Acceptance-based behavior therapy to promote HIV medication adherence

Ethan Moitraa*, James D. Herbertb and Evan M. Formanb

aDepartment of Psychiatry and Human Behavior, Alpert Medical School of Brown University, Providence, RI, USA;bDepartment of Psychology, Drexel University, Philadelphia, PA, USA

(Received 19 October 2010; final version received 6 April 2011)

A significant number of adults with HIV in the USA do not maintain adherence to highly active antiretroviraltherapy (HAART) at adequate levels. Although traditional cognitive behavioral interventions have shownpromise in promoting HAART adherence, acceptance-based behavior therapy (ABBT) may be particularly usefulin this population. ABBT has the potential to overcome common avoidance-based barriers associated withpoor adherence, including denial of various illness-related factors and avoidance of stigmatization. We describethe rationale for promoting psychological and behavioral acceptance in HIV-positive populations; outline anABBT to promote HAART adherence targeting primary care patients from urban, minority, low socioeconomicbackgrounds; and report preliminary qualitative observations of treatment feasibility and acceptability.

Keywords: HAART; adherence; primary care; behavior therapy; acceptance and commitment therapy

Introduction

More than one million people in the United Statesare estimated to have HIV/AIDS infection, and up to27% of those infected are unaware of their diagnosis(CDC, 2006). Most people require medications foreffective HIV management, consisting of highly activeantiretroviral therapy (HAART), which has demon-strated significant success in inhibiting HIV viralreplication. HAART’s benefits include reductions inmorbidity, mortality, and overall healthcare costsfor HIV-positive persons (Crum et al., 2006; Mocroftet al., 2003). However, adherence to HAART regi-mens is of paramount importance for treatment tobe effective. Although there is some debate (e.g.,Bansberg, 2006), it has been estimated that adherence(i.e., missing doses, late doses) to antiretroviraltherapy must approach 95% for optimal effectiveness(Paterson et al., 2000), a very high level for anymedical treatment.

Adherence in the USA to HAART remainsrelatively low; most researchers estimate medianadherence to be 60!70% (Bartlett, 2002). Althoughthere is no single behavioral intervention that hasemerged as the gold standard for improving HAARTadherence in this population, most studies haveemployed a treatment package that includes severalcore elements of traditional cognitive behavior ther-apy (CBT), including cognitive restructuring, motiva-tional interviewing, and behavioral self-monitoringvia pill diaries. Meta-analytic reviews of the efficacy oftraditional CBT interventions for HAART adherenceshow small to medium effect sizes (Amico, Harman,

& Johnson, 2006; Simoni, Pearson, Pantalone, Marks,& Crepaz, 2006), suggesting significant room forimprovement. We review below common psychologi-cal HAART adherence barriers and discuss howthey provide a road map for new directions inbehaviorally based HAART adherence interventions.Undoubtedly, systemic variables such as access tomedications and dosing complexity influence adher-ence (see Haynes, 1974 for a review). Here, we focus onpsychological factors that may also affect adherence.

Self-care motivation

The cognitive appraisal model of stress and coping(Lazarus & Folkman, 1984) has received a great dealof attention from researchers in explaining variousaspects of chronic illness. The model, according toLazarus and Folkman (1984), assumes that whenconfronted with a particular stressor, such as anHIV diagnosis, people will respond in various waysbased on their motivational beliefs.

Beliefs about control are particularly relevantto HIV self-care. Because of HIV’s notoriety, mostpatients have preconceived notions about how muchcontrol they will have over the disease process, itsprognosis, and treatment options. Taylor, Kemeny,Reed, Bower and Gruenewald (2000) demonstr-ated that positive beliefs about one’s self-efficacy inresponse to HIV diagnosis were associated withimproved mental health and improved disease self-management. Malcolm, Ng, Rosen and Stone (2003)examined the role of beliefs in individuals with

*Corresponding author. Email: ethan_moitra@brown.edu

AIDS Care2011, 1!8, iFirst

ISSN 0954-0121 print/ISSN 1360-0451 online# 2011 Taylor & FrancisDOI: 10.1080/09540121.2011.579945http://www.informaworld.com

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excellent HAART adherence records. A predominanttheme was that successful adherence was motivatedby the belief that the individual had control overhis/her health.

