A Qualitative Study of Roles Performed by Peer Workers in the Context of HIV in India

A Qualitative Study of Roles Performed by Peer Workers in the Context of HIV in India Rebecca de Souza, PhD While peer interventions have been shown to be effective in HIV prevention and support amongst intravenous drug users, women, youth, and other high-risk populations, less is known about the particular roles peers play in disenfranchised and nonWestern contexts. This study examined the various roles peer workers played in the context of HIV in Karnataka, a southern Indian state. In-depth interviews were conducted with HIV-infected peer workers engaged in providing counseling, outreach, and health education to other people living with HIV. Grounded analysis revealed five roles: role model, persuader, maven, going the extra mile, and microlevel advocacy. In the Discussion section, these roles are used to explore the relationship between peer work and empowerment. Findings showed that in addition to personal empowerment, peers were crucial to building social capital and challenging existing social norms in the community. (Journal of the Association of Nurses in AIDS Care, 25, 176-187) Copyright Ó 2014 Association of Nurses in AIDS Care Key words: AIDS, empowerment, HIV, India, peer roles, peer work, social support

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etween 2008 and 2009, there were approximately 2.4 million people living with HIV (PLWH) in India, with a national prevalence rate of 0.31% (Joint United Nations Programme on HIV/AIDS [UNAIDS], 2009; National AIDS Control Organization, 2011). According to the National AIDS Control Organization (2011), the HIV problem in India is linked with poverty, stigma and discrimination, and gender inequalities. Low literacy skills and lack of exposure to good health information mean that people remain unaware of risks

and, once infected, cannot access health care. Infected people face stigma and discrimination from their families, the larger community, and health care providers (UNAIDS, 2009). Women are especially vulnerable because male-dominated structures and social arrangements confer men with certain unspoken freedoms such as the freedom to have sex with multiple partners. Single-partner heterosexual sex with their husband is the primary HIV risk factor for women in India (Gangakhedkar et al., 1997). Since the mid-1990s, there has been an ongoing mandate for greater involvement of PLWH in battling the spread of HIV, supporting those living with the disease, and fighting stigma and discrimination (Global Network of People Living with HIV/AIDS, 2005; UNAIDS, 1999). This is consistent with the public health agenda set in motion by the 1986 Ottawa Charter for Health Promotion, which stated: ‘‘At the heart of this [health promotion] process is the empowerment of communities, their ownership and control of their own endeavors and destinies’’ (World Health Organization, 2012, p. 3). Responding to this call for increased participation of people in their own health care, local organizations working on HIV issues in India have started to train HIVinfected people, or peers, to provide outreach, education, and counseling. While peer interventions have been shown to be particularly effective in HIV prevention and support with interventions established worldwide for intravenous drug users, women, youth, and other high-risk populations (Molassiotis et al., 2002; Wolf & Bond, Rebecca de Souza, PhD, is an Assistant Professor, Department of Communication, University of Minnesota, Duluth, Minnesota, USA.

JOURNAL OF THE ASSOCIATION OF NURSES IN AIDS CARE, Vol. 25, No. 2, March/April 2014, 176-187 http://dx.doi.org/10.1016/j.jana.2013.01.004 Copyright Ó 2014 Association of Nurses in AIDS Care

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2002), less is known about the particular roles played by HIV-infected peers in disenfranchised settings. This study thus asks the question: What are the roles peer workers play in resource-poor settings? A role may be defined as a meaningful grouping of behavior or gestalt recognized by the self and other, which emerges when actors create and discover consistent patterns of action (Turner, 1962; 1978). Using peer roles as a starting point, the discussion elaborates on how HIV-infected peer workers who operate in an environment of social and material constraint experience personal power and how this translates into community empowerment. The study has practical implications for the design and development of peer interventions. Peer work is fast becoming a central feature of HIV prevention and support in the developing world and there is need for more contextualized knowledge about people who participate as peers in informal settings so as to enhance peer programs.

