AIDS PATIENT CARE and STDsVolume 14, Number 3, 2000Mary Ann Liebert, Inc.

Barriers to and Facilitators of HIV-Positive Patients’Adherence to Antiretroviral Treatment Regimens

KATHLEEN JOHNSTON ROBERTS, Ph.D.

ABSTRACT

HIV-positive patients must strictly adhere to antiretroviral regimens for the medications towork properly. Little, however, is known about the obstacles that patients face in adheringto the regimens or what, if anything, helps patients to adhere. The goals of the project wereto describe, from HIV-positive patients’ own perspectives, the barriers they face in adheringto antiretroviral regimens and the strategies they use to maximize their adherence. Five mainbarriers (forgetfulness, social/physical environment, complexity of the regimens, medicationside effects, and inadequate patient knowledge) to adherence and six main facilitators (me-chanical devices, “making a commitment,” “routinizing,” health beliefs, social support, andprofessional support) emerged from the data. Patients may overcome some of these barriersby receiving better health education about the need for adherence, professional and lay sup-port for their efforts, and mechanical devices such as alarm clocks and medi-sets. Other bar-riers, however, such as the complexity of the medications, highlight the need for simplifiedantiretroviral regimens.

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GREAT ADVANCES have been made recentlyin the medical war against AIDS. Anti-

retroviral drug “cocktails,” which include pro-tease inhibitors and other anti-HIV drugs, havebeen found to reduce the amount of virus inmany patients’ blood to undetectable levels.1

While researchers and clinicians do not use theword “cure” to describe the latest treatmentregimens, it is clear that the regimens helpmany individuals live longer and healthierlives.2–4

Despite the cautious optimism associatedwith the antiretroviral cocktails, the medica-tions have a darker side. Regimens are ex-tremely complicated, with strict rules regard-ing when patients must take the drugs (e.g.,time of day, with or without food) and how to

store the drugs (e.g., in refrigerator or not).3,5–7

Moreover, the regimens can be very demand-ing with patients being required to swallow nu-merous pills each day.7 The regimens also tendto produce a host of side effects for patientsranging from mild symptoms that may be tol-erable (e.g., nausea) to severe symptoms thatmay be debilitating (e.g., kidney stones).5,8

If patients do not take antiretroviral medica-tions essentially as prescribed, if doses aremissed or taken improperly, resistance selec-tion is expected, leading to clinical failure.3,5

Moreover, resistant HIV may be transmitted.9

Hence, adherence to antiretroviral regimens isimperative, not only for the health of individ-ual patients, but also for the health of the pub-lic as a whole.

University of California, Los Angeles.

Despite the importance of HIV-positive pa-tients adhering to cocktail antiretroviral regi-mens, and the difficulties associated with theirdoing so, there is a paucity of research regard-ing this topic. Most studies in this domain havefocused on patients’ adherence to monother-apy, especially regimens of zidovudine (AZT).For example, Muma and colleagues10 foundthat only 42.3% of a sample of 52 HIV-positivepatients was adherent to their AZT regimen.

Freeman and colleagues11 also found highlevels of nonadherence to AZT treatment regi-mens among injection-drug using HIV-positiveindividuals. Participants reported the follow-ing as reasons for missing doses: forgetting,wanting to “hoard” one’s medication to eithersell it or to minimize the number of visits toHIV clinics, being uncertain about how to takethe medication, and insisting that a lower-than-prescribed dose was enough to “hold them.”

Wall and colleagues12 randomly assigned 27patients on an AZT medication regimen to asupervised therapy group (i.e., patients weredispensed their medications by health care pro-fessionals) or a usual care group (i.e., patientswere responsible for taking their medicationthemselves). Results showed that those in thesupervised therapy group had better adher-ence, as measured by laboratory tests, thanthose in the usual care group.

A recent study assessed the adherence pat-terns of 244 HIV-positive patients, most ofwhom were on monotherapy.13 Resultsshowed that 60% of the patients had taken atleast 80% of their doses of antiretroviral med-ication in the past 7 days. Barriers to adherenceinclude patients’ having to take medicationmore than twice a day, being unable or un-willing to take medication when not at home,and believing that they could not adhere totherapy.

Only one study to date has assessed the bar-riers that patients face in adhering to cocktailantiretroviral regimens. Chesney’s14 pilotstudy showed that 12% of patients in one clin-ical trial had missed one dose of medication inthe preceding day, and 11% had missed a dosethe day before that. Of those patients who ad-mitted missing a dose, 40% said that they hadsimply forgotten, 37% had slept through thedose, 34% were away from home, 27% had

changed their therapy routine, 22% were busy,13% were sick, 10% were experiencing side ef-fects, and 9% were depressed.

The studies to date suggest that many HIV-positive patients have difficulty adhering to an-tiretroviral medications. More data, however, areneeded to better understand the complexities ofadherence to cocktail regimens and to design in-terventions that may be useful in improving pa-tients’ adherence. The goals of this project wereto describe, from HIV-positive patients’ own per-spectives, the barriers they face in adhering toantiretroviral regimens as well as the strategiesthey use to maximize their adherence.

