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. Author manuscript; available in PMC: 2022 Jul 1.
Published in final edited form as: AIDS Care. 2021 Jan 23;33(7):962–969. doi: 10.1080/09540121.2021.1874277

A qualitative study of antiretroviral therapy adherence interruptions among young Latino men who have sex with men with HIV: Project D.A.I.L.Y.

Diana M Sheehan a,b,c,*, Yazmine De La Cruz a, Daisy Ramírez-Ortiz a, Dallas Swendeman d, Miguel Muñoz-Laboy e, Dustin T Duncan f, Miguel Ángel Cano a,b, Jessy G Devieux g, Mary Jo Trepka a,c
PMCID: PMC8217108  NIHMSID: NIHMS1664508  PMID: 33486977

Abstract

Consistent antiretroviral therapy (ART) adherence is necessary for HIV viral suppression. However, adherence may fluctuate around daily routines and life events, warranting intervention support. We examined reasons for ART adherence interruptions, using in-depth, semi-structured qualitative interviews, among young (18–34 year old) Latino men who have sex with men (YLMSM) with HIV. Interviews (n=24) were guided by the Theory of Planned Behavior, the Information-Motivation-Behavioral Skills Theory, and the Socio Ecological Model. Two coders independently coded transcripts using NVivo 12 software and synthesized codes into themes using Thematic Content Analysis. Results suggested 4 primary influences on ART adherence interruptions: 1) HIV diagnosis denial, 2) breaks in daily routine, 3) substance use, and 4) HIV status disclosure. Participant quotes highlighted routinization of pill-taking and planning ahead for breaks in routine as critically important. The narrative suggested modification of pill-taking routines during alcohol use, and that periods most vulnerable for long-term interruptions in ART adherence were following an HIV diagnosis and during periods of drug use. Support at time of HIV diagnosis, including a plan for routinization of pill taking, and adaptive interventions incorporating real-time support during breaks in routines and substance use episodes may be one way to help YLMSM adhere to ARTs.

Keywords: human immunodeficiency virus, antiretroviral therapy, Latinos, adherence

Introduction

Adherence to antiretroviral therapy (ART) among people living with HIV (PLWH) suppresses HIV viral load, yielding health benefits for the individual and lowering the risk of HIV transmission to others (Li et al., 2019; Park et al., 2018; Rodger et al., 2013; Smith et al., 2004). Although ART regimens now typically consist of a single pill with minimal adverse effects (Günthard et al., 2016), adherence is suboptimal for some populations as reflected in low viral suppression rates (Harris et al., 2019). In 2017, approximately 40% of young adult (<35 years of age) Latino men who have sex with men (YLMSM) with HIV were not virally suppressed (Singh et al., 2017).

Studies suggest that even ART adherence of less than 95%, as measured by self-report, pill counts or electronic monitoring systems, can maintain viral load suppressed, though whether this holds for both first- and second-line regimens is unclear (Bangsberg, 2006; Maggiolo et al., 2005; Paterson et al., 2000; Shuter et al., 2007). However, patterns of treatment interruption, both regular brief interspersed missed doses and sustained interruptions, have been associated with viral rebound (Parienti et al., 2008). In addition, low to moderate ART adherence (<90%) has been associated with ART drug-resistance (Sethi et al., 2003).

Antiretroviral therapy adherence has traditionally been examined as a stable-state factor, or as a trait that is consistent over time and place (i.e. average past 30-day adherence) (Langebeek et al., 2014). Factors associated with generalized ART non-adherence include drug and alcohol abuse, anxiety and depression, self-efficacy, stigma, and social support framed as stable state traits (Curioso et al., 2010; Harkness et al., 2018; Langebeek et al., 2014; Murphy et al., 2003). However, ART non-adherence events are more likely due to momentary-state factors, meaning that non-adherence fluctuates around everyday life, time and place, and may be affected by day-to-day changes in psychosocial factors that warrant intervention support (Cook et al., 2016; Cook et al. 2018; Dowshen et al., 2013; Janda et al., 2006; Reis 2012). In other words, retrospective measures of psychosocial barriers may not generalize to moment-by-moment behaviors (Cook et al. 2018). To gain in-depth understanding of the momentary-state factors that influence both brief and sustained treatment interruptions, we qualitatively examined reasons for ART adherence interruptions, and focused on factors that influence the daily ability and willingness to adhere to ARTs for YLMSM (18–34 year old) with HIV.

