetime HIV testing among adults (Connecticut: 39.5%; New Jersey: 38.0%) [25].

Adolescents were eligible to participate in the current study if they were: (1) 16–17 years old; (2) sexually active in the past 12 months; (3) residing in Connecticut or New Jersey; and (4) English-speaking.

Procedures

Participants were recruited via targeted social media (e.g., Instagram, TikTok) advertisements and snowball sampling. Potential participants were directed to a secure Qualtrics screening survey, which assessed demographic information and eligibility criteria. We reviewed responses to purposively select participants for demographic diversity and heterogeneity in HIV testing history. The first author (CA) contacted potential participants via their preferred method (e.g., text message, email) to invite them to participate in an in-depth interview to be held in a private location via Zoom. Among the 956 individuals who completed screening, 114 (11.9%) met eligibility criteria. Among eligible individuals, 82 (71.9%) were purposively selected for demographic diversity and heterogeneity in HIV testing and contacted, of whom 11 (13.4%) did not respond, 7 (8.5%) did not show up to an interview and did not reschedule, and 4 (4.9%) canceled an interview and did not reschedule.

Interviews were conducted using a semi-structured guide (see Supplementary Information) which assessed the following domains: background and sexual health history; the role of confidentiality in HIV testing; awareness of state laws regulating minors’ access to confidential sexual health services and their influence on HIV testing; and personal experiences with barriers and facilitators to HIV testing across adolescence. The interview guide was developed by the authors with input from experts in adolescent health, HIV prevention, and qualitative methods, and revised following pilot testing with two researchers not involved in the study.

Participants provided verbal consent prior to interviews. Interviews were conducted by the first author (CA) between November 2022 and June 2023 and lasted approximately 43 min on average (range: 26–69). The interviewer was a postdoctoral fellow at the time of the study, and has a PhD in social work, interest in adolescent sexual and reproductive health, expertise in HIV prevention research, and extensive semi-structured interviewing experience. As a White cisgender woman in her 30s and a researcher affiliated with Yale University, the interviewer was aware of the potential for power dynamics and her strong desire to improve adolescents’ access to sexual and reproductive health services to shape her interactions with participants. To mitigate this, she approached each interaction with humility and the recognition that participants are the experts of their own lives, encouraging open dialogue, avoiding making assumptions about their experiences, and actively listening to their perspectives. Participants had no relationship with or knowledge about the interviewer at the time of the study. However, the interviewer utilized established rapport-building techniques to create a positive, trusting environment and foster participant comfort, including early mutual self-disclosure, showing personal interest and unconditional positive regard, active listening, and displaying empathy [26]. In addition, participants were reminded that they could skip any questions they did not wish to answer or stop the interview at any time. Following completion of the interview, the interviewer compensated participants with a $50 Amazon e-gift card and made field notes to record important contextual details. Interviews were digitally audio-recorded, transcribed verbatim, and uploaded to Dedoose for analysis. No repeat interviews were conducted, and transcripts were not returned to participants for comment or correction. Although we likely reached saturation before completing 60 interviews, data collection continued until we achieved demographic diversity, heterogeneity in HIV testing history, and equal representation from each state. A waiver of parental permission was requested from the Yale University Institutional Review Board (IRB) because parental permission requirements may have resulted in disclosure of sexual behavior and/or identity with possible punitive results and potentially biased the sample. All study procedures, including waivers of parental permission and written documentation of consent, were approved by the Yale University IRB (Protocol # 2000033875) and are reported in line with COREQ criteria [27].

Data Analysis

Guided by directed content analysis [28]—a deductive approach to qualitative analysis where data is analyzed using predetermined categories or themes based on an existing theory or framework—we developed a codebook of a priori coding categories based on the conceptual framework (e.g., “Contextual—Predisposing”; see Supplementary Information). To evaluate interrater reliability, three of the authors (CA, BPT, JR) reviewed the operational definitions and coding rules for each category and then coded a randomly selected 20% (n = 12; 6 per state) of the transcripts. To enhance the trustworthiness of the analysis, coders reviewed transcripts multiple times, recording memos to capture observations and reflections on interview content, as well as their own biases and assumptions. All coders had expertise and prior experience with qualitative data analysis. Codes were compared, resulting in 89% agreement. In addition, data that could not be coded using existing definitions and coding rules were identified and discussed. After subsequent discussion of discrepant codes and revision of definitions and coding rules, transcripts were reviewed a second time and recoded if needed to ensure consistent code application. Once agreement was established for all codes, the codebook was finalized and the first author (CA) coded remaining transcripts. Dominant themes were identified by iteratively reviewing codes for relevance and impact, developing a data display to identify areas of thematic convergence and divergence across states, and engaging in weekly meetings to discuss interpretations until consensus was reached on the meaning of the data. Participants did not provide feedback on findings. Sociodemographic screening data were exported into Stata version 15.1 and summarized using descriptive statistics.

