AIDS Behav (2006) 10:483–493DOI 10.1007/s10461-006-9106-6

ORIGINAL PAPER

The Role of HIV Serostatus Disclosure in AntiretroviralMedication AdherenceMichael J. Stirratt · Robert H. Remien · Anna Smith ·Olivia Q. Copeland · Curtis Dolezal · Daniel Krieger ·the SMART Couples Study Team

Published online: 23 May 2006C© Springer Science+Business Media, Inc. 2006

Abstract This study examined the relationship betweenHIV serostatus disclosure and adherence to antiretrovi-ral therapy (ART). The study was conducted with 215HIV-seropositive patients who demonstrated poor adher-ence (<80%) and who were in serodiscordant relationships.Participants completed self-report measures regarding HIVserostatus disclosure and reasons for missing ART doses,as well as electronic monitoring of ART adherence (MEMScaps). Overall, 19% of the sample reported missing medi-cation doses in the last two months due to concerns regard-ing serostatus disclosure. Participants who reported greaterserostatus disclosure to others demonstrated higher rates ofadherence, and this relationship remained after controllingfor other explanatory variables. The relationship betweendisclosure and adherence was not mediated by practical sup-port for adherence from others. Interventions to improveART adherence should address the role of serostatus disclo-sure by providing patients with skills to maintain adherencein contexts of non-disclosure and to make informed choicesregarding selective disclosure.

Keywords HIV . Antiretroviral . Adherence . Disclosure .

Social support.

R. H. Remien · A. Smith · O. Q. Copeland · C. Dolezal ·D. KriegerHIV Center for Clinical and Behavioral Studies, New York StatePsychiatric Institute and Columbia University New York,New York

M. J. Stirratt (�)HIV Center for Clinical and Behavioral Studies, New York StatePsychiatric Institute and Columbia University,Unit 15, 1051 Riverside Drive, New York, New York, 10032e-mail: mjs2114@columbia.edu

Introduction

HIV seropositive (HIV+) individuals must maintain high ad-herence to antiretroviral therapy (ART) in order to maximizethe clinical benefits of treatment (Bangsberg et al., 2000;2001; Chesney, Ickovics, Hecht, Sikipa, & Rabkin, 1999;Paterson et al., 2000). Although numerous factors contributeto the success or failure of ART, the maintenance of consis-tent therapeutic coverage through high medication adherenceremains paramount. Studies have indicated that adherence isthe strongest determinant of patient survival (Wood et al.,2003) and improvements in CD4+ cell count over time(Wood et al., 2004).

One of several key factors in fostering and maintain-ing ART adherence is social support. In a systematic re-view of the literature, Ammassari et al. (2002) identi-fied social support as one of five factors consistently re-lated to ART adherence. Greater social support has beenassociated with higher levels of HIV/AIDS medical careadherence (Catz, Kelly, Bogart, Benotsch, & McAiliffe,2000; Gonzalez et al., 2004; Gordillo, del Amo, Soriano,& Gonzalez-Lahoz, 1999; Malcolm, Ng, Rosen, & Stone,2003; Morse et al., 1991; Murri et al., 2000), as well as betterpsychological adjustment and slower progression to AIDS(Blaney et al., 2004; Chesney, Chambers, Taylor, & Johnson,2003; Clingerman, 2004; Heckman et al., 2004; Kalichman,DiMarco, Austin, Luke, & DiFonzo, 2003; Kelly, Murphy,Bahr, & Kalichman, 1993; Leserman et al., 1999; Prado et al.,2004; Safren, Radomsky, Otto, & Salomon, 2002; Swindellset al., 1999). The wider literature regarding social supportincludes debate over the importance of its many forms,the methodological tools to assess them, and the pathwaysthrough which they may affect health outcomes and adher-ence (Wills & Fegan, 2001). However, a recent meta-analysisof studies across multiple medical conditions determined that

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adherence was more strongly and consistently associatedwith functional support (i.e., practical/emotional support)than structural support (i.e., living arrangement/relationshipstatus; DiMatteo, 2004). Within the domain of functionalsupport, the study found that the provision of practical sup-port had a significantly greater influence on adherence thanemotional support.

The connection between social support and ART adher-ence highlights a related issue – disclosure of HIV serosta-tus. In order to receive direct practical and emotional sup-port for living with HIV/AIDS, one must disclose one’sHIV+ status to others. Serostatus disclosure therefore repre-sents a precondition for obtaining functional social supportfor ART adherence. Studies have determined that greaterserostatus disclosure predicts higher social support amongsamples of HIV+ adult men and women (Kalichman et al.,2003), Latino gay and bisexual men (Zea, Reisen, Poppen,Bianchi, & Echeverry, 2005), mothers (Murphy, Steers, &Dello Stritto, 2001), and adolescents (D’Angelo, Abdalian,Sarr, Hoffman, & Belzer, 2001). This association likely re-flects the ability of disclosure to catalyze support, as well asdecisions to disclose to those perceived as supportive.

