A Qualitative Assessment of Retention in HIV Care among Adolescents and Young Adults (AYA) Living with HIV in New York City

Abstract

Retention in HIV care is a critical precursor to ending the epidemic yet remains suboptimal in the United States. Gaining an understanding of the challenges faced by adolescents and young adults (AYA) living with HIV is essential to improving retention in HIV care. This study explored the barriers and facilitators to retention in care among Black and Hispanic AYA living with HIV. Audio-recorded semi-structured interviews were conducted with 20 AYA living with HIV ages 16–29 years in New York City. Our methods entailed an inductive content analysis to explore key concepts, reconcile codes, and identify a theme, categories, and subcategories. Bronfenbrenner’s socioecological model evolved as an organizing framework around barriers and facilitators to retention in care at the individual, interpersonal, healthcare system, and structural level. Data analysis yielded one overarching theme—the influence of psychosocial factors on retention in HIV care. Psychological struggles, powerlessness, clinic-level characteristics, and socioeconomic struggles were barriers reported by participants. Self-responsibility, social support, patient-friendly healthcare services, and socioeconomic resources emerged as facilitators. Retention in HIV care among AYA living with HIV is a multifaceted and complex phenomenon that involves multiple systems. Strengthening patients, healthcare system, and community partnerships can help address some of the HIV-related health disparities.

Introduction

Ending the HIV epidemic (EHE) requires optimization of HIV-related health services, which include early diagnosis, prompt linkage to care, appropriate ART initiation and adherence, and retention in HIV care (Centers for Disease Control and Prevention [CDC], 2024a). The United States is far from achieving the “90-90-90” target due to considerable obstacles in retaining people living with HIV in continuous, effective care. Retention in HIV care involves maintaining regular engagement with HIV providers for routine medical visits over time (CDC, 2023). More specifically, retention in HIV care is commonly measured by visit constancy (optimal clinic attendance) and missed visits (non-adherence) (DHHS, 2023). Although progress has been made, people living with HIV are still poorly retained in HIV care (CDC, 2021). Successful retention in HIV care is a critical precursor to viral suppression.

Retention in HIV care varies by demographic characteristics (Anderson et al., 2020). Compared to non-Hispanic Whites, Blacks and Hispanics living with HIV are much less likely to be retained in HIV care and have lower rates of viral suppression (Anderson et al., 2020; Kahana et al., 2016; Sullivan et al., 2021; Zanoni & Mayer, 2014). Compared to older adults, adolescents and young adults (AYA) living with HIV face overlapping and distinct risks specific to biopsychosocial development and transition from pediatric to adult HIV care services (Enane et al., 2018) including struggling to establish autonomy, difficulty accepting HIV diagnosis, stigma and discrimination, homelessness, childcare responsibilities, poverty, unemployment, and limited access to healthcare (Davies et al., 2017; Kacanek et al., 2016; Vreeman et al., 2019; Zanoni & Mayer, 2014). These multifactorial risks are more common in young, Black and Hispanic HIV populations (Davies et al., 2017; Zanoni & Mayer, 2014).

In our primary exploratory research, we described the cohort of AYA living with HIV as emerging adults within a distinct developmental phase of growth who are exploring self-identity (Navarra et al., 2020). Understanding the challenges faced by AYA living with HIV is critical in helping these key populations achieve successful retention in HIV care, improve long-term health outcomes and decrease the risk of secondary HIV transmission.

Qualitative studies have explored barriers and facilitators to retention in care among Blacks and Hispanics adults living with HIV (McLean et al., 2017; Sangaramoorthy et al., 2021; Ward et al., 2021). Perceived barriers included concerns about privacy, HIV stigma, substance use, and transportation problems, while facilitators were positive relationships with providers and social support (McLean et al., 2017; Sangaramoorthy et al., 2021; Ward et al., 2021; Yehia et al., 2015). Missed clinic visits are an important metric to measuring retention in care. Findings from a retrospective study of AYA living with HIV in the Southern US (mean age=20.9 years) showed that older age and not being virally suppressed at the first visit during the study period were predictors of missed clinic visits (Hao et al., 2024). Despite extensive studies conducted on adults living with HIV, there is a paucity of research on the barriers and facilitators to retention in HIV care among Black and Hispanics AYA living with HIV (Enane et al., 2018; Fernandez et al., 2021; Lall et al., 2015). We therefore conducted this qualitative study to further understand the multilevel barriers and facilitators affecting retention in HIV care among Black and Hispanic AYA living with HIV in New York City.

