Local Discourse on Antiretrovirals and the Lived Experience of Women Living With HIV/AIDS in Thailand

Abstract

Antiretrovirals (ARVs) have been seen as life-saving for HIV-positive people. However, ARVs have a darker side. Since 2000, many HIV-positive people in Thailand have received ARV treatments, but the understanding of ARVs and practices of medication-taking among HIV-positive women have not received much attention. We discuss local discourses employed by HIV-positive women and health work by these individuals in their attempts to adhere to ARVs restrictions. The local discourse of ARVs was ya tan rok AIDS “medications that could resist HIV/AIDS.” ARVs provided hope for the women. Although the women were affected by the side effects of ARVs, they continued to take their medication to be able to live longer and perform their duties as mothers and carers. They were more concerned about the practice of medication-taking. Understanding why these women were adherent to their ARVs offers insights into the social impact of these ARVs on their lives.

Keywords

Asia,South / Southeast Asian people / cultures medication adherence / compliance hope HIV/AIDS interviews,semistructured lived experience stigma women’s health

Antiretrovirals (ARVs) have been seen as a life-saving for many people living with HIV/AIDS (Berneys, Rhodes, & Terzie, 2010; Tam, Pharris, Thorson, Alfven, & Larsson, 2011). ARVs have changed HIV/AIDs from a deadly disease to a chronic illness that can be managed by many people (Li, Guoping, Ding, Tian, & Lee, 2012). They have improved quality of life for many HIV-positive people (Badahdah & Pedersen, 2011; Tam et al., 2011) because they enable these individuals to live healthier and longer lives (Peltzer & Ramlagan, 2011; Smith & Mbajwem, 2010). For individuals who take ARVs according to medical advice, their CD4 count (T lymphocytes) can increase quickly within a year and viral loads can drop significantly to an undetectable level (Peltzer & Ramlagan, 2011). These clinical indications have resulted in a decline in HIV/AIDS-related morbidity and mortality (Moitra, Herbert, & Forman, 2011; Tam et al., 2011). As Ware, Wyatt, and Tugenberg (2006, p. 904) suggest, the arrival of ARV therapy has provided “a second chance of life” for people living with HIV/AIDS.

ARVs, however, have “a darker side” (Edwards, 2006, p. 681). Apart from their significant side effects, ARVs have low tolerance for missed doses (Ware et al., 2006). There are harsh rules regarding medication-taking, for example, time of day and food requirements. ARVs require lifelong adherence that is also “at once complicated and unforgiving” (Ware et al., 2006, p. 904).

For treatment to be optimally effective, adherence to drug regimens (including missing doses, late doses, and correct doses) is extremely crucial (Badahdah & Pedersen, 2011; Moitra et al., 2011). Adherence must be close to 95% (Scioli, MacNeil, Partridge, Tinker, & Hawkins, 2012). If ARV medication schedules are not fully adhered to, the result can be adverse clinical outcomes such as virological failure, drug resistance, and a higher risk of death (Arbune, Georgescu, Cuciureanu, & Dobre, 2013; Li et al., 2012). Thus, most research concerning antiretroviral therapy (ART) and ARVs tends to focus on barriers to adherence or non-adherence among HIV-positive people (see Musumari et al., 2013; Uusküla et al., 2012). There has been little research examining the local discourse on ARVs and reasons that HIV-positive people take ARVs. This is particularly so within the context of Thailand.

Since 2000, many HIV-positive people in Thailand are receiving ARV treatments. However, the effect of ARVs and practices of medication-taking among HIV-positive people have not yet been examined. In this article, we investigate local discourses employed by women living with HIV/AIDS. In addition, we examine health work performed by the women in their attempt to take ARVs. We particularly wish to know why women in our study accepted ARVs. Understanding why these women were so adherent to their antiretroviral regimens might offer insights into the social impact of ARVs on their lives (Nguyen, Ako, Niamba, Sylla, & Tiendrebeogo, 2007).