Although HIV serostatus disclosure represents an essen-tial step toward obtaining social support for ART adherence,it can conversely invite stigma and discrimination. Prejudiceagainst people living with HIV/AIDS remains pervasive inthe U.S. (Clark, Lindner, Armistead, & Austin, 2003; Herek,Capitanio, & Widaman, 2002; Hoff, McKusick, Hillard, &Coates, 1992; Zierler et al., 2000). The anticipation or ex-perience of HIV-related stigmatization and discriminationleads many HIV+ individuals to perceive the issue of HIVserostatus disclosure as a significant and recurrent dilemmain their lives (Black & Miles, 2002; Holt et al., 1998; Stir-ratt, 2005). Research indicates that many HIV+ individualstherefore conduct disclosure in a selective manner that seeksto balance conflicting concerns regarding the achievementof positive outcomes (e.g., accessing support, building trust)and the avoidance of negative consequences (e.g., experi-ence of discrimination, loss of privacy; Black and Miles,2002; Clark, Lindner, Armistead, & Austin, 2003; Demas,Schoenbaum, Wills, Doll, & Klein, 1995; Holt et al., 1998;Serovich, 2001). The decision to disclose one’s HIV+ statusto others has therefore been described in terms of “competingconsequences” (Serovich, 2001) or as a “calculus of disclo-sure” (Black & Miles, 2002).

To date, HIV serostatus disclosure and ART adherencehave largely been examined separately within the researchliterature (Klitzman et al., 2004). The few studies thathave discussed the relationship between serostatus disclosureand adherence to ART have primarily employed qualitativemethodologies (Chesney & Smith, 1999; Demas et al., 1995;Golin, Isasi, Bontempi, & Eng, 2002; Klitzman et al., 2004;

Pugatch, Bennett, & Patterson, 2002; Siegel, Schrimshaw,& Raveis, 2000). These studies suggest that HIV serostatusdisclosure holds multiple associations with medication ad-herence. First, some patients have reported missing doses ofantiretroviral medications due to concerns that this act wouldsignify their HIV + status to others and subsequently resultin stigmatization (Catz et al., 2000; Chesney et al., 2000;Chesney & Smith, 1999; Demas et al., 1995; Gibb et al.,2003; Golin et al., 2002; Klitzman et al., 2004; Siegel et al.,2000). Second, non-disclosure may protect HIV+ individu-als from stigmatization, but it can also deny access to socialsupport for adherence, which may undermine adherence be-havior (Chesney & Smith, 1999). Finally, the therapeuticand iatrogenic effects of ART can intersect with concernsabout serostatus disclosure in complex ways. For example,the side effect of lipodystrophy may be associated with feel-ings of being visually recognizable as HIV+ (Ouette et al.,2002) and subsequent non-adherence (Duran et al., 2001).At the same time, some HIV + individuals have reportedmaintaining adherence to ART because the therapeutic im-pact of the medicine helps them to “pass” as someone whois HIV-seronegative (Klitzman et al., 2004).

The published research literature contains very few quan-titative empirical studies that have tested the relationshipbetween HIV serostatus disclosure and ART adherence.Mellins, Kang, Cheng-Shiun, Havens, & Chesney (2003)conducted a longitudinal study examining predictors of long-term ART adherence and medical appointment attendancein a sample of HIV+ mothers over an 18-month period.Serostatus disclosure was not significantly associated withART adherence, but a lack of disclosure to family mem-bers at baseline predicted missed medical appointments atfollow-up. In a subsequent cross-sectional study with HIV+children (Mellins, Brackis-Cott, Dolezal, & Abrams, 2004),the authors found that less serostatus disclosure to otherswas one of several social factors significantly related to ARTnon-adherence.

In the present study, we examined HIV serostatus dis-closure and ART adherence through an analysis of baselinedata from a randomized clinical trial of a brief adherenceintervention. The intervention, which sought to improve ad-herence by fostering support from a relationship partner,was found effective in a sample of HIV+ patients whohad previously demonstrated poor adherence and who werein HIV serodiscordant relationships (Remien et al., 2005).Since the intervention was grounded in social action theory(SAT; Ewart 1991), this framework informed the analysesfor the present study. SAT explains health behavior main-tenance and change as the product of social and contextualinfluences (e.g., disclosure context, receipt of social support,and regimen complexity), individual self-regulatory pro-cesses (e.g., motivation, self-efficacy, outcome expectancies,

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problem solving, and knowledge), internal affective states(e.g., depression, positive affect), and other personal and bi-ological factors (e.g. demographics and side effects). Wetherefore incorporated variables representing these con-structs into our analysis.

