Perceptions about using a patient portal to self-disclose HIV-related information to sexual partners: a qualitative study among adolescents and emerging adults living with HIV

Abstract

Patient portals may enhance HIV viral load (VL) disclosure experiences between adolescents and emerging adults living with HIV (AHIV) and their partners. This qualitative inquiry investigated AHIV perspectives on using a patient portal to self-disclose HIV-related information to partners. 16 AHIV aged 13–25 years were recruited at a health center in the United States to participate in audio-recorded virtual in-depth interviews (IDIs). Participants discussed perspectives on HIV self-disclosure, facilitating self-disclosure processes using the patient portal, and what they wanted others to know about AHIV. Content analysis was conducted using combined deductive and inductive coding. Discussion topics were analyzed in the context of three emergent perspectives: (a) Sexually Naïve, (b) Approach-oriented, and (c) Disclosure Averse/Indifferent. Patient portals were perceived to offer unique advantages by providing a “receipt” for HIV VL and possessed key opportunities to educate partners about living with HIV, Undetectable=Untransmittable, and counter pervasive HIV myths. For some, the perceived negative consequences of HIV disclosure outweigh the potential benefits of leveraging the portal. AHIV support using portals to reverse the stigma anticipated with HIV self-disclosure. Research on practical and effective strategies for safely engaging in patient portal facilitated disclosures is warranted.

Introduction

Background

New HIV infections among adolescents and emerging adults aged 13–24 years accounted for 20% of the estimated 31,800 new infections in 2022 in the United States (U.S.) (Centers for Disease Control and Prevention (CDC), 2024). HIV self-disclosure to sexual or romantic partners is beneficial to HIV prevention and can increase the likelihood of condom use and other safer sex practices, including testing and PrEP use among HIV sero-different relationships (CDC, 2024; Gabbidon et al., 2020; Westmoreland et al., 2020). Patient portals offer adolescents and emerging adults living with HIV (AHIV) the capacity to view HIV viral load histories and antiretroviral (ARV) medications. Prior studies show that adolescents and emerging adults perceive patient portals as acceptable tools to help overcome psychosocial barriers that inhibit communications about sexually transmitted infection (STI) testing, such as STI-related stigma, low self-efficacy, low valuation and disclosing inaccurate STI testing information (Jackman et al., 2018; Jackman et al., 2020a; Jackman et al., 2020b). The perceived advantages of using, versus not using, a patient portal to disclose STI test results to partners center on beliefs that the use of the portal will improve (a) sexual health communication between partners, (b) assurance in the information exchanged between partners and (c) healthy decision-making (Jackman et al., 2021a). However, these studies have not focused on the uniqueness of what it means for people living with HIV to self-disclose their HIV versus disclosing testing for other STIs (Jackman et al., 2021a; Jackman et al., 2023). As a first step toward identifying what behavioral belief constructs underlie the perceived advantages of using patient portals for HIV self-disclosure, in-depth research is needed to qualitatively explore AHIV perspectives about allowing sexual or romantic partners (hereinafter referred to as partners) to view their HIV-related health information on their patient portal.

HIV stigma

Persisting HIV stigma, or negative attitudes and beliefs about people living with HIV, can discourage AHIV from self-disclosing their HIV to partners (Centers for Disease Control and Prevention., 2024). One study among 269 adults living with HIV aged 18–74 years found that adults older than 22 years were more than 3 times as likely to disclose to partners compared to young adults aged 18–22 years (O’Brien et al., 2003). Another study among 991 young men who have sex with men aged 12–24 found that only 52% reported disclosure to partners (Cook et al., 2015). HIV-related stigma may also contribute to why people living with HIV are less likely than their sero-different counterparts to use patient portals to share STI-related information with partners; especially with non-main or casual partners (Jackman et al., 2021a; Jackman et al., 2023). In states such as Maryland, it is a misdemeanor crime to knowingly transfer or attempt to transfer HIV to another individual (Justia, 2024). Such HIV criminalization laws are purported to perpetuate HIV stigma, and bills have been proposed to abolish such laws (Baugher et al., 2021; Maryland General Assembly, 2024). Stigma has been linked to disclosure-related anxiety, referring to the fear and worry associated with thoughts of disclosing HIV status to others (Robinson et al., 2023). Anticipated stigma associated with disclosure concerns can be more profound than concerns about negative self-image and public attitudes (Robinson et al., 2023; Rydström et al., 2016). Yet AHIV must navigate decisions on when and how to self-disclose HIV positivity with partners amidst tensions precipitated by immense HIV-related stigma.