Another important motivator may be the desire topractice a value-driven life, and the degree of clarityone has about one’s personal values and associatedgoals. Many individuals lack clarity with respect totheir values, as well as the link between those valuesand specific goals that emanate from them. Values canbe thought of as broad life directions that point topatterns of behavior that will contact positive envir-onmental consequences (Hayes, Strosahl, & Wilson,1999). Values are distinct from goals in that the formercan never be fully realized, whereas the latter can beaccomplished. Ideally, one is clear with respect to his/her freely chosen values, has derived goals consistentwith those values, and has in turn aligned his/herbehavior to be consistent with those goals. One’svalues may affect appraisals of negative situationssuch that when something highly valued is threatened,beneficial action is motivated. In this population, afearful response to HIV infection and its long-termimplications could provide the impetus to strictlyfollow medication regimens. However, we hypothesizethat value-inconsistent behavior is not uncommon inthe HIV population. Specifically, many individualswith HIV may behave in a way inconsistent with theircore values in order to avoid the psychological stressof accepting their HIV diagnosis and its implications(e.g., strict adherence to medication).

Avoidance-based coping

Health promoting behavior may be undermined byavoidance-based coping. An important individualfactor to consider is the meaning behind taking HIVmedications: acceptance of the diagnosis and itsrelated stresses, for example, stigmatization (Madru,2003; Schuster et al., 2005). Such acceptance requiresa willingness to acknowledge the cause of infection,the implications of infection on one’s future, andopenness to altering behaviors to fit the needs ofmaintaining healthy living. Acceptance of infection isnot automatic and is undermined by denial, or theneed to repress the realities of living with HIV.Therefore, the intentional control of distressing cogni-tions and emotions related to HIV may be a signifi-cant barrier in effective medication adherence. Forinstance, suppression of fear associated with HIVmight lead to an unrealistic perception of one’s health,causing the person to be lackadaisical about adheringto a medication regimen.

Wegner and Zanakos (1994) found that suppres-sion of emotional thoughts magnified the emotio-

nality and accompanying physiological reaction ofthe suppressed thoughts. Furthermore, attempts atthought suppression often exacerbate symptoms,producing a ‘‘rebound effect’’ in which thoughtfrequency increases (Clark, Ball, & Pape, 1991; Zeitlin,Netten, & Hodder, 1995). Thus, individuals whoattempt to ignore or suppress the stresses of livingwith HIV are at risk for feeling worse about theirillness, having a worsened overall psychological state,and poor HAART adherence.

Avoidance-based coping is associated with loweradherence (Amir, 1997) and higher levels of distress(Holahan & Moos, 1983; Thompson, Gil, Abrams, &Phillips, 1992) in the HIV positive population. Weaveret al. (2005) assessed the degree to which coping stylewas associated with adherence to HAART among asample of 322 HIV-positive adults. Results revealedthat a higher degree of avoidance-oriented coping wasassociated with lower levels of adherence, whereasapproach-oriented coping was not associated withadherence. Jones et al. (2003) found that avoidancebehaviors such as behavioral disengagement andself-blame were negatively correlated with adherenceto HAART among a sample of 174 women. Johnsonet al. (2005) examined the effects of coping style onadherence, and how this relationship may be mediatedby the experience of HAART-associated side effects.In a sample of 2765 persons with HIV, those whoreported severe side effects were significantly less likelyto achieve at least 90% adherence. This relationship isparticularly important to understand, as most personstreated with HAART will experience at least minimalside effects, which may or may not resolve. Clearly,avoidance-based coping puts individuals with poorside effect tolerance at risk for reduced adherence, asthe only way to fully avoid side effects is to not takethe medication. Such attempts to regulate privateexperiences (e.g., bodily sensations, feelings, andthoughts) have been termed ‘‘experiential avoidance’’(Hayes, Strosahl, & Wilson, 1999).