The focus of this study was to examine associations be-tween HIV serostatus disclosure and ART adherence. Wefirst sought to determine the extent to which patients re-ported missed doses due to concerns regarding serostatusdisclosure, and to compare those who reported such reasonswith those who did not. On the basis of the existing litera-ture, we also hypothesized that greater disclosure would beassociated with higher adherence, and that the relationshipbetween disclosure and adherence would be mediated by theprovision of practical social support.

Method

Participants and procedures

The study was conducted between August, 2000 and Jan-uary, 2004 at two HIV/AIDS outpatient treatment clinicsin New York City Study (see Remien et al., 2005, for afull report of study procedures). The eligibility criteria re-quired participants to be HIV+ adult patients in primarycare who demonstrated poor adherence (defined as tak-ing less than 80% of prescribed doses at regular intervalsover a two-week assessment period) and who reported be-ing in an HIV serodiscordant relationship for six months ormore. Participants were excluded if they or their relationshippartner evidenced severe cognitive dysfunction or psychoticdisorders.

Participant recruitment was conducted by posting flyersregarding the study within a set of local outpatient HIV treat-ment clinics, private medical practices, and HIV/AIDS ser-vice organizations. The flyers directed interested individualsto contact the study by telephone to complete a brief pre-screening questionnaire. Eligible callers were then sched-uled to attend an in-person screening appointment with theirrelationship partner, at which the HIV+ partners were pro-vided an electronic monitoring cap (MEMS cap) to use withone of their medication bottles. An interviewer also admin-istered a social networks questionnaire to both members ofthe couple at this appointment. Couples returned again aftertwo-weeks of MEMS cap use, and those couples in which theHIV+ partner who demonstrated less than 80% adherencewere enrolled in the trial. All participants then completed abaseline Audio Computer-Assisted Self-Interview (ACASI)to assess potential mediators and moderators of medicationadherence. The assessment took approximately two hoursto complete. Participants were paid $20 for the screeningappointment and $25 for the baseline assessment.

Measures

ART adherence

To assess ART adherence, a MEMS cap (AARDEX Cor-poration, Zurich, Switzerland) was affixed to a participant’smedication bottle for a two-week interval. The cap containeda microchip that recorded the date and time when the par-ticipant opened the bottle to take a dose of medication. Ad-herence was defined as the percentage of prescribed ARTdoses taken within specified time windows (e.g., for medi-cations taken twice a day, dosage intervals were 12 hr apart,with ± 2 hr windows around each target dosage time). Thismeasure served as both a screening criterion and the primarystudy outcome (Remien et al., 2005).

HIV serostatus disclosure

The degree to which the HIV+ partner had disclosed his orher serostatus to others was assessed through a Social Net-works Questionnaire. This instrument was a modified ver-sion of a social networks questionnaire previously used withmethadone patients (El-Bassel, Cooper, Chen, & Schilling,1998) and originally modeled after network questions on theGeneral Social Survey (Cohen & Sokolovsky, 1978). Eachparticipant reported up to 15 family members (defined as theparticipant’s relationship partner and any others who the par-ticipant considered family members) and up to 15 personalcontacts (defined as any close personal contacts outside ofthe family) with which they had social contact in the lastmonth. The first five family members and personal contactsreported by the participant were selected for additional ques-tions, which included whether or not these specific individ-uals were aware of the participant’s HIV+ status. Degree ofserostatus disclosure was subsequently defined in two ways(the percentage and the absolute number of informed per-sons) for both of the network categories (family membersand personal contacts).

Practical support for adherence(adherence reminders)

Given research findings that underscored the importance ofpractical support for medical adherence (DiMatteo, 2004),we employed a measure that would tap this construct. Onepotentially important form of practical support for adherencecan be found in reminders from others to take one’s medica-tions. Almost any individual in a participant’s social networkcould conceivably provide such reminders, regardless of theirphysical distance from the participant (e.g., whether theylive together or apart). For each individual identified on theSocial Networks Questionnaire, participants were thereforeasked, “How often does this person encourage you to keep up

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with your medications?” Participants responded on a four-point Likert scale (0 = never, 1 = sometimes but not often,2 = quite often, 3 = always). In an effort to operationalizethis measure of practical support in a manner that was simi-lar to our measure of disclosure, we dichotomized participantresponses (0 vs. 1, 2, or 3) and then derived the percentageof individuals who provided adherence reminders.

Regimen complexity

As a measure of regimen complexity, participants were askedto report the total number of medications (ART and others)for which they had a current prescription.

Adherence motivation

Five self-report items assessed the level of motivation andcommitment to the goal of medical care adherence (e.g., “oneof the main priorities of my day is to follow my medicationregimen as closely as possible”). Participants rated their levelof agreement with each statement on a five-point scale fromstrongly agree to strongly disagree (α = .77).