Materials and methods

Study Design and Participants

This qualitative study is a descriptive content analysis (Hsieh & Shannon, 2005) of retention data collected from the exploratory sequential, mixed methods pilot study, Adherence Connection for Counseling, Education, and Support (ACCESS) (Navarra et al., 2020; Navarra et al., 2022). The aims of the primary qualitative analysis were to explore information, motivation, and behavioral skills (IMB; Fisher et al., 2006) and to understand the shared contextual factors around treatment adherence among a sample of 20 HIV-seropositive Black and Hispanic AYA living with HIV. The IMB model of ART adherence (Fisher et al., 2006) was used to develop the interview guide. Specific interview questions about retention in HIV care included topics on 1) adherence motivation (barriers and facilitators to clinic appointment adherence, and beliefs and feelings before and after a -clinic visit) and 2) adherence behavioral skills (frequency of clinic attendance).

The eligibility criteria were: (1) HIV-seropositive; (2) ages 16–29 years; (3) English speaking; (4) no neurocognitive deficits; (5) currently on prescribed ART; and (6) have a detectable HIV viral load of >200 copies/ml. Ethical approval was provided by NYU Langone Health and the Biomedical Research Alliance of New York (BRANY). All participants signed written informed consent. The primary data were collected through audio-recorded interviews with 20 AYA living with HIV recruited between December 2016 and January 2018. Interviews were transcribed verbatim, de-identified, and uploaded to ATLAS.ti version 8.0. The research design and data collection methods and results of the primary qualitative study have been previously published (Navarra et al., 2020).

Data Analysis

Transcripts were read, reviewed, and coded independently using Microsoft Excel^® by research team members including the study principal investigator (PI) and two of the co-authors (post-doctoral fellow; research assistant (RA) with a graduate degree in psychology). An inductive content analysis approach was utilized to code and analyze the data and identify barriers and facilitators to retention in care (Hsieh & Shannon, 2005; Thomas, 2006). Codes were then synthesized into categories and subcategories, with the emergence of one overarching theme. The post-doctoral fellow and RA met biweekly via Zoom^® videoconferencing to discuss the codes, categories, subcategories, and theme, providing the team with a platform to engage in reflexive discussion regarding prior assumptions and experiences that shaped our interpretation of the findings.

During the analytic process, the codes began to coalesce as barriers and facilitators influencing retention in HIV care. The categories and subcategories that emerged from the data aligned with Bronfenbrenner’s sociological model (SEM; Bronfenbrenner, 1979). Bronfenbrenner’s SEM (1979) are outlined in four levels—individual, interpersonal, healthcare system, and structural. Although the analysis was not initially organized through the lens of the SEM, the categories and subcategories were organized into the four SEM levels through the process of coding and inductive reasoning (see Figure 1).

Figure 1. Theme, categories, and subcategories of barriers and facilitators to AYA Living with HIV retention in HIV care.

Note. Individual, interpersonal, healthcare system and structural level barriers and facilitators are presented here in 8 categories (psychological struggles, powerlessness, clinic-level factors, socioeconomic struggles, self-responsibility, social support, patient-friendly healthcare services, socioeconomic resources) and 20 subcategories.

We performed numerous steps to ensure methodological rigor in the primary data collection (Navarra et al., 2020) and in this current analysis and interpretation of findings. Ongoing dialogue and discussions among members of the investigative team allowed for peer debriefing with comparison of viewpoints. We retained an audit trail to account for methodological decisions in support of dependability (Guba, 1981). The study PI (AMN) was transparent during peer debriefings and shared underlying assumptions to facilitate objectivity and confirmability (Guba, 1981). We provide demographic characteristics of the participants, details of the study findings, and authors’ interpretation of the results to enhance transferability (Guba, 1981).