Theory-based behavioral frameworks

Approaches to investigating perceptions about leveraging a patient portal to self-disclose HIV-related information to partners may be well informed by theory-based behavioral frameworks. The Disclosure Processes Model (DPM) posits that disclosure must be conceptualized as a single process involving either approach-focused (e.g., obtaining favorable outcomes such as strengthening an important relationship or being honest) or avoidant-focused (e.g., avoiding adverse outcomes such as social rejection and conflict), decision-making and outcome processes; further, that prior disclosure experiences inform future disclosure decisions (Chaudoir et al., 2011). In addition, behavioral constructs, such as one’s attitudinal, normative and control beliefs, inform behavioral intentions for leveraging the portal for self-disclosing HIV-related information; and these intentions inform behavior practice (Mayring, 2000). Finally, identifying the perceived advantages of using patient portals to facilitate disclosures, compared to any other alternatives, can uncover motivations for adopting innovations (Rogers, 2003). Given the lack of research specially focused on patient portal use in HIV-related disclosure events, in-depth qualitative inquiry, drawing from Grounded Theory methods is useful to explore what theory-based behavioral constructs may be most salient to decisions to approach or avoid disclosing HIV health information using the portal.

Study purpose

The current qualitative inquiry explored behavioral perceptions about using the MyChart patient portal to self-disclose HIV-related information to partners among AHIV receiving care from an U.S. academic health center located in Baltimore, Maryland. Perceptions were explored alongside participants’ prior HIV self-disclosure experiences and what specific HIV awareness knowledge may be most helpful in improving public attitudes about AHIV. Ultimately, this research aims to illuminate how patient portals can support and improve HIV-related self-disclosure experiences among AHIV.

Materials and methods

Study overview

The Electronic Sexual Health Information Notification and Education II (eSHINE II) Study was a qualitative investigation focused on the use of patient portals among AHIV in the context of HIV care (Jackman et al., 2023). Between May 2022 and March 2023, a trained research team recruited AHIV aged between 13 and 25 years from a U.S.-based academic health center. Eligible participants were identified through the health center’s electronic health record system. The study was introduced to providers during team meetings at two clinics within the health center that specialize in caring for AHIV. With provider permission, the research team shared study information with eligible participants. Interested patients were then screened for eligibility and, if eligible, provided informed consent. In addition to patient recruitment, healthcare workers at the study site were recruited to share their perspectives on patient portal sign-up processes and engagement practices between AHIV and care teams. Recruitment continued until thematic saturation was achieved regarding perspectives on the utility of patient portal.

Semi-structured and audio-recorded in-depth interviews (IDIs) lasting 45–60 min were conducted using Zoom software Version 5.9.6 (Zoom Communication, San Jose, CA). The interview guides were pilot-tested with a youth advisory board and revised based on feedback. All interviews were conducted by the lead investigator, an expert in qualitative research methodologies (Jackman et al., 2021b; Jackman et al., 2023a). During the interviews, AHIV discussed their attitudes and experiences related to self-disclosing HIV to sexual partners, including using their patient portal as a tool for disclosing HIV viral load information. Participants were also asked to share what they believe is important for others to understand about people living with HIV. The AHIV participants provided informed consent/assent and received 65 USD for their time. Parental consent was not obtained, as recruitment focused on AHIV patients seeking legally protected confidential HIV services at the clinical study site. The study was reviewed for ethical human subject research standards and approved by the institutional review board at Johns Hopkins University.

Data analysis

The IDIs were transcribed verbatim. Three researchers conducted a qualitative content analysis of the IDIs using combined deductive and inductive coding (Drisko et al., 2015). Qualitative content analysis methods search out and apply meanings within texts (Drisko et al., 2015). Further, it may be applied to compare and contrast group differences (Drisko et al., 2015), such as differences in perspectives and experiences between AHIV who are supportive versus not supportive of leveraging their patient portal for HIV self-disclosure to sexual partners. The lead investigator outlined an a priori framework of the main thematic topics and emergent subthemes focused on illuminating salient behavioral attitudes, experiences, and self-efficacy beliefs for self-disclosure and the perceived relative advantages of using patient portals to facilitate disclosure of HIV-related health information. The analytical research team was comprised of the lead investigator and two trained researchers. Two initial IDI transcripts were independently coded by the research team to conduct a formative reliability check. Emergent subthemes within the HIV self-disclosure topics were iteratively refined or expanded in team meeting sessions to ensure that important concepts were included in the analysis over a series of six analytical team meeting sessions. The coding frame was then applied to code the subsequent IDIs. Research team members were assigned IDI transcripts to analyze using the coding framework. Findings were presented and discussed in depth during weekly analytical team meeting sessions. Analytical team sessions were designed to systematically discuss interpretations of the highlighted quotations in relation to the HIV self-disclosure themes and subtheme framework. Disagreements in interpretation were discussed in detail, often referencing full transcripts to provide additional context until a consensus was reached among the analytical team.

Results

Sample overview and disclosure context

Sixteen AHIV aged 13–25 years participated in virtual IDIs; 12 (75%) participants were female and 10 (63%) participants had perinatally acquired HIV (Table 1). In addition, 15 (94%) participants were identified as Black/African Americans (data not shown in tables). Fifteen (94%) participants had a viral load below 60 copies per milliliter (Table 1). Participants almost uniformly expressed living with HIV as a highly stigmatized and deeply personal matter unique from other chronic conditions. A 16-year-old participant (ID12) said,

Like if somebody had diabetes, nobody has a problem with that. They’re just like, okay, I understand ... But when it comes to HIV, it’s like people are just like, oh, man, she’s this girl, she’s that girl. I don’t want to be around her.

