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Abstract

Objective: Youth are at high risk for HIV, accounting for 19% of new diagnoses in the United States (US) in 2021. Highly effective HIV treatment is available in the form of antiretroviral therapy (ART), which enables individuals with HIV to achieve viral suppression. However, youth living with HIV (YLHIV) have poorer ART adherence and lower rates of viral suppression than adults. This study aimed to explore the perspectives of YLHIV and their HIV care providers on barriers and facilitators to ART adherence for YLHIV in the southern US. Methods: Semi-structured qualitative interviews were conducted with YLHIV (n = 16) and HIV care providers (n = 15) in South Carolina. A team-based rapid qualitative analysis approach was used to analyze data, extracting themes and quotes illustrating barriers to ART adherence on intrapersonal, interpersonal, community, and structural levels. Results: YLHIV reported forgetfulness, privacy concerns, and fears about HIV disclosure as reasons for ART nonadherence. Few utilized self-management strategies, though both YLHIV and providers reported that parental support improved adherence. Providers perceived that youth had high nonadherence because they experienced minimal HIV symptoms early in the course of HIV and because of developmental challenges. Additional provider-reported barriers included living in systemically marginalized communities and low health literacy. YLHIV and providers indicated an mHealth intervention could improve adherence and would likely be acceptable and feasible. Conclusions: YLHIV in the southern US face numerous challenges to ART adherence and may benefit from interventions that feature self-management support and consistent adherence strategies.

Implications for Impact Statement

Youth living with HIV (YLHIV) and their care providers in the United States South identified perceived barriers to adherence to antiretroviral therapy (ART) at interpersonal, intrapersonal, community, and systems/policy levels. Barriers to adherence included forgetfulness, concerns about HIV disclosure, lack of access to medication, and low health literacy. YLHIV and their care providers suggested that incorporating resources and social features into interventions may promote ART adherence and self-management for this population.

Keywords

HIV adolescents adherence self-management

Introduction

HIV remains a public health crisis, with over 1.1 million people living with HIV (PLHIV) in the United States (US) (Centers for Disease Control and Prevention [CDC], 2023a). Antiretroviral therapy (ART), when taken regularly, enables PLHIV to achieve viral suppression (i.e., undetectable viral load), preventing HIV disease progression and allowing PLHIV to live long, healthy lives (Jilek et al., 2012; Low et al., 2016). Advances in ART have, in effect, shifted HIV from an acute terminal illness to a chronic disease requiring long-term management. An adherence level of 80–90% to ART regimens is necessary to achieve viral suppression (Bezabhe et al., 2016; Byrd et al., 2019). Viral suppression is important not only for the individual’s health and well-being but also is an integral part of HIV prevention, as PLHIV with an undetectable viral load are unable to transmit HIV to a sexual partner (Rodger et al., 2019). However, poor HIV care outcomes prevail across the care continuum, including linkage to care, retention in care, and viral suppression (Kay et al., 2016). The Ending the HIV Epidemic (EHE) plan was established in 2019 with the goal of improving HIV care outcomes in the US and targets several key populations (Fauci et al., 2019). The US South is disproportionately burdened by the HIV epidemic, accounting for 52% of annual new HIV diagnoses despite its much lower share of the population (CDC, 2023a). For this reason, the EHE plan targets seven rural states that have a substantial burden of HIV cases (Fauci et al., 2019). South Carolina (SC) is one such state and is representative of the burden of cases faced by southern rural areas in HIV care. Care outcomes in SC are poor, with only 76% of PLHIV receiving care, 56% retained in care, and 67% virally suppressed (SC Department of Health and Environmental Control [SCDHEC], 2022).

