Positive Peers Mobile Application Reduces Stigma Perception Among Young People Living With HIV

Abstract

Background. The burden of HIV-related stigma is associated with disparities in linkage to HIV care and viral suppression. The Positive Peers smartphone application aims to provide young people living with HIV with a supportive virtual community to counteract perceived stigma and better manage their illness. Method. A mixed-methods study that included a prospective survey and in-depth interviewing was conducted with young adults living with HIV, aged 13 to 34 years (n = 128). As part of a larger study, participants used the Positive Peers mobile application and reported demographic data, perceived stigma, and other psychosocial variables at enrollment, 6 months, and 12 months (n = 128). Select participants (n = 15) described their experiences in audio-recorded qualitative interviews. Verbatim transcripts were analyzed for potential themes and patterns. Results. A longitudinal multivariate model was developed to assess changes in stigma over the study period, overall, and with respect to participant characteristics. Baseline and 6-month stigma scores were higher for White and Other ethnicity persons relative to Black participants. At the 12-month time point, no statistical differences in stigma scores based on ethnicity were apparent. Interviews revealed Positive Peers as a nondiscriminatory community that offered a sense of belonging that appeared to have a restorative effect on negative self-image. Conclusions. Positive Peers provides a protected virtual space where young people living with HIV can converge in the common desire to support similar others. Mobile health applications that offer peer interaction may provide a persistent sense of belonging that neutralizes internalized stigmas in addition to benefits derived from application activity.

Keywords

HIV/AIDS health disparities qualitative research health research LGBT minority health sexual health internet/electronic interventions technology

Background

It is well established that people of color experience significant chronic stressors, (i.e., racism poverty) that negatively affect a range of health outcomes (Clark et al., 1999; Williams et al., 2019). Similarly, structural disparities, including social, economic, and educational factors, contribute to an increased burden of HIV within young minority populations (Levy et al., 2014; R. L. Miller et al., 2018). Coping with stigma associated with chronic illness, racism, and homophobia, can present a significant challenge to young people living with HIV (YPLWH) who may lack resources needed to effectively engage in care and seek support.

Stigma is a well-documented structural barrier persistently associated with HIV (Baugher et al., 2017; Rice et al., 2017; Sweeney & Vanable, 2016). Stigmatization is a sociocognitive process based on (1) labeling human differences by others, (2) associating stereotypes with these labels, (3) categorizing and separating labeled others from larger society, and (4) debased status and discrimination among the stigmatized, leading to unequal social outcomes (Link & Phelan, 2001). Stigmatization results in systemic bias based on demographic or social status, including associating HIV infection with behaviors and stereotypes that can further marginalize YPLWH. Experienced stigma among people living with HIV is associated with disparities in HIV testing, access to health care, treatment adherence, and utilization of other resources conducive to health (Rueda et al., 2016). Stigmatization can change self-perception and inclusion within society, causing shame and social isolation (Cadwell, 1991).

Internalized HIV stigma is defined as endorsing negative feelings and beliefs associated with HIV and applying them to oneself (Earnshaw et al., 2013). Higher levels of internalized HIV stigma are common among those who are newly diagnosed, especially among those who perceived themselves as being less accepted after disclosing their positive status to others (Lee et al., 2002). Internalized stigma can result in decreased use of health enhancing and prosocial resources, such as support groups and other activities designed to provide social support and connection with other HIV positive individuals (Rice et al., 2018). However, social support is known to have a positive and robust association with mitigating structural barriers associated with stigma (Sayles et al., 2007). Accordingly, the convergence of internalized stigma and social isolation contribute to lower treatment adherence and vulnerability across the HIV care continuum (Jeffries et al., 2015; Rice et al., 2018).

The multiplicative effect of stigma among marginalized populations has been described as intersectionality (Richardson & Brown, 2016). HIV-related stigma intersectionality may be effectively addressed by interventions that improve both health outcomes and equity among young, Black, gay, and bisexual men (Bonett et al., 2020). Mobile health (Mhealth) interventions offer varied modalities for addressing perceptions of stigma and providing support. Virtual space populated by restricted populations affords participants opportunity to control their identity, limit visual cues, control the pace of interaction, or observe others’ disclosures. This may be particularly valuable to YPLWH in remote or less diverse population settings.

