Reaching and Re-Engaging People Living with HIV Who Are Out of Care: A Mixed-Methods Exploration of Patient Preferences for Strategies to Enhance Clinic Communication and Outreach

Abstract

Half of all people living with HIV (PLWH) in the United States are not retained in HIV medical care. The utility of appointment reminders and clinic-based retention support services is often limited by the inability to contact PLWH who are out of care (PLWH-OOC) due to disconnected phone lines, full voice mails, and housing instability. Between June 2019 and May 2021, as part of a larger mixed-methods study in Metro Atlanta, Georgia, we conducted surveys with 50 PLWH-OOC and interviews with 13 PLWH holding a variety of clinic stakeholder roles (patients, Community Advisory Board members, and peer navigators) to explore preferences for clinic communication and peer outreach and factors impacting uptake. Although phone calls, text messages, and calling secondary contacts were most preferred, the spread of preferences was wide. Surveys and interviews highlighted the high acceptance of peer outreach visits, with trust, support, and privacy being key factors driving the uptake. Findings underscore the need for clinics to offer a suite of communication and outreach strategies and assess patient preferences for traditional and nontraditional outreach models to more effectively reach, re-engage, and ultimately retain PLWH-OOC.

Introduction

Of the nearly 1.2 million people living with HIV (PLWH) in the United States, only 50% are retained in HIV care, and 57% of those retained in care achieve virologic suppression.¹ Missed HIV care visits are a predictor of HIV disease progression and all-cause mortality rate.^2–6 Further, 69% of all new HIV infections in the United States are transmitted by PLWH who are out of care (PLWH-OOC), representing a major driver of the US HIV epidemic.⁷ Conversely, retention in HIV care fosters viral suppression by enabling access to antiretroviral therapy and support services addressing housing, insurance, food insecurity, transportation, and mental health.^8,9

Over the past decades, several evidence-based, in-clinic interventions to encourage retention in care have emerged such as case management, colocation of medical care and support services, and peer navigation programs.^10,11 However, for PLWH-OOC to access these retention services, they must be aware of their availability and have the knowledge and means to navigate them. Ryan White-funded HIV clinics (RWCs) often have retention coordinators to provide outreach and reminder calls of upcoming appointments and service availability to PLWH-OOC.^12,13 Unfortunately, these efforts may be ineffective when patient phone lines are out of service,¹⁴ voice mails are full, or patients choose not to answer unrecognized phone numbers.

At the RWC that served as the primary site for this study, for example, 20% (48/236) of PLWH-OOC called were noted to have a nonfunctional phone number and/or voice mail. Thus, it is critical to identify more effective clinic communication and outreach practices tailored to PLWH-OOC to enable relinkage and retention in care.

Little is known about the preferences of PLWH-OOC with respect to clinic communication for appointment reminders (i.e., phone calls, text messages, mailings, social media, home visits). Their preferences and needs may differ from PLWH who are in care (PLWH-IC) for several reasons; for example, PLWH-OOC are more likely to experience housing insecurity¹⁴ and be of a lower socioeconomic status,¹⁵ and thus, they may be less likely to have consistent access to a working phone number and/or data plan.¹⁴ Collectively, PLWH-OOC are also more likely to report experiencing HIV-related stigma,¹⁶ lower social support,¹⁰ and greater intimate partner violence;¹⁷ thus, they may be more cautious of receiving HIV care-related communication that could reveal their HIV status to others.

We hypothesize that PLWH-OOC may be more likely to prefer communication and outreach strategies that do not rely on stable housing, finances, or access to technology, and minimize stigma and risk of disclosure of their HIV status. In addition, due to challenges posed by transportation barriers,¹⁶ health system complexity,^16,18 and medical mistrust,^19,20 PLWH-OOC may prefer clinic reminders be tied to community-based peer visits.