Reflexivity

This study was conducted from the vantage point of the university, a site for perpetuating and privileging specific forms of Western authoritative knowledge systems. Thus, our knowledge and each research phase are (consciously and unconsciously) complicit within historically situated foundations that are built to maintain violent hierarchies. Operating through these institutions, regardless of our social locations as individuals, we are organized by power, and we are complicit in carrying out harm. We collectively hold a responsibility to engage in a constant critique of and expose these norms, often hidden, that legitimize certain judgments that produce harm. Therefore, the authors leaned into tolerating the uncertainty to work against the ignorance and assumptions rooted in Whiteness and recognize their limitations as researchers from the outside and learn from adolescents with humility.

Results

The majority of participants identified as girls (58.3%), Black/African American (51.7%), and heterosexual (88.3%; Table 1). Over three-quarters of participants (76.7%) reported ever engaging in condomless sex. Half of participants (50.0%) reported using drugs or alcohol prior to sex. Approximately 41.7% of participants reported lifetime STI testing, while 18.3% reported ever being tested for HIV.

Table 1.

Sociodemographic characteristics

	Full Sample (N = 60)		Connecticut (n = 30)		New Jersey (n = 30)
	n	%	n	%	n	%
Sex assigned at birth
Male	25	41.7	13	43.3	12	40.0
Female	35	58.3	17	56.7	18	60.0
Gender
Boy	25	41.7	13	43.3	12	40.0
Girl	35	58.3	17	56.7	18	60.0
Age
16	30	50.0	18	60.0	12	40.0
17	30	50.0	12	40.0	18	60.0
Race
White	27	45.0	19	63.3	8	26.7
Black/African American	31	51.7	11	36.7	20	66.7
Asian	2	3.3	0	0.0	2	6.7
Ethnicity
Hispanic or Latino	11	18.3	3	10.0	8	26.7
Not Hispanic or Latino	49	81.7	27	90.0	22	73.3
Sexual identity
Heterosexual	53	88.3	26	86.7	27	90.0
Gay or lesbian	2	3.3	1	3.3	1	3.3
Bisexual	5	8.3	3	10.0	2	6.7
Sexual behavior
Opposite sex partners	56	93.3	27	90.0	29	96.7
Same sex partners	2	3.3	1	3.3	1	3.3
Partners of both sexes	2	3.3	2	6.7	0	0.0
Relationship status
Single	12	20.0	8	26.7	4	13.3
In a monogamous relationship	32	53.3	17	56.7	15	50.0
In a relationship, multiple sex partners	16	26.7	5	16.7	11	36.7
Age at first sex
14	2	3.3	0	0.0	2	6.7
15	32	53.3	14	46.7	18	60.0
16	21	35.0	14	46.7	7	23.3
17	5	8.3	2	6.7	3	10.0
Number of sexual partners, lifetime
1	16	26.7	9	30.0	7	23.3
2	23	38.3	12	40.0	11	36.7
3	12	20.0	5	16.7	7	23.3
4	5	8.3	3	10.0	2	6.7
5	3	5.0	1	3.3	2	6.7
10	1	1.7	0	0.0	1	3.3
Oral sex, past year	55	91.7	28	93.3	27	90.0
Vaginal sex, past year	56	93.3	29	96.7	27	90.0
Anal sex, past year	2	3.3	2	6.7	0	0.0
Condomless sex, lifetime	46	76.7	22	73.3	24	80.0
Substance use before sex, lifetime	30	50.0	13	43.4	17	56.7
STI testing, lifetime	25	41.7	8	26.7	17	56.7
HIV testing, lifetime	11	18.3	6	20.0	5	16.7

The analytic themes related to perceptions of HIV testing access and utilization, awareness of state laws regulating minors’ access to confidential sexual health services, and the perceived roles of confidentiality and these laws in HIV testing utilization directly correspond to the conceptual framework (Fig. 2). Thus, key themes are organized by contextual characteristics, individual characteristics, health behaviors, and outcomes.

Fig. 2.

Key themes, by Andersen’s behavioral model of health services use

Contextual Characteristics

At the contextual level, school-based sex education and stigma were identified as factors likely to predispose adolescents to utilize—or not utilize—HIV testing. State laws regulating minors’ access to confidential sexual health services, opt-out HIV testing implementation, and the availability of HIV prevention services were identified as factors that may enable—or hinder—HIV testing utilization among adolescents. We observed no differences in most of these factors between states.