The Peer Approach, Roles, and Role Perceptions The peer approach is based on the assumption that individuals recruited from within a particular group will have similar backgrounds and experiences, which will enable them to provide support to other group members (Dickson-Gomez, Weeks, Martinez, & Convey, 2006). Individuals engaged in peer interventions have been given diverse titles such as peer counselors, influentials, lay health advisors, indigenous natural helpers, health care workers, and community outreach workers. Derived from Gladwell’s (2000) work as well as several areas of psychological, sociological, and communication theory, Boster, Kotowski, Andrews, and Serota (2011) identified three defining characteristics of influentials: (a) knowledgeable in the sphere in which they exert opinion leadership (the maven trait); (b) well-connected socially (the connector trait); and (c) effective at presenting their knowledge, thus able to influence others in a desired direction (the persuader trait). Peers provide an advantage over professional caregivers for several reasons. They are able to develop trusting relationships with others because of similar life experiences and empathic communication

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(Broadhead, Heckathorn, & Grund, 1995). They are more successful at reaching disenfranchised individuals who exist outside of the formal health care system (Hartman, Radin, & McConnell, 1992) and, according to Rogers (2003), peer educators serve as informal opinion leaders who tailor messages to the unique needs and cultures of a social group, thereby stimulating a diffusion of innovation process. Roles and role perceptions of peers in contexts relevant to HIV have been explored to a limited extent in Western and non-Western contexts. Hilfinger Messias et al. (2009) conducted in-depth interviews with six women trained as HIV peer counselors in a community-based program in the rural southeastern United States. They found that the work of HIV peer counselors was constructed around personal identities and experiences, and where relationships were built with clients by telling their own stories and creating a safe space for clients to communicate. In the context of India, Alcock and colleagues (2009) explored the role perceptions and experiences of 24 female peer educators or ‘‘sakhis’’ (literally, female friend) involved in a community-based maternal health intervention in the urban slums of Mumbai. Central to the sakhis’ role perception was the notion of being a friend. Interestingly, none of the women saw themselves as health educators, and most acknowledged that their levels of health knowledge were limited, describing themselves as a resource rather than a source of knowledge. Strike, O’Grady, Myers, and Millson (2004) explored outreach workers’ role perceptions in needle exchange programs in Ontario. They found that most had a well-defined sense of the activities they considered to be professional, and only a few workers ever crossed the line between private and professional lives. However, ‘‘going the extra mile’’ was the norm amongst the workers, who often made home visits and testified in court for clients. Dhand (2006) examined the interaction patterns that occurred between peer educators and clients in the course of outreach work with injecting drug users in New Delhi, where he uncovered three role relationships: counselor-client, doctor-patient, and role model-follower. The study reported here continues this trajectory of research exploring peer roles in the specific context of HIV support in India.

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Methodology In-depth interviews were conducted with 31 HIV-infected peer workers (13 male and 18 female) engaged in various HIV prevention and support activities in the state of Karnataka, South India. Participants were recruited through existing contacts with nongovernmental organizations (NGOs) working on HIV issues in the region. Specific criteria for inclusion were HIV-infected individuals, ages 18 years or older, and involved in counseling, outreach, or health education work. Information about the study was spread through word of mouth. Participants were a self-selected group of individuals who responded to the call. The institutional review board of the affiliated University approved all procedures and protocols used in the study. Both verbal and written informed consent was obtained. Participants were reimbursed for travel costs and daily wages. To protect confidentiality, the interviews were conducted in a small conference room at a local nonprofit institute. Interviews were conducted in the local language with the aid of a translator trained insocial sciences and interviewing techniques. A semistructured interview protocol was used, allowing for flexibility to adapt to participants’ responses. The interview protocol had three primary sections: (a) initial rapport building questions, (b) questions about participants’ experiences living with HIV, and (c) questions about HIV-related peer work. The duration of each interview was 1–2 hours. Interviews were digitally recorded, translated, and transcribed by a professional. A grounded theory method was used to analyze the data (Charmaz, 2001; Glaser & Strauss, 1967; Strauss & Corbin, 1998). The first step involved listening to interview recordings and reading transcripts. A lineby-line coding was conducted, and approximately 200 open codes were identified capturing both implicit and explicit meanings. Through the process of selective coding, codes were sorted and organized into themes such as ‘‘going the extra mile’’ and later brought together into analytical categories such as ‘‘peer roles.’’ Once categories were established, their appropriateness was verified by examining data that did not fit within the categories. Several techniques were employed to validate the findings. Memos

were kept to establish preliminary relationships between codes, clarify ideas, and record plans for future analysis. The credibility of findings was assessed through informal conversations with NGO contacts and clients. Throughout the findings section, attempts have been made to provide sufficient evidence (examples and excerpts) and contextual detail to allow the reader to judge the credibility and trustworthiness of the analysis. To improve readability, participants’ words have been formatted into sentences, punctuation added, and repetitive aspects (e.g., um) removed. To maintain the voice and subjectivity of participants, pseudonyms have been given to each participant.