This exploratory study aims to examine the preferences of PLWH-OOC regarding clinic appointment reminders and peer outreach strategies, as first steps in effectively reaching and re-engaging PLWH-OOC in care. We additionally explore factors that may impact the uptake of peer outreach services from the perspective of PLWH who hold a variety of stakeholder roles in the clinic [i.e., patients, Community Advisory Board (CAB) members, peer navigators]. This knowledge is necessary for informing clinic communication and outreach protocols, which can enable re-engagement in HIV care and access to critical clinic retention services.

Methods

Overview

This mixed-methods analysis is nested within a larger study, conducted from June 2019 to May 2021, that aimed to explore perceived barriers and facilitators influencing the implementation of a mobile HIV clinic to re-engage PLWH-OOC in Metro Atlanta.^21,22 The present analysis includes 50 surveys with PLWH-OOC and 13 in-depth interviews with patients (n = 5; PLWH-OOC and PLWH-IC), peer navigators (n = 2), and CAB members (n = 6). To inform enhanced outreach to PLWH-OOC, this substudy explores communication and peer navigation preferences of PLWH-OOC, as well as the perspectives of other PLWH who embody a variety of stakeholder roles in the clinic about the barriers and facilitators that may impact the uptake of peer outreach services.

While PLWH-OOC were the focus population of the study, we included PLWH-IC, CAB members, and clinic-employed peer navigators, recognizing that they also may have previously cycled through challenging care engagement periods and could reflect on communication and outreach strategies that were most effective during those times. Further, peer navigators and CAB members could offer unique implementation perspectives, as they brought an understanding of clinic values and practices and have interfaced with a variety of patients through their roles with the clinic.

Ethics statement

This research was approved by the Institutional Review Board of Emory University (IRB00109937) and the Grady Health System Research Oversight Committee. Informed consent was obtained from each participant before participation.

Study population and setting

The study was conducted at an RWC that serves more than 2100 PLWH in Metro Atlanta and affiliated hospital systems. To be eligible, all participants needed to be 18 years of age or older and fluent in English. PLWH-OOC were defined as individuals with a diagnosis of HIV who had not received HIV care in the past 6 months and whose last HIV viral load was greater than 200 copies/mL. PLWH-OOC were recruited for survey participation by convenience sampling through the clinic's “retention list” of patients who were OOC and identification by inpatient HIV care providers and social workers. For the in-depth interviews, patients (defined as PLWH-OOC and PLWH-IC), peer navigators, and CAB members were recruited to participate through purposive clinic-based sampling. Recruitment efforts included emails, phone calls, presentations at clinic and CAB meetings, and snowball sampling.

Data collection

Surveys were administered to participants by trained study staff through Alchemer (SurveyGizmo) in hospital or clinic rooms. The 59-question survey assessed participant demographics, preferences for appointment-related communication and peer outreach, and other questions of relevance to care engagement. Questions designed to examine patients' communication preferences included, “Of the list I will read you, please tell me which are the best three methods for us to reach patients who have fallen out of HIV care to remind them about their appointment and to see if we can help them reach their HIV care visit?” Participants were encouraged to choose three preferred forms of communication/outreach; however, they were given the option to select fewer if they did not find three methods acceptable.

Patients were also asked, “How okay would you be with a peer navigator (someone who works in the clinic and knows you well) visiting your home or a place you hang out to remind you about your HIV care visit and help you come back into HIV care?” Open-ended questions followed probing the reasons for their responses. Survey participants were compensated $25 for their time.

In-depth interviews were conducted by trained study staff and took place in private clinic rooms, at a convenient private location such as a public library or the participant's workplace, or through Zoom videoconferencing. Interviews were conducted using a semistructured interview guide that was specific to the participant's role. Patients were asked questions such as “Describe how you would you feel if we reached out to you to remind you of your appointment to help you get back in care” and “If we couldn't reach you by phone, how would you feel about a peer navigator (someone from our clinic who knows you well) visiting your home or a place you hang out to remind you of your appointment and help you come back into HIV care?” CAB members were asked, “In what ways can we engage or encourage patients who have fallen out of care to get back into care?”