Adherence self-efficacy

This twelve-item scale measured self-efficacy for medicationand medical care adherence (Chesney et al., 2000). Partici-pants rated items regarding specific components of medicalcare management (e.g., “How confident are you that you canintegrate taking your medication into your daily routine?”)on a scale from zero (cannot do at all) to ten (certain I cando); (α = .91).

Outcome expectancies

This scale was based on a questionnaire used by the HIVCost and Services Utilization Study (Bozzette et al., 1998).The self-report scale assessed outcome expectancies asso-ciated with non-adherence. In response to the question,“If you don’t take your HIV/AIDS medicines the way theyare prescribed, what do you believe would happen”, partic-ipants rated five items (e.g., “I would get sick,” “the viruswould get stronger”) on a four-point scale from not at alllikely to very likely (α = .68).

Problem solving

The intervention’s focus on couples led us to representproblem solving skills through the Communication PatternsQuestionnaire (Christensen & Shenk, 1991). We employedthe seven-item mutual constructive communication subscale(α = .82), which assesses dyadic communication skills forproblem solving (e.g., addressing poor adherence).

HIV Treatment knowledge

We developed a short inventory for this study that assessedknowledge of ART and the concept of viral resistance. Par-ticipants indicated whether each of 12 statements was trueor false, and the number of correct responses were summed(α = .72).

Beck depression inventory II (BDI II)

The BDI II is a 21-item self-report assessment designedto measure the severity of cognitive depressive symptoms(Beck, Steer, & Brown, 1996; α = .92)

Positive States of Mind (PSOM)

This six-item self-report scale assessed frequency of positiveaffect (Horowitz, Adler, & Kegeles, 1988; α = .83).

HIV Symptoms/Side effects Index

This was a modified version of the self-completed HIVSymptom Index (Justice et al., 2001). The index inquiredabout the presence of 25 physical symptoms (e.g., fevers,diarrhea, nausea) within the past month, the intensity of thesymptoms, and beliefs about whether they were medicationside effects. The number of reported symptoms was used asa summary score.

Problems with medication adherence

This was a modified version of a self-report questionnairedeveloped for the Adult AIDS Clinical Trial Group that as-sessed reasons why people do not take their medication asprescribed (Chesney et al., 2000). The original instrumentcontained 12 reasons and asked participants to indicate howoften they missed ART medication doses due to each rea-son (on a four-point scale). Our modified version included10 additional items and asked participants to simply indi-cate whether each was a reason they missed doses in thepast two months (yes/no). Two items related to concernsabout HIV serostatus disclosure: Missing ART doses be-cause “you were with others who didn’t know you were HIVpositive” and “you didn’t want others to notice you takingmedication.”

Demographics

Individual questions asked participants to report their gen-der, age, race/ethnicity, sexual orientation, educational level,employment, annual income, source of medical care, andtime since first testing HIV+ .

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Data analyses

Data analysis involved preparing basic descriptive statisticsto assess participant demographics, social network charac-teristics, extent of disclosure, level of adherence, and thepercentage who reported missing ART doses for reasons re-lated to serostatus disclosure. We conducted t-tests to com-pare participants who reported they had missed doses due todisclosure-related concerns with participants who did not citethese reasons for missed doses. Bivariate correlations werethen conducted to test the associations between theoretically-specified explanatory variables (including disclosure) andART adherence. Measures that were significantly related toadherence were subsequently employed in multiple regres-sion analyses to assess whether serostatus disclosure helpedto explain extent of adherence after controlling for othervariables. Finally, we used the criteria outlined by Baron andKenny (1986) to test whether social support for adherencemediated the relationship between disclosure and adherence.

Results

Descriptive statistics

Sample demographics

A total of 215 HIV+ patients and their serodiscordant re-lationship partners were enrolled in the study. The HIV+patients who were the focus of this analysis were 54%men and 46% women, and the mean age was 42 yearsold (SD = 6.9). The sample was 62% African American,24% Latino/Hispanic, 10% White, 1% Asian or PacificIslander, 1% Native American, and 2% multiracial or otherrace/ethnicity. Most of the participants reported that theywere heterosexual (67%), with smaller numbers indicatingthey were gay or lesbian (24%), bisexual (8%), or uncer-tain of their sexual orientation (1%). A majority of thesample (72%) had an educational level no greater thana High School/General Equivalency degree. Seventy-sixpercent were not employed, and 82% had an annual incomebelow $20,000. Most participants were patients at hospi-tal HIV/AIDS outpatient treatment clinics (69%); fewer re-ceived care from hospital clinics that did not specialize inHIV/AIDS (27%) or from private doctors (3%). Ninety per-cent of the sample received Medicaid or Medicare. The meanCD4 + count was 444 (SD = 352), and 41% had an unde-tectable viral load.