Rationale for psychological and behavioral acceptance

In summary, a variety of psychological factors thatlikely influence adherence to HAART regimens war-rant attention in behavioral interventions. Extantliterature indicates that avoidant coping styles havean adverse effect on adherence to HAART. Wesuggest that a lack of acceptance of the diagnosisand its implications, in addition to ongoing fear ofstigma and associated community reactions, limitthe openness of many HIV/AIDS patients abouttheir disease and its management. Due to fear ofstigmatization and judgment, many individuals avoiddiscussing their diagnosis and suppress thoughts

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associated with living with HIV. In fact, thoughtsuppression might serve to exacerbate symptoms andlead to poorer overall mental and physical health.These factors support the rationale for an acceptance-based behavior therapy (ABBT) intervention designedto foster psychological acceptance and mindfulness(Herbert, Forman, & England, 2009). Such technol-ogy contrasts with existing interventions, most ofwhich have focused primarily on changing or evensuppressing thoughts regarding the disease and itsimplications.

Psychological acceptance refers to the ability toaccept distressing subjective experiences (thoughts,feelings, sensations, memories, etc.) without effortsto avoid, escape, or otherwise change the content ofsuch experiences, in the service of personally relevantvalued goals. Successful adherence to HIV medica-tions is likely dependent on such psychological accep-tance, as well as acceptance of the diagnosis itself,acceptance of various stressors associated with treat-ment, and acceptance of the stigma associated withHIV. Therefore, interventions targeting avoidance !both psychological avoidance of distressing experi-ences and behavioral avoidance of health-promotingbehaviors ! are warranted in this population.

The present pilot investigation involved the devel-opment of a brief ABBT intervention rooted inacceptance and commitment therapy (ACT; Hayes,Strosahl, & Wilson, 1999), which has emerged as themost widely practiced and researched of the newacceptance-based CBT treatments. ACT encouragespatients to ‘‘defuse’’ from distressing psychologicalexperiences and to adopt an accepting stance towardone’s experience as it unfolds in real time, whilepursuing behavioral goals derived from personal lifevalues. This contrasts with traditional models of CBT,which are predicated on the assumption that thera-peutic effects are mediated by changes in cognitions,including thoughts, beliefs, and schemas, and thecorresponding emphasis on cognitive change efforts(Forman&Herbert, 2009). ACT also stresses exercisesaimed at identifying and crystallizing key personalvalues, translating these values into specific behavioralgoals, and designing and implementing behaviorchange strategies to realize those goals.

There is no standard approach to ABBT,as interventions vary in length from as little as asingle session to open-ended formats of indeterminateduration, and are conducted in individual and groupformats and across a variety of settings. Outcomeresearch has demonstrated the efficacy of ABBT inbehavioral medicine applications, including chronicpain (McCracken & Eccleston, 2006), cigarette smok-ing cessation (Gifford et al., 2004; Hernandez-Lopez,Luciano, Bricker, Roales-Nieto, &Montesinos, 2009),

Type 2 diabetes management (Gregg, Callaghan,Hayes, & Glenn-Lawson, 2007), substance abuse(Hayes et al., 2004), and weight loss (Forman, Butryn,Hoffman, & Herbert, 2009; see Hayes, Luoma, Bond,Masuda, & Lillis, 2006, for a review). Furthermore,experiential avoidance has been shown to be amediator in several studies involving a range ofpsychopathology (Levin, Yadavaia, Hildebrandt, &Hayes, 2007) and in chronically ill populations (e.g.,Gregg et al., 2007). However, ABBT has not yet beenapplied to promoting HAART adherence among anHIV-positive population.

To the extent that experiential avoidance is asso-ciated with medication adherence among those withHIV disease, an acceptance-based intervention mayrepresent a particularly good match for this popula-tion. The primary goal of the current study was toadapt an ABBT program for HAART adherenceand to examine the feasibility and acceptability ofthis new, acceptance-based behavioral interventionto promote HAART adherence in a racially diverse,low-income sample.