Peer navigators were asked, “Do you have ideas on new methods to re-engage and retain out-of-care patients?” In addition, CAB members and peer navigators were asked to select which among a list of novel community-based models (inclusive of community-based peer navigation services) they thought would be most effective in linking PLWH-OOC back to care. Participants who identified peer navigation/outreach were further probed on barriers and facilitators to its implementation. All interviews were audio-recorded. In-depth interview participants were compensated $50 for their time.

Data analysis

Survey data were exported from Alchemer into SAS statistical software for analysis (SAS Institute, Cary, NC, USA). Closed-ended responses were analyzed descriptively. Frequencies were calculated across strata of demographic and personal characteristics for each communication/outreach method and level of acceptance of peer navigation visits. Responses to open-ended questions were categorized by research staff.

In-depth interviews were transcribed and deidentified before analysis. Deductive codes were developed before data collection, and additional inductive codes specific to communication and outreach strategies were derived from review of the interview transcripts. Each transcript was coded and reviewed by two study team members using MAXQDA Plus 20.0.4 to achieve consistency and consensus in the qualitative data analysis (VERBI Software, 2019). When discrepancies existed between the two assigned coders, the transcript text and codes in question were discussed among the full research team until consensus was achieved.

Results

Participant characteristics

Of the 50 survey participants, 76% (38/50) identified as cisgender men, 86% (43/50) as Black, 10% (5/50) as Hispanic/Latino, and 56% (28/50) as sexual minorities. The mean age of participants was 45.5 years [standard deviation (SD) = 12.6]. On average, participants had been living with HIV for 15.8 years (SD = 10.9). Most participants were unemployed (80%, 40/50) and reported an annual household income of less than $10,000 (64%, 32/50).

Participants paid for their HIV care in a variety of ways, most commonly Medicaid (34%, 17/50) and the Ryan White Program and/or AIDS Drug Assistance Program (34%, 17/50). One-third (34%, 17/50) of participants were unhoused or unstably housed at the time the survey was conducted, and on average had spent eight nights (SD = 27.5) in shelters and 38 nights (SD = 69.5) on the streets in the past 6 months. Fourteen percent (7/50) reported past-year incarceration. Two-thirds (66%, 33/50) reported they had access to a smartphone, tablet, or computer (Table 1).

Table 1.

Demographic Characteristics of Survey Participants, People Living with HIV Who Were Out-of-Care (N = 50)

Age, mean (SD)	45.5 (12.6)
Sex assigned at birth, n (%)
Male	41 (82)
Female	9 (18)
Gender identity, n (%)
Cisgender woman	8 (16)
Cisgender man	38 (76)
Transgender woman	2 (4)
Gender fluid/gender diverse	2 (4)
Ethnicity, n (%)
Hispanic/Latino	5 (10)
Race, n (%)
Black/African American	43 (86)
White	2 (4)
Asian/Pacific Islander	1 (2)
Other	3 (6)
Prefer not to answer	1 (2)
Sexual orientation, n (%)
Heterosexual/straight	22 (44)
Gay/lesbian/homosexual/same gender loving	20 (40)
Bisexual	6 (12)
Prefer to self-describe	2 (4)
Highest level of education completed, n (%)
Less than high school	15 (30)
High school diploma/GED	16 (32)
Education beyond high school	19 (38)
Annual household income, n (%)
<$10,000	32 (64)
$10,000–19,999	13 (26)
>$20,000	0 (0)
Prefer not to answer	5 (10)
Employment status, n (%)
Employed, full-time	5 (10)
Employed, part-time	5 (10)
Unemployed	40 (80)
Payment method for HIV care, n (%)
Medicare	7 (14)
Medicaid	17 (34)
Private insurance	7 (14)
Ryan White Program/AIDS Drug Assistance Program	17 (34)
Other	5 (10)
None	3 (6)
Incarcerated in the last year, n (%)	7 (14)
Access to smartphone, tablet, or computer, n (%)	33 (66)
Housing status, n (%)
Homeless or unstably housed at time of survey	17 (34)
Nights spent in shelter in past 6 months, mean (SD)	8 (27.5)
Nights spent on street (unsheltered) in past 6 months, mean (SD)	38 (69.5)
Years living with HIV diagnosis, mean (SD)	15.8 (10.9)

SD, standard deviation.