Members of the study team reviewed, discussed, and resolved discrepancies until consensus was reached. To ensure the reliability of the final data analysis, a criterion of at least 80% inter-reliability agreement between the two co-authors was established (Krippendorff, 2018).

Results

Sample characteristics

Transcripts from 20 participants were represented in this analysis. Participants were predominantly male (55%), African American/Black (55%) or Hispanic/Latine (25%), heterosexual (80%) and perinatally infected (85%) youths (mean age of 24 years) from low-resourced communities. All participants were currently on a prescribed ART regimen and had a quantitative serum HIV RNA viral load (HIV viral load) >200 copies/mL.

Categories and subcategories

Data coding of the 20 transcripts yielded 119 codes, 8 categories, and 2-4 subcategories per category. An overarching theme—influence of psychosocial factors on retention in HIV care—was identified. We begin by defining the SEM levels identified within the specific barriers and facilitators. The categories and subcategories within each SEM level are delineated. Examples from the data analysis are presented in relation to the categories (illustrated quotes presented in Table 1).

Table 1.

Examples of barriers and facilitators to retention in HIV care among AYA living with HIV.

Socioecological Model Levels	Categories	Subcategories	Illustrative Quotes
Individual barriers	Psychological struggles	Avoiding reminders	“There were a couple times where I did miss visits, and my doctor would call me and say, ‘Hey, come in, you know, you missed your last visit.’ But it’s usually on my part that I miss the visits cause everything is scheduled, and they do make calls, and it’s up to me to pick up the calls and answer the voicemail messages.” (27-year-old, African American/Black/Hispanic male)
		Mental health	“A battle. It’s just um—how can I put it? Like I don’t wanna go to the constant reminder that I’m positive. And it’s a reminder of my mistake that I’ve done. That’s basically what the battle is. It’s like trying to blindside myself, saying that I’m fine, I’m good, but then once I get there, it’s back to reality.” (27-year-old, Hispanic/Latino male)
		Trauma-related phobias	“So, coming here and - and having an understanding that these people are gonna sit here and talk to me about the same thing that I don't want. You know, I don't want to hear that I need to take my medicine. I don't want to hear that I have this. I don't want you putting needles in my skin. You know what I'm saying? Like, it's just—the main part of it is just the reality of it.” (23-year old, Hispanic/Latino male)
		Substance use	“I stopped comin’ back. And then time went on, and then I started drinkin’. I had a major drinkin’ problem—and what he said to me was that he’s not gonna prescribe the medication because I have a real heavy drinkin’ problem. And nine times outta ten he would fear that I would forget to take it, and the medication would not work. So, time went on. I’m still drinkin’, still drinkin’, neglectin’ my health.” (27-year-old, African American/Black male)
Interpersonal barriers	Powerlessness	Lack of motivation	“Home. I just stay home, just taking care of my dogs and just watching TV, being lazy, and then I just forget about the appointments.” (27-year-old Hispanic/Latino male)
		Inconvenience of frequent visits	“So, like, I—that's when I had to [inaudible] really had, like, series of appointments maybe two years ago, but now it's like since I've been movin'—you know, I went to a—from a shelter, so half of the time I couldn't be able to do the appointments cuz I had to keep up with my [inaudible] and stuff, whatever. Then I got my old place, tryin' to get used to that, so—and then they said they didn't really need to see me then. So it wasn't like—we never had no every day—like, every four or five weeks you come in. We haven't that in a while, so it's, like—it's not what it used to be like before.” (24-year-old, African American/Black male)
		Conflict with the law	“I mean, for example, like, last time, it was just that circumstance with the po—with the-you know, the law enforcement that really stopped me from coming ‘cuz I was on my way here. Oh. I got arrested, and I was on my way here, but they tried to frame me or, you know, point fingers at me, winded up having a warrant when they pulled my name. So, they took me in. I was supposed—I was on my way out here, though. That’s why I really was mad.” (25-year-old, Hispanic/Latino male)
Healthcare System barriers	Clinic-level factors	Personal obligations	“Not really, but if I did, it's either [the doctor] had to cancel cuz he had was too booked or it was somethin' I had to do at school or, like, at work when I was workin'.” (22-year-old, African American/Black female)