METHODS

In-depth, face-to-face interviews were con-ducted with 28 HIV-positive patients. Inter-views lasted approximately 60 min and wereaudiotaped. All patients were asked aboutwhat, if anything, is difficult about taking an-tiretroviral medications, and what, if anything,helps them take their medications as directed.The interview questions were open-ended andthe content, as well as the flow of conversation,changed with each subject, to match what theinterviewee knew and felt.15

Written informed consent was obtained priorto the start of each interview. Each participantwas paid $20.00 in cash for his/her time andfor the transportation costs associated withtraveling to the interview site. Fieldnotes werewritten at the conclusion of each interview andall tapes were transcribed.

Sample—recruitment and composition

Participants were recruited from the Univer-sity of California, San Francisco AIDS Programof San Francisco General Hospital (SFGH). Thiswell-regarded, urban, public health clinicserves primarily low-income individuals fromdiverse racial/ethnic backgrounds. Recruit-ment occurred between June 1997 and January1998. Participants were recruited through fly-ers handed out and posted on bulletin boardsin the waiting room. To be eligible for partici-pation, patients had to be 18 years of age, beable to speak English, and have a primary care

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physician. Also, only persons who self-re-ported that they were HIV positive and hadbeen taking an antiretroviral cocktail regimenthat included a protease inhibitor for at least 3months were eligible to participate.

Fifteen men and 13 women respondentswere recruited. The average age of respondentswas 40, although ages ranged from 19 to 54.About half (46%) of respondents were Cau-casian, 36% were African-American, 14% wereHispanic, and 4% were of other racial/ethnicbackgrounds. Over half (54%) of respondentshad completed at least some college educationwhile the rest had completed high school orless education. Forty-three percent of respon-dents earned less than $5000.00 per year, 39%earned between $5001.00 and $10,000.00 peryear, 14% earned more than $10,001.00 peryear, and 4% did not know their annual income. The majority (68%) of patients hadMediCal insurance, 18% had both MediCal andMediCare, 4% had private health insurance,and 11% had no insurance.

The year of HIV diagnosis for patientsranged from 1984 to 1996; the modal year of di-agnosis was 1989 (N 5 5). Eleven percent of pa-tients rated their health status as “excellent,”54% as “good,” 32% as “fair” and 4% as “poor.”The majority (75%) of respondents had HIV vi-ral loads under 5000 copies while 8% hadcounts between 5001 and 50,000 and only onesubject had a count about 100,000. Three pa-tients did not know their viral loads. Eighteenpercent of patients had less than 100 T cells,43% had 101–250, 32% had 250–500, and 8%had 501 or more T-cells.

The three most common antiretroviral med-ication regimens for patient subjects were (1)3TC, d4T, and Crixivan (29%); (2) AZT, 3TC,and Crixivan (14%); and (3) 3TC, d4T, and Vira-cept (11%). The remaining subjects reportedtaking various other regimens. The length oftime patients had been taking their antiretro-viral medication regimen ranged from 3 to 36months, with the average length of time being12 months.

Analysis

Following the suggestions of Strauss andCorbin,16 multiple readings of the transcripts

were performed to identify major ideas orthemes that emerged from the participants’ de-scriptions of their situations. Important and fre-quently mentioned ideas were grouped intocoding categories, for example, barriers relatedto participants’ social/physical environmentand facilitators related to participants’ use ofmechanical devices. Ethnograph (a softwareprogram for computer-based text search andretrieval) was used to help manage the dataduring the coding process.

Adequacy and plausibility of data

Informal respondent validation and peer re-view were employed to ensure the adequacyand plausibility of the data.17,18 First, through-out the interviews, the interviewer asked sub-jects if she was understanding what they weresaying, thus providing respondents with theopportunity to correct any misunderstandingsthat may have arisen, and adding additionaldata to the project that were used to enrich theanalyses and bolster the credibility of the find-ings. Also, the interviewer often “checked” in-formation gleaned from one respondent withanother (e.g., “Some women have said theydon’t like to take their pills in public. What doyou think about this?”). Next, peer review wasaccomplished by having the method of analy-sis and results critiqued by two independentmedical sociologists and one physician whocared for HIV-positive patients. None of theseindividuals expressed concerns about the ac-curacy of the findings.

RESULTS

Barriers

Five main types of obstacles prevented HIV-positive patients from taking their medicationsas prescribed: (1) forgetfulness, (2) social/physical environment, (3) complexity of theregimens, (4) medication side effects, and (5)inadequate patient knowledge.

Forgetfulness. Forgetfulness was the mostcommonly mentioned barrier to adherence tothe regimens. Simply put, patients forget totake their medication as prescribed. Many pa-

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tients mentioned that forgetting occurred whenthey were busy with their daily routines. As pa-tient (PT) 15 stated, “I got so much other stuffgoing on, I really don’t have time. I barely havetime to take pills three times a day.” Some pa-tients were busy with paid work. Others didnot currently work, but kept busy in otherways, such as spending time volunteering atvarious organizations, going to healthcare ap-pointments, and spending time with friends.

Busyness with daily life was an especiallyimportant barrier for those patients who werecaregivers to others. For example, Pt22, amother of four young children, stated:

It [taking my antiretroviral medications]was really hard because, when you havekids, you get up in the morning, you’regetting them to school, you give thembreakfast, and you don’t really have timeto eat. And then, the moment you sit downand you try to find some peace of mind. . . the two year-old wakes up, so you’vegot to fix her breakfast. Then, after sheeats, she’s running around, and you wantto get dressed and do something, and youtotally forget [to take your pills].