Methods

Study setting and population

We conducted 24 in-depth semi-structured qualitative interviews to examine barriers and facilitators to daily ART adherence among young (18–34 year old) Latino men who have sex with men (YLMSM) living in South Florida as part of Project D.A.I.L.Y.—a larger ecological momentary assessment study of ART adherence. To be eligible, participants had to have been diagnosed with HIV and be on ARTs for at least one year. Participants were recruited through local HIV care clinics and community-based organizations through provider referrals and flyers. Participant demographics are provided in Table 1.

Table 1.

Characteristics of young Latino men who have sex with men who participated in semi-structured qualitative in-depth interviews, Miami, Florida (N=24)

Characteristic Percent N (%)
Age (year) 29.4 (mean)
Marital Status
 Same sex partner, married 1 (4.2)
 Same sex partner, unmarried 7 (29.2)
 Single 15 (62.5)
 Other 1 (4.2)
Education
 High School diploma 2 (8.3)
 Some college 8 (33.3)
 Bachelor’s degree 10 (41.7)
 Master’s degree 3 (12.5)
 Unknown 1 (4.2)
Latino origin
 Cuban 7 (29.2)
 Puerto Rican 2 (8.3)
 Venezuelan 6 (25.0)
 Other 9 (37.5)
Race
 White 15 (62.5)
 Black 1 (4.2)
 Multiracial 8 (33.3)
Immigrant generation
 1st generation (foreign-born) 16 (66.7)
 2nd or 3rd generation (United States-born) 8 (33.3)
Employment status
 Full-time 13 (54.2)
 Part-time 3 (12.5)
 Self-employed 3 (12.5)
 Unemployed 5 (20.8)
Health insurance coverage
 Ryan White Program 14 (58.3)
 Private health insurance 6 (25.0)
 Other 4 (16.7)
Gender identity
 Male 22 (91.7)
 Genderqueer/gender non-conforming/gender fluid/other 2 (8.3)
Sexual identity
 Gay 20 (83.3)
 Bisexual 2 (8.3)
 Pansexual 1 (4.2)
 Unknown 1 (4.2)
Sexual behavior
 Sex with men only 21 (87.5)
 Sex with both men and women 2 (8.3)
 Unknown 1 (4.2)
Sexual attraction
 Only attracted to men 15 (62.5)
 Mostly attracted to men 7 (29.2)
 Equally attracted to men and women 1 (4.2)
 Unknown 1 (4.2)
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Data collection

In-depth interviews occurred between June 2019 and January 2020 and were conducted in a private room at the participant’s HIV clinic, community-based organization, or research office. After consenting, participants completed a demographic form. Interviews were audio-recorded, conducted in English (15) or Spanish (n=9), and lasted one hour. The interview guide was guided by Cook et al.’s work (2010) because it incorporates momentary-state predictors with validated conceptual models including the Theory of Planned Behavior (Ajzen, 1991) and the Information-Motivation-Behavioral Skills Theory (Fisher & Fisher, 1992) and because it has been used to study ART adherence among PLWH. Additionally, we used the Social-Ecological Model (Bronfenbrenner, 1989) to incorporate substance use, and environmental and social factors associated with HIV health disparities. We asked questions about participant’s daily ART pill-taking routine, what influenced their willingness or ability to adhere to ARTs on any given day and whether location influenced their adherence (See supplementary file for interview guide).

Data analysis

Interviews were transcribed verbatim and kept in their original language for analysis. Two Spanish/English bilingual coders independently coded transcripts using NVivo 12 software (QSR International, 1999) and synthesized codes into themes using Thematic Content Analysis (Boyatzis, 1998). Data were grouped into a priori categories based on our theoretical frameworks, and additional categories were considered. The first-author then evaluated reliability using High Intercoder Reliability (Braun & Clarke, 2006). The overall Kappa was 0.67, and values for individual nodes ranged from 0.37 to 0.92. Differences were discussed until consensus was reached. Themes were separated into general (expressed by most participants), typical (expressed by some participants), and variant (expressed by a few participants) themes. The Florida International University Institutional Review Board approved this study.

Results

Overall, we found support that our a-priori categories at the individual-level (e.g. substance use), micro-level (e.g. family/friends) and meso-level (e.g. places) influenced momentary-state ART adherence motivation and behavior, and found little support that our a-priori category at the macro-level (stigma and discrimination) influenced momentary-state ART adherence motivation and behavior for YLMSM with HIV. Themes described by participants are exemplified below and summarized in Table 2.