School-Based Sex Education

Participants in both states expressed frustration with the lack of sexual health information provided in school-based sex education. Most participants described the emphasis of sex education on abstinence as inadequate and expressed a desire for additional information on STI/HIV prevention. One participant explained:

Like in my health class, I know their key focus was abstinence. But like, you know that’s not every teenager’s experience. So, I think like, being very transparent with like, “okay…here’s your options, here’s what’s most effective, here’s what you can do for STD prevention.”

—17-year-old girl, Connecticut.

Another participant echoed this concern, highlighting the need to expand sex education curricula to include practical instruction on engaging in safer sex:

In school they don’t really tell us about how to use condoms…I wish they would teach that. I was doing a biology class, and they talked about condoms, but don’t really understand that we might not know how to use them.

—17-year-old girl, New Jersey.

Several participants connected their HIV testing utilization to a lack of instruction on safe sex practices. One participant shared:

If I had actually known better about sexual health, I would have been more careful, and I wouldn’t have needed to get tested. It should be taught more at school. Take HIV, for instance. They don’t teach us much at all…I think everyone out there, sexually active or not, should know about these things.

—17-year-old boy, New Jersey.

Stigma

In addition to insufficient sex education, participants identified stigma as a formidable barrier to HIV testing. Participants suggested that stigma is pervasive and highly intertwined with shame, which makes discussion of sexual health issues—particularly HIV—challenging:

Kids our age are shamed for having like, a yeast infection… so, seeing that something as little as a yeast infection can be shamed, I feel like that makes it hard for people to talk about HIV or STDs, because they feel like that’s even worse and the shame would be, like, incredibly bad

.—17-year-old girl, New Jersey.

Because of the stigma surrounding HIV, participants emphasized the importance of confidentiality in sexual health service utilization. In fact, some participants attributed their decision not to be tested for HIV to confidentiality concerns and fears of stigmatization from peers. One participant shared:

Stigmatization is quite high among young people around here. Once one person hears it, everyone hears it…so, confidentiality is very, very important. That was one of my major reasons for not getting tested, because I felt maybe the doctor could tell me that he wouldn’t mention it to anybody, but if he had concerns about my safety, my life, maybe he would. You know, I jokingly mentioned to him that if I found out I was HIV positive, I would kill myself. And I thought maybe he would tell my parents, you know, so I wouldn’t kill myself…I had all of these thoughts when I was going to get tested. That’s why I decided not to.

—16-year-old boy, Connecticut.

State Laws Regulating Minors’ Access To Confidential Sexual Health Services

In both states, participants reported a lack of awareness of laws regulating minors’ access to confidential sexual health services:

I just know that confidentiality is really important and there should be no breach of confidentiality whatso-ever…but I’m not aware of any state laws that have to do with confidentiality or breaching confidentiality.

— 16-year-old boy, Connecticut.

As highlighted by one participant, learning about their ability to self-consent to sexual health services appeared to make adolescents more comfortable with being tested for HIV:

It makes me feel more comfortable knowing that I’m eligible for the testing. And it’s nice to know that the state wants young people my age, teens, to be tested and kept safe, knowing that some of us might be having sex. Even though parents are not aware of that. So, it’s good to know that we can get tested and feel protected.

—17-year-old girl, New Jersey.

A few participants commented that these laws may be particularly important to facilitate HIV testing for adolescents who face possible punitive effects of parental disclosure of sexual behavior:

I think that people will be more comfortable getting that testing, like, specifically, like, people who are gay and have families that aren’t accepting…hyper religious families or anything like that who don’t agree with either, like, the sexual partner in terms of sexuality or being sexually active at all. I think if they knew that these laws were in place and they had these rights, they would be able to seek that care and would feel much more comfortable doing so.

—17-year-old girl, Connecticut.

Many participants expressed a desire to have learned about state laws supporting their right to access confidential sexual health services sooner. In several cases, participants explicitly stated that they would have sought HIV testing earlier if they had known of these laws:

If I was aware of this before I would have been tested a long time ago. I had no idea there were laws like this. I feel like we should be taught this. I know a lot of people who would be tested if they knew this, if they knew their information was protected by law.

—17-year-old boy, Connecticut.

While participants in both states had positive reactions to state laws allowing them to self-consent to sexual health services, participants in Connecticut were especially enthusiastic about state laws mandating confidentiality for HIV testing. One participant explained:

These laws, like the ones in Connecticut, I think they could change their mindset when it comes to testing for HIV. I think they will put people at ease, you know? I mean, I wish we could’ve learned about this in school. If we were taught this, I’m sure we would have no problem going to get tested.

—17-year-old boy, Connecticut.

Implementation of Opt-Out HIV Testing

Participants also stressed the need for wider implementation of opt-out HIV testing to offer adolescents more opportunities to be tested for HIV. One participant shared:

Just giving the information and giving the choice…then the decision is completely on the adolescent to get tested or not. When there’s not the opportunity…it’s like, ask “would you like testing for HIV?”