Context and Participants All participants reported being involved in HIVrelated peer work either as counselors, outreach workers, and/or health educators. Two males identified as homosexual, the rest as heterosexual. Participants belonged to a lower socioeconomic status and had little formal education. Four females and three males had not finished high school; the rest reported finishing up to 10th standard (grade). Participants had learned about their HIV infection in the preceding 5 to 10 years. Most male participants found out they were infected when they began to show symptoms. Female participants were diagnosed at the time of pregnancy or when their husbands were diagnosed with HIV. Participants discussed growing up with limited access to resources, opportunities, and health information. They experienced shock and horror at finding out they were infected and suffered stigma and discrimination within their families. Female participants in particular reported being mistreated by husbands and in-laws; many were abandoned, even thrown out of the home when their HIV status was revealed. A complete lack of emotional and material support from existing social networks led participants to seek out local NGOs. They described positive experiences with NGOs, which provided them much-needed support, and it was through NGOs that they began their work in the HIV-infected community, and life regained some normalcy. Participants’ experiences of living with HIV and the various

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ways in which the biomedical narrative entered into their subjective interpretations of health and happiness has been described in another paper (de Souza, 2012). Participants in this study operated in chaotic, unstructured, and unpredictable contexts with few financial resources and a patchwork of HIV-related information to guide their work. At the time the interviews were conducted, all participants were associated with one or more NGOs or government agencies, but with varying levels of formality and training. Some were salaried employees, others did volunteer outreach, and still others were paid through grants until the particular program ran out of funds, in which case, they were out of paid work, but continued to provide services on a volunteer basis. Participants earned between 2,000 and 3,500 rupees ($45–$78 U.S.) per month when employed, or approximately $2.5 (U.S.) a day, a paltry sum of money given the rising costs of living in India. The women reported working primarily as peer workers, while four males reported having other occupations besides peer work (e.g., carpenter), but even so their salaries did not exceed $200 (U.S.) per month. Participants had received different amounts of training. Only a few had received formal health training, some had learned on the job, and many had learned through their own experiences living with HIV and interacting with medical providers. For those who had received training, the focus varied depending on their specific job descriptions. For example, Lalit, an HIV-infected male, attended two professionally conducted health and advocacy training programs, where he learned about various treatments available. He was chosen for the job competitively and says the NGO made the decision based on his communication skills, or in his words, ‘‘based on whether they could convince another person and whether they could talk to other people.’’ Except for two participants, the rest did not report receiving any skills training. Sarita had learned to counsel and assist HIV-infected people by observing her ‘‘superiors’’ and reading books on her own. Participants performed their counseling work in a variety of settings: on the NGO premises and in more informal contexts such as streets, parks, and client homes. The government hospital that distributed antiretroviral therapy (ART) and the HIV testing

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center were important hubs of activity. Participants said that they would sometimes visit these sites intentionally; they would sit outside the hospitals and ART centers and, if they perceived that someone needed help, they would strike up a conversation. At other times, peer-related activities took place through chance encounters.

