Applying the theory of planned behavior to explore HAART adherence among HIV-positive immigrant Latinos: Elicitation interview results

Patient Education and Counseling 85 (2011) 454–460

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Patient Education and Counseling journal homepage: www.elsevier.com/locate/pateducou

Adherence and Utilisation

Applying the theory of planned behavior to explore HAART adherence among HIV-positive immigrant Latinos: Elicitation interview results Aaron T. Vissman a, Kenneth C. Hergenrather b, Gabriela Rojas c, Sarah E. Langdon c, Aimee M. Wilkin d, Scott D. Rhodes a,d,* a

Social Sciences and Health Policy, Wake Forest University School of Medicine, Winston-Salem, USA Department of Counseling and Human Development, The George Washington University, Washington, DC, USA Maya Angelou Center for Health Equity, Wake Forest University School of Medicine, Winston-Salem, USA d Department of Internal Medicine, Wake Forest University School of Medicine, Winston-Salem, USA b c

A R T I C L E I N F O

A B S T R A C T

Article history: Received 7 June 2010 Received in revised form 14 November 2010 Accepted 6 December 2010

Objective: This study explored influences on intention to adhere to highly active antiretroviral therapy (HAART) among immigrant Latinos living with HIV/AIDS in the southeastern USA. Methods: Our community-based participatory research (CBPR) partnership completed individual indepth interviews with 25 immigrant Latinos, based on the theory of planned behavior (TPB), to explore beliefs toward HAART adherence and HIV testing. Results: Participants identified (a) seven outcomes of treatment adherence (e.g., ‘‘feeling good’’ and ‘‘controlling the virus’’), (b) six groups of persons influencing adherence (e.g., family, partner/spouse), and (c) nine impediments to adherence (e.g., appointment scheduling, side effects of treatment). Fear of deportation, perceived costs of services, and barriers to communication emerged as impediments to both HAART adherence and HIV testing. Conclusion: The findings suggest the utility of TPB in identifying factors to enhance HAART adherence among immigrant Latinos. Future research should explore the extent to which these identified TPB components quantitatively influence adherence intention and immunological and virological outcomes. Practice implications: Culturally congruent interventions for immigrant Latinos may need to focus on facilitators of adherence, influential referent groups, and destigmatizing HIV/AIDS. ß 2010 Elsevier Ireland Ltd. All rights reserved.

Keywords: HAART adherence Immigration Latino HIV testing The theory of planned behavior

1. Introduction and review of the literature 1.1. HAART adherence and clinical outcomes More than 15 years after the introduction of antiretroviral drugs, persons living with HIV/AIDS (PLWHA) continue to face challenges to adherence. Highly active antiretroviral therapy (HAART) must be taken as prescribed (90–95%) for optimal therapy and non-adherence has severe implications, including medication failure, narrowed treatment options, and development of drug-resistant strains of HIV. Non-adherence to antiretroviral therapy in adult populations has been shown to range from 33% to 88% [1]. For PLWHA taking protease inhibitor-based regimens, 95% adherence would require missing no more than three doses per

* Corresponding author at: Department of Social Sciences and Health Policy, Division of Public Health Sciences, Wake Forest University School of Medicine, Medical Center Boulevard, Winston-Salem, NC 27157-1063, USA. Tel.: +1 336 713 5080; fax: +1 336 716 7554. E-mail address: [email protected] (S.D. Rhodes). 0738-3991/$ – see front matter ß 2010 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.pec.2010.12.004

month of a twice daily regimen to achieve an 80% likelihood of having a viral load below the limit of detection [2]. Given that marginal changes in adherence affect the probability of viral suppression, conceptualizing, measuring, and identifying factors that influence adherence among disproportionately affected subgroups is necessary to guide support services and secondary prevention programming. In addition to demographic and environmental factors (e.g., being poor, in unstable housing), research has identified treatment (e.g., complex dosing schedule), behavioral (e.g., alcohol and substance abuse), cognitive (e.g., HIV knowledge), and psychological (e.g., depression) factors that affect adherence to HAART and viral load among PLWHA [3]. 1.2. HAART initiation and adherence among immigrant Latinos Negative experiences with the US healthcare system; perceived racism; information ‘‘overload’’ and competing and/or perceived conflicting recommendations; lack of bicultural service provision including lack of provider knowledge of traditional medicine; and language barriers also have been identified as leading to reduced adherence and mistrust of evidence-based medicine among