Given that women in the United States aremore likely than men to be responsible for childcare, elder care, care of the ill, etc., it is not sur-prising that women respondents were morelikely than men to mention caregiving as a fac-tor that contributed to the business of theirdaily lives, and subsequent nonadherence tothe antiretroviral regimens.

Many patient respondents suggested thatthey often forgot to take doses that were not“tied” to parts of their daily schedules. For ex-ample, if a patient was supposed to take pillsthree times a day, often he/she was fairly goodat remembering to take the morning and nightdoses, but an afternoon or evening dose wasmore difficult to remember because it was notas intimately tied to the daily routine. Pt03 nicelysummarized this type of obstacle, “It’s just hardto remember . . . the 2:00 in the afternoon med-ication because, the others revolve around get-ting up, going to bed, or meal times.”

Numerous patients also mentioned that theywere more apt to miss doses on days that dif-

fered in some way from their normal routines.For example, Pt07 stated that he missed doseson the weekend because “all the shows on TVare different on the weekend, [Laughter] . . .plus, my lover’s home on weekends, so we’reusually out, and you know, we’re out andabout.” The “out-and-about” obstacle was inti-mately tied to patients’ failure to carry med-ications with them when they left their homes.While many patients did this, as will be dis-cussed below in the facilitators section, manydid not, and ended up missing doses while be-ing away from home. Pt20 stated, “We went toGreat America [an amusement park], thatwhole day, I just—I forgot the medicine, and Ijust didn’t take it that day.”

Social/physical environment. The social/phys-ical environment in which patients took theirantiretroviral medications was another impor-tant factor in patients’ adherence to the regi-mens. For some people, being in a publicand/or unfamiliar environment was an obsta-cle to taking their antiretroviral medications.Such environments, for some respondents,were not considered “safe” places to take pills.Specifically, several of the women respondentsstated that they did not carry their medicationswith them because they did not wish to be seentaking the pills in public. No men in this sam-ple mentioned this problem. Because 90% of thepopulation with HIV/AIDS in San Francisco ismale, it may be that many men are simply morecomfortable than women with their HIV status,including having to take anti-HIV drugs infront of others. This is probably particularlytrue for gay/bisexual men in the city who mayknow friends, lovers, and/or acquaintanceswho are living with HIV disease. HIV-positivewomen may not have such a community. Inany case, women in this sample discussed theembarrassment and stigma associated with tak-ing AIDS medications in public. Pt16 stated:

It’s really inconvenient . . . and it’s some-what embarrassing, like I remember timeswhere I was at some friend’s house and—like on holiday, you know, I’m over at afriend’s house, barbecuing and every-thing, and here I come, popping two Crix-ivan pills. [Laughter]. . . . And somebody

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asked, “Well, what are you taking?” I’mlike, “My medication.” And they’re like,“Medication for what?” And I was like,“Ahh—” and I have to think of somethingto tell them because I’m not going to tellthem what it’s for.

Telling people what medications they weretaking was an implicit way for the women todisclose their HIV status. Some respondents be-lieved that people would be able to infer theirstatus simply by seeing them take their med-ications. As Pt24 stated:

If I’m on the bus, of if I’m going some-where, and my alarm goes off and it’s timeto take some, it’s like, do I just take it out,and take some, or do I wait until I’m in aprivate space somewhere? Sometimes ittakes a while to get in that private space.People knowing I’m taking. They say,“Oh. She’s got AIDS.”

If women were not open about their HIV sta-tus, they often did not want pills being a sig-nifier to those around them that they were HIV-positive. Hence, women often had to make upstories to account for their medication-takingbehavior. One woman told her friends that herantiretroviral medications were actually birthcontrol pills. Another woman told her childrenthat her pills were for “the itch” or her “breath-ing.” In any case, not wanting others to knowabout one’s antiretroviral medications oftenpresented an obstacle to taking the pills as pre-scribed. Women would forego a dose ratherthan draw attention to themselves while inpublic, or else would delay taking a dose untilthey were in a “safe” place.

Another barrier related to the social/physi-cal environment was respondents’ lack of ap-propriate food. As noted before, some of theantiretroviral medications have strict require-ments regarding food. Crixivan, for example,should be taken on an empty stomach, whileSaquinavir should be taken with a fatty meal.Pt01 discussed his difficulty with getting theright types of foods to eat with his medications.He lived on very limited income and ate manyof his meals at a nearby soup kitchen. Somedays he did not feel like walking down the

block to the soup kitchen to eat. On such days,he would take his pills on an empty stomach,or else just eat whatever was handy around hishouse (a candy bar, crackers, etc.).

This example shows how socioeconomicstanding plays a role in patient adherence.While people of all classes have been found tohave problems taking medications as pre-scribed,19 some types of challenges are moreprevalent among those of lower socioeconomicstanding. An individual with more money thanthis man could simply buy the groceries nec-essary to take his medications as prescribedwithout having to worry about scrambling fora free meal each day.

Regimen complexity. Patients faced manyobstacles to taking their medications as pre-scribed that were related to the sheer com-plexity of the regimens, including taking med-ications at assigned times, with or withoutfood, with enough water, and with or withoutother medications. Sometimes the magnitudeof this complexity was simply too much for pa-tients and they were unable to do what hadbeen asked for them. For example, Pt21 dis-closed:

Mine say take one every four or five—no,no, wait—one of them say, take one everysuch and such hour, and one tell me totake one just between meals, but youknow what I do? I don’t do it like that. Ijust take them . . . I can’t remember to takethe AZT, take one every two hours andthen the other one say take every—oh! Ican’t remember. That’s too much. So, Isaid, to make it easy on myself, what I dois take them all at one time. . . . Because. . . the right thing is to make sure thatthose pills are in your body . . . that’s all.