Social network characteristics

Participants reported a mean of 6 family members (SD = 3.8)and 6.3 personal contacts (SD = 4.5) on the social networks

questionnaire. The analyses conducted here were limited tothe first five individuals reported within each category, how-ever, because these were the only individuals to which thequestion regarding HIV serostatus disclosure was directed.After this range restriction, the mean number of family mem-bers was 4 (SD = 1.3), and the mean number of personal con-tacts was 3.9 (SD = 1.5). A majority of participants reportedat least five family members (57%) and at least five personalcontacts (58%). The most common types of family memberswere relationship partners or spouses (26% of the people re-ported in this category), siblings (22%), parents (14%), andchildren (14%). The most common types of personal con-tacts were described as friends (62% of the people reportedin this category), coworkers (9%), and neighbors (8%).

Extent of serostatus disclosure

Most participants in this study reported high rates of HIVserostatus disclosure to both family members and personalcontacts. On average, participants disclosed to 82.9% of fam-ily members (SD = 27.8), and 72.2% of personal contacts(SD = 38.2). The mean number of informed individuals was3.3 for family members (SD = 1.5) and 3 for personal con-tacts (SD = 1.9). Sixty-four percent of participants reportedHIV serostatus disclosure with all family members, and 57%reported disclosure with all personal contacts.

Degree of ART adherence

Participants were only enrolled in this trial if their MEMSdata indicated that they took less than 80% of their medi-cation doses within regular time-windows. The mean per-centage of adherence in this sample during the two-weekbaseline assessment interval was 44% (SD = 21.2), and thisstatistic ranged from 0% (two participants) to 79.5% (oneparticipant).

Reasons for missed ART doses

Table 1 reports the percentage of study participants who en-dorsed various reasons for having missed medication dosesin the last two months. Regarding the two disclosure-relateditems, 15% of the sample reported that they had missedmedication doses because they “were with others who didn’tknow you were HIV positive,” and 14% reported that theyhad missed medication doses because they “didn’t wantothers to notice you taking medication.” When these twoitems were collapsed together, 19% of the sample reportedmissing medications for either one or both of these rea-sons. We compared participants who did (19%) and did not(81%) endorse disclosure-related reasons for missing dosesof ART medication on the study measures. Participants whoreported disclosure-related reasons for missed doses were

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Table 1 Percentage of participants endorsing particular reasons formissed ART doses

Percent NumberReason for missed doses reporting reporting (N = 215)

Simply forgot 60 130Fell asleep 53 115Busy with other things 50 108Away from home or traveling 49 105Had change in daily routine 44 95Tired of taking so many pills 35 75Felt depressed or overwhelmed 31 67Felt sick or ill 30 65Didn’t want to take pills 29 63Social situation interfered 29 62Wanted to avoid side effects 22 48Needed to deal with family

responsibilities19 40

Felt good 17 37Ran out of pills 16 34Felt the drug was toxic 16 35Work schedule interfered 15 32With people who didn’t know

you were HIV+15 32

Didn’t want others to noticeyou taking medication

14 30

Were high or drunk 14 30Doubted medication was working 9 20Felt they interfere with sex life 9 19Unable to get food or drink 8 18

significantly younger, 39.2 vs. 42.2; t(212) = 2.5, p<.05, anddisclosed to a smaller number of their personal contacts, 2.4vs. 3.2; t(197) = 2.3, p<.05, than those who did not citethese reasons. In addition, participants who reported miss-ing doses for disclosure-related reasons demonstrated loweradherence self-efficacy, 6.0 vs. 7.6; t(213) = 5.8, p<.001, ad-herence motivation, 3.4 vs. 3.7; t(213) = 2.6, p<.01, and neg-ative outcome expectancies associated with non-adherence,3.0 vs. 3.3; t(213) = 2.6, p<.01. They also evidenced greaterdepression, 15.8 vs. 10.0; t(210) = −3.7, p<.01, less posi-tive states of mind, 10.9 vs. 13.2; t(212) = 3.5, p<.01, anda larger number of HIV symptoms and side effects, 13.4 vs.9.2; t(213) = − 4.6, p<.01. In a secondary analysis, we com-pared participants who specifically reported non-adherencedue to being “with others who didn’t know you were HIVpositive” (15%) with those participants who did not (85%),and found results highly similar to those reported above.

Relationship between disclosure and adherence

Table 2 reports the correlations between the theoretically-specified explanatory variables and ART adherence. Wefound that participants who reported greater HIV serostatusdisclosure to others demonstrated higher rates of ART ad-

Table 2 Correlations between ART adherence and other measures

Correlation withMeasure adherence

Contextual factors1. Percentage of family disclosed to .19∗

2. Percentage of personal contacts disclosed to .103. Number of family disclosed to .15∗

4. Number of personal contacts disclosed to .16∗

5. Practical support for adherence (reminders) .15∗

6. Regimen complexity .02Self-regulatory factors

7. Adherence goal structures .18∗

8. Adherence self-efficacy .22∗

9. Non-adherence outcome expectances .17∗

10. Problem solving (constructivecommunication)

− .07

11. ART knowledgeAffective states

.07

12. Depression − .0413. Positive States of Mind

Biological factors.11

14. Side effects .04

∗p < .05,∗∗p < .01

herence. Adherence was significantly associated with threedisclosure measures: the percentage of informed family mem-bers, number of informed family members, and number ofinformed personal contacts. The correlation between adher-ence and the percentage of informed personal contacts wasnot statistically significant, but this relationship remained inthe expected direction.