Results Within this context of social and material constraint, the analysis revealed five roles that participants assumed: role model, persuader, maven, going the extra mile, and micro-level advocacy. These roles were identified through a grounded analysis of participants’ articulations of personal experiences living with HIV as well as their experiences of reaching out to others with the disease. Role Models Across participants, there was a fervent desire to give back to the community by being role models for other HIV-infected people. Finding out that they had HIV was reported to be the most devastating experience of their lives, one from which they thought they would never recover. The participants faced stigma and discrimination not just from society, but also from close friends and family members. People implicitly and explicitly questioned their integrity; after all, ‘‘Everyone wants to know ‘How did you get it?’’’ However, participants had learned from the negative experiences and talked about the intense desire to help others. They had learned ways to disclose their HIV status to others, speak in public about sensitive sex-related issues, and some women had even found the courage to remarry, a taboo in the cultural context. A female participant said: What I have learned is that there have been a lot of changes in me. I am someone who doesn’t even know how to read and how to write. Now I can read. Earlier I could not even think that I could hold a mic and speak, but now I can do that. There is so much courage inside me, and this is very obvious in every aspect of my life. (Swapna)

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Participants argued that the only reason they were still alive was because other HIV-infected people ‘‘filled them with courage’’ and they too wanted to be role models to others. I want to work in this field forever, as long I live. I want to be an encouragement, be the support for people like me. It’s not about whether it’s a man or a woman, it doesn’t matter who did the mistake, I just want to stay in this field and help them. I must stand as an example for people. More than anything else it has given me lot of happiness and it has shown me the way to live my life. It is because of people and organizations like this that I am living today. I wanted to commit suicide, I was totally depressed but they filled me with so much courage so that is why I am alive. (Tara) Participants recognized that their stories had a huge impact on newly diagnosed individuals, and as such, the ability and willingness to share personal experiences with others was crucial. It was important to provide real examples of HIV-infected people who were living successfully. ‘‘You can give personal information on a sheet of paper, but when you provide case histories, people are automatically filled with courage and strength to go on’’ (Balaram). Others mentioned similar experiences: People are depressed and they look so scared, so I start talking to them. I just sit and talk and at the end of it they look at me and say, ‘‘He has been thrown out of his house, he lives alone, his wife and son have left him, but look at him, he is so happy and leading such a normal life.he works and goes everywhere and is continuing with his life, so I can too.’’ (Lalit) When I go for home visits and I listen to the troubles of people and I share with them my own personal story, and they don’t believe it. Whenever I see this disbelief, I smile. It is a simple joy that I experience. I just let them know that it’s OK, you don’t need a husband, you can stand on your own feet and I fill them with courage. (Shivani)

Participants emphasized the importance of being peers, rather than experts, because, ‘‘One positive person talking to another positive person is able to connect much better’’ (Shivani), and they called upon other HIV-infected people to speak out: If there are people among you who are HIV positive, please come forth and talk about it. Be a guiding light to others because I became like this through what I learnt, because it was people like me who came and told me and that’s my strength. So it’s your duty to come forth and be open about it. There is no point in hiding it because you will be causing harm to yourself and maybe to other people. (Priyam) Thus, by pointing to themselves as examples of people living successfully with HIV and telling their personal stories, they became role models capable of inspiring others. Persuaders Consistent with Boster and colleagues (2011), participants exhibited the persuader characteristic; they were effective at presenting their knowledge and were, therefore, a source of influence. They persuaded clients to engage in a variety of activities such as accepting their HIV status, taking medications as prescribed, disclosing their HIV status to loved ones, engaging in safer sex practices, and living life to the fullest. The key to being persuasive was empathy, a nonjudgmental attitude, and treating HIV-infected clients as equals. HIV peer work necessarily involved dealing with emotions of anger and resentment, so empathic communication, tact, and remaining calm were crucial. A counselor has to be a very patient and calm person. There are often cases where an agitated person comes for counseling and we cannot tell him directly that he is positive, we have to prepare him for the news. And sometimes people may even come to hit the counselor, but a counselor must remain calm and explain it properly. The counselor must understand that the person is under shock and is not really behaving normally. And when we know this it is also easier for us to counsel. (Shivani)