Even though this patient believed that she wasdoing the “right thing,” it is possible that hermedication-taking behaviors may lead to viralresistance. The antiretroviral medications arevery sensitive—many have to be taken at pre-cise intervals to maintain constant levels in theblood. Some need to be taken with food to haveany bio-activity. If patients ignore these rules,even if doing so simplifies their lives and

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makes them more likely to actually ingest thepills, they may be risking an outcome thatcould be potentially worse than not taking thepills at all.

Many patients talked about the problem ofhaving to take medications with or withoutfood. For example, at the time of this interview,Pt11 was in the midst of switching antiretrovi-ral medications because the routine he was onhad “quit working” (i.e., his viral load had in-creased while he was on the regimen, possiblysignifying the development of resistance). Hespeculated that the reason for this problem washis inability to eat the right foods while takinghis medication.

Pt30 provides an example of a situationwhere the patient understands what she shouldand should not eat with her antiretroviral med-ications, yet simply does not follow such “foodrules.” She stated:

They said that they [antiretroviral med-ications] don’t work as good with food.There’s certain foods through that you caneat, nonfatty foods. But, I really don’t careat 6:00 pm. I’m so hungry around there, 4to 6, I just eat what’s in the refrigerator.

Hence, the complexity of this patient’s regi-men—especially the requirements regardingfood—are simply too much, and nonadherenceis the result.

Medication side effects. Numerous patientsdiscussed medication side effects as obstaclesthat prevented them from taking their medica-tions as prescribed. Patients responded to med-ication side effects in different ways. For ex-ample, one patient tinkered a bit with hisdosing in the hope of decreasing his side ef-fects. Others stated that they had quit takingtheir medications all together because of theseverity of side effects. As Pt3 stated:

I started with a different drug than Crixi-van that didn’t work for me. It made mereally nauseous. And, I remember I feltlike a little kid, “I just don’t want to takemedicine anymore. I want to throw themedicine out the window, and the hellwith it.” And, that’s how I felt.

Some patients, when experiencing suchproblems, immediately told their physiciansand either were able to switch safely to anotherregimen or were encouraged to “wait out” theside effects (i.e., put up with them until theyeventually subsided). Pt10 told his physicianabout a medication side effect, yet was nothappy with the outcome of the interaction:

My last physician, basically when I had aproblem, a reaction to a drug, which I hadmany at that time . . . would say, “Stoptaking the drug, see me at your next ap-pointment.” That next appointmentwouldn’t be for a month or two . . . so dur-ing that time, things would not be lookinggood, and at that time I went through theresistance problem.

Other patients did not tell their physiciansabout medication side effects and instead tookmatters into their own hands, stopping themedications.

Inadequate knowledge. The final type of bar-rier was patients’ inadequate knowledge re-garding how to take their antiretroviral regi-mens. While this barrier was not as prevalentas those described above, that it appeared at allis significant. Some respondents were nonad-herent because they did not know the properway to take their pills. The extreme case of thisis perhaps Pt29 who took “drug holidays,”days or weeks during which she stopped tak-ing all antiretroviral medications because shebelieved that her body “needed a rest” from thepills. This practice is especially dangerous forpatients, such as this one, who take protease in-hibitors, as drug holidays give the virus ampletime to mutate and become resistant to themedication.

There were less extreme, yet still notewor-thy, examples in the data of patient ignoranceregarding the antiretroviral regimens. The fol-lowing is an excerpt of the interview with Pt21regarding what she did if she was “out andabout” and forgot to take a medication dose:

I: Other people have told me that theymight be out and about and they just for-get to take a dose.

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S: I do that.I: Tell me about that.S: When it happens, I say, “Oh, shit.” Likethat, you know. But, so what I do is, I gohome and go, “Man, now I have to takesix.”I: So you double up for next time.S: I do double up.

Antiretroviral medication guidelines do notrecommend that patients take a double dose ofan antiretroviral medication should they missa dose. Yet, for some reason, this patient be-lieved that this practice was not only accept-able, but helpful. When asked how she knewthat “doubling up” was the thing to do, Pt21stated that she “just knew” because it was“common sense.”

Another patient believed that she had beengiven inadequate information about how totake her medications as prescribed, that is, onan empty stomach. She stated:

I was on this . . . Crixivan study. . . . Andto tell you the truth, they never did reallytell you know important it was to not eator to eat. Some medicines you eat andsome you don’t. And I was never told that.But, then I was reading literature, actuallythe literature told me. And the doctorsdon’t tell you that it’s important but theliterature will.

Facilitators

The barriers presented above show that HIV-positive patients faced many challenges in tak-ing their antiretroviral medications as pre-scribed. How did patients manage some degreeof adherence, despite such challenges? This sec-tion presents six main facilitators of adherencethat emerged from the data: (1) mechanical de-vices, (2) “making a commitment,” (3) “rou-tinizing,” (4) health beliefs, (5) social support,and (6) professional support.