Examination of the other theoretically-specified explana-tory variables showed that four additional measures held sig-nificant bivariate relationships with ART adherence: adher-ence motivation, adherence self-efficacy, negative outcomeexpectancies for non-adherence, and practical support foradherence (adherence reminders; see Table 2). We foundno significant differences in ART adherence across any ofthe participant demographic characteristics assessed in thisstudy.

We next conducted multivariate regression analyses totest the relationship between degree of serostatus disclosureand ART adherence after controlling for other explanatoryvariables (see Table 3). In Model 1, we regressed adher-ence on three measures that showed significant bivariatecorrelations with adherence (adherence motivation, adher-ence self-efficacy, and negative outcome expectancies fornon-adherence). Since practical support for adherence wasreserved for our later mediation analysis, we did not enterit as a control variable at this stage. The regression equa-tion with the three explanatory variables was statisticallysignificant, F (3, 195) = 4.2, p = .007, R2 = .06, althoughthe individual variables were not. This result was acceptable

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Table 3 Regression analysis of ART adherence

Model Parameter B Std. Error Beta t R2 F Change

1 Constant 3.596 12.542 .287 .060 4.176∗∗

Adherence self efficacy 1.451 1.016 .112 1.429Adherence motivation 4.815 3.240 .109 1.486Outcome expectancies 3.842 2.568 .114 1.496

2 Constant − 12.404 13.365 − .928 .103 9.241∗∗

Adherence self efficacy 1.317 .996 .101 1.323Adherence motivation 5.133 3.175 .116 1.617Outcome expectancies 4.763 2.533 .141 1.880Disclosure to family 15.572 5.123 .208 3.040∗∗

∗p < .05,∗∗p < .01

Table 4 Mediation Analysis

Model Parameter B Std. Error Beta t R2 F

1 Constant 32.911 4.564 7.211∗∗ .034 6.964∗∗

Disclosure to family 13.805 5.231 .185 2.639∗∗

2 Constant 32.730 4.581 7.145∗∗ .036 3.651∗

Disclosure to family 11.346 6.647 .152 1.707Practical support (reminders) 3.290 5.471 .053 .601

∗p < .05,∗∗p < .01

given our purpose of testing the contribution of serostatusdisclosure.

In Model 2, we added a new explanatory variable to themodel: the percentage of informed family members (see Ta-ble 3). This regression equation significantly explained vari-ation in the degree of adherence, F (4, 194) = 5.6, p<.001,R2 = .10, and it showed that serostatus disclosure remaineda significant explanatory factor after controlling for the othervariables. A comparison of Model 1 and Model 2 showedthat 4% of the variance in adherence could be uniquely ex-plained by serostatus disclosure, and that this represented astatistically significant increase in the R2.

We repeated this two-stage regression analysis with theother two disclosure variables that showed significant corre-lations with adherence (number of informed family membersand number of informed personal contacts). The results ofthese analyses were highly similar to those described above(and are not reported here).

Practical support as a mediator of the relationshipbetween disclosure and adherence

We followed the criteria outlined by Baron and Kenny (1986)to test whether the provision of practical support (in the formof adherence reminders) mediated the relationship betweendisclosure and adherence. To meet the preconditions for amediation analysis, we first performed correlations to deter-mine whether our target variables (disclosure, practical sup-port, and adherence) showed significant relationships withone another. As reported in Table 2, both greater disclosure

and greater practical support (in the form of reminders to takeone’s medication) were significantly associated with higheradherence. We also found that disclosure to a greater per-centage of family members was significantly correlated withgreater provision of practical support (r = .62; p < .01); theother disclosure measures showed similarly strong relation-ships to the practical support measure. These results allowedus to proceed with the test of mediation. We first regressedadherence on percent disclosure to family members, and wethen regressed adherence on both disclosure and our poten-tial mediator (practical support for adherence). As reportedin Table 4, the association between disclosure and adher-ence was not substantially attenuated when our measure ofpractical support was added to the regression model, andthe practical support measure was not significant in the finalregression model. We repeated this analysis with our otherdisclosure measures and found the same results.

