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. Author manuscript; available in PMC: 2021 Jul 30.
Published in final edited form as: Health Soc Care Community. 2010 Dec 8;19(3):261–271. doi: 10.1111/j.1365-2524.2010.00968.x

How does directly observed therapy work? The mechanisms and impact of a comprehensive directly observed therapy intervention of highly active antiretroviral therapy in Peru

Sonya Shin 1,2,3, Maribel Muñoz 2, Jhon Zeladita 2, Sam Slavin 1, Adolfo Caldas 1, Eduardo Sanchez 4, Miriam Callacna 4, Christian Rojas 4, Jorge Arevalo 5, Jose Luis Sebastian 6, Jaime Bayona 2
PMCID: PMC8324021  NIHMSID: NIHMS1725632  PMID: 21143333

Abstract

From December 2005 through August 2008, we provided community-based accompaniment with supervised antiretroviral therapy (CASA) to impoverished individuals starting highly active antiretroviral therapy. Adherence support was provided for 18 months by a community-based team comprised of several nurses and two types of community health workers: field supervisors and directly observed therapy (DOT) volunteers. To complement our quantitative data collection in 2008 using purposive sampling, we conducted two gender-mixed focus group discussions with 13 CASA patient participants and 13 DOT volunteers from Lima, Peru to identify the mediating mechanisms by which CASA improved well-being, and to understand the benefits of the intervention, as perceived by these individuals. Using standard qualitative methods for the review and analysis of transcripts and interview notes, we identified central themes and developed a coding scheme for categorising participants’ statements. Two individuals blinded to each other’s coding, coded interview transcripts for theme and content from which a third reviewer compared their coding to arbitrate discrepancies. Additional domains were added if necessary and all domains were integrated into a theoretical scheme. Among the forms of support delivered by the CASA team, DOT volunteers reported emotional support, instrumental support, directly observed therapy, building trust, education, advocacy, exercise of moral authority and preparation for transition off CASA support. CASA participants described outcomes of improved adherence, ability to resume social roles, increased self-efficacy, hopefulness, changes in non-HIV-related behaviour, reduced internalised and externalised stigma, as well as ability to disclose. Both sets of focus group participants highlighted remaining challenges after completion of CASA support: stigma in the community, difficulties achieving economic recovery and persistent barriers to health services. Based on our prior quantitative and qualitative outcomes reported here, we argue that DOT of highly active antiretroviral therapy could be designed to optimise psychosocial recovery during the period of DOT.

Keywords: antiretroviral therapy, community-based, DOT, HIV, psychosocial, qualitative

Background

Directly observed therapy (i.e. the administration of medication doses under direct supervision or DOT) was introduced to address adherence issues within tuberculosis (TB) control programmes and has been used for decades to improve adherence and improve treatment around the world (Weis et al. 1994, Chaulk & Kazandjian 1998). Programmatic and research experiences suggest that DOT may also be effective when applied to highly active antiretroviral therapy (DOT-HAART) (Hart et al. 2010).

The application of DOT-HAART varies widely, in terms of target populations; frequency, duration and site of DOT; and additional support provided within DOT encounters or as associated services. In the United States and other resource-rich settings, DOT-HAART has most commonly targeted vulnerable individuals, such as prisoners (McCance-Katz et al. 2002, Conway et al. 2004, Lucas et al. 2006, Altice et al. 2007, Macalino et al. 2007), drug users (Behforouz et al. 2004a, Elzi et al. 2006, Machouf & Lalonde 2006), and those with prior HAART non-adherence (Behforouz et al. 2004b, Foisy & Akai 2004, Pearson et al. 2006, Smith-Rohrberg et al. 2006, Altice et al. 2007, Mitchell et al. 2007). Programmes incorporating DOT vary from ‘minimalist’ to comprehensive packages of adherence support. The TB literature refers to ‘enhanced DOT’ as those programmes that provide multiple incentives and enablers in addition to DOT, including social and economic support and⁄or supplementary services, such as substance abuse therapy, housing, case management and referrals for other social services (Chaulk & Kazandjian 1998). There are numerous examples of enhanced DOT-HAART programmes, in which programme workers or multidisciplinary teams provide additional adherence support, such as counselling, case management and referral to other services (Bradley-Ewing et al. 2008).