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Latinos [4–8]. For immigrant Latinos with and at increased risk for HIV, these may contribute to longer delays in being tested for HIV and obtaining medical care after HIV infection and inadequate disease management [3,9–12]. Among AIDS diagnoses in the US from 1996 to 2005, Latinos were more likely than non-Latino African Americans/Blacks and Whites to receive their diagnosis a short time (1–3 years) after their initial HIV diagnosis [13]. Among Latinos, these short intervals from HIV diagnoses to AIDS diagnoses were significantly more common for those born in Mexico or Central America compared to US-born Latinos. Social stigma, secrecy, symptom-driven health-seeking behavior, and limited HIV-risk knowledge have been reported among newly HIVdiagnosed immigrant Latinos as contributing to delayed clinical presentation [12]; Murphy et al. highlighted the continued salience of these factors among Latinos who report inconsistent HAART adherence [14]. Data from the Multicenter AIDS Cohort Study indicates that Latinos are significantly more likely than nonLatino African Americans/Blacks and Whites to report HAART nonadherence [15]. 1.3. Promoting HAART adherence Although individual-level interventions providing cognitive behavioral support [16] and targeting practical medication management skills [17] have improved adherence to HAART, there is no consensus surrounding core elements in adherence, and studies have yet to report sustained intervention effects [17,18]. Furthermore, studies that include Spanish-speaking Latinos have had nonsignificant effects on adherence despite significant change in targeted variables such as health literacy and patient-provider communication [19,20]. Across adherence studies, researchers have called for more theoretically founded study of adherence, undertaken in collaboration with communities, incorporating individual perceptions and the social context of behavior [21]. 1.4. The theory of planned behavior The application of theoretical frameworks may help explain differences in adherence and inform interventions to increase adherence. The theory of planned behavior (TPB) takes a reasoned action approach, which assumes that an individual’s behavior follows reasonably from their beliefs. The TPB posits that a person’s behavior is best predicted by his or her intentions to perform a particular action and intention is predicted by three cognitive determinants: (a) attitude, (b) subjective norms, and (c) perceived behavioral control [22]. Attitude is the individual’s overall evaluation of the consequences or outcomes of performing a specific behavior. Subjective norms are the social pressure(s) an individual feels to perform, or not to perform the behavior. Perceived behavioral control (PBC), according to TPB, can also influence behavior directly; it is included to predict intentions and behaviors not completely under volitional control. PBC is the individual’s perception of the extent to which the behavior is easy or difficult to perform [23–25]. Each cognitive determinant consists of a belief or a set of beliefs, and a judgment of each belief. Applied to HARRT adherence, TPB predicts that an individual’s behavioral intention is a function of the individual’s attitude toward adherence, influence of important others regarding adherence, and personal control over adherence. Although TPB has predicted a wide range of health behaviors [22,26], including HIV risk behavior [27], and condom use among Spanish-speaking Latinos [28], studies have not examined this model in relation to adherence to HAART. This study sought to collect, analyze, and interpret qualitative exploratory data to identify salient behavioral beliefs, normative beliefs, and control beliefs that may influence behavioral intention and HAART