Discussion

The results of this study suggest that HIV serostatus disclo-sure influences adherence to ART regimens for some HIV+patients. Approximately one participant in five stated thatthey had missed ART doses in the last two months due toconcerns regarding disclosure. Greater disclosure to fam-ily members and close personal contacts corresponded tohigher rates of adherence, and disclosure remained a sig-nificant explanatory factor with regard to adherence aftercontrolling for other adherence-related variables in multiple

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regression analyses. We know of only one other study todate (Mellins et al., 2004) that has reported a direct quantita-tive association between HIV serostatus disclosure and ARTadherence.

Participant self-reports of ART non-adherence due to dis-closure concerns are consonant with the results of previousstudies in which patients have reported missed doses to avoidpotential communication of their HIV+ status and subse-quent stigmatization (Catz et al., 2000; Chesney et al., 2000;Chesney & Smith, 1999; Demas et al., 1995; Gibb et al.,2003; Golin et al., 2002; Klitzman et al., 2004; Siegel et al.,2000). It is important to recognize that disclosure was notone of the most frequently cited reasons for non-adherencein this sample, since a much higher proportion of partici-pants explained their missed doses in terms of other reasons(e.g., simply forgot, fell asleep, was busy with other things).However, the proportions of participants who reported non-adherence because they were with others who did not knowtheir HIV+ status or they did not want to be seen takingmedication were similar to the proportions who reportednon-adherence because they felt the drug was toxic or theywere high or drunk. Considerably more attention has beenplaced on the role of substance use and perceived medica-tion toxicity as factors that can undermine adherence thanhas been placed on the potential negative impact of non-disclosure. Furthermore, the finding that almost one-fifthof participants reported disclosure-related non-adherence isparticularly meaningful given that a majority of participantshad disclosed their HIV+ status to all reported family mem-bers and close personal contacts. It is reasonable to expectthat concerns about serostatus disclosure would more fre-quently be cited as a reason for non-adherence in a samplethat evidenced lower rates of disclosure.

Our comparison of participants who did and did not reportnon-adherence due to disclosure-related concerns suggeststhat the role of disclosure in ART adherence may be influ-enced by situational factors, self-regulatory processes, andmental health. Relative to other participants, those who citeddisclosure concerns as a reason for missed doses demon-strated disclosure to a smaller number of personal contacts(i.e., friends, coworkers, neighbors), suggesting that socialcontexts outside of the family may be particularly likely topresent disclosure-related barriers to adherence. This inter-pretation is supported by the notable proportions of partic-ipants who reported non-adherence when away from homeor in social contexts (see Table 1). Participants who citeddisclosure concerns as a reason for missed doses also ev-idenced greater depression and negative affect, as well aslower adherence self-efficacy, adherence motivation, andexpectations of detrimental outcomes from non-adherence.This may indicate that contexts of non-disclosure are morelikely to compromise adherence among patients with poorermental health, motivation, and behavioral skills (although it

may alternatively be that patients with these conditions aresimply more likely than others to endorse disclosure-relatedconcerns as a reason for non-adherence). We further foundthat those who reported missing doses due to disclosure con-cerns were younger than other participants, but the mean agedifferential between these two groups was not particularlymeaningful.

Across the sample, participants who reported greater HIVserostatus disclosure to others (in terms of either the num-ber or the percentage of others informed) demonstratedhigher rates of ART adherence. Our correlational and cross-sectional analysis, however, prohibits the ability to infer acausal relationship between disclosure and adherence. Anunmeasured confounding variable may influence both ofthese factors. Questions also remain regarding the directionof any potential causal association between disclosure andadherence. On one hand, greater serostatus disclosure mayfacilitate higher ART adherence by removing barriers to tak-ing medication in the presence of uninformed others. Thisinterpretation is supported by the finding that 19% reportednon-adherence as a result of serostatus disclosure concerns.On the other hand, the act of taking ART doses may alsoprovide a catalyst for serostatus disclosure to others. Someindividuals use the act of taking medication as a means tointroduce or signify their HIV+ status to others (Stirratt,2005). It is therefore important to recognize that the findingsreported here may reflect not only the capacity of disclosureto facilitate adherence, but also the capacity of adherence tofacilitate disclosure.

We did not find evidence that the relationship betweenHIV serostatus disclosure and ART adherence was mediatedby the provision of practical support for adherence (in theform of reminders to take one’s medications). We had postu-lated such a relationship because serostatus disclosure rep-resented a precondition for obtaining social support for ARTadherence, and the research literature has repeatedly linkedthe provision of social support with better adherence (Am-massari et al., 2002). Although participants who reportedgreater practical support for adherence demonstrated greaterHIV serostatus disclosure and higher ART adherence, theinclusion of the support variable in multiple regression anal-yses did not alter the relationship between disclosure andadherence. We therefore did not find support for the pro-posed mediational model, although it remains possible thatthe association between disclosure and adherence is drivenin part by the ability of disclosure to foster support foradherence. Overall, the results of this study suggest a di-rect association between serostatus disclosure and ART ad-herence, given participant reports of non-adherence in thecontext of non-disclosure, the finding that disclosure inde-pendently explained adherence after controlling for otherfactors, and the lack of evidence for practical support as amediator.