The qualitative in-depth interview participants included 13 PLWH (5 patients, 6 CAB members, and 2 peer navigators). To protect the identities of these participants, no additional demographic information was collected.

Communication preferences about upcoming appointments among PLWH-OOC

Table 2 depicts the three highest preferences among survey participants (PLWH-OOC) for receiving communication about upcoming appointments. More than half (58%, 29/50) preferred phone calls, 54% (27/50) preferred text messages, and 50% (25/50) preferred a call to a secondary contact listed on their medical record such as a friend or family member. Less popular options included a peer navigator visiting them where they live (26%, 13/50), receipt of a mailed letter (26%, 13/50), social media messaging (20%, 10/50), messaging through a mobile app (12%, 6/50), and a peer navigator visiting them somewhere they “hang out” (8%, 4/50). Participants who selected the option of having a peer navigator visit where they hang out cited convenience stores, neighborhood of residence, and areas where people experiencing homelessness sleep as preferred venues. A range of ideas regarding the best forms of appointment reminders were expressed by interview participants as well:

Table 2.

Distribution of Top Three Communication/Outreach Method Preferences of People Living with HIV Who Are Out of Care (PLWH-OOC) by Personal and Demographic Characteristics

	No. of participants	n (%) of participants who selected model as one of three most preferred
		Phone calls	Text messages	Calling secondary contact	Visit where you live	Mailed letter	Social media message	Message through an app	Visit where you hang out
Full sample	50	29 (58)	27 (54)	35 (50)	13 (26)	13 (26)	10 (20)	6 (12)	4 (8)
Age
18–34 Years old	11	4 (36.4)	4 (36.4)	7 (63.6)	6 (54.5)	2 (18.2)	4 (36.4)	1 (9.1)	0
35–44 Years old	10	6 (60.0)	4 (40.0)	5 (50.0)	3 (30.0)	4 (40.0)	3 (30.0)	1 (10.0)	0
45–54 Years old	15	11 (73.3)	11 (73.3)	6 (40.0)	4 (26.7)	4 (26.7)	2 (13.3)	2 (13.3)	1 (6.7)
>55 Years old	14	8 (57.1)	8 (57.1)	7 (50.0)	0	3 (21.4)	1 (7.1)	2 (14.3)	3 (21.4)
Race
Black/African American	43	26 (60.5)	23 (53.5)	22 (51.2)	10 (23.3)	11 (25.6)	7 (16.3)	6 (14.0)	4 (9.3)
Other	7	3 (42.9)	4 (57.1)	3 (42.9)	3 (42.9)	2 (28.6)	3 (42.9)	0	0
Gender
Cisgender woman	8	6 (75)	3 (37.5)	5 (62.5)	2 (25)	4 (50)	2 (25)	0	0
Cisgender man	38	21 (55.3)	22 (57.9)	17 (44.7)	10 (26.3)	7 (18.4)	6 (15.8)	6 (15.8)	4 (10.5)
Transgender or gender fluid/gender nonconforming	4	2 (50)	2 (50)	3 (75)	1 (25)	2 (50)	2 (50)	0	0
Access to smartphone, tablet, or computer
Yes	33	19 (57.6)	18 (54.5)	16 (48.5)	10 (30.3)	8 (24.2)	8 (24.2)	4 (12.1)	1 (3.0)
No	17	10 (58.8)	9 (52.9)	9 (52.9)	3 (17.6)	5 (29.4)	2 (11.8)	2 (11.8)	3 (17.6)
Unstably housed
Yes	17	10 (58.8)	9 (52.9)	10 (58.8)	3 (17.6)	6 (25.3)	2 (11.8)	1 (5.9)	2 (11.8)
No	32	18 (56.3)	17 (53.1)	15 (46.9)	10 (31.3)	7 (21.9)	8 (25.0)	5 (15.6)	2 (6.3)
Incarceration in past year
Yes	7	4 (57.1)	4 (57.1)	3 (42.9)	0	3 (42.9)	1 (14.3)	0	1 (14.3)
No	43	25 (58.1)	23 (53.5)	22 (51.2)	13 (30.2)	10 (23.3)	9 (20.9)	6 (14.0)	3 (7.0)
Length of time living with HIV
5 Years or less	9	6 (66.7)	6 (66.7)	3 (33.3)	2 (22.2)	2 (22.2)	1 (11.1)	1 (11.1)	1 (11.1)
More than 5 years	41	23 (56.1)	21 (51.2)	22 (53.7)	11 (26.8)	11 (26.8)	9 (22.0)	5 (12.2)	3 (7.3)