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The persuader trait centered on listening patiently to clients and gaining their trust. Trust from the client was garnered through simple verbal and nonverbal cues such as smiling, touching, inviting them to take a seat, maintaining face-to-face contact, looking into the eyes while talking, and not being distracted. You should talk tactfully and use the right words and language to convince them. Your language should be smart and keep the interest of the listener. The people you are dealing with are very sick people and you will have to address them with a lot of compassion and love. (Leela) To be effective persuaders, participants needed to find a balance between being peers and professionals, and they struggled with the duality of their roles. Many revealed that when clients cried in front of them, they were reminded of their own situation and had to suppress tears and negative reactions. Participants did not talk about their struggles as being over, but rather having to manage their own emotional pain to maintain a standard of professionalism. Sometimes, the client starts crying and crying, the crying can go for maybe half an hour, 1 hour, but that’s not counseling. At this time, we have to come out of the counselor role and say, ‘‘Yes I am also like you, come on, we will both go and have a cup of coffee and come back.’’ Then we will do counseling. (Aabha) Empathy was, thus, a key factor in building trusting relationships with clients and becoming a source of influence. Mavens Also consistent with Boster and colleagues (2011), participants exhibited the maven characteristic, which centered on providing good information and ensuring that it was understood correctly. Participants reflected on their own initial lack of information and misinformation. When they were first diagnosed, they were told they would not live more than 2 years, some were even shown gruesome photographs of how ‘‘AIDS patients eventually die.’’ Good information involved tailoring information to the specific needs of the client and making known

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all available choices. The terms complete and total were used to emphasize informational quality. A peer worker had to give relevant and total information, so that patients could decide for themselves. For instance, telling pregnant HIV-infected women about delivery choices open to them and the risks and care options for each choice was one way to provide important information. Peer workers also had to adapt information to the needs of the client, something participants argued the professionals were unable to do as well. I have seen many MSW [Master of Social Work] students who just operate from information sheets. They don’t know about the exceptions to the general rules. The MSW students say only the cesarean has to be done, but if you are in a village and there are no facilities available, then a normal delivery is better than anything else. So I would rather use my own head.people know that I am going through it, so this is an advantage. (Nakul) Providing the wrong information was seen as a terrible offense. Participants insisted that misinformation continued to be perpetuated. Balaram said that just a few days ago, the person who was handing out the medications at the hospital saw his report and said, ‘‘Oh, your wife is negative and your child is also negative, then you don’t need to use condoms during intercourse.’’ He lodged a complaint with the hospital administration but remained concerned that wrong information is being spread. Sandhya insisted, ‘‘We shouldn’t give wrong information. That is very important. If sometimes you don’t know the reply you should get the answer from someone else, but you shouldn’t give wrong information.’’ When confronted with questions she did not have the answer to, Sandhya would reply, ‘‘It is an extremely scientific issue. I can’t tell it so scientifically how it happens, but if you really want to know then we will collect the information and get it for you.’’ The need to provide good information was so important to participants that they found themselves engaging in education on a volunteer basis. Kavya visited the antiretroviral center whenever she was free and counseled people waiting in line; she was told that there was no salary for this sort of work, but she rationalized:

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I am educated and what is the use of someone like me just sitting within four walls and just crying about my misery and my destiny? So at least if I go out there, there are so many people who come there. At least if I can give them some information, it feels good. Going the Extra Mile Similar to Strike and colleagues’ (2004) study on needle exchange programs, the theme of going the extra mile resounded through the data in this study. A most prominent way in which participants went out of their way was by physically taking people to receive health care. According to participants, people came from the rural area, were uneducated and illiterate, and did not know their way around the city, so it was important not just to give them information, but to also take them to places (e.g., testing sites and ART centers). Raju said, ‘‘It’s about the personal touch in my attitude to service. I actually take people to the relevant hospitals and ensure that they are taking their medications.’’ Participants described the reasoning behind this: See even me, when I came for the first time, someone took me there, that’s why I got the tests done and I got to know about the facilities. So a counselor must be willing to do the same thing. He should take them, physically take them for testing, and show them the facilities available. (Shobha) There was the realization that, in this disenfranchised setting, no one else could provide the help needed. What we have to understand is the relationship between a peer counselor and a client. It’s much deeper than with a doctor because the peers have shared their own life story. They have disclosed that they are similar people who have gone through similar things and they tell each other about things. People may not depend on doctors or counselors, but a peer counselor is a very special person in their life. They call up in the middle of the night asking for help and, irrespective of what is happening in your own life, you have to be very alert and answer