Despite the variation in DOT-HAART programmes, a consistent observation reported across many projects is that ‘the process commonly known as DOT is in fact a complex social process’ (Behforouz et al. 2004a, p. S435). In addition to the direct supervision of pill-taking, the impact of DOT on adherence behaviour is likely mediated by other complex pathways (Garland et al. 2007). Most DOT-HAART projects have described the importance of social support and trust in the relationship between DOT worker and patient (Wohl et al. 2004). Garland et al. (2007) found that patients described the most positive aspect of DOT-HAART to be the ‘support, attention, concern and friendship’ provided by community health workers. Authors felt that home-based DOT strengthened these relationships by allowing community workers to deeply understand and engage in the participant’s social environment (Wohl et al. 2004). Similarly, Smith-Rohrberg et al. (2006) felt that strong interpersonal relationships between DOT-HAART providers and participants increased successful participant referrals to ancillary services. The importance of establishing trust and providing social support as part of the DOT process has also been highlighted by Mitty et al. (2003). In the United States, Haiti, Rwanda, Lesotho, Peru and elsewhere, we have provided community-based accompaniment with DOT-HAART (Behforouz et al. 2004a,b). This accompaniment model utilises paid lay health workers, ‘accompagnateurs’, to perform twice-daily home-based DOT. A common observation across these settings is that social support is an integral component of this adherence intervention (Mukherjee et al. 2006, Munoz et al. 2010b). A DOT-HAART programme in Mozambique reported similar findings; participants identified informational and emotional support from HIV-positive peers as an important form of support, in addition to the DOT itself (Pearson et al. 2006).

The supportive relationship between DOT workers and patients may not only reduce antiretroviral therapy (ART) attrition and improve adherence, but may also result in additional psychosocial benefits. Macalino et al. (2004) observed additional benefits of DOT beyond adherence, including decreased substance use and increased disclosure of HIV status. The positive motivational and behavioural influences of DOT described by participants in an ongoing trial – Project MOTIV8 – contributed to improved overall psychosocial well-being, including diminished hopelessness and better mood (Bradley-Ewing et al. 2008).

Although DOT as a form of social support is described by all of the above groups, the mediating mechanisms of DOT on adherence and the additional impacts of DOT beyond adherence outcomes remain poorly understood. Project MOTIV8 has reported qualitative data exploring the additional impacts of DOT-HAART beyond adherence – increased motivation to seek social support and community involvement, greater ability to communicate with providers and increased engagement with their overall health (Bradley-Ewing et al. 2008). To our knowledge, however, there are no published data formally assessing the mediating mechanisms of DOT exchanges.

In Lima, Peru, we delivered a comprehensive adherence intervention that provides community-based accompaniment with supervised antiretroviral therapy (CASA) to impoverished individuals starting HAART for the first time. Although the model was adapted from other Partners In Health sites, including Haiti and Rwanda, it differed in being a finite intervention lasting 18 months. Our intervention was grounded in the stress-buffer theory of social support, Figure 1 (Gore 1981, Cohen & McKay 1984). We hypothesised that community-based DOT-HAART could serve as a form of social support and improve health outcomes by mitigating the stressful effects of illness. Social support diminishes a person’s perception of the stress threat, improves coping capacity and lessens the emotional and physical toll due to the stressor (Carrico et al. 2006). Coping refers to strategies employed in the face of stressors, such as help-seeking behaviours or cognitive restructuring (Skinner et al. 2003). The ‘stress and coping paradigm’ states that appraisal – how a person interprets a difficult situation – is key in determining how stressful a situation is. In addition to primary appraisal (determining whether the situation is purely a ‘threat’ or, rather, a ‘challenge’ that can be overcome), secondary appraisal involves assessing the personal and social resources available to cope with the situation (Lazarus & Folkman 1984). We designed an adherence intervention that provided comprehensive community-based support in addition to DOT-HAART. The goal of this support was to help develop coping skills among patients and strengthen personal and social resources with the ultimate aim of improving HAART adherence and overall psychosocial well-being (Ironson et al. 2005, 2006, Gray 2006, Littlewood et al. 2007, Vyavaharkar et al. 2007).

Figure 1.

Figure 1

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Stress buffer theory of DOT.

Participants receiving CASA experienced better clinical and psychosocial outcomes compared with matched controls, including an increased likelihood of achieving virologic suppression at twelve and 24 months; as well as greater improvements in social support and reductions in HIV-associated stigma (Munoz et al. 2010b). To complement our quantitative findings, we conducted qualitative research to identify the mediating mechanisms by which CASA improved well-being, and to understand the benefits of the intervention, as perceived by participating patients and health promoters.