Participants were encouraged to choose their three most preferred communication/outreach models, however, some participants elected to only choose one or two if they would not utilize the other models.

Bolded, italicized cells represent the most preferred method among a group.

I would really be all for it via mail or social media, like [direct messages] and stuff like that. It's hard for people to stay with their phones connected nowadays, especially with non-technology people that don't know how to function with a cell phone very well.—PLWH-OOC

I'm more likely to answer a text than I am to answer the phone.—PLWH-IC

More or less over the phone or computer, stuff like that, I'll be comfortable; but the younger me, back then…I would trip out when I see a confidential letter in the mail and be like, what the hell is this? I don't even want to open it up.—PLWH-OOC

Acceptability of peer navigation as a communication/outreach strategy

Peer navigation, although less preferred than traditional means of communication, was overall viewed positively among PLWH-OOC. Sixty percent (60%, 30/50) of survey participants said they would be comfortable “to a great extent” with a peer navigator visiting their home or a place they frequent to help them re-engage in HIV care and provide appointment reminders, 20% (10/50) expressed being somewhat comfortable, and 20% (10/50) very little to no comfort (Table 3).

Table 3.

Acceptance of Peer Home and Community Visits to Provide Appointment Reminders and Navigation Among People Living with HIV Who Are Out of Care (PLWH-OOC) by Personal and Demographic Characteristics (N = 50)

	No. of participants	n (%) of participants
		To a great extent	Somewhat	Very little or not at all
Full sample	50	30 (60)	10 (20)	10 (20)
Age
18–34 Years old	11	7 (63.6)	1 (9.1)	3 (27.3)
35–44 Years old	10	5 (50)	4 (40)	1 (10)
45–54 Years old	15	9 (60)	3 (20)	3 (20)
>55 Years old	14	9 (64.3)	2 (14.3)	3 (21.4)
Race
Black/African American	43	26 (60.47)	9 (20.9)	8 (18.6)
Other	7	4 (57.1)	1 (14.3)	2 (28.6)
Gender
Cisgender woman	8	3 (37.5)	2 (25)	3 (37.5)
Cisgender man	38	24 (63.2)	7 (18.4)	7 (18.4)
Transgender or gender fluid/gender nonconforming	4	3 (75)	1 (25)	0 (0)
Access to smartphone, tablet, or computer
Yes	33	17 (51.5)	7 (21.2)	9 (27.3)
No	17	13 (76.5)	3 (17.7)	1 (5.9)
Unstably housed
Yes	17	11 (64.7)	2 (11.8)	4 (23.5)
No	32	19 (59.4)	8 (25)	5 (15.6)
Incarceration in past year
Yes	7	3 (42.9)	1 (14.3)	3 (42.9)
No	43	27 (62.8)	9 (20.9)	7 (16.3)
Length of time living with HIV
5 Years or less	9	4 (44.4)	3 (33.3)	2 (22.2)
More than 5 years	41	26 (63.4)	7 (17.1)	8 (19.5)

In-depth interviews confirmed participants were generally open to the peer navigation model, with reported advantages being alleviation of transportation barriers and having someone who cared for them and would support them through their HIV care journey.

You've got somebody in your corner. It's like…you've got somebody there that didn't give up on you.—PLWH-OOC

It makes you feel like somebody actually cares…about whatever it is that you're going through that you're missing your appointments—that somebody's there and trying to help you stay up to date with your health.—PLWH-IC

Participants viewed the peer navigator as someone who could help identify and overcome barriers that prevent patients from coming into the clinic for care.