			“Not—cuz I'm tryin' to do my career and get it started, so it's hard to find time, bein' in school, but I—I took a leave of absence now, so I could do whatever they want.” (25-year-old, African American/Black male)
		Difficulty accessing healthcare services	“To be honest, it would be actually the doctors if I'm tryin' to get in touch with them to make sure, ‘Do you really want me to come?’ Cuz I don't wanna come if they not here or they got busy.” (24-year-old, African American/Black male)
Structural barriers	Socioeconomic struggles	Finances	“That is - is a bigger, bigger problem because I had to find change in my house today to be able to come here, and that's - that's a problem. You know, if I can't afford to come here, then I'm not coming to my doctor's appointment, and I'm definitely not gonna use my last $2.75 or $3.00 to come to remind myself of something and then come here to have a bad day. Like, I'm definitely not gonna use my last $2.00 to have a bad day.” (23-year-old, Hispanic/Latino male)
		Transportation	“I take the train. Since I've been working and moved, it's different. [Interviewer: It's been a little harder to get here?] Mm-hm.” (22-year-old, African American/Black female)
		Housing instability	“And then it was making appointments would be hard because, you know, again, certain situations, for example, like moving around and losing sh—uh, I was living in the shelter, so losing shelter rooms, and then caseworker—dealin’ with caseworkers and all that. So, it just got a headache after a while, and I just spiraled outta control.” (25-year-old, Hispanic/Latino male)
Individual facilitators	Self-responsibility	Willpower	“Um, to see how I'm doing with my viral loads and my—what is it? My CD, the count. I don't [remember what it’s called]—So that's why I make sure I come to my every medical appointment that I have.” (25-year-old, Hispanic female)
		Self-care	“Uh, I guess sometimes I get sick and tired of sick and tired. So…of doin’ the same thing over and over again. It’s like now I don’t know what-what it was or somethin’ to say, you know, you have to get your life together.” (27-year-old, African American/Black male)
		Reminder methods	“Cuz I put the, um—whatever date it is set, I put it in my smartphone. And, usually, I'm very good with dates. Like, my—my brain is like a calendar, so it's really no problem.” (22-year-old, African American/Black female)
Interpersonal facilitators	Social support	Family and friends	“When, um, [the doctor] calls me and my mom makes sure or- or reminds me like the day before.” (21-year-old, African American/Black male)
		Peer groups	“I come here basically every week cuz of girls’ group.” (22-year-old, African American/Black female)
		Health care providers	“I don’t mind comin’ into the clinic here at all. Like, I always get nothin’ but love when I come here, so I don’t mind. It’s just kinda far, and, up here, it’s kinda deep. [Laughs]” (24-year-old, African American/Black female)
Healthcare System facilitators	Patient-friendly healthcare services	Appointment reminders	“Um, I do get—I get reminder—phone calls, like—Okay. - um, like, it will call me the day before, or if it's, like, on the weekend, if - if I have an appointment on Monday, it'll call on Friday to let me know there's an appointment on Monday. Remember. Yeah.” (27-year-old, Hispanic male)
		Supportive healthcare experience	“Um, I feel like when it comes down to my health and my doctors and my—my care providers, they actually—stay on top of me. They actually make sure—they call me. They’ll—they’ll send the van if I can’t make it. They’re—they’re very persistent about me taking my medication, more so than me, you know?” (27-year-old, African American/Black/Hispanic male)
			“For me, like, the voice mail or, like—yeah, the voice mail, the answering machine, like, telling me, like, that I have an appointment coming up. And it won't say for what it is. Like, it'll just say you have a—you have an appointment at—and it'll say, like, the location. But it wouldn't say, like, for whatever reason. Like, it would just say the location and the time, day and time.” (27-year-old, Hispanic male)
Structural facilitators	Socioeconomic resources	Finances	“My girlfriend gave me some money to get on the train.” (23-year-old African American/Black male)
		Transportation	“Of - of course, to know that, um—even - even not just getting—coming here and being able to receive transportation. Having an understanding of knowing that you can come here.” (23-year-old, African American/Black female)

Barriers to retention in HIV care

Individual level

Individual level barriers refer to personal characteristics, perceptions, behaviors, thoughts, and emotions that have prevented participants from keeping their appointments. Within this level, the category of psychological struggles emerged.