—17-year-old girl, Connecticut.

Availability of HIV Prevention Services

Lastly, a few participants described the ways in which the availability—or lack thereof—of HIV prevention services may affect adolescents’ HIV testing access and utilization. For example, one participant sought HIV testing after engaging in condomless sex because he did not know where he could obtain a condom:

I actually was going to have sex for the first time, and I needed a condom. I needed to get it, but I didn’t know how to, you know? I couldn’t go to the doctor with my parents to get it and I couldn’t just walk up to someone and ask for it. So, there was no way I could get it because I would have had to maybe go with my parents or something. And that was what caused the incident in the first place.

—16-year-old boy, New Jersey.

Individual Characteristics

At the individual level, age, gender, fear, confidentiality concerns, and comfort with a healthcare provider were identified as key predisposing factors likely to affect HIV testing access and utilization. Transportation to and financing for HIV prevention services were identified as individual-level factors that may enable—or hinder—HIV testing utilization among adolescents. Perceived and evaluated HIV risk were identified as factors that may affect adolescents’ need for HIV testing. We observed no differences in these factors across states.

Age

Some participants attributed their lack of sexual health knowledge—and subsequent condomless sex and need for HIV testing—to their younger age. One participant explained:

Okay, well, the first time I went to that doctor was actually my first. The first time I had sex. And being in high school, I didn’t know much about sex. So, I just did it without protection.

—17-year-old boy, New Jersey.

Gender

Participants also noted that gender may affect adolescent HIV testing in unique ways. As highlighted by one participant, adolescent boys and girls have distinct sexual and reproductive health needs that may affect their HIV testing access and utilization:

I think, for the guys, we go for things like an HIV test. For the ladies, it’s more complicated. They might go for an HIV test, but also a pregnancy test.

—16-year-old boy, New Jersey.

In addition, several participants described ways in which sexism may prevent girls from testing for HIV:

I think it might affect girls differently, because, um, they might be perceived as, I guess, dirty, you know? People don’t really want to get called names, you know? And it’s like, if you have something, you could get called a “ho” or a “whore” or something like that. And I feel like for men, it would be a totally different case.

—17-year-old girl, New Jersey.

Fear

Participants identified numerous fears (e.g., of needles, test results, dying) that may prevent adolescents from testing for HIV. One participant suggested that fear is the most substantial barrier to HIV testing for adolescents:

Honestly, the only thing that might affect us in getting tested or prevent us from getting tested is fear. Because I for one, with or without the laws, have these fears when it comes to sexually transmitted diseases, especially HIV. I mean, it’s a very scary topic. Even as I’m talking about it right now, I’m very scared, because it’s something that once you have it, you carry it with you forever.

—16-year-old girl, New Jersey.

Participants emphasized the need to spread awareness about HIV to mitigate adolescents’ fears and increase their HIV testing uptake. One participant shared:

I think it’s all about enlightenment, because most people who are afraid of needles don’t even know that they can easily give their saliva for testing. It’s not even really the fear of needles. It’s the fear of knowing their status. They think their lives will be over, so I think they need to be enlightened. Like, you don’t have to be ignorant. Ignorance kills. Knowledge is power. Knowledge gives power…Get to know your status and you’ll be okay. That’s it.

—16-year-old girl, Connecticut.

Confidentiality Concerns

Confidentiality concerns appeared to be one of the most prominent predisposing factors. Many participants described confidentiality concerns as a major barrier to HIV testing:

That is the reason I haven’t gotten tested so far, because I’m scared…I don’t want people knowing my business. So, I have to be sure before I get tested that they are going to keep my confidentiality safe.

—17-year-old girl, Connecticut.

Confidentiality concerns were not limited to possible parental disclosure. Many participants expressed concern about the potential repercussions of others finding out about their sexual behavior, testing history, and test results. One participant described the possibility of being bullied if she tested positive for HIV:

Okay, there are bullies in my school, so imagine if they find out like, “oh, that girl is positive.” I’d literally kill myself. So, yeah, I fear for my confidentiality. I fear for my status. I just don’t wanna find out that I’m living with anything bad. I wanna be free.

—17-year-old girl, Connecticut.

Due to confidentiality concerns, many participants indicated that they had withheld sexual health information from healthcare providers:

Sometimes I don’t tell him everything about my sexual life because I feel like he’s going to tell my mother.

—16-year-old girl, New Jersey.

Most participants insisted that addressing confidentiality concerns is integral to increasing HIV testing utilization among adolescents. One participant explained:

Because if it isn’t crystal clear, if people feel “we ain’t safe. Your confidentiality ain’t safe,” I guarantee 80% of them ain’t gonna do that shit because they don’t have that assurance. We want our confidentiality protected. We want our private lives kept to ourselves and our doctors.