For participants with perinatally acquired HIV, it was important for others to understand that their HIV diagnosis was not acquired through sexual contact. Participants also struggled with the idea of being perceived by others as “dirty”. A 20-year-old participant with sexually acquired HIV described his battle with not perceiving himself as dirty:

I remember when I got diagnosed with it and the thought in my mind, first of all, I couldn’t even say the three syllables. I couldn’t even fathom that that is something that is coming out of my mouth for me. And then on top of that, I had to constantly tell myself that I’m not dirty and I’m not all of these different things, and I’m still the same person that I was before I had this. [...] it’s a constant uphill battle of constant judgment by yourself and others. – ID07

Table 1.

Sample characteristics among adolescent and emerging adult patients living with HIV aged 13–25 at an urban hospital, 2022–2023, N = 16.

Perspective	ID	Age	Sex	Transmission route	HIV viral load (copies/mL)
Sexually Naïve	ID06	22	Male	Perinatal	<20
	ID09	20	Female	Perinatal	<20
	ID12	16	Female	Perinatal	<20
	ID14	13	Female	Perinatal	<20
	ID15	16	Female	Perinatal	<20
	ID16	13	Female	Perinatal	<20
Approach Oriented	ID02	21	Female	Perinatal	45.9
	ID03	22	Female	WSM*	<20
	ID05	25	Male	MSM	<20
	ID08	25	Male	MSM	<20
	ID10	23	Female	WSM	<20
	ID11	21	Female	Perinatal	5820
	ID13	22	Female	Perinatal	<20
Disclosure Averse/Indifferent	ID01	21	Female	WSM	<20
	ID04	20	Female	Perinatal	52.2
	ID07	20	Male	MSM	<20

^*WSM refers to HIV acquisition via female-to-male sexual contact; MSM refers to HIV acquisition via male-to-male sexual contact

Disclosing HIV to partners engenders much thought and consideration of the potential disclosure outcomes. Participants referred to pervasive misinformation about HIV, concerns about secondary disclosure, preserving a sense of privacy and discerning which partners had earned the right to know their status. There were also indications that some participants were not entirely confident that there is zero risk of sexual transmission of HIV when one’s viral load is below 200 copies per milliliter [i.e., undetectable = untransmittable (U = U)]. During the interview with ID10, 23 years old, she asked, “If [I am] undetectable [...] and I had sex with this person, they didn’t take PrEP, they didn’t [use a] condom or nothing, is there a chance that they can catch it?”

While disclosure was expressed as a choice for the discloser to make at their choosing, it was also described as a responsibility to the person who may be a sexual or romantic partner. We describe perceptions about using patient portals to facilitate disclosure from three emergent perspectives: (1) the sexually naïve, (2) approach-oriented, and (3) self-disclosure averse or indifferent.

AHIV and HIV self-Disclosure

The sexually naïve perspective

Definition.

The sexually naïve perspective can be described as participants who report having no lifetime sexual partners. The sexually naïve participants comprised all adolescent minors and two emerging adults, all with perinatally acquired HIV.

Disclosure perceptions and lived experiences.

Participants viewed disclosure as a distal but important event to occur with their future sexual partners. “I think I would definitely discuss if I was going to do anything with them just to make sure everyone stays safe and healthy” (ID09; 20 years old). A 13-year-old participant expressed her belief that people have the right to know whether their romantic partner is living with HIV (Table 2).

Table 2.

Perceptions about HIV self-disclosure from the Sexually Naïve perspective.

Disclosure Perceptions and Lived Experiences
Emergent Subthemes	Quotation
Intentions for disclosure to future partners	I think I would definitely discuss if I was going to do anything with them just to make sure everyone stays safe and healthy. - ID09
Right to know	I feel like if you’re romantically with someone, they have the right to know that you have HIV. - ID16
Avoidance coping	I never imagined it, because I never really want to imagine it. I know it’s going to happen. But I don’t want to think about it. I didn’t want to think about it before because it was just heavy. - ID12
Fear of relationship termination	[...] they’re going to stay away from me or not talk to me. - ID15
Delaying the pursuit of a romantic relationship	And it deters me in going in that direction. I know I want to get married one day, and I’m going to have to do that. But it’s mixed emotions on that. - ID12
Unpredictable consequence	The thing about that is not a lot of people are going to understand how you ended up with HIV ... so you’re not sure if it’s a good idea to tell them. You don’t know how they’re going to feel. - ID06
Requirement of trust and rapport	If I’ve known them for quite some time, and they’re very understanding because a lot of people, their emotions can change like a split second depending on what you tell them or what happens. - ID06
Increasing trust through disclosure	The trust between you and that person would skyrocket. - ID16
Patient Portal Disclosure
Emergent Subthemes	Quotation
Opportunities for education	If I show someone my viral load [...], if I explain to them what would happen if that number went upwards, past the boundary lines [...], Show them how the medication would work [...] That would probably be a good thing. Because you’re literally educating them through visual learning. - ID06
Tailoring what is viewable on the screen	[...] giving a person access to more information than they might need or than you want to give them. So since it’s all laid out on one page and you’re just trying to show them one thing, they can see all this other information that they might not need to see. - ID09
Restricting information sharing to in-person viewing	I wouldn’t use it for that purpose [...] I’m a very private person, even with my parents [...] yeah, you can take a look at it. I have no problem with it. But I don’t want it being shared. - ID12
Portable sharing of information	If you want the other person to have access to your MyChart, I think MyChart should like be able to like - for the other person to be able to see when you’re detectable or not, and if they should or should not be romantic at this certain time. - ID16
What People Should Know About AHIV
Emergent Subthemes	Quotation
The myths are not true	There’s a lot of stigma around it in society and there’s so many myths [...] And making sure [to help] them understand that there are so many myths out there and a lot of those are very untrue. And you can’t get HIV from kissing people, stuff like that. - ID09
Not defined by HIV	Just because you have HIV, that still doesn’t define you on who you are. - ID14