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adherence among immigrant Latinos. Because this study was designed to identify the spectrum of beliefs and influences (e.g., perspectives about HIV more generally) that could affect HAART adherence, Latinos receiving HIV medical care were sampled along with a small number of Latinos at increased risk for HIV. 2. Methods 2.1. Elicitation interviews This study outlines the first procedure of the TPB: elicitation of salient behavioral beliefs, normative beliefs, and control beliefs [22] from a sample of individuals most likely to perform the behavior. Brief, applied definitions of the TPB components are presented in Table 1. An in-depth interview guide was developed, reviewed, and approved by the authors who have extensive research experience with PLWHA [29–31] and immigrant Latinos [32–35], and expertise in the development of TPB measures [29,31]. The guide was developed iteratively through literature review and brainstorming potential domains and constructs. The final draft was translated into Spanish using a ‘‘committee approach’’ to translation and assessment [34]. This approach to translation uses a committee whose members have diverse skill sets beyond those of a translator (i.e., specialized training in HIV/AIDS medical care and qualitative research including the TPB).This approach is a preferred method because often independent translators are not sufficiently knowledgeable about the content area and a committee of individuals with complementary skills can lead to more comprehensive text translation. Administration of individual in-depth interviews was conducted in-person by native Spanish-speaking research staff between November 2008 and March 2009. In accordance with the TPB [22,29–31,36–37], openended questions, with probes, were used. HAART adherence was defined for participants as, ‘‘taking all of your HIV medicines exactly as prescribed by physicians in North Carolina.’’ Abbreviated interview items included: feelings and opinions about medicine and physicians in the US, and in one’s country of origin; advantages and disadvantages of HAART adherence; facilitators and impediments to HAART adherence; and people who affect opinions about HAART adherence. For participants recruited on the basis of their HIV-risk status, items included: advantages and disadvantages of HIV testing; facilitators and impediments to HIV testing; and people who influence HIV testing behaviors. 2.2. Recruitment Participants were recruited from the Wake Forest University Baptist Medical Center Infectious Diseases Specialty Clinic (IDSC) and AIDS Care Service (ACS), a local AIDS service organization

Table 1 Selected definitions of theory of planned behavior components applied to adherence to HAART and HIV testing. Component

Definition

Behavioral beliefs

Beliefs that adhering to HAART leads to certain consequences

Normative beliefs

Control beliefs

Beliefs that getting an HIV test leads to certain consequences Beliefs identifying specific referents who think I should or should not adhere to HAART as prescribed Beliefs identifying specific referents who think I should or should not get an HIV test Beliefs identifying the facilitators for, or impediments to, adhering to HAART Beliefs identifying the facilitators for, or impediments to, getting an HIV test

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offering Spanish-language HIV/AIDS case management. The IDSC and ACS are located in the same city in northwest North Carolina (NC). The counties in the catchment area have: the highest percentages of Latinos in NC; the greatest rate of growth of the Latino community; and higher HIV infection rates than the NC rate [38–41]. Selection criteria for participants included self-identifying as immigrant Latino or Hispanic; being 18 years of age; having initiated HAART or reporting increased behavioral risk for HIV infection; and providing informed consent. Clinical and case management staff at IDSC and ACS assisted in recruitment by briefing potential participants about the study details and recruitment criteria and contacting individuals who were interested in participating in the study. In-depth interviews were administered within private rooms at the IDSC and ACS and were audio-recorded; six participants were interviewed privately in their homes. Each participant provided written consent and was paid $40.00 for participation. Human subject protection and oversight was provided by the Institutional Review Board (IRB) of Wake Forest University Health Sciences. 2.3. Content analysis and interpretation All interviews were transcribed verbatim by a professional transcriptionist. Transcripts were analyzed in accordance with the standard guidelines of the TPB by authors trained in the theory [22,36]. Content analysis involved three stages derived from grounded theory: open coding to identify and label salient belief statements; axial coding to classify belief statements by cognitive determinant and categorize statements into analytical categories; and selective coding to refine analytical categories and emerging theory [42]. For example, a statement that identified a specific referent (e.g., brother) who thought the participant should or should not adhere to HAART as prescribed was coded as a normative belief statement, and subsequently, statements referring to siblings, parents, and children were grouped together to form the analytic category, family. Interpretation was reduced by using exact words of transcribed beliefs in this procedure; they were sorted and coded using MS Office Excel [43]. Inter-rater reliability was assessed. The first and fourth authors independently analyzed the transcripts. The classification of belief statements pertaining to the perceived effects of medicine provided the only inconsistency. Authors came to consensus that particular statements required further deconstruction and should be coded as both behavioral and control beliefs. After this emendation each elicited salient belief addressed a single topic and inter-rater reliability was 100%. 3. Results 3.1. Participants Of the 27 Spanish-speaking immigrant Latinos contacted by study staff, 25 agreed to participate. Of the participants, 20 (80%) were recruited from IDSC and reported receiving HAART regimens while living in North Carolina; five (20%) were recruited from ACS and reported increased risk for HIV infection. Participant characteristics are presented in Table 2. Each participant provided at least one response per item. 3.2. Treatment initiation and adherence Among participants recruited from the IDSC, sources of impetus for HIV testing included workplace injury, pregnancy, or a physiological symptom. None reported being tested for HIV before their seropositive diagnosis. Most participants reportedly initiated treatment for HIV/AIDS immediately or within weeks of their