Table 2.

Summary of domains and core ideas by frequency related to antiretroviral therapy (ART) adherence interruptions expressed by young Latino men who have sex with men living with HIV, South Florida

Domain Core idea
General
Coping Denial of HIV diagnosis described as being related to ART interruptions
Routinization of pill-taking Routine for pill-taking described as critical for limiting ART interruptions
Routine for pill-taking included pre-set time of day, weekly pillboxes and mobile phone alarms
Breaks in daily routine described as related to ART interruptions
Difficult to maintain pill-taking routine during travel or on weekends
Drug and alcohol use ART interruptions around drug/alcohol using event
Pill-taking routine modified to accommodate drug/alcohol using event
Longest periods of ART interruptions occur during drug using life stages
HIV disclosure HIV non-disclosure to surrounding individuals requires modifications to pill-taking routine
HIV non-disclosure leads to hiding pill-taking, disrupting pill-taking routine
Motivation Internal motivation to stay healthy limits ART interruptions
Responsibility not to transmit HIV to others limits ART interruptions
Typical
Social support Reminders from others improve pill-taking but not expected or used as a primary strategy for pill-taking
Mental health Stress and anxiety symptoms sometimes relate to ART interruptions
Negative relationships or troubled stages with intimate partners related to ART interruptions
Variant
Stigma and discrimination Perceived HIV stigma and discrimination not described as being directly related to ART interruptions
Perceived MSM-stigma stigma and discrimination not described as directly related to ART interruptions
Perceived ethnic discrimination not described as related to ART interruptions
ART side effects ART side effects described as influencing ART interruptions, but only rarely mentioned
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Note: General = expressed by most participants; Typical = expressed by some participants; Variant = expressed by a few participants

General

General core ideas expressed by most YLMSM with HIV related to ART adherence interruptions included coping with HIV diagnosis, routinization of pill-taking, drug and alcohol use, and HIV disclosure. When discussing moments and times when ART interruptions were most likely to occur, most participants re-told stories about the moment when they were diagnosed with HIV, commenting that HIV diagnosis denial prevented them from adhering to their ART. For example:

“When they started to give me medications and I didn’t accept it [HIV diagnosis] I did not want to see the pills. Sometimes I took them [ART pill], sometimes I didn’t, sometimes I did accept it [HIV diagnosis], sometimes I didn’t, but once I accept it [HIV diagnosis] I would take it [ART pill] everywhere with me.”

Most participants reported developing a routine for pill-taking to be critical for limiting ART adherence interruptions. Routines generally included a pre-set time of day, the use of a pillbox, and the use of a mobile phone alarm. In reference to facilitators to ART adherence, participants stated a routine that is easy is key. For example:

“[What helps to take my medication is] to create a specific routine that is easy to follow. I noticed that with Atripla it was very easy to make a routine because I simply took one pill before going to sleep, independent of what was my bedtime... Then I was switched to Juluca. I do have to take this medication with food and my meals are not always at the same time. So, now I have to make extra effort to remember during my meals of the day that I have to take the medication.”

Most participants expressed that breaks in daily routine, typically on weekends or around travel, contributed to missed doses of ART:

“The weekends have been where I’ve had the most missed doses here and there, and it’s like when I’m out with friends and I just forget to bring them along.”

“There was a time when I went on a trip with my family… I only had 3 pills and we were going to be gone for 5 days, so there were a couple of days there where I didn’t have any medication.”

Young Latino MSM with HIV expressed three ways in which alcohol and drug use contributed to ART adherence interruptions. First, YLMSM expressed forgetting to take their medication due to the after-effects of alcohol. For example:

“There could have been days where I was out drinking the night before and I forgot to take it [ART] the next day because I was hung-over and maybe not having an appetite.”

Second, YLMSM expressed modifying their ART schedule around an alcohol using event. For example:

“…if I am going to go out with friends… if I am going to drink any alcohol, well, I don’t take the pill. I wait until I come back, and let a few hours go by, then I can take the pill.”

“I can think of times where I am drunk and I already feel a little intoxicated, I don’t want to add fuel to the fire and pop this pill [ART] right now and there has been times where I purposely chose not to take my medication if I’m super messed up, I can miss a day.”