Antiretroviral Treatment Programs in Thailand

The Thai Ministry of Public Health (MOPH) initiated the provision of ARV mono-therapy in 1992. Triple-therapy was commenced in the late1990s. However, because of the high cost of medications, the number of persons adopting the two elements of treatment (ARVs and medication for opportunistic infections) was small (Lyttleton, Beesey, & Sitthikriengkrai, 2007). In 2000, Thailand launched a national ARV treatment program. This program involved joint efforts of public and private hospitals, government, and community organizations. It also included the participation of people living with HIV/AIDS and the provision of free or inexpensive ARV medications. Prior to 2000, ARV treatment in Thailand was only accessible through some private hospitals and research means such as clinical trials for HIV drugs. Access to treatment was broadened when the Thai Government Pharmaceutical Organization (GPO) started to produce a generic fixed-dose combination ARV named GPO-VIR in 2002. This locally produced ARV contains stavudine (d4T), lamivudine, and nevirapine (NVP). Aiming for universal access to ARV treatment, this program was broadened into the National Access to ARVs for People Living With HIV/AIDS (NAPHA) in 2004 (Chasombat et al., 2009). Under the NAPHA program, all public sector hospitals (including regional, provincial, and district hospitals) and some private sector hospitals can provide ARV treatment to eligible HIV-positive persons (Chasombat et al., 2009). By 2006, the integration of ARV treatment into the universal health care coverage scheme was completed (Srikantiah et al., 2010). This integration enables eligible HIV-positive people, like all other patients, to hospital care for 30 baht (about US$1) per visit (Lyttleton et al., 2007). Currently, ARVs are accessible at 95% of the 1,066 hospitals nominated for the provision of ART across 1,057 districts in Thailand (National AIDS Prevention and Alleviation Committee Thailand, 2010).

HIV-positive individuals are eligible for ARV treatment if they have a CD4 count of 200 or less cells per cubic millimeter, or have a symptomatic HIV diagnosis with a CD4 count of 200 to 250 cells (Chasombat et al., 2009). They can either self-refer or be referred by a health care provider from any hospital-based, NGO-based voluntary counseling and testing center, or prevention of mother-to-child transmission facility. Currently, first-line treatment regimens for most HIV-positive people are GPO-VIR. However, zidovudine or efavirenz are provided for people who are unable to take d4T or NVP. Second-line regimens comprise “a ritonavirboosted protease inhibitor (PI) regimen with indinavir, saquinavir, or lopinavir” (Chasombat et al., 2009, p. 507). Co-trimoxazole prophylaxis is prescribed for all individuals with CD4 counts less than 200 cells per cubic millimeter, and fluconazole for those with CD4 counts less than 100 cells. After initial treatment, the monitoring of CD4 is offered every 6 months. Viral load testing has also been provided as part of the universal health care coverage scheme since 2006 (Chasombat et al., 2009).

With some notable exceptions, ARVs are now accessible to all HIV-positive people who need them (Lyttleton et al., 2007). In early 2006, only about 70,000 people had access to ARV treatments. Due to the provision of ARVs under the universal coverage scheme, it is estimated that as many as 200,000 HIV-positive people will be receiving ARVs in years to come.

Narrative of Hope and Medication-Taking Practices: Theoretical Frameworks

The global HIV treatment revolution produces a “discourse of promise” for people living with HIV/AIDS worldwide, but particularly for those in lower and middle-income countries (Rhodes, Bernays, & Terzić, 2009, p. 1057). ARVs provide medical promise (Rhodes et al., 2009) because they offer hope of gaining health and well-being to these individuals. Hope is an important element of how chronic illness experience is narrated (Frank, 1995; Smith & Sparkes, 2005). Hope is situated within the narratives of restitution theorized by Frank (1995). Narratives of restitution position illness as “an interruption to be overcome” (Frank, 1995, p. 77). The focus is on the responsibility and actions of individuals to “return self to normal” and this can be done by engaging in medical treatments and adhering to them (Rhodes et al., 2009, p. 1057). Within these narratives, Western biomedicine provides medical promise by means of medical treatment or cure to individuals and thus proffers them a narrative of hope (Mishler, 2005). Hence, restitution narratives offer concrete hope to individuals (Rhodes et al., 2009; Smith & Sparkes, 2005). In the case of HIV treatment, having access to ARV medications and adhering to them clearly hold out concrete hope for HIV-positive people (Russell & Seeley, 2010).