A 16-year-old participant (ID12) explained that she had avoided thinking about disclosing to a future partner because of the heaviness of the unknown experience (Table 2). “I never imagined it because I never really want to imagine it. I know it’s going to happen. But I don’t want to think about it. I didn’t want to think about it before because it was just heavy”.

The anticipation that HIV self-disclosure can unpredictably result in negative consequences, including the termination of a relationship, motivates AHIV to avoid or delay initiating romantic relationships (Table 2). As ID12 went on to explain, “And it deters me in going in that direction. I know I want to get married one day, and I’m going to have to do that. But it’s mixed emotions on that”. Therefore, self-disclosure for HIV was envisioned by some to occur once a perceived threshold of trust and rapport was reached with their romantic partner, as described by a 22-year-old participant, ID06. “If I’ve known them for quite some time and they’re very understanding because a lot of people, their emotions can change like a split second depending on what you tell them or what happens”. Not only does self-disclosure require a threshold of trust to occur, but self-disclosure is perceived to substantively grow the trust between romantic partners, as described by ID16, “The trust between you and that person would sky-rocket” (Table 2).

Patient portal disclosure.

Using the portal to self-disclose HIV information was viewed as an opportunity to educate future romantic partners on HIV (Table 2).

So if I show someone my viral load like we were just talking about, if I explain to them what would happen if that number went upwards, past the boundary lines [...] Show them how the medication would work and whatnot. That would probably be a good thing. Because you’re literally educating them through visual learning.

When asked about concerns related to using their patient portal to self-disclose HIV information, ID09, who considered herself likely to use the portal to share viral load information, was concerned that more information than is desired to be shared may be viewed on a patient portal screen (Table 2). In addition to limiting the information that is shared, there are concerns about how information is shared. For example, ID12, who expressed that she would only allow a potential partner to look at her HIV information, was very uncomfortable with “sharing” via the electronic portability of HIV information (Table 2):

I wouldn’t use it for that purpose [...] I’m a very private person, even with my parents, when it comes to stuff like that. I’m like, yeah, you can take a look at it. I have no problem with it. But I don’t want it being shared.

In contrast, another participant felt comfortable with the idea of people being able to grant patient portal access to their romantic partners to make shared decisions about how to proceed with sexual behaviors upon viewing viral load information (Table 2).

If you want the other person to have access to your MyChart, I think MyChart should like be able to like – for the other person to be able to see when you’re detectable or not, and if they should or should not be romantic at this certain time.

What people should know about AHIV.

Multiple participants from the sexually naïve perspective expressed the pervasive presence of myths about HIV, including how it may be acquired. ID09 specifically mentioned an example of HIV spreading via kissing. There was also, as indicated by ID14, 13-years-old, a desire for people to know that they are not defined by their HIV: “Just because you have HIV, that still doesn’t define you on who you are” (Table 2).

The approach-oriented perspective

Definition.

The approach-oriented perspective represents participants who have the goal of self-disclosing their HIV status to romantic partners before initiating a sexual relationship. Unlike the sexually naïve perspective, these participants had lived experiences of self-disclosing HIV to their romantic partners. Approach-oriented participants were emerging adults who reported having been sexually active and self-disclosure experiences with HIV sero-concordant and sero-different romantic partners.

Disclosure perceptions and lived experiences.

Attitudes toward self-disclosure center on valuing transparency and treating others as they would want to be treated as a golden rule. Two participants described their value of self-disclosure as being informed by being at the receiving end of non-disclosure in their acquisition of HIV (Table 3). ID05, 25 years old, explained, “I usually tell everybody that I’m having sex with that I’m HIV positive for the sake of, I was not told when I was having sex with this person that I’m HIV positive”. Self-disclosure provides a prospective partner with the choice of how to proceed with a relationship. As ID11, 21 years old, puts it, “I do feel like people deserve a choice”. ID08’s (25 years old) personal experience with self-disclosure suggests that the results of self-disclosure events may be more favorable when prospective partners are educated about HIV (Table 3).

Table 3.

Perceptions about HIV self-disclosure from the disclosure approach-oriented perspective.