Third, YLMSM expressed that the longest periods of ART adherence interruptions occurred during drug-using life stages. For example:

“When I was using drugs I stopped [taking ART] for like 2 months… just because I was getting high and I would lose control of the days and the times....”

“I used to be addicted to cocaine, crystal meth, pills, all that type of stuff. I would purposely not take my medication while I was on a bender [extended period of drug use] because I already knew that my body was loaded with whatever substance…”

An additional contributor to ART adherence interruptions was non-disclosure of HIV status to surrounding individuals, such as in these examples:

“Some friends don’t know I have HIV, so I don’t want them to see me taking my pill… if I go to a casual sexual encounter, well, I don’t want them to know I have HIV, so depends on the person that is next to me… I am not going to take my medicine, I’m going to wait some time and take it later.”

“My family does not know [I have HIV] so sometimes it makes it very difficult to take out the bottle to take out the pills… I don’t want my family to find out.”

In general, YLMSM expressed an internal motivation to stay healthy, as well as the desire not to transmit HIV to others, as reasons why they take ART daily. For example:

“The desire to be good, to feel good, because before having [ART] medication… I did not feel good, [I felt] tired, and since I take medications I feel very good. That motivates me to take my medication every day...”

“I’m apprehensive even though I haven’t been sexually active… about what my lab results are going to be and I hope that you know, everything is within range, so that really keeps me motivated [to take ART daily]… and I want my viral load to stay undetectable, because it gives me peace of mind.”

Typical

Typical core ideas, expressed by some YLMSM with HIV related to ART interruptions included social support and mental health. Although reminders from others were not used as a primary strategy for ART adherence, participants who had disclosed to close family, friends, and/or partners, described them as positive influences on pill-taking. More generally, the influence of mental health on ART adherence interruptions was described in the context of HIV—that is, as a result of HIV denial and guilt. Some YLMSM did express that they were likely to miss ART dosages on days/moments of high stress and anxiety, for example, due to job conditions or when intimate relationships were not going well. Missed doses due to stress and anxiety were often related to forgetting to take their medication, rather than conscious decision-making.

Variant

Variant core ideas, expressed by a few participants, related to stigma and discrimination and ART side effects. Contrary to our a-priori themes, only a few participants expressed that perceived HIV-related and MSM-related stigma and discrimination experiences have led to ART adherence interruptions. However, disclosure concerns were mentioned and their relationship to stigma and discrimination concerns should be acknowledged.

Discussion

Our qualitative study of YLMSM with HIV suggested four primary influences of ART adherence interruptions, namely denial of HIV diagnosis, breaks in daily routine, drug or alcohol use, and inadvertent HIV status disclosure. Social support and mental health symptoms, such as stress and anxiety, were sometimes described to influence ART adherence interruptions. Despite being included in our theoretical framework through Bronfenbrenner’s Social-Ecological Model (1989), enacted stigma and discrimination experiences, were infrequently mentioned to influence ART adherence interruptions among this population.

Young Latino MSM with HIV in this study described both repeated brief and prolonged interruptions in ART adherence following initial HIV diagnosis. This finding is consistent with low rates of prompt linkage to care after HIV diagnosis among YLMSM in the United States, indicating pre-treatment loss to follow-up (Gant et al., 2017). More recent models of rapid ART initiation may decrease pre-treatment loss to follow-up, including same-day ART initiation (Ford et al., 2018). Also, it is possible that some testing sites are better able to counsel YLMSM (Sheehan et al., 2018), helping to mitigate denial of HIV status that may lead to avoiding care (Maughan-Brown et al., 2019). Although failure to link to care is fairly well described in the literature, less is known about loss to follow-up shortly after ART initiation or ART adherence immediately after linkage to care. Initial ART adherence has been shown to predict long-term viral suppression (Ford et al., 2010), thus improved adherence counseling for YLMSM at and following an HIV diagnosis, potentially via virtual or tele-health medicine, may be important for long-term viral suppression.