whatever questions they have. So in this case, when the child was born out of the hospital, it was at 10 o’clock in the night. I knew that the medication had to be provided within 72 hours of the child’s birth, so I caught the bus at 5 in the morning to reach the child and provide the medical care. (Priyam) Shivani described a recent experience at her work. A lady was sitting just outside her office, and Shivani could tell from her body language that she was extremely distressed, so she went up to talk to her. Eventually, the lady cried and told her that her husband had left her because she had HIV infection. Shivani told her that she too had HIV and worked with positive people at the hospital. Shivani was later invited to the lady’s home for a family event where she was introduced as the ‘‘woman who saved my life.’’ She said, ‘‘See, if I had not taken the initiative and gone and spoken to her, I don’t think she would have been a happy mother of two now.’’ Another participant told how she convinced an HIV-infected woman to go to the hospital to have a caesarean section. In this way, I have saved many patients. The first child was positive and the one we delivered was negative. They come to me and say, ‘‘Thanks that because of you my child is negative. We are grateful to you.’’ Around 60 members have told me that. That has made me very happy. (Mahima) Despite their personal lack of resources, the notion of doing these acts out of altruism, rather than for money, was dominant. Participants talked about occasions where people wanted to pay them, but they refused. ‘‘No. I never take money. It is totally voluntary. When people come I don’t take any money but many of them come without any money so I end up giving them money.’’ (Tippus). Tara told the story of how some people she had counseled about breastfeeding wanted to give her money, but she told them that she did it so that a child could be healthy. ‘‘I did what I was supposed to do, I don’t want even one rupee. Your good wishes are enough for me – my own child will come up in life.’’ She added, ‘‘Moreover it’s a matter of empathy. What difficulty she has, I have, so I won’t take money.’’ Overall, for participants,

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going the extra mile seemed to be the norm, and altruism and empathy motivated them to do so. Micro-Level Advocacy Given their personal experiences with stigma and discrimination, as well as seeing what others went through, participants viewed it as their responsibility to educate family, friends, and the people they encountered in their everyday lives about the disease. Many women discussed their courageous attempts to educate their families. Aabha discussed how she used to be introverted but developed a deep motivation to bring about change in herself, her family, and her community through her story. She described her attempts to get her parents to accept her new life. See, I am going outside, I receive a lot of information; I meet other HIV-infected people and doctors so I got a lot of guidance, but no one is meeting my parents or talking to them. So I would call my parents for any support group meetings and training programs at the NGO. My father came here to the office, he talked to other people, and when I used to go to the clinic, I would take him with me as well. I would leave him with the doctor and go away.You know, I tried many things for many years, but nothing worked and then, within 1 year, he turned around. He really turned around! And after that I saw changes in my sister, my mother, and other family members as well. After many years of trying to get her parents to accept her, what eventually brought success was providing her family with the opportunity to learn more about the disease and people like her who suffered from it. She continued, ‘‘Today I am telling you, in my whole family I am the first person working, first person speaking in community, and first person studying!’’ Sandhya’s in-laws threw her out of the house on finding out her HIV status, but she boldly tried to change their attitudes: One day, I forced myself inside the house to try to talk to them, but they scolded me for coming, saying that now all of them would be infected. I gave them some pamphlets about HIV and told them to read it.they were not ready to even

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touch the paper, but I was also stubborn. I told them that I won’t go until they read it, then they read it and when I went about 2 weeks later, they sat down with me, and a month later, they even offered me coffee, so I was relieved. There were several examples of participants intentionally taking the opportunity to educate friends and acquaintances, usually in the course of informal social interactions. Zainab said: I used to attend the meetings near my village where I lived earlier. Everyone in my village is aware of my illness. But now I have moved from there and I live alone in this place where nobody suspects my illness since I look healthy and lead a normal life. There are times when the HIV advertisement comes on television and taking the opportunity I educate the people around me about this illness. I tell that it is also like any other disease or something like tuberculosis, where you can be cured. Mahindra described his attempts to build awareness. For instance, his best friend did not know anything about the disease, so he educated him about it, and now they eat from the same plate and he feels good about this. Participants talked about educating ignorant physicians about the disease; for instance, the physician in Dev’s village was afraid to go near him, so he eased the fears by telling the physician that it was a ‘‘very normal’’ disease and there were only a few ways it could be transmitted. These examples illustrate the many ways in which the participants found opportunities to exert influence in the social sphere.