Disclosure Perceptions and Lived Experiences
Emergent Subthemes	Quotation
Initial step in forming new relationships	If I did get a new partner, that would be the first thing I would let him know. I will sit him down to let him know that I have this. - ID03
Fear of the unknown response	Well, with my child’s father, I had told him before we started talking. I think I was really, really scared because people don’t take things as lightly as you think they would. - ID02
Partners have a right to choose	They can have a choice in the matter of whether or not to - I don’t want to say deal with you, but yes, deal with you. [...] I do feel like people deserve a choice. - ID11
Golden rule	I usually tell everybody that I’m having sex with, that I’m HIV positive for the sake of, I was not told when I was having sex with this person that I’m HIV positive. - ID05
HIV-educated partners	It was fine because luckily, they were already educated on it. - ID08
Trust and rapport	Once I do gain trust [...] this is before sexual encounter [...] I do like to try to get to learn a person, their mentality, and how they respond to bad situations. - ID11
Fear of termination of relationship	I do have a fear that that partner don’t want to be with me if they do not have it. - ID10
Disclosure after sex	I have two experiences currently, and I’m still trying to find the best way to explain it to them. And the only reason why I didn’t tell them is because we were friends first, and I got a feeling if I tell them we [are] not going to be friends no more. - ID05
Patient Portal Disclosure
Emergent Subthemes	Quotation
Sharing progress	I can show you past tests that I was [detectable] and my viral load was very high and my T-cell was not good. I could show him a couple things for him to understand. - ID10
Educational resource/competing responsibilities	Interviewer: Do you find yourselves educating sex partners about viral load and how medications work to stop [transmission]? Respondent: Yes. And that’s why I also think that the portal is good because you’re not going to remember everything, you’re not going to have the exact answer [..] I’m 21, there’s so many more things that I have to think about than this one disease. - ID11
Receipt	That would be perfect! For them to be like [...] “Oh, I think you lying.” I got proof. I think that’s perfect. I got the proof right here. I don’t got to sugar coat it. I don’t got to lie to you. You can read it all for yourself. - ID05
	I could always just go on the portal, show them, have them see it for themselves. Like I said, it’s like a receipt. Everyone likes hard copy proof. Everything people do, they make sure [there is a] hard copy. - ID11
Demonstrating personal accountability	I would every time I get a checkup or something, I would just update, show my boyfriend. This is where I’m at, I’m healthy, I’m good. No worries, I’m staying on top of my meds, my viral load is good. Everything is good. - ID13
Restricting how information is shared	I wouldn’t send it to nobody’s phone [...] It can stay right here on my phone for your eyes and your eyes only [...] it doesn’t need to be passed around. - ID13
What People Should Know about AHIV
Emergent Subthemes	Quotation
Respect us as fellow humans	They need to know that we’re just like anybody else at the end of the day. They don’t have to like us. They don’t have to be friends with us. But at the end of the day, y’all got to respect us just as well as we respect y’all. - ID13
Educate themselves about U = U and HIV transmission	I guess what it means to be undetectable and how it can actually be transferred. Because there’s still so many people that think it can be transferred from touch or simple stuff like that. - ID08

Nevertheless, fear of an unknown response can make self-disclosure a challenging event. Approach-oriented participants must overcome barriers of anticipated stigma and a desire to avoid what may have been lived experiences of negative consequences resulting from HIV self-disclosure. ID10, 23 years old, described a negative past HIV disclosure experience to a partner who was also a co-worker (Table 3): “I told my partner that I used to date on a job, and the whole job knew that I had it, and they were making fun of me, and I just felt like that was wrong on all levels”. Such negative disclosure experiences can solidify fears related to secondary disclosure and the termination of relationships with sero-different partners. While some participants may view HIV self-disclosure as an initial step in determining where the relationship goes, others may focus on reaching a threshold of trust and rapport.

Three participants (ID05, ID10 and ID11) shared their experiences of sexual encounters that occurred before HIV self-disclosure (Table 3). Such events counter the goals for self-disclosure to occur before sex and are described with a measure of dissatisfaction. During one such post-sexual encounter with HIV self-disclosure (ID10), told her partner that she understood that it was substantial for her not to self-disclose before sex because it had happened to her. “I went through that because nobody didn’t tell me. That’s how I know it’s big not to tell that person” (Table 3).

Patient portal disclosure.

ID10 reported using the portal to show her partner that her HIV viral load was undetectable. “I was showing my viral load as far as the current viral load like it’s undetectable” (Table 3). The patient portal was also useful for sharing her progress from a high viral load to an undetectable load (Table 3). Her partner questioned whether he could acquire HIV with her undetectable viral load. While she took the opportunity to educate and assure him that he would not, during the interview she needed to be reassured that HIV would not be transmitted if her viral load was undetectable.

Another participant (ID11) expressed that at her age, “there are many more things that [she has] to think about than this one disease” (Table 3). Hence, the patient portal functions as an aid for providing information and details that she may not readily remember. Participants felt that patient portals beneficially served as a receipt or proof to validate the information shared with a romantic partner. Meanwhile, romantic partners may experience certain doubts about the veracity and accuracy of information shared without experiencing the added assurance provided by patient portals. In terms of how the information is shared, one participant (ID13) explained that she would not want to have the electronic health information portably shared but rather have her partner look at her phone: “I wouldn’t send it to nobody’s phone [...] It can stay right here on my phone for your eyes and your eyes only [...] it doesn’t need to be passed around”.