—17-year-old girl, Connecticut.

Comfort with a Healthcare Provider

Comfort with a healthcare provider was identified as another important individual-level factor likely to facilitate HIV testing for adolescents. As demonstrated by one participant, feeling comfortable appears to be pivotal to engaging in sexual health counseling:

He keeps advising that we should be safe, you know, use condoms…not necessarily just because of pregnancy but all sorts of things, like STDs, HIV, that stuff…You know, questions about sex, especially with a person one-on-one, can be a bit uncomfortable. So, I just respond to the things he tells me to do, and, like I said earlier, he has a way of making me very relaxed before these conversations.

—16-year-old boy, Connecticut.

Several participants also connected comfort with a healthcare provider to increased comfort testing for HIV. One participant shared:

With the doctor I have now, I am 100% comfortable with whatever test.

—17-year-old boy, New Jersey.

Transportation to and Financing for HIV Prevention Services

Participants rarely discussed individual-level factors that may enable—or hinder—HIV testing utilization among adolescents. In one case, a participant noted that a lack of transportation and/or financing may prevent adolescents from testing for HIV:

…they might not be able to be tested because of their location, or they’re poor…they might think it’s something you have to pay upfront for, and, you know, they don’t have any money for it, or location-wise, they aren’t close to a healthcare provider.

—17-year-old boy, New Jersey.

Perceived and Evaluated HIV Risk

At the individual level, perceived and evaluated risk for HIV infection appeared to function as both barriers and facilitators to HIV testing. Participants with lower perceived HIV risk often reported less need for—and utilization of—HIV testing, and vice versa. For instance, one participant explained:

I have a lot of confidence that I’m not gonna have it, because as far as I know my partner has only been with me…I guess I was confident that it was gonna come back negative, so I didn’t see why I would put myself through that.

—17-year-old girl, New Jersey.

Participants rarely spoke of evaluated need for HIV testing as a factor that may affect HIV testing utilization. However, one participant with a higher perceived need for HIV testing ultimately decided against being tested for HIV, despite his doctor encouraging him to do so:

I told him, “Well, for some reason I want to be tested.”…I made an appointment for the following week. But after talking to my friends about it, I felt like I made the wrong choice…I was sick about it. Waiting the few days for the test was like a few days to Judgment Day, so I called and canceled. My doctor tried to convince me to come…I told him I needed time to think about it. Well, I’m still thinking.

—16-year-old boy, Connecticut.

Health Behaviors

Engaging in condomless sex and having multiple sex partners were identified as personal health practices likely to affect HIV testing utilization among adolescents. In addition, aspects of the medical care process—specifically, receipt of confidential care and sexual health counseling—appeared to directly affect adolescents’ HIV testing access and utilization. Among participants who reported HIV testing, experiences varied widely and appeared to affect subsequent sexual behavior and HIV testing utilization. We identified no differences in health behaviors between states.

Condomless Sex and Multiple Sex Partners

Participants described engaging in condomless sex for a variety of reasons, including lacking sexual health knowledge. One participant explained that she had never learned about the risks associated with condomless sex, but was ultimately tested for HIV after talking with her doctor:

Because I had sex without protection, and I was scared. And I had never really learned anything about that in school. So that’s why I asked my doctor.

—16-year-old girl, New Jersey.

Many participants also reported engaging in condomless sex because they did not have access to condoms. One participant shared:

And it just happened so fast. We just started to kiss, it was spur of the moment, and we didn’t have a condom. So, I pleaded with him to just pull out.

—16-year-old girl, New Jersey.

In other instances, participants explained that condomless sex occurred in the context of substance use:

I was kind of drunk, so my memory is rusty. I think we started with a condom but then took it off at some point.

—17-year-old girl, New Jersey.

Although most participants indicated that they were in monogamous relationships, some described having multiple sex partners. For example, one participant reported that both he and his girlfriend have other sexual partners:

Yeah, I’ve had other sexual partners. She was having other sexual partners, too. So, I needed to make her jealous.

—16-year-old boy, Connecticut.

Having multiple partners or suspecting that a romantic partner had other sexual partners appeared to facilitate condom use among participants. For example, one participant whose boyfriend had multiple sexual partners reported that she consistently uses condoms to protect herself from STIs/HIV:

He keeps going around my back…knowing the kind of person he is, I use protection all the time. I don’t know if he’s carrying an infection and if he’s going to come and give it to me.

—17-year-old girl, Connecticut.