Medical promises can be double-edged (Shim, Russ, & Kaufman, 2007). ARVs not only produce hope but also chaos (Frank, 1995) such as anxiety, ambivalence, and insecurity (Nettleton, 2006). Thus, restitution through medical treatments can be “a tyranny” for those who are unfortunate enough to experience chaos (Rhodes et al., 2009, p. 1057). In the case of ARVs, this chaos may include bodily side effects of medications and treatments as well as biographical disruptions (Bury, 1991) resulting from the harsh requirements of medication-taking practices.

Medication-taking is “a socially-organised practice” embedded within individuals’ illness experiences and their everyday realities (Izugbara & Wekesa, 2011, p. 870). It has strategic ends such as to be able to gain health and well-being or to be cured. As such, medication-taking is a kind of health work (McCoy, 2009) that individuals perform to achieve a desired outcome. It is situated within a segment of “technologies of the self” theorized by Foucault (1988, p. 18). Technologies of the self are strategies which

permit individuals to effect by their own means [or with the help of others] a certain number of operations on their own bodies and souls, thoughts, conduct, and way of being, so as to transform themselves in order to attain a certain state of happiness, purity, wisdom, perfection, or immortality. (Foucault, 1988, p. 18)

Medication-taking practices are also located within particular socio-cultural contexts (Rogers et al., 1998) including having access to free medication or treatments and ability to practice medication-taking in their everyday lives. Medication-taking practices, especially in long-term situations like ARVs, may be a reflection of individuals’ attempts to deal not only with their particular health issues but also other social matters confronting them as victims of HIV/AIDS (Izugbara & Wekesa, 2011). In the case of our research, the unique realities of being a woman and a mother living with HIV/AIDS in their quest for medications which would help them to live a healthier life and to allow them to live longer for the sake of their children and other family members was of particular interest.

Methodology

This article is based on our larger project on the experiences of women living with HIV and AIDS who participated in clinical trials in Thailand (Liamputtong, Haritavorn, & Kiatying-Angsulee, 2009, 2012). We adopted a qualitative approach because qualitative researchers accept that, to understand people’s behavior, we must attempt to understand the meanings and interpretations that people give to their behavior. This approach is particularly useful when we have little knowledge of the participants and their worldviews (Bryman, 2012). In this study, we adopted the in-depth interviewing method and conducted individual interviews with 26 Thai women.

A purposive sampling technique (Morse, 2006) was adopted; that is, only Thai women who had experienced HIV and AIDS were approached to participate in the study. We recruited the participants through advertising on bulletin boards at hospitals from different clinical trials and our personal contacts that we have made through a number of HIV and AIDS research projects with Thai women. Because of the sensitive nature of this study, we also relied on snowball sampling techniques; that is, our participants suggested others who were interested in participating. In addition, leaders of two HIV and AIDS support groups in Bangkok assisted us to access the women.