What people should know about AHIV.

Many participants felt it was important for people to understand that AHIV are just like anyone else and should be given the same respect that others expect to be provided. Another participant (ID08) felt that it is essential for people to know what it means for the HIV viral load to be undetectable, as well as how HIV is transmitted. ID08 considers the education of others about HIV as important in part “Because there’s still so many people that think it can be transferred from touch or simple stuff like that” (Table 3).

The disclosure-averse/disclosure-indifferent perspective

Definition.

The disclosure-averse or disclosure-indifferent perspective represents participants who currently support the practice of concealing their HIV from partners or are indifferent about the need to self-disclose to partners. Disclosure-averse and disclosure-indifferent participants were emerging adults who reported that they had been sexually active and had never self-disclosed their HIV status with any lifetime partners (Table 4).

Table 4.

Perceptions about HIV self-disclosure from the disclosure-averse/disclosure-indifferent perspective.

Disclosure Perceptions and Lived Experiences
Emergent Subthemes	Quotation
No self-disclosure experience	No. I’ve never shared. No. I’ve never disclosed. - ID07
Preventing chance for secondary disclosure	So just to have them come out, just have them know my business. And then it’s like, oh, we’re not together no more, and then you go tell my business. - ID01
Concealment of HIV	As far as my sexual partners I’m dating, I have a girlfriend, I wouldn’t tell her. Like these studies and stuff, I just tell her I’m doing a study but I wouldn’t say what it’s for. - ID04
Misleading partners	When it did come up, it was like, “Oh, some people have it” or “I wouldn’t want it.” - ID04
Disclosed other STI tests	But I got tested for gonorrhea, you know the oral things that you could get from oral, like herpes and stuff. I’ve shared those test results. - ID04
An undetectable viral load alleviates necessity to self-disclose	As long as I take my medication, I stay undetected, and I really don’t have to say nothing because I’m good. - ID01 But I don’t feel it’s something that you had to disclose right off the bat, especially if you are undetectable. Because if you’re undetectable, there’s no risk at all, truly. - ID07
Reserved for enduring partnerships	I feel sharing is if you and your partner have been together for a very long time and you all are comfortable and you have good relationship and trust with this person. - ID07
Patient Portal Disclosure
Emergent Subthemes	Quotation
Not willing	That’s a hard no, for right now. Right now, I really gotta make sure that I’m [sp]ending my life with that person. - ID01
Limit to disclosing other STIs, not HIV	"As far as HIV, I wouldn’t really disclose that.” - ID04 Show them a little something, not too much of my business, like you’re not knowing all my business. I’m good, I’m clear right here. - ID01
Portal offers assurance	I feel like if you have, say a sexual partner and you are sharing test results, I feel like if you could send that to somebody through MyChart, it would be more official so there is no question of where this came from, because it came through MyChart. - ID04
An impractical desire	I would love to. I would love to go ahead and share, be open and honest with my partner, and share certain different things with them. - ID07
What People Should Know About AHIV
Emergent Subthemes	Quotation
HIV can be perinatally acquired	I want them to know that just because they have it, that doesn’t make them dirty or whatever [...]A lot of people don’t know that you can be born with it, so some people would think that you’re just out here doing a lot of things with other people, and they would think that you’re dirty or whatever and having all these sexual exchanges with everybody else. - ID04
HIV is not a big deal	it’s really not a big deal, you can live a normal life as long as you take your medications, and you could be all right. - ID01

Disclosure perceptions and lived experiences.

Participants reported taking measures to conceal their HIV from partners and intentionally mislead their partners into believing that they were not living with HIV (Table 4). Having an undetectable viral load was also described as alleviating the responsibility of self-disclosure to partners because there is no risk of HIV transmission. As stated by ID01, 21-years-old, “As long as I take my medication, I stay undetected, and I really don’t have to say nothing because I’m good”. ID01 described her precautions against disclosure as preventing secondary disclosures that may occur if a relationship goes sour: “So just to have them come out, just have them know my business. And then it’s like, oh, we’re not together no more, and then you go tell my business”. From this perspective, participants may have engaged in disclosing test results for STIs. However, HIV self-disclosure is strictly reserved for long-enduring partnerships (Table 4).

Patient portal disclosure.

In discussing the idea of using a patient portal to share HIV information with partners, specifically sharing her undetectable viral load, ID01 made it clear that she would not be interested in practicing such self-disclosures, at least for now: “That’s a hard no, for right now. Right now, I really gotta make sure that I’m [sp]ending my life with that person” (Table 4). Similarly, ID07 expressed that he would love to be open and honest by sharing with his partner that he is living with HIV. However, right now, to him, self-disclosure is an impractical desire (Table 4).

What people should know about AHIV.

For participants from the disclosure-averse and indifferent perspective, people need to know that living with HIV is not a big deal and that people living with HIV can live a normal life as long as they take their medications. ID04, a 20-year-old and self-described lesbian with perinatally acquired HIV, expressed that there are assumptions that AHIV are dirty and acquired HIV from “having all these sexual exchanges with everybody else” and felt it is important that people are aware that HIV may be perinatally acquired (Table 4).