Overall, engaging in condomless sex and/or having multiple sex partners appeared to facilitate HIV testing utilization. In the case of one participant, disclosing condomless sex to his doctor not only resulted in STI/HIV testing, but also prompt STI diagnosis and treatment:

Okay, well, there was this time that I had unprotected sex with this girl from school and afterwards I was feeling itchy. Itchy down there. It went on for a few days and I was scared…so, I went to the doctor’s office…at first, I was kind of hesitant because I felt like he was going to talk to my parents about it, but he actually made me feel very comfortable. So, we spoke, I told him how I felt. Then he ran some tests, and it turned out I actually had an infection. I can’t remember the name. But he gave me some treatment. That was it. And I’ve continued seeing him because I feel comfortable with him.

—17-year-old boy, New Jersey.

Confidential Care

Participants who indicated that they had time alone with and received confidentiality assurances from healthcare providers during visits reported increased comfort engaging in discussions about sexual health issues, disclosing sexual behavior, and testing for HIV. In contrast, sexual health counseling and sexual health service utilization seemed to rarely occur among participants who indicated that they had not had time alone with and/or received confidentiality assurances from a healthcare provider during visits.

Most participants revealed that they do not share much with healthcare providers when their parents or guardians are present. A few participants noted that they have never had time alone—and therefore, never discussed sexual health issues—with their doctors:

My pediatrician isn’t really somebody I talk to normally. I’m just sort of there. And when we do talk, it’s more them saying, you know, “breathe,” like when they’re putting the stethoscope thing on. I don’t really like talk to them outside of that.

—17-year-old boy, New Jersey.

However, many participants reported having time alone with their doctors and stressed its importance. One participant stated:

I’m not sure what the parameters are on this, but I think healthcare providers should be allowed to make the parent leave at a certain age because, like, even though they’re minors, they’re entitled to care.

—17-year-old girl, Connecticut.

Many participants indicated that their doctors ask about sensitive health information (e.g., sexual behavior) after their parent or guardian leaves the room. In addition, participants indicated that they are much more comfortable discussing sexual health topics without their parents or guardians present. For example, one participant explained:

Well, it’s quite different when my mom is not there. I could open up to him because he listens and isn’t judgmental. So, I got the opportunity to open up to him about things I wouldn’t say if my mom was there.

—16-year-old girl, Connecticut.

Receiving confidentiality assurances also appeared to directly facilitate HIV testing utilization. In some cases, participants understood discussions that occurred in the context of time alone with their doctor as confidential, even if confidentiality was not explicitly discussed:

Once I got older, there’s always a time where it’s like, “Oh, your mom’s going to step out. Is there anything that you wanted to talk about?” And like, I understood that to be confidential.

—17-year-old girl, Connecticut.

In other instances, participants recounted ways in which receiving direct confidentiality assurances encouraged them to speak openly with their doctors. Most confidentiality assurances did not appear to be specific to sexual health services. However, a few participants indicated that they had been informed of their ability to be tested for STIs/HIV testing confidentially:

I tried as much as possible to make sure it was confidential. I asked him over and over, even though he categorically told me that it wouldn’t be disclosed, that it stays in his office. He said I could get tested without worrying about that.

—17-year-old girl, New Jersey.

Sexual Health Counseling

Sexual health counseling was also identified as an important aspect of the medical care process that may facilitate HIV testing for adolescents. Many participants indicated that healthcare providers asked about their sexual behavior and provided them with useful sexual health information. Participants often reported feeling more comfortable engaging in sexual health counseling after receiving confidentiality assurances from their healthcare providers. One participant stated that although he is not always comfortable discussing his sexual behavior, he is honest with his doctor because he trusts that their conversations are confidential:

…some of the questions I’m not comfortable with, but for my health I give him honest answers, and well, he advises me on what to do. He makes me understand that anything I come to the clinic for is confidential, unless I want my parents to be aware of it.

—16-year-old boy, Connecticut.

Several participants noted that their receipt of sexual health counseling increased after disclosing condomless sex to a healthcare provider. One participant explained that he has received guidance on safe sex practices since discussing condomless sex with his doctor:

Since that first incident he’s been asking me questions about whether I’ve had sex recently, whether I’ve had protected sex… I try to tell him the truth, and he tells me to make sure I use protection, a condom or something. Before that first incident I think he would just ask me general questions but ever since he doesn’t do that. He makes a point to advise me.

—16-year-old boy, New Jersey.

HIV Testing

Among participants who reported HIV testing, experiences varied widely. Most participants described the experience of being tested for HIV as uncomfortable or distressing. As highlighted by one participant, these feelings often persisted despite healthcare providers’ attempts to provide reassurance:

I was so scared. Like, “what happens if I have HIV?” The nurse was telling me, you know, “there is life after HIV” and stuff like that but I just felt like, if I had HIV, that would be the end for me. I was so, so scared.

—16-year-old boy, New Jersey.

Although participants’ descriptions of being tested for HIV were largely negative, there were a few instances where participants highlighted positive aspects of the HIV testing process. For example, one participant expressed his surprise that he was able to quickly receive results with rapid HIV testing:

It was quite fast. Actually, I think it was like, the fastest result I’ve ever gotten. I thought it would take days, but it only took 15–20 min.