Method and results

Participants

Participants were recruited from a large primary careclinic for uninsured individuals withHIV disease livingin the Philadelphia, Pennsylvania community. Werecruited patients who were having difficulties adher-ing to their treatment regimens and were not treatmentnaive (i.e., they had not initiatedmedication use withinthe past month). Referrals came from primary careproviders, case managers, or self-referral from flyersposted in the clinic. Patients with severe mental illness(i.e., active psychosis, schizophrenia), mental retarda-tion, AIDS dementia, and pregnant women were noteligible for participation. Active substance abuse wasnot an exclusion criterion and was assessed via patientcharts and documented when present.

Demographic variables

Sixteen participants were recruited. Average age ofparticipants was 52 years (SD"5.0), and 87.5%were male. A majority of the sample was African-American (87.5%), single (37.5%) or separated/divorced (37.5%), and disabled (62.5%). All partici-pants’ income was below $15,000 per year. Theeducational attainment of the sample was mixed,with 37.5% having completed 11 years of schoolingor less, 25.0% having completed high school, and37.5% having completed at least some college. Twoparticipants were homeless.

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HIV variables

Participants had been diagnosed with HIV for anaverage of 12.1 years (SD"5.7); 12 of the partici-pants had been diagnosed with AIDS, meaning theirCD4 count had fallen below 200 at some point.Participants acquired HIV through sex with menonly (37.5%), via sex with men and women (25.0%),and via IV drug use (37.5%).

The most commonly reported barriers to medica-tion adherence among all participants were being toobusy (50.0%), side effects and other bad events relatedto the pills (37.5%), and stigmatization fears (25.0%).Self-report measures were used to assess demographicinformation. With patients’ written informed consent,medical charts were also reviewed to assess CD4 levelsand viral load count. These biological measureswere taken within 10 days of initiation of treatment(see Table 1 for summary of baseline characteristics).In some cases, previous CD4 and viral load datawere available, but we chose to gather most recentCD4 levels and viral load counts because previousbiomarker measurements were potentially outdated(e.g., !2 years old) and likely confounded by pasttreatment that might have been ongoing at the timeof measurement.

Although this study focused on feasibility andacceptability of the intervention, we did examine changesin CD4 and viral load from baseline to end of treatment.Results showed a promising trend for both measures(CD4 (cell/mm3): baseline mean"372.3 (SD"167.4),end-of-intervention mean"487.3 (SD"225.3); viralload (c/ml): baseline mean"148.8 (SD"130.1), end-of-intervention mean"16.0 (SD"24.8)).

Procedures

Treatment was offered free of charge. ABBT wasimplemented by a doctoral candidate in clinicalpsychology who was trained and supervised by alicensed clinical psychologist with recognized expertisein ACT. Each ABBT session was free-standing andparticipants could begin treatment at any sessionbecause the sessions were offered in successive weeks.An ideal course was deemed to consist of attendingfive sessions and was considered minimally completevia attendance of three sessions (i.e., treatment com-pleters were defined as those who attended at leastthree sessions). Ten participants attended at least threesessions (62.5%) and four individuals attended four ormore sessions (25%).

Treatment

Acceptance-based behavior therapy consisted of 3!5weekly 60-minute sessions conducted in a groupformat, with groups consisting of 3!5 patients. Eachsession served as a free-standing intervention in whichthe overall acceptance-based principles were discussedand implemented. These core principles includeddeveloping ‘‘creative hopelessness’’ to highlight theproblems associated with direct cognitive and emo-tional control strategies, fostering a willingness toaccept HIV-related distress, and directing patientstoward clarifying and focusing on life values. Treat-ment included experiential group exercises, role play-ing exercises, and homework (see Table 2 for furtherdescription of treatment elements).

Reactions to intervention

Six participants reported the groups were very helpful(37.5%), six reported the groups to be moderately

Table 1. Demographic and baseline variables for ABBT(n"16).