Ask them, ‘Is it anything I can do to help you that can make you come in, that will help you to get here? What is it that you need? What do you need us to do?’—PLWH-OOC

Perceived barriers to peer navigator visits included privacy and confidentiality issues, stigma, and lack of trust in the peer navigator.

Just being put out…people finding out about your condition, about your HIV status.—PLWH-OOC

Participants discussed the need for community visits to occur in an agreed-upon safe and neutral meeting place, to be planned ahead of time, and for the peer navigators to ideally “blend in” with the community, be caring, trustworthy, friend-like, and trained to not mention any personal or health-related information.

I should be able to confide in them.—PLWH-OOC

Outgoing, energetic, caring. People person. Love what they're doing and have an understanding for what these people are going through.—PLWH-CAB

Just talking to you…not really in medical terms or anything, just basically like a friend…someone that's not gonna talk at me and try to make me feel guilty about missing my appointment or why I'm not coming in.—PLWH-IC

One participant described how interactions with a peer navigator taking place outside of an individual's home, such as at a hangout spot, should be friendly, discreet, and casual.

Casual, nonchalant; not, ‘Hey, you know you forgot your freaking appointment’…none of that. ‘Look here, girl, let me talk to you real quick; we got important situations that we got to handle real quick’, and pull me to the side, and be more discreet, confidential about it.—PLWH-OOC

One peer further elaborated that clinics should focus on general community relationship building, led by peer navigators to better reach and serve PLWH-OOC.

I think we need to be in the streets, on the streets, really engaging folk; those who are not even infected with HIV but know people who are. I think word of mouth is probably one of the strongest means for recruitment.—PLWH-Peer

Finally, when asked how peer navigation might change the likelihood of attending their appointments and how they think about their HIV care, participants described the potential positive impacts such as increasing personal engagement and accountability.

It would change tenfold. It would make the person feel a lot more comfortable. It would make them want to feel more a part of their medical situation.—PLWH-OOC

It would give me a different outlook. It'll make me feel like, really somebody cares, not just for me to come get medicine, you know. It'll make you really feel different about taking the medicine, about your life.—PLWH-OOC

I think it would hold people more accountable. Because you know…especially people who are by themselves, you don't have nobody holding you accountable for your appointments.—PLWH-IC

Discussion

Half of all PLWH in the United States are not retained in HIV care despite the availability of evidence-based retention interventions. This study builds on the recognition that these interventions to retain PLWH in care are ineffective if clinics are unable to first contact those who are OOC. It addresses a critical gap in the understanding of preferences of PLWH-OOC with regard to clinic communication and outreach to remind them of and help them navigate to essential HIV clinic appointments and services.

The range of contact preferences in our sample is a reminder that PLWH-OOC are not a homogenous group and that a “one-size-fits-all” clinic communication approach would be ineffective. Rather, clinics should utilize a variety of communication and outreach options to reach and re-engage PLWH-OOC. The three most commonly preferred methods in our sample of PLWH-OOC were phone calls, text messages, and calling a secondary contact. This aligns with the literature on general, non-HIV medical appointment reminder preferences, which shows that phone calls, texts, and emails are highly preferred contact methods.²³ While many HIV clinics use these methods to contact patients, it is clear that these strategies alone are not enough to effectively reach all PLWH-OOC.