Support is a strong and meaningful antidote to experienced stigma (Fields et al., 2016; Turan et al., 2017). Mhealth interventions have the capacity for linking geographically dispersed people who share a common characteristic in a low personal risk setting. Positive Peers is a web-based, mobile application (app) that provides reliable HIV relevant information within a private, stigma-free, supportive community. Positive Peers offers multiple health management, information, and communication functions to a defined population of newly diagnosed or previously out of care youth and young (13–34 years) adults living with HIV. This investigation is intended to (1) explore stigma among Positive Peers users and (2) gain understanding of how they may think about stigma in relation to the app. This work is relevant for linking general mobile app research outcomes to HIV practice, as well as supporting policy advocacy for HIV stigma reduction.

Conceptual Framework

We approached this investigation from the perspectives of motivated social media use and social support. Motivated media information processing research suggests that exposure to personally relevant messages may prompt changes in beliefs, attitudes, or behaviors (Kimmerle et al., 2017; Park et al., 2009; So, 2012). Messaging that reflects salient personal characteristics garners attention and elaboration, and increases the odds of cognitive, attitudinal, or behavioral change. Positive Peers pairs relevant messaging with opportunities for social support via the virtual community. Social support is known to protect people from the effects of stressful events via coping, a cognitive appraisal process that allows perceivers to manage and transition negative thoughts (Cohen & Wills, 1985). Consistent with this proposition, online social support is most efficacious at fostering global perceptions of community, empowerment, and inclusion (Barak et al., 2008).

Method

Design

This study is a mixed–methods, convergent parallel design whereby both quantitative (i.e., prospective survey) and qualitative (i.e., in-depth participant interviews) strands of investigation occur simultaneously. Results from both data sets are used together to answer the study questions (Creswell & Clark, 2017).

This study was part of the Health Resources and Services Administration’s Special Projects of National Significance initiative to evaluate a spectrum of social media/Mhealth interventions across 10 demonstration sites in the United States (Medich et al., 2019). Positive Peers is a free mobile app developed in collaboration with in-care young adults living with HIV (Step et al., 2020). Following a series of focus groups with this HIV community, Positive Peers was rolled out in Fall 2016, in Cuyahoga County (Cleveland, Ohio) for pilot testing. The data presented here were collected over 18 months as part of that effort. Since the rollout, the app has been updated several times to be more reflective of user needs and preferences. The multifunctional app offers users gamified health management tools (e.g., medication and wellness trackers), SMS communication functions (i.e., forums and private chat), and over 250 HIV-relevant blogs and first-person narratives. The app is professionally designed according to brand standards and maintained by a local tech firm to ensure security, evaluation, and rapid updates. The app is complemented with a website (www.positivepeers.org) and daily dissemination of blog and other app news via various social media platforms (@PositivePeers4U). The Positive Peers app (PPA) is currently available to eligible participants throughout the United States via commercial app stores and the Positive Peers website.

Population

Data presented in this study were collected as part of the Positive Peers pilot study described above. Individuals were eligible to participate in the pilot if they were between the ages of 13 and 34 years; had a confirmed HIV infection; were receiving care at MetroHealth, the county hospital located in the inner city of Cleveland, Ohio; and had access to a smartphone and were either diagnosed within the past 12 months or not fully engaged in HIV care per the Health Resources and Services Administration definition (viral load > 200 copies/ml in past 24 months, did not have an office visit or labs drawn in each of the 6-month time periods during the past 24 months).

Recruitment

Recruitment to the parent study occurred via clinical referral and direct contact by the project administrator. Following informed consent, participants created an account and downloaded the PPA from the appropriate commercial app store (i.e., IOS or android). All study participants completed baseline, 6-month, 12-month, and 18-month surveys via audio computer-assisted self-interviewing (ACASI) that took place at the clinic site. ACASI technology allows respondents to listen to computer-generated survey questions and respond via a touchscreen or keypad. This method standardized the data collection process and accommodates low literacy and respondents with disabilities. ACASI is well suited to sensitive topics such as those related to sex or other risky behaviors (Population Council, 2020).