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This study needs to be understood in the context of its lim-itations. The primary study limitation is the highly selectivenature of the sample, which is far from optimal for test-ing a relationship between disclosure and adherence. Theeligibility criteria regarding relationship status meant thatall participants had already disclosed their HIV serostatusto at least one person (in this case, their HIV-seronegativerelationship partner). There were therefore no participantswho were completely isolated in terms of serostatus disclo-sure, and high rates of disclosure were generally reported inthis sample. The eligibility criteria additionally required allparticipants to have poor adherence to medication, which re-stricted the range of our adherence measure. Although theserepresent significant limitations, we would argue that theyshould be expected to work against our main hypothesis.Had the sample included individuals who were more iso-lated in terms of disclosure and also individuals who showedhigher levels of adherence, it is possible that the magnitudeof the association between disclosure and adherence mayhave been stronger than that observed here. It is thereforenotable that we found an association between disclosure andadherence in such a specialized sample.

There are additional qualifications presented by the studydesign and certain measures. First, as previously stated,the cross-sectional study design denies our ability to in-fer a causal relationship between disclosure and adherence.Second, we based our measure of missed doses due to disclo-sure concerns on two items that arguably vary in the degreeto which they tap disclosure concerns (“were with otherswho didn’t know you were HIV positive” and “didn’t wantothers to notice you taking medication”). Third, the mea-sure of practical support for adherence was narrowly definedas the provision of adherence reminders from others, and itwas assessed through a single item from the social networksquestionnaire. Finally, we note that MEMS is generally re-garded as a superior measure of adherence when compared toself-reports, but it is not free of measurement problems. Thesystem can be affected by cases where participants removemultiple doses from their medication bottle at one time (for“pocket doses”) or open their bottle for purposes other thantaking medication. We made no correction for these factorsin the present study, and this may partially account for therelatively few and generally weak correlations observed be-tween the theoretically-specified explanatory variables andadherence.

There is a greater need to fully understand the role ofsocial and contextual factors on ART adherence rather thanonly focusing on individual psychosocial factors (i.e., atti-tudes, beliefs, emotions). As discussed earlier, social supporthas been shown to be associated with ART adherence in nu-merous studies and a couple-focused behavioral interventionwas recently shown to be effective in improving adherence

among patients with poor adherence (Remien et al., 2005).In this study, we found that social contexts of disclosure ornon-disclosure may influence adherence. SAT (Ewart, 1991)provides a useful theoretical framework for understandingcontextual variables that influence individual health behav-ior, and it should be more fully tested in empirical researchon adherence. Also, the role of disclosure of HIV status inadherence and other health outcomes should be studied in awider range of patient populations, and the causal pathwayexplaining the positive relationship between disclosure andadherence needs to be studied directly. Longitudinal studiescan help determine whether social support or other factorsserve a mediating role in the relationship between disclosureand adherence.

Clinicians working with HIV+ patients should be awareof the negative impact that lack of disclosure may have onmaintaining consistent adherence. It may be important tohelp patients consider the potential benefits of disclosure(e.g., increased treatment support) vs. the possible negativeconsequences (e.g., discrimination). Blanket disclosure in allcontexts and circumstances should not be advised. Instead,patients should be provided with strategies to maintain ad-herence in situations where disclosure of HIV serostatus isill advised, and also taught skills to disclose in a mannerthat can help avoid stigma and discrimination, in order toaccess social support for adherence. More generally, everyeffort should be made by healthcare professionals and policymakers to continue to fight HIV/AIDS stigma, prejudice, anddiscrimination on the broader societal level to help achieveoptimal access to health care and maintenance of treatmentadherence.

Acknowledgement This study was supported by the National Insti-tute of Mental Health (R01 MH61173 Serodiscordant Couples, MedicalAdherence, and HIV Risk; Robert H. Remien, Ph.D.). Michael J. Stir-ratt, Ph.D., is a post-doctoral fellow supported by a training grant fromthe National Institute of Mental Health (T32 MH19139 BehavioralSciences Research in HIV Infection; Anke A. Ehrhardt, Ph.D.). Theauthors acknowledge the contributions of the SMART Couples StudyTeam: Nabila El Bassel, Ph.D., Robert Kertzner, Ph.D., Alex Carballo-Dieguez, Ph.D., and Joanna Dognin, Psy.D. We also thank Tiffany Jung,N. P., Robert Warford, N.P., Ernie Attah, Ph.D., and Ronit Epstein, B.A.,for their assistance with the conduct of this study. We are grateful toVictoria Sharp, M.D., and the clinical staff at St. Luke’s-Roosevelt Hos-pital Center for their collaboration on this project and to the men andwomen who participated in this study.

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