The southern US presents a unique context in which PLHIV must navigate their healthcare and psychosocial needs. SC is part of the “Bible Belt,” a region in the US in which many residents identify as Christian, attend church more frequently, and possess conservative sociopolitical views (Hill et al., 2005). Systemic factors in the South, including transportation barriers, lack of access to healthcare providers, and limited sexual health education opportunities, present obstacles to scaling-up HIV prevention and may drive high rates of HIV transmission, especially in youth (Harrison, Paton, et al., 2022). Rural geographic disparities for proximity to healthcare are heightened in the South, particularly for PLHIV, whose travel time to HIV care is far greater than that for other specialized medical services (Kimmel et al., 2018; Miller & Vasan, 2021 ). Additionally, PLHIV and providers in the US South have reported experiencing high levels of HIV-related stigma in healthcare settings which negatively impacts care engagement (Crockett et al., 2022). PLHIV in the South experiencing stigma are more likely to demonstrate poor adherence and miss at least one medical appointment (Reif et al., 2019). The policies common in southern states, including lack of Medicaid expansion, criminalization of HIV, and laws against gender affirming care, create unique challenges for PLHIV to access care and further existing social inequities (Cann et al., 2019; Kaiser Family Foundation [KFF], 2024; Summers et al., 2021).

HIV disproportionately affects Black/African American and Hispanic/Latinx individuals, with much higher HIV prevalence rates than white populations (i.e., 7x and 3x higher, respectively) (CDC, 2024). These trends are exacerbated in the US South—in 2021, Black/African American individuals comprised 27% of SC residents but represented 65% of PLHIV in the state (SCDHEC, 2022). Community-level racialized inequities have contributed to these high rates of HIV over generations. High rates of poverty, crime, and abandoned buildings in neighborhoods contribute to high levels of HIV vulnerability for people of color (Brawner et al., 2022). People of color may experience medical mistrust because of historical events like the Tuskegee Syphilis Study, which can negatively impact care engagement and ART adherence (Dale et al., 2016).

Men who have sex with men (MSM) are another population unequally burdened with HIV, accounting for 60% of PLHIV (CDC, 2024). HIV care barriers for MSM exist at several levels—youth who identify as LGBTQ may lack health literacy to self-refer for HIV care or be unable to access care without insurance, which can out them to their families via charges (Mayer et al., 2021). The cultural landscape of the South may heighten the stigma that MSM experience, especially those living with HIV (Reif et al., 2018).

Youth aged 13–24 years are also a key population in the EHE plan (CDC, 2023a). In 2021, 19% of new HIV diagnoses in the US were among youth (CDC, 2023a). Notably, the number of Black/African American YLHIV continues to increase, with the majority of YLHIV identifying as MSM (CDC, 2024; SCDHEC, 2022). Youth living with HIV (YLHIV) have the worst rates of linkage to care, engagement in care, and viral suppression among all age groups in the US (CDC, 2023b). Efforts to improve the HIV care continuum in youth are crucially needed. While 79.6% of YLHIV received care in 2021, only 65.1% achieved viral suppression (CDC, 2023b). The low percentage of virally suppressed YLHIV is a barrier to achieving EHE goals (Fauci et al., 2019).

Consistent adherence to ART is necessary to reach viral suppression and experience corresponding positive health outcomes. Poor adherence, therefore, may explain these relatively worse outcomes for YLHIV. Youth face unique medication adherence barriers due to their developmental stage. Indeed, youth with a variety of chronic health conditions have worse adherence compared with adults (Kim et al., 2014). This developmental stage is marked by an increase in independence and a transition from caregiver-management to self-management of medical care. YLHIV may also face challenges in adherence related to their HIV status itself. The highly stigmatized nature of HIV can negatively impact adherence (Katz et al., 2013). For instance, youth who are anxious to conceal their HIV status may be hesitant to carry their medications with them, resulting in missed doses. YLHIV—particularly sexual and gender minority YLHIV—may lack access to a supportive network (e.g., caregivers and peers) to help with ART adherence (CDC, 2023a; Kelly et al., 2014). HIV also inequitably impacts those exposed to socioeconomic disadvantages, and poverty is associated with worse ART adherence (Menza et al., 2021). There is limited existing research on ART adherence barriers, and to our knowledge, there is no research on if these barriers are consistent for YLHIV in the southern US. This study sought to better understand ART adherence barriers and facilitators for YLHIV in the US South. Because adherence is a complex construct that involves both the patient and provider (Modi et al., 2012), this study explored both YLHIV and providers’ opinions on ART adherence and is the first do so in a rural southern state that is a target of the EHE initiative. Indeed, prior research has demonstrated providers may have a unique perspective from patients on barriers to HIV care, including ART adherence (Taylor et al., 2018).