Psychological struggles.

Participants described psychological struggles as ongoing dysfunctional patterns of thoughts, emotions and mental illnesses that impact living with HIV. As shown in Figure 1, these psychological struggles were described as (1) avoiding reminders of HIV, (2) mental health, (3) trauma-related phobias, and (4) substance use.

Participants discussed depression due to their HIV status, negative self-appraisals, and guilt about mode of HIV transmission. Almost half of the participants described appointment fatigue as a barrier to appointment adherence because medical appointments reminded them of their HIV status which often led to emotional exhaustion and aggravated feelings of disempowerment. Some participants described limiting or avoiding thinking about their HIV status except for when taking their ART medications to avoid feeling depressed. For example, a 22yo African American/Black male described how the trauma of witnessing his mother’s death led to missing his medical appointments and the development of a needle phobia. This participant reported that he is always under the influence of a substance, which affects social interactions and results in poor choices. The experience of psychological suffering as a young person living with HIV may lead to a feeling of loss of control over their lives.

Interpersonal level

Interpersonal level barriers refer to factors that affect participants’ relationships with their health care providers. Powerlessness emerged as a primary category.

Powerlessness.

Powerlessness refers to the perception of an ongoing sense of lack of control over HIV illness, and the inability to alter HIV-related outcomes. Participants described various aspects of powerlessness including: (1) lack of motivation, (2) inconvenience of frequent clinic visits, and (3) conflict with the law.

Many participants expressed feeling powerless over living with HIV, a chronic illness requiring lifelong treatment. This feeling of powerlessness further resulted in a lack of motivation to maintain subsequent appointments. A 27yo African American/Black male described weekly injections given at the clinic as burdensome. He did not understand what the injections were for or why it was important to receive this treatment. The inconvenience of frequent clinic visits for these injections ultimately led to poor retention in HIV care. Another 25yo Hispanic male reported having conflict with the law. This participant described an account of their commute to the clinic being intercepted by law enforcement and wrongful arrest due to mistaken identity. These aspects of powerlessness kept participants from keeping appointments.

Healthcare system level

At the healthcare system level, there are specific factors related to the clinic. Clinic-level factors that affected retention in HIV care include: (1) personal obligations and (2) difficulty accessing healthcare services.

Clinic-level factors.

Clinic-level factors are the clinic-based characteristics that negatively affected the ability to keep scheduled healthcare appointments. Some participants described the preparation, long commute, and frequency of clinic appointments as cumbersome, while others missed their scheduled appointments due to personal obligations (e.g., time constraints, job interview, school). These experiences highlight how different individual and clinic-based obstacles influenced clinic attendance, missed visits, and retention in HIV care in the study sample.

Structural level

Among system-based factors described within the community was the structural level barrier of socioeconomic struggles. Socioeconomic struggles include: (1) finances, (2) transportation, and (3) housing instability.

Socioeconomic struggles.

Socioeconomic struggles refer to gaps in access to economic and social resources, and social positioning of an individual, in relation to others. Participants stated that inadequate income to afford transportation to the clinic often led to missed visits. Other factors such as housing instability prevented participants from keeping scheduled appointments. Participants described being unstably housed including moving frequently and seeking temporary accommodations with friends and shelters. These socioeconomic struggles were frequently described by participants as barriers to retention in HIV care.

Facilitators to retention in HIV care

Individual level

At the individual level are personal factors that exerted the greatest influence and support to retention in HIV care. Most participants reported self-responsibility as a motivator to keep their appointments. Participants discussed self-responsibility as (1) willpower, (2) self-care, and (3) reminder methods.

Self-responsibility.

Self-responsibility refers to a participant’s orientation and decision towards taking responsibility for their health, and as a sense of autonomy for HIV treatments. This was expressed as strong feelings of control over their own body and wanting to know how well they are doing with their HIV viral load and CD4+ T-lymphocyte counts. Gaining control of their health was described in relation to the experiences of feeling sick, receiving unfavorable HIV lab results, and not wanting to disappoint members of their support system. Participants also implemented their own strategies such as self-reminder cards, calendars, and/or alarms to help themselves keep clinic appointments. Furthermore, participants reported taking advantage of walk-in clinic hours and/or easy appointment scheduling. These positive cognitive processes of self-responsibility fostered retention in HIV care.