Discussion

Prior studies have demonstrated willingness among AHIV to share patient portal access with family members (Jackman et al., 2023; Nturibi et al., 2025). Our study addresses the gap in literature exploring in-depth perceptions among AHIV about using a patient portal to share HIV-related information with partners. Themes emerged from diverse perspectives, including young adults with and without prior sexual activity, AHIV involved in sero-concordant and sero-different partnerships, AHIV with perinatally and sexually acquired HIV, heterosexual and same-sex attracted AHIV, AHIV with and without prior self-disclosure experiences, and AHIV in support of and opposed to sharing HIV-related health information with partners using a patient portal. Decisions to adopt portal-based disclosures are likely to be informed by contextual factors, such as valuation beliefs about HIV self-disclosure, perceived relative advantages of using the portal, and partnership characteristics, including levels of trust and commitment. Approach-focused AHIV foresee opportunities with patient portals to validate viral load histories and address HIV stigma and myths through education. Key advantages are consistent with prior research on sharing STI test result information with sexual partners; specifically, perceived improvements to communication and assurance in the health information exchanged between partners (Jackman et al., 2023). Despite potential advantages, disclosure-averse AHIV who prioritize concealing their HIV from partners, may be less inclined to view the portal as a path for disclosing HIV-related information. We discuss the dynamics of AHIV perspectives, as they relate to leveraging the portal to disclose HIV-related information to partners.

Perceived advantages to using portals

Key themes on the advantages of using patient portals for disclosure centered on attitudes and beliefs that it: (a) provides validated health information that conveys the openness and transparency that is important for building trust in relationships; (b) has the potential to combat pervasive HIV myths by providing scientifically accurate information about HIV transmission and living with HIV and (c) creates opportunities to garner social support and allyship for HIV care management by engaging partners with tracking viral load histories and ARV adherence.

Information validation

During a stage of life filled with many challenges in navigating competing interests for time and attention, the portal is a practical aid for the AHIV to supply relevant healthcare details for sharing with partners that may not be readily recalled by memory. Self-reported information related to STI test histories are prone to inaccuracies (Dariotis et al., 2009). Having “receipts” to show for the information that is shared decreases the likelihood of inaccuracies and also demonstrates intentions for openness and honesty, rather than concealment. Bolstering truthfulness and transparency is important for approach-oriented AHIV to avoid breaking “the trust” with partners (Beichler et al., 2023).

For perinatally acquired HIV, stigma may be compounded by the perception that their HIV was acquired because of behavior or choice. As stated by Kang et al., “The innocence that society once ascribed to children with perinatally acquired HIV quickly morphed to speculative blame towards young adults living with [perinatal] HIV who were now perceived as culpable for their HIV infection” (Cohen, 2004; Kang et al., 2021). Including a clear indication to validate perinatal acquisition in the portal may be important to distinguish an identity from HIV acquired via sexual contact or injection drug use. These considerations present a challenge when considering how patient-facing HIV-related information is presented in the portal for disclosure.

Combating HIV myths

Emergent psychosocial barriers to HIV self-disclosure are consistent with the literature, including stigma, fear of rejection and fear of secondary disclosure appear to be constructs inextricably linked to disclosure (Clum et al., 2013; Hogwood et al., 2013; Leonard et al., 2010) The pervasion of myths and lack of education about HIV feeds into the stigma levied upon AHIV (Hogwood et al., 2013). Participants described frustrations with ideas that HIV can be transmitted via kissing, touching or other non-transmissible interactions; it is important to AHIV that people know these myths are not true. Leveraging portal services to self-disclose HIV-related information to partners may support the goals of the Ending the HIV Epidemic initiative by reducing stigmatizing beliefs held by people not living with HIV (Calabrese et al., 2024; Greenwood et al., 2022). Patient portals may incorporate sexual health modules that can serve as an educational tool for both AHIV and their sero-different partners (Jackman et al., 2020b). Modules integrated with portals may serve as reliable sources for conferring scientifically accurate information about HIV transmission modalities. Such digital health tools must focus on affirming AHIV and reducing the pervasive societal stigmas and misinformation against people living with HIV (Arayasirikul et al., 2020; Marent et al., 2018).

Garnering allyship

HIV self-disclosure can lead to feelings of relief, connectedness, and doing something good for the sake of others (Gillard & Roark, 2013). The informational resources in patient portals may be used to educate partners on HIV medications and how medication adherence relates to HIV viral load levels. This capacity as an educational tool may also serve as a mechanism for garnering social support from partners. Supportive couple relationships buffer against the harm of HIV stigma on HIV treatment adherence (Gutin et al., 2023). Using the portal to share information on HIV viral load and medications, beyond mere status disclosure, may help AHIV engage their partners as accountability partners and social support to track the progress of medication adherence and viral load over time. This support may positively impact ARV adherence outcomes in sero-different partnerships (Tan et al., 2018).