Methods

Ethical Review

The University of South Carolina Institutional Review Board (IRB) approved the study procedures. Prior to participation, all participants provided informed consent. Because youth ages 16 and 17 years are legally able to consent for HIV testing and treatment in SC without parental permission, parental consent was not required for participation in the study for individuals aged 16 or 17 years. Participants were informed that participation in the study was voluntary and all identifying information would be kept confidential. Participants were also provided with the opportunity to decline to answer any question.

Study Design and Procedures

Two semi-structured qualitative interview guides were created to assess the perspectives of YLHIV and their HIV care providers, which included open-ended questions about their perspectives on ART adherence barriers and the feasibility of an mHealth intervention to promote adherence. This study used an inductive approach, aiming to ascertain youth participant and HIV provider perspectives on a priori specified domains.

A convenience sampling method was used. Youth and providers were recruited from a large immunology center, a pediatric immunology clinic, and local HIV-focused community-based organizations in SC that provide HIV treatment. Providers were recruited through email and word-of-mouth. YLHIV recruitment occurred at care appointments, and the majority of those approached (∼95%) participated. Reasons for declining to participate were not collected.

Sample

YLHIV were eligible for the study if they were (1) between the ages of 16 and 25 years, (2) living with HIV, (3) residing in SC, and (4) able to complete an interview in English. Participants included 16 YLHIV. Ages of youth participants ranged from 16 to 25 years, with an average of 19.81 (SD = 2.81). Most youth participants identified as male (94%) and Black or African American (81%). Half (50%) of the youth participants identified as gay and 25% identified as bisexual. This demographic profile is similar to the overall demographics of PLHIV in SC, where 73% of PLHIV are male and 65% are Black or African American (SCDHEC, 2022). Most (75%) of youth participants reported current school enrollment (i.e., high school or college). The average time since acquiring HIV for youth was 4.81 years (SD = 6.12). Two youth participants acquired HIV perinatally, with the remainder (n = 14) acquiring HIV behaviorally. All youth participants indicated they had a smartphone.

HIV care providers were eligible for the study if they (1) were ≥ 18 years of age and (2) provided physical or mental healthcare to YLHIV in SC. Fifteen HIV care providers participated, including infectious disease physicians, nurse practitioners, clinical pharmacists, and clinical psychology interns. Demographic data for HIV care providers were not collected.

Data Collection

Youth participant interviews occurred in-person at an HIV care provider’s office or via a secure web-based platform (i.e., for participants who preferred this due to COVID-19 risks). All provider interviews occurred virtually on a secure web-based platform. Study team members trained in research ethics and qualitative interviewing with vulnerable populations, including individuals living with HIV conducted the interviews. Interviewers included a professor of psychology (third author) and two psychology PhD students (second author, non-author research assistant). All interviewers were women. Interviewers had no pre-existing relationships with YLHIV and only disclosed information related to the project’s goals. Interviewers had pre-existing connections with some providers due to working in similar fields. However, participants were reminded that the interview was anonymous, and all interviews followed a structured format (see Supplemental Tables 1 and 2). Interviews lasted approximately 30–45 minutes. The sample size was evaluated as the study progressed to ensure data saturation, with interviews conducted until saturation occurred, as indicated through examination of post-interview field notes and discussion of key initial themes between interviewers. Interviews were audio-recorded, transcribed verbatim, de-identified, and cross-checked by the study team for accuracy. Participants were interviewed once and were not asked to verify transcripts. All participants were offered a $25 incentive for their time and effort.