Mechanical devices. Patients used a varietyof mechanical devices to help them adhere totheir medication protocols. Such devices in-cluded “medi-sets” (pill cases that are dividedinto separate compartments to correspond to

days of the week and/or doses during the day),alarm clocks (free-standing and on watches),written notes (e.g., “Kathleen, don’t forget totake your 2:00 pm dose”), and day planners(appointment calenders in which patientsrecorded the time for each dose during a day,week, or month). These devices served as ex-ternal cues that reminded patients about theircomplex medication schedules, thereby reliev-ing some of the burden of remembering the as-sorted “rules and regulations” associated withthe regimens. It seemed that medi-sets, espe-cially, were helpful to many patients. As Pt01maintained:

I have a thing now, it’s a little pill box,right? It has—you put your medication inthem? And, it’s just it’s really good, just totake them for that particular hour . . .they’re in separate little dishes, you knowwhat I’m saying? And they work realgood. So, I could just reach in and graband I don’t have to take the pill bottle,they’re all ready.

Several patients noted that their frequency ofnonadherence changed significantly once theyincorporated a “medi-set” into their routine.Patients who stored their medications in theiroriginal bottles were forced to open numerouspill bottles each day (a true challenge for thosewith weak arm muscles). Moreover, they hadno good way to “check” to see if they had ac-tually taken a dose of medication. This led tovarious medication mistakes, such as inadver-tently taking double doses of medication orskipping a dose because the patient believedhe/she had already taken it. In contrast, “medi-sets” eased the burden of patients’ having toopen lots of bottles and remembering if theyhad actually taken a dose. Pt10 stated:

When I started this pill-taking at an ex-treme like I am now, it was very hard tokeep track of what pills to take when, andhow many, and if you had taken them thelast hour. So, when I got the pillbox, justout of a whim, and people still laugh atme for having one, I can see that there maybe days, or times in the day and theevening where I won’t want to take them.

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Like, late in the evening, when I’m goingto bed . . . I’ll realize that, and I’ll go “okay,well, before I go to bed, let’s take the pills.”I go over, I open this little box, and outpops anywhere from 11 to 20 pills. And, Itake the pills and it’s done with, as op-posed to having to open four, five, sevendifferent bottles at each time. It’s just—that’s extraordinarily frustrating and Iwant to make sure that I’m doing what Ican.

Pt10’s comments are interesting for a coupleof reasons. First, they highlight how a me-chanical device that takes even a bit of the bur-den of taking a complex medication regimenoff of the patient can facilitate a patient’s ad-herence. However, his remarks also suggestthat there may be some stigma associated withusing the medi-set. Pt10 stated that “peoplelaugh at me for having one.” When probed abit further, Pt10 discussed how, in his mind,and perhaps many people’s, having a medi-setsignified that one is unable to remember some-thing important. Pt10 said that he first got theidea of using a medi-set from recalling that hisgrandparents had used medi-sets during theirold age. Hence, in his mind, medi-sets were forthose who were elderly, forgetful, and possiblyinfirm. Pt10 was none of these things, yet hewas living with a serious disease that requiredcomplex medications. He was strong enoughto recognize the need for and helpfulness of themedi-set and to use it, despite the kiddingabout it he received from his peers. It may bethat individuals who are more ambivalentabout taking antiretroviral medications and/ormore influenced by peer pressure would not beable to successfully incorporate a medi-set intotheir routines.

“Making a commitment”. Some patientsstated that they had a mindset (an orientation,or way of being in the world, which stemmedfrom an active, thoughtful, and informed deci-sion to take antiretroviral medications), whichfacilitated their adherence to the antiretroviralregimens. Such patients did not begin the reg-imens until they had thought about and ac-cepted the consequences of doing so: they werecommitted to taking their pills from day one.

Pt09 described this process as similar to beingindoctrinated into the army, “It’s like a routinenow. It’s just something I know I gotta do . . .It’s like a regimentation during the service . . .you got something you got to do for the rest ofyour life if you want to stay alive.”

In a similar fashion, Pt14 described his com-mitment to the regimens as a type of “self-dis-cipline:”

S: I am pretty much on track right now,like I said.I: What helps you stay on track?S: Commitment, that’s all . . . Determina-tion, yeah, to take it . . . Because self-dis-cipline is very important in my way of be-ing brought up. I mean if you havediscipline, you know that you have anobligation to do something.

“Routinization”. While making a commit-ment to take the antiretroviral pills each daywas an important facilitator of adherence, “rou-tinizing” the medication regimen was a way forpatients to fulfill this commitment. “Routiniza-tion” refers to anything that the patients did tointegrate the medication-taking behaviors intotheir daily routines. For example, some patientstied their morning doses to waking up whileothers took their pills with meals. Some pa-tients integrated their medications so success-fully into their schedules that they describedtaking their dosages as being “automatic.” AsPt22 stated, “It’s like a tape recorder now . . .whenever I pick up something to eat, I auto-matically . . . take my pills . . . It’s like, in myhead. It’s like, after you eat, you wash yourhands. It’s automatic.”

“Routinizing” was easier for patients whohad predictable daily schedules as comparedwith those who had less stable lives. A couplepatients stated that because they were at homeduring the day, they had the time and space toconcentrate on taking their pills. As Pt04 main-tained, “I don’t . . . work and I stay home andI make the meals and cook, and I . . . have . . .a clock, and I look at the time.” Whereas, if pa-tients had jobs, or other activities that tookthem away from home during the day, they of-ten had a more difficult time remembering totake their medications.