Perceived hesitations to using portals

Key themes related to the hesitation to use patient portals for disclosure centered on attitudes and desires to: (a) restrict the display of HIV-related content and modes of sharing HIV-related information with partners and (b) either temporarily or indefinitely conceal HIV status from a partner.

Restricting content and modes of information sharing

Similar to prior findings that strength and longevity of relationships is a common factor in HIV self-disclosure to partners (Roth et al., 2023). AHIV in long-term committed relationships may be comfortable with partners having electronic access to HIV-related information in their portal. On the other hand, perspectives were discussed on how HIV-related information in the patient portal may be shared with partners in a manner that limits opportunities for secondary electronic disclosures and disclosure of other health information not intended to be shared with partners. Some participants were more comfortable with only allowing a partner to physically view their HIV-related information without electronically sending it to a phone or another device. Further, if using the portal to share select HIV information, AHIV want to ensure that only the content they want to disclose is viewable on screen. For AHIV who are comfortable with self-disclosing STI information other than HIV using the portal, this may extend to ensuring that health records for HIV, STIs, and other sensitive information are not located within the same display screen.

Concealment of HIV

HIV self-disclosure is often delayed or avoided until a threshold of confidence is reached with a partner (Clum et al., 2013). Aspects that cultivate reaching the threshold include time, understanding, and growing closer, with the potential to grow longstanding committed partnership characteristics. AHIV, particularly those naïve to sex, may choose to delay dating or avoid sex as a strategy to avoid disclosure experiences (Fair & Albright, 2012). Among sexually active AHIV, reasons for concealing their HIV from partners vary and may overlap, including fear of negative reaction or stigma, fear of secondary disclosures, lack of readiness to tell and feeling a low degree of emotional closeness to partners (Gaskins et al., 2011; Roth et al., 2023). Even among approach-oriented AHIV, there may be experiences where sex occurs without HIV self-disclosure. However, as highlighted by the “Misleading partners” and “Limit to disclosing other STIs, not HIV” subthemes, disclosure-averse AHIV may be more inclined to take steps to infer to their partners that they are not living with HIV. Additionally, some AHIV may consider having an undetectable viral load to preempt responsibilities for HIV self-disclosure (Roth et al., 2023). This is particularly concerning because people living with HIV may incorrectly believe their viral load to be undetectable when it is not undetectable (Kalichman et al., 2021). Patient portals may provide minimal motivation or support to disclosure-averse individuals who consider the negative consequences of disclosure to outweigh its benefits, or who may be indifferent to a sense of duty to disclose. However, when perceived to enhance disclosure experiences, the use of patient portals may reduce events where sex occurs prior to disclosure among approach-oriented AHIV. Integrating HIV-focused modules into patient portals that address societal stigma and the psychosocial impacts of disclosure and emphasize the benefits of disclosure in the context of prophylaxis use may improve disclosure practices among disclosure-averse individuals.

Knowledge and self-efficacy for delivering U = U messages

Still, our findings are consistent with research demonstrating that HIV self-disclosure remains important for some people who are undetectable (Sauermilch et al., 2023). In fact, individuals who are virally suppressed may be more likely to self-disclose rather than conceal their HIV to partners (Shrestha et al., 2019). Participants believe that sharing an undetectable viral load using the portal would allay concerns partners may have about transmission by assuring them that the risk of HIV acquisition is inhibited when viral load is below threshold. However, some participants were not completely confident that an undetectable HIV viral load truly equaled that of HIV being untransmittable. Prior literature shows that understanding U = U has been associated with less frequently enacted HIV discrimination and lower personal endorsement of stigmatizing beliefs among individuals not living with HIV (Calabrese et al., 2024); thus underscoring the importance of the ability to confidently convey education and implications of an undetectable viral load on HIV transmission. Healthcare providers need to reaffirm U = U among AHIV and equip them with the knowledge, language and skills to confidently convey educational U = U messages to sero-different partners. There are great opportunities for patient portals to be reliable sources of U = U education for both AHIV and their partners.

Strengths and limitations

While this qualitative study is limited to a sample of 16 mostly female and Black/African-American AHIV at an urban hospital, diverse emergent perspectives helped identify salient behavioral attitudes and beliefs for future investigations. Nevertheless, in-depth perspectives on using a patient portal to self-disclose HIV-related information to partners remain underexplored among broader populations of AHIV and warrant further investigation. This study did not explore what AHIV have heard from their healthcare providers about using a patient portal to disclose HIV-related information with partners. Future studies should explore what guidance and messaging healthcare providers may offer AHIV to help optimize the healthy exchange of HIV-related information and delivery of HIV education between partners using the portal.

Conclusion

The capacity to provide education on antiretroviral therapy medications and viral load, viral load validation, and tracking HIV care over time makes the patient portal an attractive tool for AHIV to communicate information regarding living with HIV to partners. The availability of patient portals for sharing HIV-related health information with partners may not directly impact whether an individual is approach or avoidant, nor the timing of when AHIV choose to self-disclose; however, these research questions remain largely unexplored. Future interventions must understand where AHIV are on the spectrum of approaching and avoiding disclosure and further inculcate contextual factors that support practical and effective strategies for safely engaging in patient portal-facilitated disclosures.