Table 2 Participant characteristics. Characteristic Sero-status and inclusion criterion HIV+, prescribed HAART HIV serostatus unknown, at increased risk Mean age Gender Male Female Country of origin Mexico El Salvador Honduras Cuba Dominican republic

N (%) 20 (80%) 5 (20%) 38.6 (range: 25–52) years 20 (80%) 5 (20%) 20 2 1 1 1

(80%) (8%) (4%) (4%) (4%)

diagnosis; however, a few described delaying HIV medical supervision until they or their partner or spouse experienced physiological symptoms. Self-reported HAART adherence varied across participants. Most participants described consistent adherence, infrequently delaying or missing doses while living in NC, but some practiced dose reduction. As a participant reported, ‘‘It happens that I am taking a cocktail, one could say. . . so the dosage may be very strong. So, instead of taking three (pills), I take one.’’ Three participants described periods of time, lasting a few days or weeks, when they were non-adherent, and one participant reportedly discontinued HIV medical supervision and did not adhere to HAART for the two years prior to his interview. Participants generally expressed high personal volition to adhere to HAART, reporting, for example, ‘‘I rely on myself’’ and ‘‘nothing stops me.’’ 3.3. Behavioral beliefs about HAART adherence Seven analytic categories emerged, representing 100% of the 28 salient behavioral beliefs, as presented in Table 3. Advantages of adherence included physiologically and psychologically ‘‘feeling good’’, extending one’s life, preventing opportunistic infections, Table 3 Identified behavioral beliefs. Advantages and disadvantages of treatment adherence

%

Feeling good physically or psychologically ‘‘The advantages are that one feels good and if you stop taking them, you will have a relapse.’’ Extends life ‘‘The advantages are that people are now living more and more years. It’s no longer a death sentence.’’ Prevents opportunistic infections ‘‘The advantage is that other infections don’t affect you’’ Controls the virus ‘‘The advantages are that your level of T4 goes up and the viral load doesn’t get too high too easily.’’ Becomes habitual and easier over time ‘‘Today, it’s like a discipline. I see it, not so much as a pill for a disease, but more a way... I look at it like it is a vitamin.’’ Producing accurate clinical feedback ‘‘As the blood tests are being done every three months, one can see how well they are working, or if they need to be changed.’’ Damages the liver ‘‘There will always be a risk that it will harm the liver, something internal, as a side-effect.’’

36

21

14

11

7

7

4

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and controlling the virus. Producing accurate clinical feedback (i.e., lab values that reflect behavioral adherence) was a reported advantage because it enables physicians’ assessment of regimen efficacy. Participants identified adherence itself as advantageous because consistent behavioral performance creates a habit, which is activated without conscious effort and thus easier to perform over time. Participants identified potential ‘‘damage to the liver’’ as a disadvantage of adherence. 3.4. Normative beliefs about HAART adherence Participants identified individuals and groups who think they should, or should not, adhere to HAART as prescribed. Six analytic categories emerged, representing 100% of the 27 salient normative beliefs reported by participants. These normative beliefs are presented in Table 4. A few participants identified family, friends and a partner or spouse in the US and countries of origin as important referents in general terms, but these referents were identified as not providing normative influence related to HAART adherence because they were unaware of the participant’s serostatus. As a participant remarked, ‘‘I have kept it a secret from my children and everyone, because my children is depended on me.’’ Some participants reported that proximal referents (e.g., a cohabitating spouse/ partner) exerted influence through daily encouragement to maintain HAART adherence; distal referents (e.g., family in country of origin) also exerted influence by motivating participants toward adherence. Belief statements also indicated normative influence from physicians (7%), HIV-positive peers (4%), counselors (4%), and support groups (4%).