Discussion This study analyzed the roles of peer workers involved in HIV prevention and support activities in the context of south India. Five roles emerged from the data, which reinforce the extant literature (Boster et al., 2011; Strike et al., 2004): (a) role model, (b) persuader, (c) maven, (d) going the extra mile, and (e) micro-advocacy. Similar to Hilfinger Messias and colleagues (2009), findings revealed that the work of HIV-infected peer workers was embodied, in that they always operated through the

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lens of personal experience. Even though some had received training, they did not reference book learning, but rather their own experiences. For instance, they had not received good information, so they wanted to ensure that their clients received accurate information; they had not known where to go when they first came to the city, so they went the extra mile with clients. Overall, the work of the peers centered on creating safe spaces for clients to communicate, providing material assistance, and building trusting relationships rooted in empathy. The discussion elaborates on the relationships between peer work and empowerment and sounds a clarion call for more resources to be allocated for peer work. Peer Work and Empowerment A major contribution of this study lay in the textured responses gathered from HIV-infected peers through in-depth interviews, which allowed connections to be drawn between peer work and empowerment. The ‘‘new public health’’ emphasizes the empowerment of communities through participation in health care, where empowerment is seen as a multidimensional concept defined at the individual/psychological and community levels, where the focus is bringing people together and enhancing community capacity (e.g., Goodman et al., 1998; Israel, Checkoway, Schulz, & Zimmerman, 1994; Wallerstein, 1992). While the roles played by peer workers in Western and nonWestern contexts seem similar (e.g., persuader and maven), major differences lie in the level of empowerment experienced through peer work. At the individual level, peer work brought personal transformation. Participants gained a sense of purpose and self-worth through telling and retelling personal stories of living with illness. In such a resource-deprived setting, peer work presented an opportunity for the participants to develop capacities, for example, learning how to communicate, counsel, and advocate for issues pertaining to HIV. Some participants gained materially by earning a salary or a stipend for their work, which was extremely empowering, especially for women, many of whom had never had formal employment. Peers also strengthened the HIV community by building social capital. Peer workers were crucial to the process of

bringing HIV-infected people together, connecting them with each other, and building a sense of community amongst them. Participants provided support to newly diagnosed people in the form of empathy, good information, going the extra mile, and disseminating a message of hope; in so doing, they were able to bring previously disconnected people into the fold of the larger HIV community. At the community level, participants played a role in shifting social norms and transforming the cultural space through individual acts of resistance within their families and social networks. This was seen when female peer workers boldly stood up to inlaws or when peers took the opportunity to educate lay people about the disease or when they encouraged women to live without their husbands – a radical notion in this cultural context. Similar to Campbell and Mzaidume’s (2002) findings, peer work shifted knowledge from the experts into the hands of HIVinfected people, giving them more control over the information that was disseminated and the manner in which it was disseminated. For instance, newly diagnosed HIV-infected people were more likely to receive counsel in a nonjudgmental manner from other HIV-infected people who had experienced stigma and discrimination. Enhanced knowledge gave peers credibility and bolstered their confidence for affecting systemic and structural change. This was seen when a male peer worker who, because of his health knowledge, lodged a complaint with hospital administration. Peer Work and Resource Support The study contributes to the literature by drawing attention to work done by peers in unstructured settings. Other studies draw out the importance of attending to socio-political inequities in shaping the HIV epidemic (e.g., Campbell & MacPhail, 2002; Campbell & Mzaidume, 2002), but these occur within the context of more formalized peer education programs, where peers are recruited based on a variety of criteria and provided formal training on the topic at hand (e.g., HIV prevention). In the Indian context, studies have found that peer educators can effectively disseminate information to less-educated communities (van Rompay et al., 2008), training peer educators can be effective for HIV prevention in rural