Less commonly used methods such as peer home outreach visits and social media messages were highly preferred by about a quarter of survey participants, indicating that these methods should be incorporated into regular clinic operations and offered to patients alongside more traditional means of contact. Patients' preferences and informed consent to be contacted through various methods should be documented at first clinic intake; further, the fluidity of patient preferences over time, as discussed in the qualitative interviews, underscores the need for clinics to update documentation of preferences at each care visit to inform future contact attempts. Early data from clinics that have used “outreach coordinators” to contact patients using a stepwise, multi-faceted approach—phone calls to the patient and their secondary contacts, mailed letters, and finally a home visit—demonstrate success with re-engaging and retaining a sizeable number of PLWH-OOC.¹³

While past research has found social media messages to be strongly disfavored for general medical appointment reminders,²³ our results suggest that PLWH-OOC may be more receptive to this method of communication than the general public. The least-preferred contact methods among PLWH-OOC in this study were mobile app messages and peer navigator visits at a site frequented by the participant. There is a large body of research on the development of mobile apps for PLWH^24–26 with one recent study finding 17 apps available for HIV management;²⁷ however, our findings may suggest low interest in these apps among PLWH-OOC. While small sample sizes within each age group prevent statistical examination of preferences by participant characteristics, future research should, in a larger sample, examine notable trends such as younger PLWH-OOC being more amenable to nontraditional means of contact (i.e., peer visits, social media) and cis-gender women finding home/community-based peer visits less acceptable.

As demonstrated by the COVID-19 pandemic, HIV outreach and care delivery outside of the clinic—such as through home/community peer visits,²⁸ mobile care,²¹ and telehealth²⁹—are increasingly important to ensure patients who face challenges engaging in traditional fixed clinic care have alternative or supplemental care options. In this study, peer outreach was widely accepted, with 80% of participants reporting comfort with home or community visits. The subgroup most comfortable with home visits were those without a phone, tablet, or computer, suggesting that lack of access to other methods of communication may influence willingness to engage in peer navigation. Low levels of comfort with peer navigation visits among those recently incarcerated require validation and further exploration as to the cause and strategies for making peer visits more acceptable.

Aligning with the literature,³⁰ interview participants reported that by demonstrating compassion, advocacy, and support, peer navigators could positively impact the outlook and involvement of PLWH-OOC in their medical care.

Although PLWH-OOC in this study were generally open to peer visits, few selected it as one of their most preferred contact methods. This may be because participants had not previously heard of peer navigation programs, as they are not currently a first-line method used by clinics, or because they truly are less preferred than more traditional means of contact. More participants preferred visits to their home compared with in the community, suggesting that clinics should use additional measures to increase comfort with community visits. Design of peer navigation programs should be informed by participants' suggestions, including the need to identify an agreed-upon meeting time and location, ensuring peer navigators are demographically representative of the community, and establishing methods for preserving privacy and confidentiality.

The major strength of this study is its recruitment of and focus on PLWH-OOC, a population whose preferences are critical to understand and address to “end the epidemic” but who often go unexamined due to difficulty reaching them. Further, the inclusion of perspectives from PLWH at other points on the care continuum helps develop a richer understanding of how best to reach PLWH-OOC. Key study limitations include limited generalizability due to restriction of the survey sample to PLWH-OOC in Atlanta and limited subgroup analysis due to small sample size. Future research should validate study findings in other settings and on a larger scale to enable analysis of subgroup preferences as well as include qualitative exploration of factors influencing contact preferences, which could help clinics tailor resources to better reach PLWH-OOC.

In conclusion, while standard methods of contact are most preferred by PLWH-OOC, nontraditional methods such as peer outreach and social media messages are also strongly acceptable to a sizeable portion of the population. Findings highlight the need for clinics to offer a suite of communication and outreach options to reach PLWH-OOC, including expanded community-based peer navigation programs.

Authors' Contributions

E.R.N.: Conceptualization, investigation, formal analysis, and writing—original draft preparation. M.R.F., M.D.J., and A.M.: Investigation, formal analysis, and writing—review and editing. C.G.A. and S.A.H.: Methodology and writing—review and editing. A.S.K.: Conceptualization, methodology, funding acquisition, supervision, and writing—review and editing.

Availability of Data and Material

The data underlying this study cannot be shared publicly because of confidentiality concerns. Data are available from the Emory IRB (irb@emory.edu) or through the corresponding author.

Consent to Participate

Informed consent was obtained from all participants.

Author Disclosure Statement

No competing financial interests exist.

Funding Information

This work was supported by the Center for AIDS Research at Emory University under grant P30 AI050409.