Interpersonal level

At the interpersonal level, relationships and support from others facilitates retention in HIV care. Participants described receiving social support from (1) family and friends, (2) peer groups, and (3) health care providers.

Social support.

Social support is the assistance or comfort the participants receive from others to help them cope with stressors. Participants reported receiving emotional and logistical support from family, friends, peer group, and health care providers. Fear of family members becoming indignant about their missed appointment was a motivator for appointment adherence among participants. A 22yo African American/Black female mentioned the peer support group at the clinic was her motivation to keep frequent clinic appointments. Many participants reported that having a strong bond with their health care provider has increased their confidence in the provider’s advice and recommendations. Other participants expressed trust in their health care providers and clinic staff in relation to keeping their HIV information confidential; this mutual trust facilitated a continued engagement in care. These varied sources of social support received by participants may help reduce HIV-related stressors and support AYA living with HIV’s continued utilization of healthcare services.

Healthcare system level

Healthcare system level facilitators such as patient-friendly healthcare services were frequently mentioned as a motivator to keeping appointments. Patient-friendly healthcare services consist of: (1) appointment reminders and (2) supportive healthcare experience.

Patient-friendly healthcare services.

Satisfaction with healthcare services and assistance facilitate adherence to care. Many participants reported receiving a phone call reminder for an upcoming appointment yet confidentiality of their health information was maintained. Moreover, positive provider-patient relationships played a key role in engaging in care. Participants explained that their providers’ and clinic staff’s compassionate care helped them adhere to appointments and share their health experiences.

Structural level

At the structural level are system-based factors that promote retention in HIV care. Socioeconomic resources were a category that emerged with two core subcategories: (1) finances and (2) transportation.

Socioeconomic resources.

Socioeconomic resources refer to the access to economic and social resources, and social positioning of an individual, in relation to others. For example, financial income stability is a mediator between affording public transportation and keeping medical appointments. Many participants described having financial income as a facilitator to purchase public transportation fare for travel to clinic appointments. Transportation assistance provided by the clinics (i.e., MetroCard) also helped improve access to the healthcare system.

Discussion

Findings from this qualitative study expand our understanding of barriers and facilitators to retention in HIV care among Black and Hispanic AYA living with HIV living in New York City. Participants’ self-report of psychosocial factors (psychological struggles, self-responsibility, powerlessness, social support, clinic-level characteristics, patient-friendly healthcare services, and socioeconomic factors) influencing their decisions to engage in HIV care were consistent with previous research regarding the influence of individual, interpersonal, healthcare system, and structural level factors on retention in HIV care (Enane et al., 2018; Hendricks et al., 2021; Levison et al., 2017; Sayegh et al., 2020; Williams et al., 2011; Yehia et al., 2015).

Many participants reported depression, trauma, and substance use as psychological struggles that negatively impacted appointment adherence, and expressed feeling helpless and dependent in terms of the need for lifelong medication; these findings are similar to existing evidence regarding the experience of negative affect and its influence (e.g., powerlessness) on retention in HIV care (Hendricks et al., 2021; Levison et al., 2017). The reported patterns, and effects of psychological struggles highlight the importance of screening for depression and other mental health issues. Of note, the experiences of participants described in this qualitative analysis are consistent with current trends and high rates of depression (CDC, 2024b) and substance use disorders. Consequently, AYA living with HIV may specifically benefit from psychoeducational interventions promoting autonomy, responsibility, and participation in decision making, or from interventions that include direct mental health counseling and support and substance use education, and or treatment. Such strategies may allow participants to reframe feelings of powerlessness into self-responsibility, a key facilitator noted by our participants. Self-responsibility for one's health has been shown to foster and support engagement in HIV care (Ritchwood et al., 2020; Wessinger et al., 2017). Some participants described gaining control of their health (willpower) by using their own reminder strategies to ensure appointment adherence. These patterns of thoughts and behaviors also suggest the potential for cognitive behavioral interventions to decrease negative cognitions and ruminations which contribute to the maintenance and depressive symptomatology (Arnold et al., 2023).