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An important aspect of the “routinizing” formany patients was carrying their medicationswith them when they were away from home.(Recall that for some patients, not doing thispresented a significant obstacle to taking theirmedications as prescribed.) Interestingly, sev-eral patients actually carried their medicationswith them to the interview for this project, andtook a couple minutes at the outset, or evenduring the middle, of the interview to swallowtheir pills. Some patients also combined a me-chanical device with their “medication carry-ing” to “double ensure” that they would stayon their schedule while they were away fromhome. Pt03 stated, “I always carry some extraanti-virals. I have some in my briefcase . . . Ijust get one of these home beeper boxes withthe pills . . . I just make sure I . . . put someAZT and Crixivan in there and . . . set it . . . togo off at 2:00.”

Health beliefs. Some patients stated that theymade great efforts to take the antiretroviralmedication as directed because they believedthat the pills were making a noticeable positivedifference in their health status. As Pt12 ex-plained. “Even though I’m having side effects. . . I am more active . . . seems like for somereason I’m thinking better, like I’m more alert. . . I feel more life.” In a similar fashion, otherpatients talked about the antiretroviral med-ications giving them more “energy.” Whilethere is no scientific evidence regarding this“energy” outcome of the antiretrovirals, itseemed to be an important factor in patients’willingness to put up with the complex regi-mens.

There is scientific evidence regarding the an-tiretroviral medications’ efficacy in reducingHIV-positive patients’ viral loads. Several pa-tients mentioned that getting good laboratoryresults served as an incentive for them to con-tinue taking their pills as prescribed. Pt23 de-scribed:

The ones now that I take, even when I gotmy blood count last week, and my . . . T-cells went higher and my viral load wasdown—that motivated me. It motivatesme to continue to be faithful two times aday.

Some patients were motivated to take theirantiretroviral medications as prescribed be-cause they believed that their lives literally de-pended on it. As Pt19 stated:

S: Taking your medicine is like a job itself.You really have to—for 24 hours you haveto—you wake up all through the night,and all through the day.I: Is that ever hard, to do that day afterday?S: Yeah . . . I: How do you do it?S: Well I guess I want to live now—the willto live.

In a similar fashion, Pt26 said, “I know it’s sav-ing my life . . . I’m too young to die.”

Related to the idea that the antiretroviralmedications were keeping patients alive, somepatients discussed the fear of getting sick or dy-ing as a great motivator to stick with their reg-imens. Pt28 conveyed this message:

I: What, if anything, helps you stay onschedule taking the medications as pre-scribed?S: Just the idea that if I don’t that I’m to-tally screwed . . . just really . . . this wholefeeling of doom if I should ever go off med-ications . . . If I stop taking the meds, then. . . just . . . I would hate to think whatwould happen.

For some patients, seeing friends and/orfamily members die of or get sick because ofAIDS served as a powerful reminder to taketheir pills. Although they may not particularlylike taking so many pills each day, and fol-lowing all the “rules and regulations” regard-ing food and drink, they knew that they mustdo so to avoid (or at least postpone) the samefate that their loved ones had experienced. Pt16explained:

S: I hate the fact that I have to take it [an-tiretroviral medications]. Oh, I hate it. Ihate it with a passion.I: But you do it all the same.S: Yeah, yeah.I: Why are you doing it?

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S: To keep myself healthy, ‘cause I’m re-ally scared of getting sick and, you know,some of my friends are, and they’re at thestate where they’re not going to be heremuch longer. . . . They’ve gotten really, re-ally, really thin and they’re having healthproblems and stuff. So, it scares me. Youknown, when I see that, it drives me tokeep taking it.

Social support. Seeing friends and familymembers get sick and/or die of AIDS was apowerful adherence motivator for patients, yetloved ones did not have to be sick to exert aninfluence on patients. Rather, patients’ friendsand family members often facilitated patients’adherence in more direct ways: loved ones re-minded patients to take their pills, refilled pre-scriptions for patients, cooked appropriatemeals to take with their doses, etc. Some pa-tients also had friends or family members whowere taking the same, or similar, antiretroviralregimens. Pt02 stated:

My . . . friend, R., is taking the same thing.. . . He’s good about it. He will get up inthe morning, and he takes his medication.Watching him as he’s taking his medica-tion, it teaches me that R. is taking hismedication on the right time. That willhelp me, that will progress me. That willput me in better mood of taking mine atthe right time. Because every time in themorning, at night, in the morning, atnight. It’s always on the right time . . . andthat learns me to take mine.

In this way, Pt02 “modeled” his friend’s ad-herence behaviors, thereby improving his ownadherence to the antiretroviral regimen.

Sometimes HIV-positive friends and/orfamily members did more than serve as “rolemodels” of adherence behaviors. Sometimes,such individuals actually supplied patientswith pills. Pt08 revealed that she often “bor-rowed” antiretroviral medications from herfriends. She explained:

Sometimes it’s hard to remember to getyour pills filled. . . . I usually get my pills,and if I don’t get my pills, everybody I

know’s on the same pills. So, I just callthem and get some of theirs. . . . I went ona retreat once and only brought four Crix-ivan. I don’t know what I was thinking.And then, everybody there had extra Crix-ivan, so, you know.