Breaks in daily routine were most often described as a reason for ART adherence interruptions. This finding is consistent with a meta-analysis of 125 studies which found that among the most frequently reported barriers to ART adherence was changes to daily routine (Shubber et al., 2016). In our study, routinization of pill taking and planning ahead for breaks in routine were described as critically important, as in previous studies (Ryan & Wagner, 2003; Shubber et al., 2016). Routinization of pill taking and planning for breaks may provide a sense of control, leading to ART adherence behavior as proposed by Cook et al.’s framework (2010). Momentary-state sense of control, possibly provided by pill taking routines, has been associated with momentary-state HIV prevention behaviors in prior research (Cook et al. 2016). Importantly, ART adherence interruptions due to breaks in routine were described as brief (one or a few days). However, adherence interruptions of as little as 48 hours have been associated with HIV viral rebound (Haberer et al., 2015; Parienti et al., 2008). Nevertheless, viral suppression appears to resume once continuous ART is restarted (Clarridge et al., 2018; Cohen et al., 2007; Rudy et al., 2009).

Our participants described that breaks in routine caused them to forget to take their medication or accidentally not have their medication available (such as during unplanned overnight travel), consistent with previous studies (Shubber et al., 2016). However, in a previous study by Sauceda et al. (2018) among a sample of largely men who have sex with men, although “forgetting” to take ART medication was the most frequently cited barrier to ART adherence, it was not strongly associated with a 4-day treatment interruption—the maximum number of days without ART that still confers sufficient drug concentrations according to some studies (Genberg et al., 2012; Miron & Smith, 2010). Some participants also noted that stress and anxiety affected their adherence, consistent with Cook’s et al.’s (2010) proposed theory and findings from a study (Cook et al. 2016) that suggest that momentary-state stress affects momentary-state motivation and HIV behavior. Our finding that motivation to stay healthy affects ART adherence is also consistent with Cook’s et al,’s (2010) framework as it relates to the Information-Motivation-Behavioral Skills Theory (Fisher & Fisher, 1992) and Cook’s et al.’s (2016) prior research among PLWH.

Young Latino MSM with HIV in our study reported that the use of alcohol and drugs influenced ART adherence interruptions, consistent with previous studies (Sauceda et al., 2018; Shubber et al., 2016; Voisin et al., 2017) and the individual-level factors proposed in the Social-Ecological Model (Bronfenbrenner, 1989). Our study adds a more in-depth understanding of the ways in which substance use disrupts adherence, namely through the after-effects of substance use (being intoxicated or high), through the intentional brief interruption or modification of ART pill-taking routine to accommodate substance-using event, and through prolonged interruptions of ART treatment during extended drug-using periods. Each of these events may require individualized and real-time intervention support, such as those delivered through just-in-time adaptive interventions (JITAI) (Bae et al., 2018; Suffoletto et al., 2015). Notably, several previous ecological momentary studies suggest that evening heavy drinking may be influenced by daytime mood (Dvorak, Pearson & Day, 2014; Slavish et al., 2019), and thus both, mood and drinking behaviors, may need to be targeted through JITAI to improve ART adherence. Finally, YLMSM in our study described that lack of HIV status disclosure to surrounding individuals when ART took place resulted in modification of ART pill-taking routine that sometimes led to ART adherence interruptions. While lack of HIV status disclosure to family and/or friends has been associated with poor ART adherence in numerous studies, these studies have focused on overall disclosure to social network members (Anderson et al., 2018; Mi et al., 2020; Stirratt et al., 2006) similar to our conceptualization which was based on Cook et al.’s framework (2010) and the Social-Ecological Model (Bronfenbrenner, 1989). Instead, our participants’ description of disclosure was more practical—expressing inadvertent disclosure to surrounding individuals when it was time to take their ARTs as a factor affecting their ability or willingness to take their ART medication. Although not explicitly articulated by participants, disclosure concerns may be due to anticipated fear of stigmatization or discrimination.

Our findings are limited to individuals engaged in HIV care. Further, our sample included Latinos recruited in South Florida only—a high Latino and MSM density area—limiting the generalizability of our findings to Latinos in other geographic areas. Nevertheless, support at the time of HIV diagnosis, including a plan for routinization of pill taking, and mHealth adaptive interventions which incorporate real-time support during breaks in routines and during substance use may be one way to help young Latino MSM adherence to their ARTs, particularly as we serve PLWH during and after the COVID-19 pandemic (Hightow-Weidman et al., 2020). Additionally, disclosure support may help this population decrease daily barriers to ART adherence.

Supplementary Material

Supplementary Material

Acknowledgments

Funding

This work was supported by the National Institute on Minority Health & Health Disparities (NIMHD) under Grant K01MD013770, U54MD012393 and Grant 5S21MD010683. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Footnotes

Conflicts of interest: None.

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