Social support is vital to retention in HIV care (Beima-Solfie et al., 2020; Dawson et al., 2016; Lam et al., 2016). None of our participants indicated any barriers with social support at the interpersonal level. Most participants reported having a positive and supportive relationship with their family, friends, HIV peer group, providers and clinic staff. This positive relationship creates a sense of trust, allowing patients to adopt medication and clinical adherence behaviors (Beima-Solfie et al., 2020; Dawson et al., 2016; Lam et al., 2016). By having a support system at home and in the community, participants were supported to improve their retention to HIV care.

The influence of clinic-level characteristics at the healthcare system level was an underlying barrier to retention in HIV care. Personal obligations, difficulty accessing healthcare services, and the tendency to avoid reminders were challenges faced by our participants. These challenges were exacerbated by frequent clinic visits and long wait times to see the provider; as explored in multiple studies (Hendricks et al., 2021; Sayegh et al., 2020; Yehia et al., 2015). Nonetheless, some participants in this study described walk-in hours and flexible clinic hours, along with appointment reminders as being important factors to appointment adherence and retention in HIV care. Consistent with other published evidence, appointment reminders, positive relationships with providers, and transportation assistance were facilitators to retention in HIV care (Levison et al., 2017; Williams et al., 2011; Yehia et al., 2015). Additionally, resources to support AYA living with HIV via telehealth are crucial to breaking down access barriers, resulting in expanded coverage and increased service use.

Structural barriers are known limitations for retention in HIV care and not surprisingly described by participants in our study. In our study, socioeconomic factors such as finances and transportation were described as both a structural barrier and facilitator. Our study findings extend current research (Hendricks et al., 2021; Sprague et al., 2014; Yehia et al., 2015) by describing how the socio-structural context influences retention in HIV care. Evidence from a recent systematic review highlights the potential for economic interventions to improve HIV outcomes for youth who are not virologically suppressed or with gaps in medical, both cohorts being the focus of this qualitative study (Bosma et al., 2024). Although studies included in this review were primarily conducted in non-US settings, the recommendations by Bosma and colleagues to explore and implement interventions targeting socioeconomic barriers to HIV care are relevant for at risk-young people in the US with gaps in care and or not virologically suppressed). Therefore, the development and implementation of multilevel interventions targeting key social determinants of health is essential to supporting retention in care among AYA living with HIV.

Strengths and Limitations

The findings of our study provide critical insight into psychosocial factors that influence retention in HIV care. The identified barriers and facilitators were limited to the perspectives of AYA living with HIV in NYC. Understanding barriers and facilitators to retention in HIV care from health care providers’ perspective can provide solutions to address some of the challenges faced by AYA living with HIV (CDC, 2023; Ward et al., 2021). Furthermore, the interviews were conducted pre-COVID-19; access to HIV care has since expanded to telehealth services. However, telehealth services should be used cautiously as there are reports of difficulty accessing technology due to lack of a video-enabled device, poor internet connectivity, and low levels of technology literacy (Baim-Lance et al., 2022). Despite these limitations, the complex and dynamic relationship between psychosocial factors at different SEM levels support the need for an integrated, multi-level approach involving healthcare systems and community networks to address some of the inequities and social determinants of health influencing retention in care among AYA living with HIV (Fortenberry et al., 2017).

Conclusion

In summary, these findings offer insights and elucidate the barriers and facilitators to retention in HIV care among AYA living with HIV at different SEM levels. Previous reports have highlighted the small number of studies conducted specifically with AYA, despite being potentially the most vulnerable age group in need of effective support and adherence interventions (Mulawa et al., 2023; UNICEF, 2023). There is a critical need to develop and implement effective interventions designed in response to the many multilevel complexities of engaging and retaining AYA living with HIV in HIV care and services. Progress towards EHE by 2030 is dependent upon a shared and robust research agenda representative from community, clinical, academic and policy stakeholders. Moreover, the development and implementation of effective approaches aligned with EHE benchmarks requires recognition of the impact contextual and social determinants have on HIV health outcomes such as retention in care among AYA living with HIV.