Data Analysis

Interview data were analyzed with a team-based, rapid qualitative analysis with six team members (Hamilton 2013, 2020). This analysis method was selected due to the a priori specified research questions. Moreover, the overarching goal of this project was to develop an intervention to meet the care-related needs of YLHIV. The rapid analysis method enables a quick turn-around in understanding intervention needs. This is beneficial for areas with urgently needed interventions, such as the HIV epidemic. The approach has been validated as yielding consistent results with thematic analysis and is valuable in rapidly identifying themes (Gale et al., 2019; Taylor et al., 2018). The rapid analysis approach consists of the development of a summary template which includes key domains for questions asked in the interview and a matrix of participant responses for each domain (Hamilton, 2013, 2020; see Supplemental Table 3).

A lead coder familiar with interview content and qualitative data analysis created a summary template that splits questions from the interview guides into key domains. Team members trained in qualitative data analysis tested the summary template individually by extracting key themes while reading transcripts and reviewing audio recordings of the youth and provider interviews. Team members then met as a group to discuss and resolve minor discrepancies in use of the template. Study team members were assigned transcripts to analyze with rapid analysis, and they placed extracted data into the summary template. Data were analyzed in Microsoft Excel.

For the current study, all youth participant matrix responses from the domains “Perspectives on ART” and “Missed ART” were extracted. For the provider matrix, responses were pulled from the “Barriers to HIV Care” domain. The first author organized interview responses from the listed domains into themes and identified illustrative quotes. The collaborating authors cross-checked these themes. Participant-checking was not used due to limited interaction opportunities.

Results

Most (75%) youth participants reported occasionally missing prescribed doses of ART. Three of the 16 total youth participants reported never missing a dose. Only one youth reported frequently missing ART doses, recounting, “I miss a lot.” Perceived barriers and facilitators were organized using a social ecological model of health, based on Bronfenbrenner’s ecological systems theory (Bronfenbrenner, 1977; McLeroy et al., 1988). Barriers and facilitators to care were identified on intrapersonal, interpersonal, community, and public policy levels. Supplemental Table 4 displays themes and illustrative quotes from youth and providers.

Intrapersonal Factors

Both youth participants and providers recounted that ART serves as a daily reminder of the individual’s HIV status. The thought of taking a pill each day can be daunting, as one youth said, “it weighed on me so bad.” Additionally, youth participants reported feeling significant shame around their status. Likewise, providers reported that the daily need for ART can have negative psychological impacts, serving as a “traumatizing reminder” of the HIV diagnosis which impedes adherence. One youth described taking the medication every day as “a reminder of how I got it” and said taking ART felt like “self-punishment.”

Youth participants and providers reported that developmental aspects serve as a barrier to ART adherence. Providers reported that YLHIV, particularly adolescents, may feel invincible and less inclined to self-manage their HIV due to a lack of perceived threat of HIV disease progression. Additionally, participants reported that adolescence and young adulthood are periods when youth balance many responsibilities, including school, work, and a robust social life. As one provider reported, YLHIV “go from relationship to relationship, from jobs to jobs.” The busyness of this developmental period can lead to inconsistent daily schedules, which pose a barrier to ART adherence. One youth participant reported it was hard to establish a consistent ART schedule as he was “limping through the school year.” Some YLHIV choose to take their daily medications in the evening and may be more likely to forget if they are fatigued after class, work, or a social outing.

Finally, providers said that the lack of daily physical symptoms associated with youths’ HIV status may be a potential barrier to adherence. Providers expressed that YLHIV may not be adherent to ART since there are often few visible or somatic symptoms during early years of infection. One provider noted that if YLHIV do not feel sick, then they may not believe that adherence to ART is important or necessary for their health. Providers also remarked that if YLHIV miss a dose of ART, they are unlikely to notice any immediate physical changes, contributing to higher rates of nonadherence for this age group.