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India (Sivaram & Celentano, 2003), and there are multiple benefits to using HIV-trained health-accredited social health activists (Nyamathi et al., 2010). This bias in the research overlooks more informal types of peer work that take place in unstructured settings, in particular, peer work that is not driven by a particular research intervention, stable government program, or continually funded ongoing nongovernmental program. Several issues arise from the lack of resources and structured opportunities available to peers. While the peer workers in this study saw incredible value in their own work, despite their best efforts, they were not able to fulfill some of their roles because of a lack of resources. The peer workers in this study grew up with diminished access to resources; they barely finished school, and even at the time of the study, earned minimal amounts of money. The female peer workers were especially marginalized because many, on being widowed, were abandoned. The lack of resources meant that they were often left to function as independent operators engaging in peer work on their own time and dime. They operated with little training and little direct supervision. They lacked access to professionals who could explain medical information; as a result, they were not always able to provide answers to their clients. They also had not received training in interpersonal communication and/or counseling strategies, so they relied primarily on their own experiences to guide communication behaviors. In addition, participants experienced stress negotiating their multiple roles. At a personal level, there was cause for concern regarding the well-being of these peer workers because, unlike the peer workers in Strike and colleagues’ (2004) study, they did not set any boundaries to their work. They insisted that peers should be ready to do anything, and nothing was off limits. Participants made valiant attempts to separate their dual roles as a peer worker and ‘‘a person living with HIV,’’ but crossed these boundaries on a regular basis without any safety net in the form of emotional or material support. Peers exhibited conscious restraint to separate or compartmentalize their dual roles; some articulated the need to hide their emotions or, in the case of Aabha, talked about ‘‘coming out’’ of the counselor role by confessing, ‘‘Yes, I am like you too.’’ There were also instances

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where participants were not able to ‘‘take off’’ their peer worker roles; they carried over peer behaviors to other situations as seen when they performed micro-level advocacy and attempted to educate the larger community. All of these situations, if not adequately addressed, could lead to stress and burnout for participants. In light of these findings, the study advocates for the importance of allocating more resources for peer work. While the discourse of ‘‘community participation’’ continues to be reinforced in the public health agenda, more needs to be done to support peer workers in the field who are vital to HIV prevention and support efforts. Reimbursement for peer workers, especially female peer workers, is crucial; they come from low-income backgrounds and, for many, being employed by agencies/programs provides a means of subsistence. Peers should also receive more formal training so they can perform roles effectively and accurately. The training should break away from the didactic top-down training format; instead, it should have a more interactive format, where peers can ask questions, put forth case studies, and have their questions responded to in a contextualized manner. It is also necessary to have regular follow-up sessions and designate an individual (e.g., public health nurse) to serve as a point person for questions and concerns. Limitations There are limitations to these findings and analyses. First, as a qualitative project, the research could not be closed off to the investigator’s subjectivity, although principles of reflexivity that promote awareness of one’s influence in the field were followed (Charmaz, 2001). Secondly, because the group of peer workers was not a representative sample, the analysis should be treated as specific to this group. The study is not meant to represent all PLWH engaged in peer work in India, but a piece of the larger picture.

Conclusion Future research should continue to explore the roles peer workers play in specific contexts and how they relate to empowerment. What are the processes by which peer workers create change in their communities? What are the opportunities and

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constraints they experience? There is much to learn about the process by which oppressive norms in a community are transformed at a sociocultural level; how can peer work go beyond the transmission of health information to bring about larger change? As this study showed, for isolated individuals, peer work can provide a means by which they become a part of a community again and gain a place of significance in the social world. In a context where HIV-infected people are abandoned by their friends, families, and the health care system, peer workers step in to inspire courage and confidence in others. Their acts are driven by empathic understanding, an ethic of responsibility, and a desire for self and community betterment. One can only imagine what increased resource allocation for peer work at the grassroots level could do for health and social empowerment.

Key Considerations  With proper training, peer workers can be mobilized to provide health education to people living with HIV (PLWH) and the larger public, and help PLWH manage the infection.  Peer workers must be provided with emotional and material support to sustain their activities.  Peer workers must be provided with formal training and have regular follow-up with health care professionals to answer questions and clarify information.

Disclosures The author reports no real or perceived vested interests that relate to this article that could be construed as a conflict of interest.

Acknowledgments This study was funded in part by the Institute of Advanced Study, University of Minnesota, ‘‘Body

and Knowing’’ University Symposium (2009-2010), and the Office of the Vice President for Research, University of Minnesota, Duluth (2009).

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