The number of participants was determined by a theoretical sampling technique, which is to stop recruiting when little new data emerges; this signifies data saturation (Bryman, 2012). The socio-demographic characteristics of the women are as follows. The majority of the women were aged between 31 and 40 years. Four were under 30 years of age and 5 were over 40. Most (25) are Buddhist and 1 is Muslim. Nineteen women were living with their new partners at the time of the interview, 1 was married, 2 were divorced, 2 widowed, and another 2 were single mothers. Twelve women had only primary school education, 11 finished secondary school education, and 3 had vocational college training. At the time of the interview, 7 women worked as outreach health workers, 6 were self-employed, 4 were office workers, 5 had casual employment, 1 was unemployed, and 3 women performed home duties. All the women, except 1, were mothers; 13 women had 2 children and 11 had only 1 child. One woman was pregnant when she was interviewed. Twenty-three women had children who were HIV negative and 3 women did not know about the HIV status of their children. Twelve women had family income of less than 5,000 baht (about US$160) per month and 12 received income of between 5,000 and 10,000 baht (US$160 and $322). Only 2 women had a family income of more than 10,000 baht. Eighteen women were covered by the 30 Baht government health insurance scheme, 7 were under the Social Security Scheme and 1 had no health insurance coverage.

We conducted all interviews in the Thai language to maintain as much as possible the subtlety and any hidden meaning in the participant’s statements (Liamputtong, 2010). This was essential because we wanted the women to be able to express their experiences in their own words. Prior to the commencement of the study, ethical approval was obtained from the Human Ethics Committee of La Trobe University in Australia and Chulalongkorn University in Thailand. After a full explanation of the study, the length of interviewing time, and the scope of questions, the participants were asked to sign a consent form. Each interview took between 1 to 2 hours. We provided each participant with 200 Thai baht as compensation for their time to take part in our study. This incentive is necessary for sensitive research because it is a way to show that research participants are respected for their time and knowledge (Liamputtong, 2007).

With permission from the participants, we tape-recorded all interviews. The tapes were then transcribed verbatim in Thai for data analysis. We analyzed the data using thematic analysis (Braun & Clarke, 2006) in Thai language. We did not translate the interviews into English as all authors are Thai native speakers. We only translated the verbatim examples included in this article. The thematic analysis method aims to identify, analyze, and report patterns or themes within the data. Initially, we performed open coding after codes were first developed and named. Then, axial coding was applied to develop the final themes within the data. This was done by re-organizing the codes that we had developed from the data during open coding in new ways by making connections between categories and sub-categories. This resulted in themes, which were used to explain the lived experiences of the participants. The emerging themes are presented in the findings section.

Findings

Ya Tan Rok AIDS: ARVs, Local Discourses

The Thai word for ARVs is ya tan rok AIDS. However, a more common term used by the participants is ya tan. Literally, ya refers to medicines/drugs and tan means to resist. Thus, ya tan represented local understanding of medicines or drugs that could resist HIV/AIDS. The discourse of medicines that could resist HIV revealed positive attitudes toward ARVs among the women in our study. It also reflected the way these women engaged with ARVs, as discussed below.

For the women, ya tan meant many positive things that happened to them after being diagnosed with HIV. Prior to the discovery of ARVs, being told that one was HIV-positive was perceived as a death sentence. Ya tan was seen as a life-saving intervention for the women in our study. Access to ARVs brought many changes into their lives. Most women suggested that ya tan helped to improve their health and hence their life.

Ya tan helped to make me feel better and healthier. My health certainly improved a lot after taking ya tan. I had more energy to work. Ya tan suppresses HIV disease and because of this, our immune system improves and that is why I have more energy to do my work.

The women also remarked that it was like being born again when taking ARVs. ARVs made a marked difference to their lives. ARVs also helped to alleviate the symptoms of HIV and restore the physical strength of many women. For one woman, ya tan allowed her to feel stronger and hence be able to resume daily activities and participate in other social support life events that she could not do prior to having access to the medications.

Ya tan has changed my life a lot. Since I started taking it, I don’t have too many health complications. I feel that my body is functioning better. I am not too sensitive to food allergies anymore. When I was not taking it, I would be allergic to too many things. Now I feel good with my body. It also makes me strong and I am able frequently to join AIDS support groups or any other local community events.

Ya tan provided hope for many women in our study. This hope is relevant to a better quality of life and the opportunity to live more healthily and to avoid an early death from HIV/AIDS. This hope, however, was closely related to the fact that they would live longer to take care of their children and older family members such as their parents.