Measures

Stigma

HIV-related stigma was measured with a brief scale designed to maintain strong psychometric properties without being burdensome for youth living with HIV (Wright et al., 2007). The measure consists of 10 questions resulting in total scores ranging from 10 to 40. Stigma subscales, comprising either two or three questions, include (1) negative feelings toward HIV, (2) internalized stigma, (3) concerns about status disclosure, and (4) perceived public attitudes toward HIV. Due to the limited ranges of these subscales (i.e., 2–8 or 3–12), we chose to focus our quantitative assessments on the global stigma scale, which more closely exhibits characteristics consistent with typical assumptions (e.g., normality).

Demographic

We considered a number of participant characteristics for analysis, including age at enrollment, assigned sex at birth, ethnicity (Black/non-Hispanic, White/non-Hispanic, and other), where “other” is largely composed of Hispanics, born with HIV (yes, no), sexual orientation (heterosexual, homosexual; includes gay and bisexual), and prior incarceration (0 times, 1–2 times, 3+ times). Another measured characteristic reflected the participant’s eligibility status, which could be either new (<12 months) or out of care (>12 months). Out-of-care participants were not virally suppressed at baseline but were living with knowledge of their HIV status for at least a year. This variable was termed recency of diagnosis.

Study Strand 1: Quantitative Analysis

The purpose of this strand of the study is to observe self-reported perceived stigma across 18 months of Positive Peers enrollment. Linear models were developed to examine associations between select characteristics and overall stigma at baseline. Subsequently, a longitudinal multivariate model was developed to assess changes in stigma over the 12-month study period, overall and with respect to the characteristics studied. Intersectionality was assessed via statistical interaction. Specifically, interaction terms for each characteristic with time were included in models to test whether stigma trajectories differed across specific categories of characteristics. Unfortunately, joint effects of characteristics on stigma could not be assessed due to sample size constraints. For the study, all statistical tests were performed assuming a Type I error of 0.05 using the Statistical Software System (SAS) Version 9.4.

Quantitative Results

Participants

A total of 128 patients participated in the PPA study. At study enrollment (i.e., baseline), the average age for participants was 26.2 years (SD = 4.0). Roughly eight out of 10 participants’ assigned sex at birth was male, and more than two thirds identify as Black, non-Hispanic (Table 1). Just less than 10% were born with HIV, and one third had received their HIV diagnosis during the 12-month period prior to entering PPA. Additionally, three fourths of participants identify as gay or homosexual, and one half had been previously incarcerated at some time prior to entering the study. (Table 1).

Table 1

PPA Participant Characteristics and Baseline Stigma (N = 128)

Characteristic	Count	%	Stigma
Characteristic	Count	%	M	SD	p
Assigned sex at birth
Male	108	84.4	25.6	6.57	.6529
Female	20	15.6	26.3	6.89
Ethnicity
African American (non-Hispanic)	86	67.2	24.2	5.95	.0016
Caucasian (non-Hispanic)	20	15.6	28.5	7.25
Other^a	22	17.2	28.7	6.78
Born with HIV
No	116	90.6	25.8	6.84	.4303
Yes	12	9.4	24.3	3.28
Recency of HIV diagnosis
<12 months	42	32.8	25.0	6.99	.3807
≥12 months	86	67.2	26.1	6.40
Sexual orientation
Heterosexual	31	24.2	25.0	5.23	.5170
Homosexual	97	75.8	25.9	6.97
Prior incarceration
0 times	63	49.2	25.6	6.45	.5023
1–2 times	34	26.6	21.9	6.67
3+ times	31	24.2	26.8	6.86

Note. PPA = Positive Peers application.

Includes Hispanic ethnicity.

Perceived Stigma

Weak associations exist between baseline stigma and most participant characteristics, including sex at birth, born with HIV, recency of HIV diagnosis, sexual orientation, incarceration history, and age (r = −0.057). The exception being ethnicity, where average baseline stigma scores were lower for Blacks in comparison to others (p = .0016).

Assessing Stigma Over Time

Overall stigma scores declined throughout the overall PPA study period, averaging 25.7 at enrollment (N = 128), 24.1 at 6 months (N = 97), and 23.1 at 12 months (N = 78). Interaction effects between stigma scores over time and most of the structural and personal characteristics studied, however, were not shown to be statistically significant, suggesting that trajectories of overall stigma were no different across the various classes of these characteristics. This does not support the intersectionality perspective. An exceptional case, however, was the relationship between stigma among certain ethnic groups over time. These relationships are explained through a time by ethnicity interaction effect in these results.