—16-year-old boy, New Jersey.

Many participants reported an increase in condom use after being tested for HIV. For example, one participant shared that he consistently uses condoms to avoid being tested for HIV again in the future:

Well…my first time was such a bad experience that I decided to always use protection.

—17-year-old boy, New Jersey.

However, HIV testing appeared to increase subsequent HIV testing utilization among some participants. One participant described her continued efforts to protect herself from HIV infection:

…so far, I have been careful. But I get tested once every 3 months.

—16-year-old girl, Connecticut.

Outcomes

Outcomes related to HIV testing access and utilization included participant’s perceived and evaluated heath and consumer satisfaction. We identified no differences in these outcomes between states.

Perceived and Evaluated Health

Although discussion of perceived and evaluated health was limited, several participants reported that experiencing symptoms led them to believe they would test positive for STIs/HIV:

I had a lot of things running through my mind, thinking I had every STD and HIV. I was just so scared, so hearing it wasn’t HIV was a big relief for me. Since then, I’ve used condoms every time.

—17-year-old boy, New Jersey.

Several participants reported that their evaluated health was contradictory to their perceived health. For example, by seeking STI/HIV testing, one participant learned that the symptoms she was experiencing were due to a urinary tract infection:

When I went because I was scared of having an STD, he asked me if I’m having sex, when I last had sex. Then he ran a test and that’s how I found out it wasn’t an STD but a urinary tract infection.

—17-year-old girl, New Jersey.

Consumer Satisfaction

Overall, participants appeared to be satisfied with their health care. Many participants who reported feeling comfortable with a healthcare provider expressed satisfaction with their sexual health service utilization. One participant conveyed:

I think I personally am lucky with the pediatrician I have…she’s very open with everything. And, like, I feel comfortable asking her things…In May, I had started birth control and she said, okay, after you take the first three packs, you’re going to come back and we’re going to check in. And she said at your next physical we’re going to do STD testing just in case…she’s like, been pretty great.

—17-year-old girl, Connecticut.

Many participants were particularly satisfied with sexual health service provision when they had received confidentiality assurances. For instance, one participant expressed gratitude that her doctor did not notify her parents about her sexual behavior and STI/HIV testing:

I’m so grateful that my provider hasn’t said anything. I really love her.

—17-year-old girl, New Jersey.

Although most participants appeared to be satisfied with sexual health service provision, a few expressed dissatisfaction with their care. For example, one participant described the lack of sexual health counseling he received from his doctor:

I don’t believe they’ve really helped at all in that regard. I don’t really remember even talking about that that much. It’s not something I’ve brought up, to be fair, but it wasn’t something I was asked about either.

—17-year-old boy, New Jersey.

Regardless of their level of satisfaction, most participants expressed a desire to receive additional sexual health information from healthcare providers. As highlighted by one participant, healthcare providers may be an important source of this information for adolescents:

…we’re not getting this information from anywhere if we’re not getting it from our parents or our pediatricians or our health classes…I don’t necessarily feel comfortable going to my parents with all this stuff, but like, if pediatricians make it more readily available or like doctors in general, it would just be easier to be educated and understand.

—17-year-old girl, Connecticut.

Discussion

This qualitative study was one of the first to explore perceptions of HIV testing access and utilization among sexually active adolescents in two U.S. states with varying laws regulating minors’ access to confidential sexual health services. The use of Andersen’s behavioral model of health services use [23] revealed several key contextual and individual characteristics, health behaviors, and outcomes (Fig. 2) that may drive HIV testing utilization—or lack thereof—among sexually active adolescents. Overall, participants in Connecticut and New Jersey shared similar perceptions of access to and utilization of HIV testing, state laws regulating minors’ access to confidential sexual health services, and the roles of confidentiality and these laws in HIV testing utilization.

In both Connecticut and New Jersey, participants stressed the importance of confidentiality in sexual health service utilization. Confidential care [15, 29-30]—i.e., having time alone with a healthcare provider during visits, the ability to self-consent to sexual health services, and the privacy of health information maintained—was identified as a key aspect of the medical care process underlying participants’ perceived access to and utilization of HIV testing. In line with evidence suggesting that adolescents who receive confidential care are more likely to engage in important discussions about sexual health issues, disclose sensitive sexual health information, and receive appropriate sexual health services [31-38], participants who had time alone with and received confidentiality assurances from healthcare providers reported increased comfort engaging in HIV prevention counseling, disclosing condomless sex, and being tested for HIV. Many participants—particularly those in Connecticut—indicated that state laws mandating confidentiality for HIV testing addressed their confidentiality concerns and made them feel more comfortable seeking HIV testing. Taken together, these findings suggest that routine confidential care provision and the passage of state laws that mandate confidentiality for HIV testing may mitigate confidentiality concerns and facilitate HIV testing utilization among sexually active adolescents.