Interpersonal Factors

On an interpersonal level, informants responded that caregiver and peer relationships could serve as a major barrier to ART adherence. However, a lack of social support, especially from family, was reported to be a key barrier to adherence. Some youth participants reported backgrounds in families that are either Christian do not support their sexuality. Such environments can lead YLHIV to not disclose their HIV status, and this decision eliminates the possibility of caregivers providing medication reminders or other adherence strategies. Even when youth choose to disclose their status to family, this does not guarantee support. Providers shared that caregivers can model good adherence behaviors, but that YLHIV with family members who are non-adherent to their own medications often struggle to develop good ART adherence. Also, as YLHIV mature and develop a greater sense of independence, caregivers may not provide regular medication reminders, which can impact adherence.

Youth participants and providers were especially concerned about privacy and how being seen taking ART could inadvertently result in disclosure of their HIV status. For this reason, YLHIV may hide their medication, skip doses, or insist on taking it alone. Constraints on locations and settings where YLHIV feel comfortable taking ART present an additional barrier to adherence. One youth participant described leaving the dorm room to hide ART from a roommate, but this led to frequent missed dosages on weekends, when he would sleep in and “miss the time” to take the pills.

Community Factors

On a community level, participants identified stigma as prominent and a major barrier to adherence. YLHIV reported stigma associated with medication is not unique to HIV and exists for other physical and mental health conditions. Some youth participants reported the belief that individuals who take pills may be viewed through a lens of what they can and cannot do—which created hesitancy about their ART uptake and the ability to take it around others. One youth participant described the difficulty of balancing stigma-related concerns and health: “[you’re] trying to fit in and make it seem like there’s nothing wrong with you...and then also do what you gotta do to make sure you [are] still healthy.” Providers traced the origins of HIV-related stigma back to the 1980s and said its existing presence continues to threaten ART adherence. One provider noted that the “Southern conservative culture” heightens stigma and can make YLHIV feel they do not “have a good support network.” Providers, but not youth participants, also noted that historical injustices in medicine and research may contribute to mistrust in healthcare or providers, especially in the Black and African American community. As one provider noted, for adherence, “trust is so big.” The “ugly history” that providers referenced was described as increasing the skepticism of YLHIV towards medical care and serving as an adherence barrier.

Structural Factors

Social determinants of health (SDOH) (e.g., access to quality healthcare and education, social context, economic stability, neighborhood, and built environment characteristics) were identified as key factors that influence adherence for youth (CDC, 2022). While youth participants did not discuss social determinants of health, providers commonly cited lack of economic stability and housing as ART adherence barriers for YLHIV. Providers reported that many YLHIV have a low income and are unstably housed or unhoused. The perceived cost of ART may prevent YLHIV from seeking out HIV-related care if they believe a doctor is “going to try and force me to do this thing I can’t afford.” Furthermore, the providers emphasized that a lack of economic stability can impact access to transportation, and in turn, HIV care engagement. Providers described the overlap between poor HIV care engagement and nonadherence to ART. Providers also recognized that YLHIV facing financial stress or housing instability may be unable to prioritize ART adherence. As one provider said, “Sometimes if you don’t have somewhere to sleep, the last thing you’re thinking about is your medication.”

Health literacy, another SDOH, was also identified as a barrier to ART adherence. Some youth participants, especially those who acquired HIV perinatally, reported not understanding why they took their ART when they were younger. One youth participant noted that when he saw his viral load decreasing after starting ART, he finally was able to realize the importance of ART and become adherent. Providers focused on health literacy and YLHIV’s lack of knowledge about health care as a barrier to adherence. Providers reported that YLHIV may not understand how to acquire a prescription for ART, how to enroll in insurance, or the importance of taking ART daily.

Overall, youth participants and providers primarily generated examples of barriers to adherence, but youth participants also identified social support and health literacy as facilitators to ART adherence. The role of social support and/or health literacy as a facilitator depended on the individual. Many youth participants reported that having parents remind them to take ART daily was a helpful strategy, as one youth said, “I don’t remember, my mom remembers.” Providers echoed that caregivers are a useful resource for adherence. For health literacy, youth participants stated that understanding ART’s function increases their motivation to take the medication. As one youth participant said, after listening to the doctor explain the details about ART, “you’ll want to take your medicine.”