No statistically significant differences in stigma exist based on age, assigned sex at birth, born with HIV, recency of HIV diagnosis, sexual orientation, or incarceration history (Table 2). However, statistically significant differences in stigma do exist based on ethnicity, varying by time point. Specifically, at baseline, stigma scores were significantly higher for Whites and Other ethnicity persons relative to Blacks by about 4 to 5 points (White: β = 4.385, p = .0056; Other: β = 4.848, p = .0012). At the 6-month time point scores were significantly higher only for Whites relative to Blacks reflecting a near 3-point differential (β = 2.89, p = .0360). Of note, at this time point, is a borderline significant difference in score between Other and Black ethnicity of 2.4 points. At the 12-month and final time point, no statistical differences in stigma scores were apparent based on ethnicity. Overall, no statistically significant differences in stigma scores were shown between White and Other ethnicity at any of the three time points.

Table 2

PPA Participant Characteristics and Stigma Modeled Over 12 Months

Characteristic	Estimate	95% CI	p
Age	−0.239	[−0.491, 0.013]	.0624
Assigned sex at birth
Male		Reference
Female	0.209	[−3.054, 3.472]	.8991
Ethnicity
Baseline
African American (non-Hispanic)		Reference
Caucasian (non-Hispanic)	4.385	[1.310, 7.459]	.0056
Other^a	4.848	[1.953, 7.743]	.0012
Month 6
African American (non-Hispanic)		Reference
Caucasian (non-Hispanic)	2.890	[0.192, 5.588]	.0360
Other^a	2.421	[−0.0111, 4.852]	.0510
Month 12
African American (non-Hispanic)		Reference
Caucasian (non-Hispanic)	1.396	[−2.346, 5.138]	.4616
Other^a	−0.007	[−3.129, 3.116]	.9967
Born with HIV
No		Reference
Yes	−2.220	[−6.001, 1.561]	.2473
Recency of HIV diagnosis
<12 months		Reference
≥12 months	1.718	[−0.331, 3.767]	.0995
Sexual orientation
Heterosexual		Reference
Homosexual	0.932	[−1.941, 3.806]	.5218
Prior incarceration
0 times		Reference
1–2 times	−0.455	[−2.655, 1.746]	.6832
3+ times	0.903	[−1.420, 3.227]	.4428

Note. PPA = Positive Peers application; CI = confidence interval.

Includes Hispanic ethnicity.

Study Strand 2: Qualitative Analysis

The aim of this study strand was to understand how Positive Peers users think about stigma in relation to their app use and the potential influence of the Positive Peers community. Depth interviews were used to gain a deeper understanding of how HIV-related and other social stigmas might be experienced by Positive Peers users. Depth interviews are so named because they reflect a more narrow focus than general open-ended questions (DiCicco-Bloom & Crabtree, 2006; W. L. Miller & Crabtree, 1999). Individual depth interviews are most appropriate to the identification of common experiences across a homogeneous population. Unlike more encompassing ethnographic approaches, depth interviews, through elicited narrative, seek to define common experiences more than nuanced context (W. L. Miller & Crabtree, 1999).

Recruitment

Project participants were eligible for a depth interview after 6 months of enrollment. All were informed of possible selection in the original consent. The main purpose of the interviews was to learn about how Positive Peers participants used the PPA. Of additional interest was learning more about how virtual community engagement may affect experienced stigma. A sample quota defined by frequency of app use (high or low), and demographic characteristics (sex, race/ethnicity) was used to select interviewees, who were invited to meet at the clinic site (Table 3). Participants were compensated for their time with a gift card.

Table 3

Interviewee Descriptive Characteristics (n = 15).

Characteristic	n (%) or M (SD)
Age	27.1 (2.3)
Sex at birth
Male	13 (86.7)
Female	2 (13.3)
Race
Black	11 (73.3)
Multiracial	3 (20.0)
White	1 (06.7)
Education
<High school	4 (26.7)
High school graduate only	3 (20.0)
Some college	8 (53.3)
Years living with HIV	4.9 (6.9)
Eligibility type
New (<12 months)	6 (40.0)
Out of care (>12 months)	9 (60.0)

Procedures

Interview questions included reasons for using the app, perceived benefits and limitations, and personal experiences of stigma. When ongoing analysis detected the potential presence of intersectional stigma, the interview guide was adjusted to inquire about those experiences. Interviews were conducted in a small, clinic discussion room at a large county hospital. The interviewer sat at a desk and interviewee in a standard waiting room chair. All interviews were audio-recorded with professional equipment. Recordings were transcribed and de-identified using WavePad audio-editing software 6.60 (NCH Software 6.60; https://www.nch.com.au/wavepad/index.html).