Despite stressing the importance of confidentiality in sexual health service utilization, the overwhelming majority of participants in Connecticut and New Jersey reported a lack of awareness of state laws regulating minors’ access to confidential sexual health services. This may explain the lack of thematic differences in perceptions of HIV testing access and utilization between states. Participants underscored the need to increase adolescents’ awareness of their right to waive parental permission and self-consent to sexual health services, with most indicating that they would have tested for STIs/HIV had they learned about state laws supporting minors’ right to access to these services sooner. Thus, in addition to providing comprehensive sex education [39], school-based sex education teachers and healthcare providers should educate adolescents about their ability to self-consent to sexual health services, as well as state-level confidentiality protections and limitations. Implementation strategies may be effective for promoting the adoption and integration of multilevel health policies, like comprehensive sexual health education, in school and healthcare settings to serve and empower adolescents.

Only 18% of participants in the present study reported ever being tested for HIV, highlighting the need to increase HIV testing uptake among adolescents. In line with recommendations for universal HIV screening for patients aged 13 to 64 in all healthcare settings in the U.S. [10], healthcare providers should improve their implementation of opt-out HIV screening with adolescent patients to normalize HIV testing as part of routine care, thereby reducing the stigma associated with HIV testing and enabling earlier detection and treatment. As highlighted by participants, improving the implementation of opt-out HIV screening may increase adolescent HIV testing uptake by giving adolescent patients more opportunities to test for HIV. While minors may consent to HIV testing without parental permission in all 50 states and the District of Columbia [17], opt-out HIV screening may be more complicated in jurisdictions that do not mandate confidentiality for HIV testing and/or lack payor-related confidentiality protections to address health insurance billing and claims processes that may inadvertently breach confidentiality. Therefore, to advance patient autonomy, opt-out HIV screening may benefit from systems that support training providers in trauma-informed communication to strategically assess anticipated risks of disclosure and facilitate unique support for adolescents who test positive for HIV [40-41]. Given that many participants identified fear as a substantial barrier to HIV testing, increased provision of comprehensive sex education [39] and counseling, discussion of relevant state-level confidentiality protections, and availability of on-site and oral and rapid testing methods may facilitate acceptance of HIV testing among adolescents.

While this qualitative study contributes to the knowledge base by evaluating perceptions of HIV testing access and utilization across two states with varying laws regulating minors’ access to confidential sexual health services, it does have limitations. Although we selected Connecticut and New Jersey because they are relatively similar in terms of geographic location and sociodemographic characteristics, it is possible that perceptions of HIV testing access and utilization among adolescents were shaped by state differences other than laws regulating minors’ access to confidential sexual health services. For example, the percentage of the population without health insurance is higher in New Jersey than Connecticut (8.5% vs. 6.9%) [42]. We were unable to evaluate perceptions of HIV testing access and utilization among younger adolescents as individuals less than 16 years of age were excluded from participation for ethical and scientific reasons. Perceptions of HIV testing access and utilization may differ substantially between younger and older adolescents. Convenience and snowball sampling may have introduced bias, as only adolescents on social media were exposed to study advertisements and may have referred friends with similar perspectives. Although the use of a directed content analysis approach [28] enabled us to analyze the data based on the conceptual framework, identifying codes a priori may have limited the emergence of other important themes. By meeting frequently throughout the analysis process, we attempted to mitigate these potential limitations and ensure that resultant themes accurately captured participants’ experiences. In fact, although discussion of contextual-level need factors (e.g., community-level HIV prevalence) and quality of life did not occur in any interviews, we found that Andersen’s behavioral model of health services use [23] was highly suitable for categorizing factors that may shape perceptions of HIV testing access and utilization, awareness of state laws regulating minors’ access to confidential sexual health services, and the perceived roles of confidentiality and these laws in HIV testing utilization among sexually active adolescents (Fig. 2). Despite this study’s shortcomings, our findings contribute towards the greatly underexplored relationship between state laws regulating minors’ access to confidential sexual health services and adolescent HIV testing access and utilization. Effective implementation of policy-related interventions among adolescents requires a nuanced and multilevel understanding of the various barriers and facilitators to routine HIV testing.

In conclusion, our findings suggest that confidentiality concerns may be a key mechanism that can be acted upon to increase adolescent HIV testing uptake. To address inequities in access to confidential HIV testing, legal barriers to confidential sexual health service utilization should be eliminated, and healthcare providers should implement confidential care with adolescent patients as standard practice.

Supplementary Material

Supplementary Information The online version contains supplementary material available at https://doi.org/10.1007/s10461-025-04738-3.