Methods

A team of community health workers delivered CASA support to 95 adults and 13 children starting antiretroviral therapy. Adherence support was provided by a community-based team comprised of several nurses and two types of community health workers (CHWs): field supervisors and 36 DOT volunteers. Field supervisors were employed by our Peruvian non-governmental organisation, Socios En Salud, and worked with nurses to coordinate follow-up appointments, communicate patient issues to providers, and monitor DOT. Volunteers for DOT were identified by Ministry of Health establishments and were responsible for supervising all HAART doses in patients’ homes (unless requested elsewhere by the patient) and were compensated with monthly food baskets. Both groups of CHWs screened patients and family members for clinical symptoms related to HIV and TB, and delivered emotional support and health education. The support lasted 18 months, with DOT during the first 12 months. Overlapping with DOT, individualised support based on patient need (i.e. microfinance support, peer support groups) was provided to a subset of participants during months 6 through 18. Throughout the intervention, patients also received comprehensive support, including financial aide for diagnostic tests and medications, transportation and nutritional support, as needed. More details of the intervention are described elsewhere (Munoz et al. 2010b).

We conducted two focus group discussions using semi-structured, open-ended questions. The objectives of the focus groups were to identify perceived forms of support provided by the CASA intervention, as well as the perceived benefits and outcomes achieved as a result of the intervention. Questions for each focus group were prepared prior to the sessions and reviewed by the team. Focus groups were conducted 18 months into the project, when CASA participants had transitioned off DOT-HAART. We deemed larger groups permissible for these focus groups because CASA participants had met in similar groups to discuss other study-related issues, with successful participation by all members. The two groups consisted of 13 gender-mixed patients (all CASA participants) and 13 DOT volunteers, respectively. One HIV-positive female, who received CASA support and also worked as a DOT volunteer, participated in both groups. We performed purposive sampling to identify participants that would represent a range of patients (i.e. gender, age) and volunteers (i.e. duration of experience as a volunteer, age). In addition, we opted for participants who would be likely to speak openly in a small group. The project coordinator identified and approached candidates to participate. Interviews were led by an investigator trained in conducting focus group discussions. Both the facilitator and an observer took notes. Questions explored initial impressions toward the programme, changes in attitude during participation, forms of support provided by the programme, challenges living with HIV, and experiences of HIV stigma (see Boxes 1 and 2). The sessions, lasting 1–2 hours, were tape-recorded. Interviews were transcribed in Spanish, and reviewed by the facilitator to confirm accuracy.

Box 1. Patient Interview Guide.

Patients

  1. Tell me a little about your initial impressions of the CASA program? Did you have any doubts or reservations toward the project? What did you think about the idea of a DOT volunteer?

  2. How did the CASA team help you? What were the types of support that were most important?

  3. How did your attitudes toward your illness change after being in CASA? Has your emotional state changed? Have your relatives’ attitudes changed? Do you think that the behaviour of the medical professionals have changed?

  4. What was the process of leaving the CASA program like? What were some of the most difficult challenges that you have had since starting ART? What do you think will be the most difficult challenges in the future?

  5. Can you tell me a little about HIV stigma that you’ve experienced? Do you think that the accompaniment of the CASA team has changed the level of stigma that you feel?

  6. Would you have any suggestions for the project? And the most valuable aspects of the project?
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Box 2. DOT Worker Interview Guide.

DOT workers

  1. Tell me a little about your initial impressions when you began to work as DOT volunteers in the CASA program?

  2. How did the patients respond to you?

  3. What are the most important types of support that you provide to the patients and their families?

  4. How has your attitude toward HIV ⁄ AIDS changed since working with this project? Did you have to confront any pre-conceptions, stereotypes, or stigma toward HIV in yourselves? How have the patients’ relatives and health workers dealt with HIV stigma?

  5. What was the process of leaving the CASA program like for the patients? What were some of the most difficult challenges that your patients have had since starting ART? What do you think will be the most difficult challenges for them in the future?