Fifteen interviews ranged in duration from 15:47 minutes to 46:10 minutes, averaging 33:00 minutes in length. NVIVO™ qualitative analysis software was used to manage the interview data and facilitate a qualitative analytic approach (W. L. Miller & Crabtree, 1999). First, attribute coding was conducted to link specific responses to interview questions. Next, in vivo coding proceeded as a means of identifying salient participant perspectives and language within those primary categories. Third, following discussion of our initial observations, a second cycle of focused coding allowed us to refine emerging stigma-related constructs and process.

Qualitative Results

Stigma Described

Generally, interviews revealed intense stigma experiences that were transformed through using the PPA. Prior to participation with PPA, users identified significant levels of internalized stigma. In some cases when participants recounted their HIV diagnosis, they described intensely negative internal thoughts about their identity. For instance,

Participant (P):

I just felt really low, like I just was scum of the Earth, type feeling.

Interviewer (I):

Scum of the Earth? Can you explain that more?

I just felt disgusting.

Why?

I think, because of my, uhm, my stigma and generalization of HIV before having it.

What did you think about it?

I thought it was kind of really gross. You know like, with my friends, we had this joke, like; it will never be me. I would never, oh God, I could never.

Another PPA user recalled bathing daily in bleach to cope with feeling dirty:

I don’t know what made me start doing it, but now when I take baths I pour like three caps of bleach in my water . . .

So, is there a reason you’re bleaching your water?

It makes me feel more clean. It makes me feel like I don’t have HIV. Honestly, that’s why I do it. When I do it, it makes me feel like I’m just the cleanest, nicest, freshest dude on Earth.

These comments reflect an intense form of personalized stigma that was sometimes difficult to bear:

I had this friend, she was a female. I told her my status. We got into an argument. She went on Facebook. She put my name [on Facebook] and she said, “that’s why [I’m] dying slowly.” . . . That’s where a lot of stigma comes at because people be scared that other people are going to put their business out there.

You know, at first I felt like everything was going to end. I felt like I couldn’t do anything . . . I didn’t eat nothing . . . I just wanted to give up on life and everything.

Life is over . . . I’m less than a person, dirty, damaged goods. My self-esteem just dropped at that point . . .

Intersectional Stigma

Some PPA users described stigma associated with aspects of identity other than HIV status:

What types of situations make you feel the most stigmatized?

Work, just being the only Black dude there. The role I have is quote, unquote so important, that if I drop the ball, they’re like oh this work isn’t for you, you don’t belong here. The White person next to me can do the exact same thing and they don’t say anything. But with me, they’re like oh, you don’t care about this, you’re just here for the check. In the Black community, it’s hard enough being Black, so you’ve got to deal with that. If you are in the Black community and gay, it’s harder. If you’re in the Black community, gay and have HIV. Three strikes, you’re out.

Others described stigmatization that existed within the LGBTQ (lesbian, gay, bisexual, transgender, and queer or questioning) community:

Straight females really believe that most transgenders are HIV-positive

A lot of misconceptions is that everyone who has HIV, they’re whores or sluts.

Who has these misconceptions?

The general gay community.

Another interviewee elaborated,

I’ve always felt like growing up, people just always had something to say about me . . . you feel like you’re part of a group, and you meet people that are going through the same thing that you go through. But, they all experience it differently. So they may react differently than how you react to it. So, I think that’s probably why I get a little nervous still, trying to like, connect with people that I know I have connections with . . . you have this wall that you put up because you’ve kind of been hurt so many times by others that you don’t know, or that you think you have a connection with and then something comes up and it kind of destroys that perception of who they were.

Similarly, a different user mentioned an age-related difference in HIV acceptance:

A lot of the older gays, they talk about HIV and the things that, you know, they’ve dealt with and a lot of them have it. The younger ones attack them for it.