Table 4 Normative beliefs. Influential referent groups

%

Family ‘‘The only one I would have would be my brother. He’s the one who tells me to take the medicines if I forget to take them.’’ Partner/spouse ‘‘At 10:00 on the dot, we have to take our medicines. If I am asleep, my wife awakens me and gives it to me. If she is asleep, I awaken her and give it to her.’’ Physician ‘‘I do it as a discipline, and following the recommendation of the doctor who has told me I can take it all . . . once each day, so I choose to take it all at night.’’ Friends who are also HIV positive ‘‘I think that they see that they aren’t getting better and they think they are not long for this world and they don’t want to take their medicines. It’s not just us Mexicans. Because I have also had White friends who no longer want to take the medications.’’ Counselor ‘‘Right now, since I don’t have a family, it’s just me and (the HIV/AIDS counselor). She’s always aware, making appointments, and I am very grateful to her for that.’’ Members of HIV support groups ‘‘I went to an event (HIV support group), and there was a man there who said he had had it for more than ten years, and he only took a pill. So from that time, I said, Well, then, if he has lived 10 years, I’m going to live longer.’’

48

33

7

4

4

4

457

3.5. Control beliefs about HAART adherence Participants reported impediments to adhering to HAART as prescribed, which represent the PBC component of TPB. Among participants, nine analytic categories emerged, representing 100% of the 33 salient control beliefs. These control beliefs are presented in Table 5. Participants reported beliefs indicating that physiological and psychological side-effects of medicine (e.g., losing weight, ‘‘feeling drugged’’) make HAART adherence more difficult. Poor communication with providers and appointment scheduling and rescheduling challenges also were identified as influencing adherence directly, by limiting access to HAART refills, and indirectly, by reducing trust and motivation. As a participant remarked, I am discouraged when I go to the appointment with the physician because I am not treated well . . .. They might give you an appointment at 9:00 a.m., and the interpreter arrives at 11:30 a.m., and I couldn’t stay long because I depended on my work. . .. At first I believed 100% in the interpreters. . . now I don’t. Negative internal dialogue was described as an adherence barrier for some Latinos particularly during treatment initiation. As

Table 5 Control beliefs. Impediments to adherence

%

Unpleasant side effects of medications ‘‘The side-effects of the pills are very strong, so many people stop taking them.’’ Difficulty scheduling medical appointments ‘‘I wouldn’t have any trouble at all because there was a time I took it exactly to the letter! The only thing that made it difficult was the (limited) medical attention. That’s the only thing. It was my biggest problem . . . that made me not keep the doctor’s appointment. Of course, I’m the one who is hurting myself!’’ Poor communication with medical providers ‘‘Sometimes that hurts you here, because he talks English, and we talk Spanish. And that’s a barrier for many Hispanics. Because I went through that. I had it, but thank God, as I’m telling you again, I now speak better and can defend myself, and I don’t think I’ll have a barrier.’’ Increased financial burden/no insurance coverage ‘‘That’s what happened to me for two years. I stopped taking the medicine, because my medical insurance lapsed, and I stopped seeing the doctor and stopped taking medicines.’’ Limited availability of medication during periods of migration ‘‘We left (Mexico) because we said we aren’t going to earn enough for the medicines.’’ Fear of deportation ‘‘Many times if you are not documented, you think they (Doctors) are linked to Immigration and they are going to talk to them (Immigration and Customs Enforcement Officials) . . . and those discourage people from going to the hospital or not inform the doctors.’’ Depression ‘‘They don’t have the interest in taking them (HIV medicines), probably because they are depressed or have not been able to talk to anybody about it, because I’ve been through that.’’ No permanent address precludes participation in medication home-delivery programs ‘‘It (missing doses of HAART) has happened to me because sometimes I don’t have a way to get to the appointment. And at times I don’t have an address where I could be. . . I haven’t had a fixed home-address.’’ Native internal dialogue related to HIV disease ‘‘Each time you take the pill it reminds you of the illness.’’