Discussion

YLHIV experience worse HIV-related outcomes than adults, including poorer ART adherence. The present study is an important step forward as it has sought YLHIV and providers’ perspectives on barriers and facilitators to ART adherence for YLHIV in the southern US. This study’s findings show the convergence of youth participant and provider perspectives and align with prior literature. The identified barriers and facilitators may inform the features and resources promoting ART adherence for future HIV-specific interventions in this population.

Both youth participants and providers identified ART adherence barriers at the intrapersonal and interpersonal levels. Youth participants reported tangible barriers in a developmentally appropriate manner. Providers supplemented these responses with some of the systemic-level factors and policies that fuel the barriers at these levels. This is consistent with Taylor et al. (2018), and providers’ emphasis on systemic barriers to adherence may be the result of their positions as healthcare providers for a diverse array of YLHIV.

At the intrapersonal level, inconsistency in routine, perceived invincibility, and lack of physical symptoms were identified as barriers to adherence for youth participants, which have been identified as obstacles to adherence for youth with other chronic health conditions (Hanghøj & Boisen, 2014). These barriers highlight the need for an intervention that offers customizable daily adherence reminders. Youth participants and providers also reported that taking ART daily can be a painful reminder about their HIV status. For some, the pill may represent a traumatic memory, but for others, it could be a symbol of shame fueled by the stigma in their communities. Mental health services and efforts to build coping skills could be beneficial for YLHIV. We echo recent calls for the integration of mental health services with HIV services (Remien et al., 2019).

Several youth participants identified reminders from caregivers as a facilitator to adherence. However, others described experiencing religious-based sexual identity stigma from parents. Thus, not all YLHIV can rely on caregivers for ART adherence support, and this may be especially true for LGBTQ YLHIV in the South. YLHIV are in the unique position in which they are transitioning to greater independence, and caregiver support could increase the likelihood of a successful shift to self-management (Lerch & Thrane, 2019). While HIV-related stigma exists nationwide, its extent in the South is distinctive (Reif et al., 2018, 2019). Youth participants and providers both noted fear of disclosure and stigma as key barriers to ART adherence. However, YLHIV who delay taking ART in social settings may miss doses (Robinson et al., 2023). Therefore, discreet reminders should be used in adherence-related interventions for YLHIV in the South.

Additionally, providers reported that medical mistrust stemming from historical racism, especially in the South, may indirectly negatively impact ART adherence. Black MSM disproportionately have poorer adherence compared with white MSM (Millett et al., 2012). Thus, efforts from the individual to the structural level are needed to address racism as a driver of existing inequities in the US HIV epidemic (Bowleg et al., 2022; Harrison et al., 2022). Providers also frequently reported living in systematically marginalized communities as adherence barriers for youth, which is unsurprising given that 83% of people living with HIV in the US have reported at least one social determinant indicator as a barrier to HIV care and adherence (Menza et al., 2021).

Many providers voiced concerns about YLHIV’s financial and housing statuses. This finding is unsurprising given the high poverty in the US South but highlights the need to provide low-cost, accessible interventions (Benson, 2023). While drug assistance programs are available to cover the cost of ART, low awareness and a lack of health literacy may be barriers to uptake. These findings highlight that adherence to ART is dependent on numerous systemic factors. Policy-level changes are needed to address these concerns. However, on an individual level, those aiming to support YLHIV in adherence should attend to the basic needs of YLHIV. Interventions for YLHIV that address adherence should also provide resources on SDOH such as finding stable housing and addressing food insecurity. Furthermore, findings suggest that including educational resources on ART access in an intervention may be useful given reports of low health literacy among youth. Both youth participants and providers identified few facilitators to adherence. Future qualitative research is needed to identify specific facilitators to ART adherence for YLHIV in the southern US so that these can be harnessed in interventions.