  6. Would you have any suggestions for the project? And the most valuable aspects of the project?
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Analysis

Transcripts and interview notes were analyzed using standard qualitative methods (Strauss & Corbin 1998, Tashakkori & Teddlie 2003). Based on a review of interview transcripts, we identified central themes and developed a coding scheme (a set of distinct and precisely defined themes for categorising focus group participants’ statements). Interview transcripts were coded for theme and content by two individuals who were trained in ethnographic methods and blinded to each other’s codes (SSl, AC). Codes were compared by a third reviewer (SSh) who arbitrated discrepancies. Throughout the process of coding the transcripts, additional domains were added if necessary. Domains were integrated into a theoretical scheme, and results of the data were analyzed to test hypotheses and refine our understanding of mechanisms by which DOT-HAART provided support to CASA participants. Quotes were translated from Spanish to English, then back-translated to Spanish by two bilingual individuals, and compared to the original quote to ensure that the meaning and imagery of the language was captured.

We obtained ethical approval from Institutional Review Boards at Partners Healthcare and the Instituto Nacional de Salud in Peru. Written informed consent provided by all CASA participants included consent to participate in group and⁄or individual interviews, if invited. In addition, we obtained verbal consent for each invited participant in order to ensure that there was no perceived or possible coercion. When each participant was invited to attend the group interview, the purpose and structure of the interview was explained, as well as the fact that participation would not affect CASA support. At that time, we asked each participant to confirm if they would be interested in attending. At the beginning of the meeting, oral consent for participation was again obtained using a written script. All individuals agreed to participate in focus group discussions.

Result

Among the 13 patient participants, nine were women and the mean age was 32 years. Approximately half of the individuals reported having gone at least 1 day without food, and two-thirds were unemployed. There were no significant differences in the characteristics of focus group participants, compared with other CASA participants. Most of the community health workers were women, 12 of the 13 participants, with a mean age of 46 years. The community health workers had worked on average for 5 years as a health promoter, and for 2.5 years providing DOT-HAART.

We identified 19 themes, summarised in Table 1. Among the forms of support delivered by the CASA team, participants reported the following: emotional support, instrumental support, directly observed therapy, building trust, education, advocacy, exercise of moral authority (Nachega et al. 2006) and preparation for transition off CASA support. The impact of CASA support identified by participants included: improved adherence, ability to resume social roles, increased self-efficacy, hopefulness, changes in non-HIV-related behaviour, reduced internalised and externalised stigma, as well as ability to disclose. Focus group participants also highlighted remaining challenges, after completion of CASA support: stigma in the community, difficulties achieving economic recovery and persistent barriers to health services.

Table 1.

Description of themes

Theme Description
Forms of intervention support
 Instrumental support Coordination for appointments; accompaniment to appointments; material assistance for transportation, food, medications; help with personal responsibilities such as child care, cleaning, fixing food
 Emotional support Encouragement, listening to problems, providing friendship and/or confidant support (‘like a sister/mother to me’）
 Directly observed therapy Direct supervision of HIV and non-HIV medications
 Build trust of patients and family Reassurance to patients and families of confidentiality and commitment, utilisation of strategies to overcome disclosure concerns related to home visits
 Education Education of patient and/or family members regarding HIV, medications, adherence and other health-related topics
 Exercise of moral authority Prescriptive advice from health promoter based on authority as caretaker (‘this is what is best for you’)
 Advocacy Speak with providers, family and community members on behalf of patient, in order to obtain better health services, emotional or instrumental support, etc.
 Prepare for transition to self-administration Work with patient to develop coping strategies for successful self-administration, remind patients of transient role of health promoter, involve family members to strengthen adherence support as DOT-HAART nearing completion
Outcomes
 Improved adherence Ability to adhere to HIV treatment, including medications and appointments
 Resumed social roles Recovery of social role, including parenting, work, studies
 Increased self-efficacy Confidence in own ability to engage in care, adhere to treatment, take responsibility for own health
 Hopefulness Hope and optimism for the future, setting future goals and dreams
 Change in non-HIV-related behaviour Changes in non-HIV related behaviour, for example, substance use, interactions with others, maturity, physical appearance
 Reduced externalised stigma Decreased enacted stigma by family, friends, providers, others
 Reduced internalised stigma Improved self-esteem, diminished internalised stigma, feeling of worth
 Disclosure Ability to disclose to family members and/or friends
Remaining challenges
 Stigma in community Enacted and perceived stigma by family, friends, providers, others
 Economic recovery Persistent challenges in finding work, overcoming poverty
 Barriers to health services Persistent difficulty accessing adequate health services, including TB and/or HIV care
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Instrumental and emotional support

Both CHWs and patients cited instrumental and emotional support most frequently. Instrumental support included formal responsibilities of CHWs (e.g. accompaniment to appointments) and material support provided as part the intervention (e.g. food baskets, medications, analyses). In addition, many CHWs provided additional support from their own resources, such as babysitting and food. The following data extracts illustrate this:

They don’t have a DNI (national identity document), ‘Let’s get it for you.’ ‘No, senorita, I don’t have money.’ ‘We’ll do a raffle. Come on! I’ll sell the tickets, and then we’ll be able to get your DNI.’ In this way, I’ve helped them.