Variables M SD

Age 52.5 5.0HIV variablesa

Years since HIV diagnosis 12.1 5.7CD4 (cell/mm3) 372.2 167.4Viral load (c/ml) 148.8 130.1Prescribed doses per two weeks 38.5 20.1

% NGenderFemale 12.5 2Male 87.5 14

Race/ethnicityAfrican-American 87.5 14Caucasian 12.5 2

Marital statusSingle 37.5 6Live with partner/married 25.0 4Separated/divorced 37.5 6

Education511th Grade 37.5 6High school 25.0 4Some college 37.5 64 Year college 0 0

EmploymentPart-time 37.5 6Disabled 62.5 10

Note: M, mean; SD, standard deviation.aHIV variables are based on participant self-report. Data werecorroborated via medical chart review.

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helpful (37.5%), and four reported the groups tobe minimally helpful (25%). Qualitative observationssuggested that acceptance-based intervention strate-gies were well suited to this population. One keypoint made in each session was that attempts toavoid the realities of living with HIV are futile,leading to worsened health. Many participants cor-roborated this as they noted that their initial reactionto finding out they were HIV positive was to with-draw from social supports and medical care. Forsome, they sought treatment only when their healthsignificantly worsened and they could no longer livewithout medication. Indeed, acceptance was not anew concept to participants as they recognized thattaking an initial step toward HIV care required somelevel of acceptance that their HIV status would notchange.

Considering none of the participants were treat-ment naive, the crux of their HIV self-care was notnecessarily admitting they needed HAART; instead, itdepended on their commitment to taking the medica-

tion regardless of its side effects and seeking to livewith HIV, knowing the stigma and shame it couldprovoke. Participants enjoyed commiserating aboutwhich medications worked, which ones were notor-iously harsh on the body, and which ones tastedbad. Relationships were the most important factorthey discussed when troubleshooting life with HIV.These discussions focused on familial relationships(e.g., sharing one’s HIV status with parents) andromantic relationships. New romantic relationships,in which one had not yet shared his/her HIV status,were particularly anxiety-provoking for some partici-pants. This connected well with the intervention’semphasis on living a value-driven life. Specifically, wediscussed why people naturally seek intimate connec-tions with others. We noted the importance ofdeveloping trust, confidence, and support from ro-mantic partners and how not admitting one’s HIVstatus would limit how close we can be to others.A frequent theme focused around the question:Do you want to avoid divulging your HIV status

Table 2. Acceptance-based behavior therapy exercises included in each session.

Exercises

Creative hopelessness A core element in ABBT in which people are guided to recognize their control strategies has nothelped their psychological and physical health, and in many cases has made them worse. In thispopulation, it is theorized that inconsistent medication adherence is related to an avoidance ofthoughts and discussions of HIV-positive status, an unwillingness to accept the HIV diagnosis, andunhealthy behaviors including drug use.

Cognitive defusion Defined as the ability to distance oneself from internal stimuli. Essentially, this means viewing‘‘thoughts as thoughts,’’ products of the mind that are not necessarily true, and therefore, should notdictate behavior. HIV-positive patients are likely to be ‘‘fused’’ to fears regarding their disease, thestigma that it entails, and future concerns.

Psychologicalacceptance

Embracing the full range of one’s ongoing experience, including distressing thoughts, feelings,sensations, memories, etc., fully and without defense or avoidance. Psychological acceptance reliesheavily on the development of willingness. The goal of willingness is not to feel better; instead,patients focus on experiencing all feelings, whether good or bad. Patients with low-medicationadherence rates can be expected to be low in acceptance/willingness because they likely avoid thepsychological distress associated with living with HIV. A willing, accepting perspective directlyconfronts denial. This avoidance may be experiential (i.e., they refuse to acknowledge their diseaseand its responsibilities) and/or behavioral (i.e., they refuse to attend medical appointments, take theirmedications, etc., because it would mean admitting illness).

Mindfulness Used in this treatment to improve patients’ abilities to be aware and accepting of present-momentexperiences. Bringing attention to the many moments in life, fully and non-judgmentally, facilitatespsychological acceptance. Mindfulness connects to medication adherence because healthy self-management behaviors depend on non-judgmental awareness of internal and external experiences.