Youth participants reported frequent use of smartphone apps as a strategy to remember medications, indicating the potential benefits of using technology for adherence reminders (Mulawa et al., 2018; Whiteley et al., 2018). Youth participants reported being eager to connect and learn from one another yet also reported feeling generally isolated from other young people who were living with HIV. This is an important paradox, and future research is needed to explore ways to connect YLHIV to peer support. Smartphone apps or other digital platforms may be promising approaches, particularly in rural states such as South Carolina where there is a low density of youth living with HIV. Both youth participants and providers expressed that the development of a discreet HIV-focused app with medication reminders might improve ART adherence for youth. Furthermore, existing digital health interventions suggest that the maintenance of positive behaviors can extend beyond a few months, making an app a feasible method to promote behavior changes that generalize with time (Lau et al., 2020).

This study has several limitations. Because this study was focused on a particular geographic region, findings should not be generalized outside of the US South. Participants were also recruited via convenience sampling from immunology centers, so the voices of those that may face additional barriers, including lack of access to care, may be left out of the results. In addition, providers did not provide demographic characteristics, and their responses cannot be contextualized based on their identities or experiences beyond what was shared in interviews. Reasons for declining participation, for both providers and youth participants, were not recorded. In terms of measurement, objective data on youth adherence were not collected. Rather, youth participants self-reported various frequencies of missed ART dosage. Future studies may wish to collect objective measures of adherence when examining adherence experiences among YLHIV. Finally all members of the research team were HIV-negative at the time of data collection. This positionality can limit the research team’s conceptualization of the lived experiences of the YLHIV who participated, as well as the challenge of a strict adherence regimen to ART.

Nonetheless, the unique perspectives of youth participants and providers on ART adherence provide important clinical implications. Findings suggest that youth have a strong need for accurate information and consistent support for ART adherence (Huang et al., 2020). In the clinic setting, staff can educate YLHIV on the importance of ART adherence and role play scenarios that will prompt YLHIV to self-reflect and think broadly about anticipating and overcoming adherence barriers at systemic levels. The results from this study can also aid in selecting and developing adherence-related content for an mHealth intervention for YLHIV in SC and beyond. Some initial attempts to develop an app for YLHIV have been initiated, but more research is needed to understand what digital content can promote adherence and viral suppression for youth (Amico et al., 2022). Better understanding of existing barriers to ART adherence for YLHIV can also help identify ways to integrate the use of an mHealth intervention with other aspects of HIV care (e.g., medical and mental health care). Knowledge of facilitators can be equally important. Since youth participants identified social support and health literacy as ART adherence facilitators, features increasing connection and access to healthcare resources should be incorporated into an intervention.

Finally, findings have implications for care of youth with pediatric health conditions more broadly where adherence is needed for optimal outcomes. Many of the barriers identified in the present study, such as youths’ perceived invincibility, are not unique to HIV. Adherence-related apps have been developed for other pediatric populations (Badawy et al., 2017; Modi et al., 2016). Findings from this study can promote the mindful integration of checks for adherence barriers into these other app development processes.

Conclusion

YLHIV in the southern US face unique barriers that impact their ART adherence. Identified barriers to adherence range from individual to systemic factors rooted in social and cultural values. These findings highlight the need for novel interventions. The development of an intervention that provides YLHIV with adherence reminders, assists in coping with the stigma of HIV, and provides educational resources may offer support to help young people living with HIV in the southern US achieve and maintain viral suppression.

Supplemental Material

Supplemental Material - Perceived Adherence-Related Barriers for Youth Living With HIV in the Southern United States

Supplemental Material for Perceived Adherence-Related Barriers for Youth Living With HIV in the Southern United States by Katherine E. Weaver, Sarah J. Miller, and Sayward Harrison in Clinical Practice in Pediatric Psychology.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by a grant from the National Institute of Mental Health (K01MH118073). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

ORCID iD

Katherine E. Weaver

Supplemental Material

Supplemental material for this article is available online.

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