He went on to explain:

I think there’s a big disconnect between generations, especially in the LGBT community with the younger generation and the old ones. The old ones had to fight more and pave the way for it and they had to establish a wonderful community network with each other and the younger people were just like, hey the world’s a better place and I don’t have to fight for anything because people accept me the way that I am, which is great. But there’s a disconnect, right?

Positive Peers as Safe Space

Though these interviewee comments evidenced a few intense stigma-related experiences, there was far more commentary describing the PPA as a safe and private community where one could be understood and valued. One user referred to a person living with HIV who does not use the PPA:

You’re not coping like I am, so you really don’t get it. These people [Positive Peers users] do, they get it. When I read their stories and I see their posts, it’s great, it’s something that keeps me going because I know I’m not dealing with this by myself.

Other PPA users described a mutual understanding and authentic connection that resulted from membership in a community exclusively for YPLWH:

I feel like we can be more open. We can talk because they already know. They’ve been there or experienced the same exact thing. For a person that’s just finally going through it, or for a person that’s over that, they can help that person. I don’t know, it’s just more open. They understand you more . . . There’s a sense of commonality, if that’s the word. People are alike, they understand each other and they’re willing to listen to each other.

I feel more comfortable because I feel there’s, like, an understanding. Like, people get it in Positive Peers and the general public doesn’t.

It helps, it helps because the other people that are on there are positive too, so they know how, you know, how things can get and it helps me.

Positive Peers is a community and that’s where we got that bond at. People that don’t go to support groups, that’s [Positive Peers] their support group. They go there to get support. They might not know what the person looks like or see the person’s face, but there’s a support still.

Transformation

This feeling of being understood in turn is transformative for some:

I feel like its maybe inspired me to be maybe a little bit more active in helping people deal with things.

Yeah, I think it made me feel a little bit more confident to know that I do have the capability of taking back control of my own health and being involved with something.

I want to learn more to help other people to move along in that way, if that makes sense. . . . other people who have it, who are still tripping out, people who have it and don’t know it, people who just got it and they’re freaking out, like, I want to be able to help them.

Discussion

Positive Peers users reported on surveys and in interviews that perceived stigma was reduced in meaningful ways over the course of their participation in the study. While it was surprising that the highest rates of stigma were reported by Whites, it is encouraging that all racial groups reported a decrease in stigma after 12 months of app use. Furthermore, frequent comments regarding the importance of belonging and being with people who “get me” are indicators of the meaningful impact of the PPA on users.

There are a few reasons why expected intersectional interactions between characteristics associated with chronic stress (i.e., race, sexual orientation) were not statistically supported. First, though Black men cope with chronic sources of stress daily, they may not perceive their health as a source of stress (Griffith et al., 2013). In the same way, Black men can identify common responses to stress (e.g., eating, spirituality) but do not always view those responses as needed coping mechanisms (Ellis et al., 2015). It may be that in the face of encompassing structural stressors such as racism and homophobia, HIV-related stigma is perceived as a manageable problem. Unlike race, HIV status is not a visible characteristic and known to others only through disclosure.

A second potential explanation for higher levels of perceived stigma among Whites is related to the idea of White fragility. DiAngelo (2011) coined this term to refer to the resilience lowering effect of living in racial comfort. As members of the racial majority, White people are insulated from race-based stress. Consequently, fragility (i.e., strong emotions, argumentation, avoidance) can be triggered by even small amounts of racial stress. White people are the minority group in the Positive Peers community. App messaging and imagery tend to reflect the concerns of Black, gay men, Black women, and Black transgender persons. It is possible that within the PPA environment, White users are out-group members and subsequently face an additional challenge addressing internalized stigma. In response we plan to investigate this question in future evaluation and consider the scope of portrayals we deliver in Positive Peers social media and in-app messaging.

Importantly, Positive Peers offers a virtual proximal space where similar others can offer support via shared experience. This proximal social space of Positive Peers may be more effective than the distal social space in the larger community. The aggregate perception of the proximal social group toward the shared environment is predictive of an individual’s well-being (Repetti, 1987). Though this thinking is more typically applied to work environments, the idea of a cohesive proximal group within a more heterogenous distal community matches user descriptions of the Positive Peers experience. Understanding the convergence of interpersonal and mediated environments is key to designing the next wave of interactive digital health tools (Kreps, 2017).