– Angela, community health worker

They helped me a lot, in analyses, in many things that I needed. Sometimes, I didn’t have anything to eat, and they gave me food. They were there.

– Margarita, patient

My greatest worry is that she sometimes didn’t have anything to cook. ‘My dad wants to send me away because he’s ashamed that I’m so skinny. It makes him ashamed when I leave the house,’ she tells me. And that’s when I decided if I have the means to give her a little [alcanzarle un poco], I’ll do it… I would go to the market and buy a kilo of lentils, half kilo of liver, and bring it to her house for her to cook.

– Maribel, community health worker

Community health workers often described emotional support as a form of solidarity, patients as ‘one of ourselves’. Patients described CHWs as friends or compared them to family members, and relationships were often felt to be mutually supportive as the following extracts demonstrate:

A hug that you give to these people, a word of encouragement (aliento), and they are happy. They don’t reject you, on the contrary. So, give them a hand, touch them (acariciarles)… They must be treated like people, like one of ourselves.

– Malena, community health worker

‘You’re like my sister’ and she began to tell me things, about her family problems, her drunk brother who wanted to abuse her daughter. And that’s where I was able to begin to work with her.

– Maribel, community health worker

I began to talk with him, he would talk with me and I would tell him my stories (contaba mis cosas). I even said, ‘Let’s go out. I’ll invite you to have lunch one Sunday.’ And we became good friends. We came to understand each other very well.

– Enrique, community health worker

Building trust

Both CHWs and patients described initial barriers of mistrust. In spite of being told that there would be no incurred costs to them or their family, some patients and family members still suspected the programme would later charge patients for its services. Another concern was regarding loss of confidentiality due to home visits. By working to form trusting relationships and accommodating patient preferences regarding DOT encounters (for instance, coming only at certain times of day or meeting in a nearby park), community health workers were gradually able to overcome these initial concerns:

My husband said, ‘Why are you bringing so many people, so that everyone can find out about your illness? Don’t let them come! If they come, kick them out into the street! What an embarrassment! What are people going to say about our children?’ … Just then, my … [DOT worker] arrived with my pills. ‘Señorita, this is how they are treating me.’ So Señora Jessica and Betty [community health workers] spoke with [my family] like 20 times until, finally, they understood.

– Olga, patient

Jessica would come, interview me, very friendly, but I said, ‘With what intention?’ Still more …[people] came, and they were more concerned than my own family… [My wife] said, ‘Maybe they’re going to charge you.’ One year passed, and nothing. The help kept coming, for many things, analyses, everything. That was my doubt, but little by little I overcame it.

– Julio, patient

One always has to search to find a way so that the patient will really say, ‘yes, this woman can be trusted. I will trust her.’ And that’s how it happened. Little by little, they trusted me, they confided in me, they spoke with me about so many experiences: how they became infected, or why it happened this way.

– Angela, community health worker

Community health workers as providers

Community health workers were providers of: Advocacy, Moral Authority and Preparing for Self-Administration.

Other forms of support were emphasised more by CHWs than the patients themselves. Community health workers were more likely to identify themselves as formal providers than patients. They viewed their DOT role as part of the formal health-care team and were careful to build therapeutic patient-provider relationships, along with the friendships and surrogate family relationships they often established. In addition to DOT, activities that reflected community health workers’ self-perceived identity as providers included advocacy and the use of moral authority. Because medical providers and community members often treated community health workers with greater authority and respect than patients and family members, CHWs often intervened on behalf of patients to advocate for less stigmatising treatment, better medical care and additional material resources. Both CHWs and patients observed that health-care providers who ignored or mistreated patients would change their behaviour when patients were accompanied by a community health worker as these data extracts show:

There’s someone backing you up (hay un respaldo), and [the health personnel] feel obliged and are finally mobilized…

– Maria, patient

In the emergency room, it’s the worst! Truly, if one doesn’t speak up, if there’s no one to advocate for you, you die.