24

21

18

12

9

6

3

3

3

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a participant commented, ‘‘Every time they (other Latinos with HIV) are going to take them (medication) . . . because this happened to me at the beginning, the pills will remind them that they are sick, ‘Ay, and I’m going to die!’’’ Participants also reported that financial costs; lack of transportation; lack of permanent address; employment responsibilities; and fear of deportation make HAART adherence more difficult. 3.6. Salient HIV testing beliefs To further examine the spectrum of beliefs that could influence HAART adherence, TPB components related to HIV testing were examined among the five reportedly HIV-seronegative participants who were at increased risk for HIV. As a health-seeking behavior which necessarily precedes HAART adherence, salient HIV testing beliefs may influence behavioral intentions through past attitudes and experiences and contribute to the broader social context for immigrant Latinos affected by HIV/AIDS. Advantages and disadvantages (i.e., behavioral beliefs) of HIV testing included self-confidence gained from knowing one’s serostatus, increased trust in one’s sexual relationships, increased risk of deportation due to health system interface, and risk of social isolation if results come back positive. Influential referent groups (i.e., normative beliefs) included peers, partner or spouse, and family members. Impediments to HIV testing (i.e., PBC beliefs) included: language and communication barriers; cost, including wages forgone to keep medical appointments during work hours; lack of transportation; fear of result; fear of disclosing personal health information requirements including address; distrust of the testing procedure and the validity of test results. Participants reported inaccurate knowledge about seroconversion that may further limit HIV testing. A participant reported, ‘‘HIV doesn’t show up right away, but it could show up three, six, seven months, even a year or two later. One never knows.’’ 3.7. Experience with healthcare systems outside of the US Cultural expectations about the use of antibiotics and other medicines emerged as salient factors in participants’ perception of HAART regimens. High levels of confidence in US physicians and HIV medicines were described across the 25 transcripts; however, prohibitions on the use of antibiotics and vitamin supplements by providers were described by some participants as limiting confidence in the efficacy of prescribed regimens including HAART. Some participants reportedly self-administered antibiotics that their physicians advised against. Although regimen limitations were not described as a barrier to HAART adherence; distrust and questions about treatment efficacy may contribute to dose reduction, self-administration of medicines from non-medical sources and non-adherence. A participant reported, ‘‘I don’t trust 100% because when one is in HIV treatment, they (physicians) . . . forbid taking medicines against infections . . . antibiotics. They don’t want you to take vitamins. They just want you to take your medicine. In my country, it’s quite the contrary. They give you your [HIV] medicines and they still encourage you to take an antibiotic medicine because you have a small infection. If I have a small infection or something, I take medicine and I keep going. 4. Discussion and implications 4.1. Discussion Because HIV providers are trained to assess one’s commitment to adherence before initiating HAART [21], studies of adherence may exclude individuals with no history of behavioral intention and result in samples reporting little variance for theoretical