Conclusions

Though quantitative data showed significantly less perceived stigma among Black PPA users at baseline, 12 months later, differences between racial groups disappear. This outcome may be due to varied structural and personal barriers to well-being across demographic groups. Nevertheless, in the qualitative data, PPA users describe intense experiences of perceived stigma that lessen in the presence of similar others who offer an opportunity to learn and reframe internalized stigma. We see from these data that stigma is experienced by the individual but enacted at multiple levels of social life. Friends, family, workplace and school policies, and even health systems can reinforce perceptions of self-worth and separation. In fact, there is some evidence that perceived community stigma produces greater internalized stigma, which has been shown to influence depression and poor coping (Turan et al., 2017). Future work in this area should explore HIV-related stigma from an ecological perspective that analyzes messaging or practices rooted in multilevel social contexts.

Limitations

This aims of this study were not the primary aims of the overall Positive Peers project, so some measurement may not be the optimum choice for the current study question. For example, several measures, including the brief HIV stigma scale (Wright et al., 2007), were chosen for a large multisite study with many measured constructs across diverse intervention approaches. Other stigma measures may have offered greater construct validity within the current study context (Cronbach & Meehl, 1955; Whitely, 1983). Other limitations concern the nature of the study sample and ongoing app development. Participants volunteered from a local urban clinical population, several of whom had preexisting friendships prior to study participation. These preexisting relationships may have contributed unique biases to app interactivity or message characteristics. Moreover, the PPA was in nascent development at the time of data collection, and many bugs were addressed during the process. This instability might have influence study retention or heterogeneity. The design team has recently added several improvements intended to support usability and sustained engagement.

Implications for Practice and Research

Findings support the role of a novel mobile technology to enhance peer engagement and support among younger adults who are newly diagnosed or returning to HIV care.

The qualitative results in particular speak to the sense of inclusion and safety these protected communities provide. At this writing there has been a sudden and worldwide shift toward virtual approaches to patient care. This study offers a few guidelines for incorporating electronic spaces into chronic disease support. First, Positive Peers is limited to participants who share key health characteristics (i.e., age, HIV status). In this way disclosure concerns and generational differences are fairly neutralized. Second, interaction rules are disseminated at registration and monitored. Participants shared that Positive Peers is different than other virtual spaces because of its singleness of purpose. Third, the administrative voice in Positive Peers assumes the population’s vernacular and demonstrates understanding of what is important to them. The fact that administrative staff is in constant contact with the overall HIV youth population is a significant messaging resource.

Finally, study data confirm that intervention engagement is dependent on how app users perceive the app’s purpose and support its goals. This user group shares a common journey in recognizing their own internalized stigma. App messaging, functions, and peer support presented a path for loosening the grip of HIV-related stigma. In this way users provide a primary information resource to the app as a whole. This is consistent with work investigating the convergence of interpersonal and mediated communication in modern life (Walther, 2017). These approaches challenge our understanding of health promotion processes and outcomes. Future research should incorporate constructs that better capture the nonlinear nature and novel characteristics of online communication (Walther, 2017)

Health promotion and chronic disease support is rapidly changing to assume modalities that can address multiple disease-related issues, including information provision, medication adherence, gamified wellness practices, and provider connectivity. These multifaceted approaches inherently offer the ability to treat the patient as a whole person rather than as a medical record. It is particularly important to better understand and leverage the idea of community in electronic spaces. The field of health promotion would benefit from research focused on the relational dynamics of electronic support communities. For example, there is some evidence that the reduced social cues that characterize most digital spaces supports motivations to receive support, and enhances their impact (Rains et al., 2016).

Internalized stigma is a significant obstacle toward achieving undetectable HIV status for YPLWH. Acceptance into a knowing and supportive community may be a key resource for lessening internalized stigma, facilitating self-management, and supporting an undetectable viral load. These outcomes are key indicators of progress toward the current National HIV/AIDS strategy (The White House, 2019). Positive Peers offers a practical tool for addressing these needs in a key HIV disparity population.

Footnotes

Authors’ Note:

The authors are grateful to our reviewers for their inspiring and useful comments. This publication was made possible by award number H97HA28892 from the U. S. Department of Health and Human Services, Health Resources and Services Administration (HRSA), HIV/AIDS Bureau’s Special Projects of National Significance Program. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the government.

ORCID iD

Mary M. Step

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