– Rebeca, patient

Personally, I’ve taken the social worker to their house so that they would insure the children.

– Maritza, community health worker

Community health workers also assumed a role of moral authority in advising patients, particularly when their rapport as a community peer or surrogate family member was insufficient to influence behaviour changes in the patients and family members. A person with moral authority is defined by Nachega et al. (2006) as

the person to whom patients give the power to influence their decision making about their health.

(p. S132)

This power may be grounded in an existing relationship (e.g. moral authority of a parent of a child) or, in the case of health promoters, is likely due to the CHW’s institutional role within the health-care team. In South Africa, treatment supporters designated by the patient are responsible for providing adherence support. Nachega et al. found that having this form of authority over the patient was an essential quality for the treatment supporter. Our community health workers also described exercising this form of authority, although patients were more inclined to describe the CHW’s role as that of a supportive friend, rather than one of authority:

You’re my ‘adopted daughter,’ but I want you to behave yourself. I don’t want you making problems for me (que me hagas desarreglos). I want you to always take your medications.

– Angela, community health worker

Sometimes I have to make myself more, how would you say, drastic, because [she would say], ‘No, I want to die… I just want to leave because I’m tired of this problem. All my life, I’m going to be pressured to take medicine. What am I going to do?’ ‘It’s for your own good,’ I tell her. ‘What good it is for me to tell you this, if you’re going to do yourself harm? The effort that I’m making is for your own good. Do it for your daughter. Your youngest daughter needs you.’

– Maribel, community health worker

Although patients did not explicitly describe the process of preparing for the end of CASA, community health workers were mindful that this was a finite intervention. They described working with patients to develop goal-setting and coping skills to enable future successful adherence to HIV treatment. Community health workers felt such work was necessary to strengthen patients’ capacity for self-efficacy and to ensure that patients did not become dependent on CASA support.

We know that this isn’t forever. There’ll be a limit. [We’re] always educating them so that when we leave them, they are prepared, adherent, not only with their medications, but also with their appointments and their nutrition, and above all, controlling their emotional state.

– Felipa, community health worker

I’ve always told them that this [support] would end so that there wouldn’t be problems later on, because over time, they had to figure out how to cover their transportation for appointments, for extra things that they need… I’ve always worked on this…. I’ve taught them, ‘don’t just learn to receive, learn to overcome [problems] on your own, because this is only momentary, for the time being.’

– Malena, community health worker

Psychosocial recovery: resuming social role and self-efficacy

Both patients and CHWs shared the impression that the impact of CASA support extended beyond medication adherence. While most CHWs felt that successful self-administration of medications was an important outcome of the intervention, few patients mentioned adherence, but rather highlighted their improved psychological and socioeconomic well-being. Many individuals were unable to work, provide for their dependents, or engage in relationships due to their illness, and described the ability to resume important social roles as an important achievement. Community health workers also described this as a fundamental component of recovery.

I’ve learned to be more of a mother. I share time with my children. I go out with them. I give my time to them, checking their homework. I also work.

–Olga, patient

I said, ‘I want this to be the last day that you say I’m sick. I’m like any normal person, like you all. Or do you still see me lying in bed, not doing anything?’ And from then on to this day, my brothers don’t say anything. I live happily. They understand me. We joke about it, but before, it was something else.

– Susana, patient

She began to feel more responsible, began to leave the house, and started to work. That’s when she felt more liberated.

– Maribel, community health worker

Related to improved adherence and ability to resume social roles are an increased sense of self-efficacy and hopefulness. Although these themes were related, we defined self-efficacy as patients’ confidence in their ability to adhere to HIV treatment, including medications and appointments. Hopefulness related to patients’ expression of optimism in achieving personal goals in the future.

Thanks to everyone, I feel well, I feel confident in all of my treatment, whatever is to come. I am thankful because they have given me hope.

– Olga, patient

‘Why should I take pills if I’m going to die anyway?’ That’s the response of the patients. But because I would go, little by little I educated and taught that they have a diagnosis, and that no one is declaring you a lost cause (desahuciado). They start accepting, and then in another month, they tell me, ‘Yes, I’m going to realize my goals.’