Committed action Incorporates the techniques listed above into a concrete behavioral plan. Each plan wasindividualized according to the patients’ specific needs.

Values homework Provide an impetus for assuming an accepting perspective toward life. Specifically, if a patient isaccepting of his/her disease management responsibilities, he/she is more likely able to focus ondeveloping a meaningful life, rather than simply avoiding taking medication. Values are chosen lifedirections that guide our behaviors. Due to their illness, many HIV-positive patients can be expectedto be ‘‘stuck’’ in their lives, having lost sight of their values and what they want to experience in life.By accepting their disease and its responsibilities, patients can be expected to gain freedom to focuson other aspects of their lives in such areas as family, career, education, spirituality, etc.

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(due to fear of rejection, etc.), knowing that this maylimit how close you can be to someone? Or, are youwilling to admit you are HIV positive, despite theobvious risks in doing so, because it will afford theopportunity to be closer to someone and allow you tocare for your disease openly?

One concern we had in developing this treatmentwas whether or not it would be too abstract for arelatively low-functioning cohort. Acceptance-basedinterventions rely heavily on metaphors and experi-ential exercises, making them prone to abstractionand theoretical discussions. However, in our experi-ence, this ABBT protocol was easily disseminable topatients. Although we used metaphors and indirectlanguage at times to discuss problems, we connectedthese to concrete points about HIV and HAART.Patients appeared to experience these discussions asintellectually stimulating without being overly confus-ing. In many respects, speaking about HIV in abstractterms felt appropriate because it was a new perspectivefor most patients. Many reported past experiencein which healthcare providers ‘‘finger-wagged’’ toconvince them to take their medications. They notedtheir perception of such approaches as overly blunt,insensitive, and even patronizing, and several con-trasted it with the less judgmental approach of ABBT.

Discussion

The current study was a pilot trial to develop andinvestigate the feasibility of an acceptance-basedintervention to promote HIV medication adherencedelivered in a group format, co-located in a primarycare clinic for HIV positive, uninsured individualsliving in a large urban area.

As noted earlier, the ABBT intervention wasdesigned to be highly experiential, which encourageda high level of treatment engagement. This made formany enjoyable, productive, and engaging sessions inwhich we discussed the power (or lack thereof) ofsimple words like ‘‘AIDS’’ and how our mindsnaturally relish in the opportunity to struggle withthoughts and feelings. This treatment had a self-reported effect on some participants because it wascounterintuitive, challenging their conventional wayof thinking about their disease and its relationship totheir larger life. It allowed participants to thinkcritically about their HIV experience, to acknowledgetheir concerns without dismissal or minimization, andto develop pragmatic solutions to everyday struggles.

Limitations

The small sample size limited our ability to examinetreatment effects, and the focus of the project wastreatment development rather than evaluation ofefficacy. However, results of HIV biomarker measure-ments at baseline compared to end-of-treatmentshowed a promising trend. We chose a group formatfor the intervention to maximize efficient delivery ofthe intervention and because we expected participantsto benefit from group-based discussions of diseasemanagement. However, this design could have im-peded recruitment or undermined treatment accept-ability for some potential participants.

Implications and future directions

HIV continues to be a significant health issue formillions of people worldwide. In the United States,living with HIV is possible because of the adventand availability of HAART. However, the successof HAART is dependent on adherence; if patientsdo not take their medication as prescribed at least90% of the time, the medications do not work welland can in fact lead to negative health consequences.Consequently, considerable behavioral health re-search has targeted the promotion of medicationadherence. Some data suggest that behavioral andcognitive approaches do lead to increased adherence,but psychological acceptance has not been addressedin this literature.

As such, the present project sought to examine thefeasibility and acceptability of an acceptance-basedintervention to promote HIV medication adherence,co-located in a primary care clinic. Qualitative ob-servations suggested that patients responded well tothe intervention and it appeared to be a promisingnew direction in behavioral treatment to promoteHAART adherence. Further research is now neededto examine the intervention’s efficacy.

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