The practice of borrowing antiretroviralmedications from others is interesting becauseit illustrates how savvy patients can be in termsof adherence. Rather than skip doses, patientsfound ways to get access to the pills their bod-ies needed. Yet, this practice also illustrates thatpatients often take medicines in ways that drugmanufacturers, scientists, and physicians donot intend. Few health care professionalswould likely condone the practice of sharingmedications. This practice could be problem-atic for several reasons. First, patients often areprescribed different strengths of a medication,depending on their body weights. Problemscould occur if patients take pills with too muchor too little prescribed medication. Next, thepatient who lends his/her medication to some-one else may be left with an inadequate sup-ply of pills, thus leading to his/her nonadher-ence. Finally, a patient may inadvertentlyborrow the wrong type of pill. Nevertheless,under difficult circumstances, such as beingaway from home with no pills, it is not clearwhich is the bigger danger, not taking any pillsat all, or risking taking the wrong type oramount of a prescribed medication.

Loved ones did not have to be taking anti-retroviral medications themselves to facilitatepatients’ adherence. Pt09, whose wife is HIV-negative, talked about the numerous remindershe received about his pills each day, “My oldlady . . . she pretty much, she get on me. Well,she, you know, wake up in the morning, ‘Takeyour pills?’ And afternoon, ‘Take your pills?’Evening, ‘Take your pills?’ ” Likewise, Pt10 dis-cussed the help he received from his roommate,“I don’t always remember. But, most of thetimes, J. would be there to say, ‘Hey, take yourpills.’ ”

Professional support. While social supportfrom lay people was often mentioned by re-spondents, several also acknowledged receiv-ing professional support, which facilitated their

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medication-taking behaviors. Such supportcame in different formats: (1) verbal advicefrom health care professionals, (2) supervisedantiretroviral dosing by health care profes-sionals, (3) verbal/written information frompharmaceutical companies, and (4) verbal/written information from community-based or-ganizations.

Pt21 discussed how she was motivated totake her antiretroviral medications by herphysician:

I started getting all these pains and every-thing and I told [my doctor] and she toldme it was because I wasn’t taking mymedication. She said, “You’ve got to takethat medication.” You know, I really wasn’t taking it until she really sat medown. I told her, “Well, see . . . sometimesI forget.” That’s when she gave me a peptalk on the medication. She told me . . .how important it is for me to take the med-ication on time, when I’m supposed totake it, every day. . . . She started tellingme things like that, and it just clicked. Shesaid, “If it will help any, I’ll give you this.”And she went to her drawer and gave mea pillbox. And she told me how to workwith that. And since she did that, I startedusing the box and it’s been a lot easier . . .from that day on, I started taking my pills,and never stopped.

In this example, it is apparent that the physi-cian’s advice combined with the mechanicaldevice, the medi-set, greatly enhanced Pt21’sadherence to her antiretroviral regimen.

Similarly, Pt03 told an interesting story aboutmaking an appointment with a pharmacist to“go over his antiretroviral regimen,” just to en-sure that he was taking the medicines correctly.He explained:

I made an appointment with the pharma-cist . . . to sit down and talk about . . . whatcan I take with what, or what kind of foodsI should not take. So, it was very good tohave that input . . . [I] felt he would be thebest one to know all about it. So, we satdown, and he looked [at my medicationroutine], and he thought it was real good.

The only thing was, he says the ice creamat night has to go.

This patient had been in the routine of eatinga bowl of ice cream before retiring to bed eachnight; however, his nighttime dose was sup-posed to be taken on an empty stomach. Thepharmacist “caught” this medication mistake,and advised the patient about how to correctit.

Some patients revealed that their adherenceto the antiretroviral regimens had been greatlyfacilitated when they lived in an environmentin which their medications were dispensed tothem by health care professionals. For exam-ple, a couple patients discussed living in a drugtreatment program, and one patient lived in anAIDS hospice in which nurses dispensed allmedications to patients. As Pt11 stated:

I live in C. H. Hospice. It’s not really a hos-pice anymore; it’s for people that haveAIDS. There’s a nurse that comes every-day that does my infusions and a nurse tofill the medi-sets and there’s CNAs [certi-fied nurse assistants’] who actually handout the medicines . . . . It’s good becauseotherwise I would probably never re-member to take my medicines.

Some patients were motivated to adhere totheir antiretroviral regimens after receivinghelp and support from pharmaceutical compa-nies or community-based organizations. For in-stance, Pt08 stated that she learned the “right”way to take her antiretroviral pills from ProjectInform. When she was first given a prescrip-tion for Crixivan, she left the physician’s officewithout having a thorough understandingabout how to take the medication:

S: Basically, I had to learn how to take thepills from Project Inform. . . . I called Pro-ject Inform about every four hours for thefirst four or five days. And, I said, “Am Iallowed to eat because I feel awful and itsays ‘no antihistamines’” or whatever, andthen I said, “Oh, am I allowed to do this?”And then I accidentally doubled my dosebecause I was really nervous and I says,“Am I going to die?” And, you know, so

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I called them up and asked these questionsand they kept calling me back.I: So you called Project Inform. You didn’tcall your doctor about those questions?S: Well, you call your doctor and you getvoicemail. You call Project Inform and youget somebody.

This example shows that patients can be em-powered by non-health-care sources of supportto take their antiretroviral medications. How-ever, it also brings to mind the fact that not allpatients may be empowered enough them-selves to seek out such support. Clearly, dif-ferent patients have different faculties andwhat works best for one may not be best foranother.