– Felipa, community health worker

Decreasing stigma

Patients described how CASA support decreased stigma – both internalised and externalised, although health promoters described this phenomenon less frequently. Despite initial concerns that CHWs and home visits might introduce additional stigma and rejection in their household and community, on the contrary, patients found that CHWs both directly (through advocacy) and indirectly (as role models) began to influence the behaviour of family, neighbours and health personnel. Some CHWs described changes in their own attitudes, as they gained insight into the lives of HIV-positive patients. They admitted that they often confronted their own preconceptions of individuals living with HIV⁄AIDS and gained deeper empathy for their patients.

Most of all, for those of us who have had the support of … [the DOT team], they have made us more conscientious … Now we are moving on, we have goals, to work, to move forward. We’ve realized that we are worth a lot (valemos mucho), we’re useful and we are still important.

– Maria, patient

They arrived with a food basket, and people were saying ‘Look!’ They smothered me with hugs (apachurraban), and I asked myself, ‘They’re not disgusted by me?’… I have various neighbours in front, next to me, and everyone watched me. I was the envy! And I was so happy!

– Hilda, patient

[My family] didn’t care about me (no me querian), until a promoter was really good to me. She would come [and say], ‘Janeth, I’m inviting you to have some soda. Let’s drink together.’ She motivated my family. She hugged me, gave me affection, while my family didn’t hug me. My father and mother were surprised!… Sra Betty would come and hug me, and I’d invite her to eat, and we’d eat together, sharing. My dad and brothers were surprised. I told them, ‘[The health promoters] like me more than you.’ And little by little, they began to understand.

– Susana, patient

Remaining challenges

Finally, despite the impact of CASA, both patients and CHWs described areas of persistent frustration including barriers to health services and challenges related to stigmatising practices by family members, community members and health-care providers. In addition, promoters felt that a proportion of their patients still struggled to find work and achieve economic stability, despite physical recovery.

There are some families that are sometimes negative. Sometimes they listen to us, and this has happened to all of us, they listen to us for a while, but, after, they marginalize the patient.

– Isabel, community health worker

The woman [at the TB programme] doesn’t supervise you when you take your meds. They just give it to me and say, ‘go outside and take it!’ On top of being ‘code white’ [medical code for HIV-positive], you have TB. They reject you.

– Susana, patient

For example, Giovanna lives on the hill and I know her husband. He sells fried wings. I know him because we live in that zone. If people knew about his diagnosis, they wouldn’t buy from him, not because of ignorance but because of misinformation.

– Felipa, community health worker

Many [patients] were identified when they were hospitalized and needed help because they were underweight and sick. Now, they have recovered and are working. But there are patients that… how? For example, with Jessica, I ask myself, if [Socios En Salud] stops her support, how is she going to survive?

– Felipa, community health worker

Discussion

In this cohort of impoverished Peruvians living with HIV⁄AIDS, we identified key components of community-based accompaniment. Social support – both instrumental and emotional – was cited most frequently as an important aspect of the intervention. Although DOT has been used as an adherence intervention for many decades in TB and, more recently, in HIV, the theoretical underpinning of its mechanism of action has not been explored. Our findings are consistent with the stress-buffer hypothesis of social support (see Figure 1). Community-based DOT represents a series of encounters in the patient’s own environment that permit DOT workers to form trusting relationships and provide social support. This support not only improves pill-taking but, perhaps more importantly from the participants’ perspectives, builds coping skills and decreases stress, in turn resulting in improved psychosocial well-being.

We found that community health workers had complex relationships with their patients, often becoming close friends or surrogate family members, but also retaining some degree of authority as a health-care provider. To achieve their goals, they utilised strategies such as working to gain the trust of patients and family members, exercising moral authority and preparing the patient for independence as they transitioned off CASA support. As both peers and providers, CHWs often leveraged the different aspects of these relationships as needed to bring about behaviour change in the patients.

One concern of DOT-HAART that has been raised by critics is the concern that home visits by community health workers may be unacceptable to patients due to issues of stigma and confidentiality (Liechty & Bangsberg 2003). Some patients and family members did have initial concerns. Community health workers had to be flexible, supportive and persistent in order to find ways to gain acceptance. However, once they gained the trust of patients and established an acceptable DOT routine, CHWs were able to reduce both internalised and externalised stigma through frequent exchanges with patients and household members. In our pilot, all patients accepted DOT. These results suggest that hesitation and resistance to DOT among patients and family members should not preclude the intervention. On the contrary, the active process of overcoming these concerns could be an effective means of reducing stigma and have profound additional impact beyond direct effects on adherence. Our findings are consistent with other studies which have shown CHW support to be acceptable to patients (Castro 2005, Katamba et al. 2005, Kumarasamy et al. 2005, Ciambrone et al. 2006, Garland et al. 2007).