models to explain. This study attempted to overcome this limitation by examining beliefs underlying HAART adherence among HIV-seropositive immigrant Latinos and beliefs underlying HIV testing among immigrant Latinos at increased risk for HIV infection. Regardless of whether beliefs are rational, logical, or correct by objective standards, the elicitation stage of TPB is intended to produce the underlying contributions of salient behavioral, normative and control beliefs and other factors to behavioral intention and performance [44]. This study provides guidance for further research on the HAART adherence behavior of immigrant Latinos, a group for which little is known [19,20,45]. Several study findings deserve further exploration. Regarding behavioral beliefs, participants reported that the consequences of HAART adherence were generally advantageous to health and longevity. ‘‘Damage to the liver’’ was the only reported disadvantage of adherence. This has been reported as a side-effect associated with earlier classes of antiretrovirals, and may be a critical belief held by Latinos who have experienced antiretroviral (ARV) treatment outside the US. It may also be a widely held misconception among HIV-seropositive Latinos or within the broader Latino community. Perceived side-effects of HAART also emerged as barriers to adherence, potentially reducing self-efficacy and directly limiting an individual’s ability to adhere. Side-effects typically occur during the first three months after HAART initiation, or after a regimen change [46]; participants reported that negative internal dialogue (‘‘self-talk’’) may accompany these stages of treatment and negatively influence intentions to adhere. Although the consequentialist view of TPB does not distinguish between cognitive and affective beliefs, psychologically ‘‘feeling good’’ and negative self-talk, as described by participants, may be considered emotional consequences of behavior. Cappella and other theorists have considered the possibility that anticipated emotional outcomes of a behavior determine behavioral intentions independent of the anticipated cognitive outcomes [47]. Thus, the degree to which individuals anticipate positive or negative emotions as consequences of regimen consumption may explain intention and adherence in addition to or irrespective of perceived health consequences. Future research could test whether emotions described in this study matter beyond the consequentialist viewpoint and explore the relationship of emotions to anxiety related disorders (e.g., depression) which have been associated with adherence [48]. Behavioral beliefs findings also suggested the importance of developing habit-strength, which may have implications for future studies. Habit-strength has been shown to moderate the intention–behavior relationship in physical activity [49]; measuring habit-strength and providing consistent performance feedback during transitional stages of HAART may be useful in understanding and promoting adherence. Regarding normative beliefs, although having a provider who is skilled in HIV management is key, providers may have limited normative influence over adherence behavior. Participants largely did not mention the impact of providers, including physicians, as individuals or groups of individuals who think they should or should not adhere to HAART; however, the reported communication barriers and imposition of translation staff may be partly responsible for this disconnect. These results suggest that the family and partner or spouse play relatively important normative roles in adherence and HIV testing, regardless of the referent’s proximity. Other qualitative research has concluded that ‘‘having someone to live for’’ may be extremely important in terms of immigrant Latinos’ HAART adherence [14]. Regarding control beliefs, structural barriers (e.g., lack of transportation, unemployment, and immigration status) were

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described along with appointment-setting challenges as limiting access to HAART and negatively influencing adherence. Across the 25 elicitation interviews behavioral facilitators were not identified. Perceived costs of services, fear of deportation, and communication difficulties emerged as impediments to both HAART adherence and HIV testing. Deportation was described as an anticipated outcome of HIV testing and fear of deportation was an impediment to HAART adherence, highlighting its respective contribution to attitude and PBC before and after treatment has been initiated. Migration alone has been associated with HAART non-adherence in other populations [50,51], and these results suggest that study participants acknowledge migration and immigration related factors as potentially compromising their best intentions toward HAART adherence. Within immigrant Latino communities HIV stigma may be a relatively influential socio-cultural factor as evidenced by reported fears of disclosure among PLWHA and fear of social isolation among at-risk participants if they were to test positive. The anticipated consequences from HIV testing reported here (changes in selfconfidence and partner confidence, risk of social isolation and deportation) indicate that many immigrant Latinos may be uncomfortable discussing HIV/AIDS with family members and other influential referents. However, the suggested gravity of family and partner relationships for immigrant Latinos in this study supports the strategy of harnessing ‘‘familismo,’’ as recommended in much of the broader literature [52–55]. The socio-cultural context for behavior was further characterized by reported misconceptions about HIV within the community and regimen expectations that are based on experiences with health care outside of the US. 4.2. Limitations Participant selection was based on a convenience sample; therefore, the findings cannot be generalized to all immigrant Latinos. However, for the purposes of formative research, the findings from this study may identify relevant factors potentially missing in other studies and contextualize environment-behavior interactions. Utilizing IDSC and ACS staff for recruitment and these locations for elicitation interviews may have introduced selection and response biases due to their existing relationships with participants; however, these relationships facilitated access, promoted recruitment and participation, and validated inclusion criteria. 4.3. Conclusion Before developing interventions to change adherence, the degree to which attitude, subjective norms, or perceived behavioral control influence that adherence should be considered. Results from this study suggest that, although the outcomes of HAART adherence were viewed as advantageous, perceived sideeffects, and multi-level barriers (e.g., immigration status) may limit access to therapy and reduce personal volition. Further qualitative research is necessary to conceptualize the role emotions play in routine behavior such as HAART adherence. Quantitative research is needed to determine the statistical significance of the TPB components identified in this study. 4.4. Practice implications Culturally congruent interventions to increase adherence among immigrant Latinos may need to focus on destigmatising HIV/AIDS at the community level and targeting those whose HAART regimens have been interrupted or only recently initiated for individualized support. Within a client counseling framework (e.g., motivational interviewing), personalized facilitators of

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