DISCUSSION

This paper explored the barriers that HIV-positive patients faced in taking their anti-retroviral medications as prescribed and the fa-cilitators that helped them stay on theirmedication schedules. The findings clearlydemonstrate how challenging it is for HIV-pos-itive patients to adhere to antiretroviral regi-mens. Yet, some of the barriers to adherencethat respondents faced, such as those related toinadequate knowledge about their regimens,can potentially be overcome via more and bet-ter health education regarding antiretroviralregimens. In fact, many patients were facili-tated in their adherence after receiving knowl-edge and support regarding how to take theirpills.

Health care professionals can and shouldplay an important role in educating patientsabout their medication regimens; however, it isimportant to point out that patients also haveresponsibilities here. Patients should discloseto their providers the truth about their med-ication taking behaviors, including if/whenthey experience medication side effects andif/when they do not understand how to take amedication. Providers should establish a “safeenvironment” to allow patients to do this.Providers should also ensure that patients haveadequate information about their regimens, in-cluding referrals to sources of adherence infor-

mation and support such as that provided bycommunity-based agencies, the toll-free linesof pharmaceutical companies, and variouspeer-led groups.

Having a multitude of possible sources of in-formation available to patients is important, asdifferent patients may feel most comfortableusing different sources. For example, some pa-tients may not be empowered enough them-selves to call a community-based HIV/AIDSagency such as Project Inform, or the toll-freenumbers of drug companies to get informationregarding their medications. Some individualsmay not know that such sources of informationexist, while others may be too scared or em-barrassed to call for help; such patients may re-spond best to advice straight from their pri-mary care provider. Other patients may tunein to advice from peers. Hence, the “best”medium for adherence messages/remindersmay be the one that works best for each patientat each distinct point in time.

While health education may be helpful in“troubleshooting” patients’ barriers to an-tiroviral adherence and bolstering their facili-tators of adherence, it is also important to pointout that there is only so much that patients (andhealth care professionals) can realistically beexpected to do. Some of the barriers that pa-tients face, such as the complexity of the regi-mens, are inherent in the antiretroviral med-ications themselves. It may make more sense toconsider changing (simplifying) the medica-tions rather than asking patients to continuechanging themselves. Many pharmaceuticalmanufacturing companies recognize the needfor (and potential profitability of) simpler anti-retroviral medications and are in the process ofcreating new and/or modified medications tofit this need. For example, the United StatesFood and Drug Administration recently ap-proved the drug Combivir, manufactured byGlaxo Wellcome.20 Combivir is one pill thatcombines the previously separate medications,AZT and 3TC.

Another pharmaceutical company, Trimeris,Inc., is currently developing a new type of an-tiretroviral medication, a fusion inhibitor,called T-20. The company claims that this drugcan prevent HIV from attacking and infectinghealthy cells. In a clinical trial of 78 HIV-posi-

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tive patients, T-20 reduced patients’ viral loadsby over 90% without any nausea, fever, or rashside effects.21 This new medication may helpsome patients overcome barriers to adherencerelating to unpleasant antiretroviral side ef-fects.

Most people would agree that the develop-ment of simpler, but still efficacious, anti-retroviral medications is commendable. It isimportant to highlight, though, that suchmedications still must be taken as directed. Infact, the dangers of nonadherence may begreater for patients who take the simplifiedmedications as compared with the more com-plex ones. According to Project Inform, “theblood level of a drug used only twice a daymay fall below the minimum needed to sus-tain full suppression of HIV. . . . The switchto fewer doses makes it even more critical thatpeople strictly adhere to the schedule.”22 Thissuggests that while simpler antiretroviralmedications would likely ease patients’ bur-dens, it would be foolhardy to pursue suchchanges at the expense of ensuring that pa-tients fully understand how to take their med-ications, and are supported as much as pos-sible in their efforts to comply.

Antiretroviral regimens pose many chal-lenges for HIV-positive patients, yet many pa-tients are able to manage some degree of ad-herence by incorporating various facilitatorsinto their routines. While the facilitators foundhere may not work for all patients, it may beuseful for patients to at least learn about whathelps other individuals living with the diseaseto adhere. Peer education and empowermentmay be extremely useful in this regard. Addi-tionally, it may be useful for other concretechanges to be made, such as distributing amedi-set and alarm clock to each HIV/AIDSpatient with his/her first prescription of anti-retroviral medication. Any such “trick” that im-proves adherence should be pursued as vigi-lant adherence to antiretroviral medicationsprovides patients with the best chances in thewar against AIDS.

In conclusion, it is important to note thatwhile the barriers and facilitators found hereprovide a rich understanding of the complexi-ties of adherence for some HIV-positive pa-tients, these findings should be considered pre-

liminary, not exhaustive. The results are basedon a small sample of patients drawn from a pre-mier HIV/AIDS care program in San Francisco.It is quite possible that other types of patients(e.g., homeless individuals, individuals wholive in rural areas, individuals who are activelyusing street drugs) face different barriers andfacilitators. Future studies should explore thispossibility.

ACKNOWLEDGMENT

This research was supported by funds fromthe Universitywide AIDS Research Program,University of California, grant No. D97-SF-001.

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Address reprint requests to:Kathleen Johnston Roberts, Ph.D.

Postdoctoral Fellow and Assistant AdjunctProfessor

UCLA Department of Sociology264 Haines Hall

Box 951551Los Angeles, CA 90095-1551

E-mail: kjrobert@ucla.edu

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