Interestingly, DOT and medication adherence were highlighted more frequently among CHWs, compared with patients. The patients tended to focus more on psychosocial benefits, such as resuming social roles, strengthening self-efficacy and gaining hope for the future. Community health workers also identified these psychosocial outcomes, but – unlike patients – contextualized them as requisites for being able to sustain treatment adherence. These differing perspectives suggest that holistic social support provided in enhanced DOT programmes could serve several purposes. Patients may be more likely to embrace such comprehensive programmes, and community health workers may be better positioned to work with patients to improve adherence and social well-being.

Finally, both community health workers and patients acknowledged that persistent challenges remained. These reflected community-level problems, such as persistent stigma, as well as barriers to economic recovery and accessing health services. Community health workers described trying to work with patients to overcome these examples of structural violence, with varying degrees of success (Farmer et al. 2006). Because the intervention was finite, we were unable to address all of the challenges faced by patients. On the other hand, many patients were able to regain economic stability and resume their social roles as family and community members. It is possible that finite DOT-HAART alone may be inadequate for those with profound economic or psychosocial impediments, and that longer and more intensive support is needed for the most vulnerable patients.

Our study is limited in several respects. One draw-back to the use of ethnographic methods is that they often rely on the use of a small, non-randomised sample. This is true in the study reported here. Although participants were chosen to be representative of their groups, we did select individuals likely to participate, which could bias our findings. Furthermore, we only conducted two large focus groups, although we observed balanced participation among attendees. However, our results triangulate with our quantitative findings described elsewhere (Munoz et al. 2010a). Although many of the outcomes described could be attributed to recovery on ART, and not community-based support, we coded these outcomes only when we felt that the speaker attributed the outcome to the intervention. We recognise that our findings are not generalizable to all DOT-HAART interventions since our pilot provided comprehensive support.

Despite these limitations, our findings contribute to the growing effort to understand exactly how some enhanced DOT-HAART programmes work. Our findings support the stress-buffer theory that comprehensive community-based DOT-HAART may mitigate stress and increase coping capacity as a means of facilitating clinical and psychosocial recovery. We found that community health workers delivered multi-faceted forms of support, some of which emphasised informal aspects of social support as peers and close confidants, whereas others reflected the more formal, therapeutic role of DOT volunteers as members of the health-care team. Community health workers are often strategic in utilising these different roles to influence patients, family members, medical personnel and community members.

Given the paucity of evidence that DOT-HAART has any durable effect beyond the DOT period (Maru et al. 2009), we argue that DOT-HAART might best be utilised as a platform for broader ‘wrap-around’ support that could be designed to optimise psychosocial recovery during the period of DOT (Behforouz et al. 2004b, Bradley-Ewing et al. 2008). Given growing recognition that community health representatives play an important, efficacious role in HIV care (Campbell & Scott 2009, Hermann et al. 2009, Wringe et al. 2010), comprehensive, community-based DOT-HAART might have the best chance of achieving lasting effects on clinical and psychosocial well-being.

What is known about this topic.

  • Directly observed therapy (DOT) is widely used for TB management and is being increasingly used for antiretroviral therapy (DOT-HAART).

  • Unlike other adherence interventions, DOT was not developed within a theoretical framework.

  • Little is known about the mechanisms of DOT efficacy and the psychosocial impact of DOT beyond adherence behaviour.

What this paper adds.

  • We found that both patients and DOT workers identified social support as the most important component of community-based DOT-HAART.

  • DOT-HAART mitigated the impact of stigma, strengthened self-efficacy and enabled patients to resume social roles.

  • DOT workers leveraged their dual relationships as confidants and health authorities to promote behaviour change.

Acknowledgements

We thank the community health workers and patients, for their perseverance in the face of adversity. We would like to the acknowledge the Office for AIDS Research at the National Institutes for Health; the Eleanor and Miles Shore Fellowship at Harvard Medical School; David Rockefeller Center for Latin American Studies at Harvard University, and Partners In Health for support of this project.

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