My child was still very young and my husband had just died. I thought if I could take some medicine, I would be able to prolong my life for another few years to take care of my child. I did not even think about any side effects that I would have; only to live a bit longer for my child.

Financially, for many women, being able to access ya tan almost free of charge was extremely important for them. The women remarked that the cheapest ARV treatment formerly cost 1200 baht (US$30) per month and this cost did not include the fees for out-patient visits and monitoring. Although this cost would be affordable for some higher income women in Thailand, the women in our study would have little chance of this, since most women were from low-income families.

Since ya tan helped the women to improve their life, for many women, it functioned as emotional support for them. Ya tan also helped to change attitudes toward people living with HIV/AIDS in Thai society. It helped HIV-positive people to look and feel better and hence negative images of HIV/AIDS as a death sentence disease have also changed markedly. The women believed that ya tan also helped to reduce stigma and discrimination within society. Rather than being feared by others in society, they suggested that nowadays HIV-positive people in Thailand were more likely to be pitied. People felt sorry for them and were more accepting of their health condition (Liamputtong et al., 2009, 2012).

Side Effects of Ya Tan

Despite its efficacy in making life better for many HIV-positive individuals, ARVs also have unpleasant side effects (McCoy, 2009). One woman experienced bad rashes all over her body when she first started taking ya tan. However, this only lasted for one month. After that, her health improved. The doctor told her to continue taking the drugs. Another woman received 3TC/d4T (a combination of lamivudine and stavudine) and GPO-VIR (a generic fixed-dose combination ARV containing d4T, lamivudine, and NVP) at one of the clinical trials in which she took part. She told us,

I nearly died. I was allergic to this medicine. I had bad fever and it got into my brain and caused severe headache so that I fainted. I also vomited and all the bones in my body were aching. I also nearly went blind. Nine days after I started taking it, the whole of my body was covered with lumps. The doctor ordered me to stop taking the medication and admitted me into hospital.

The most common problem for women taking ARVs was a change of bodily appearances. Often, the change of physical appearance implied that the person was living with HIV.

Women are very concerned about their bodily appearance. They would be afraid of having a dark-skinned body, high cheekbones and loose stomach. These are the things that most women would be very concerned about.

Weight gain was also an issue for many women. Before taking ya tan, one woman weighed only 50 kg and she looked thin. After 3 months of ya tan, it was like her flesh was splitting as her body became swollen. She did not feel sick but she gained weight very quickly, from 50 to 62 kg in 3 months. However, it was only her body that gained weight very quickly; her arms and legs were still very thin. She also felt that her face was becoming fatter. She said she looked like a frog. This also made her tire very easily. She could not walk for too long or do too much. She believed it was due to the weight that she gained very quickly.

In the case of this participant, and in other cases, the change in physical appearance could have negative consequences. It could create problems for many women as stigma and discrimination against people living with HIV is still widely prevalent in Thai society, although this is changing. Most women did not disclose their HIV status to their family members. When the family members could see such a drastic bodily change, they started to question the women.

My mother asked my why my body changed too much. I told her that I took bad medicines that made my body swollen. Mum told me to stop taking it because she did not know that it was ya tan and I was HIV-positive. I told her I could not stop taking it because it would eventually make be better. She said my body was abnormally swollen and it would not be good for me.

For some financially better-off women living with HIV, cosmetic surgery could help to reduce lipodystrophy effects on their body. One woman suggested that there were drugs that could be injected into the thin parts of the body such as the face, arms, and legs to make them look fatter. This would reduce the problem of fat re-distribution. This, however, is only possible for financially better-off women.

Because of its potential side effects, ya tan was feared by one woman in our study. At the time we interviewed her, one participant had not commenced taking ya tan despite her CD4 being about 180 to 190. She remarked that she did not feel sick. Although she realized that her CD4 was rather low and she should have started taking ya tan, she was reluctant to do so.

Medication-Taking Practices: Health Work and Life Bound to the Medicine

Despite the side effects of ARVs, the women in our study continued to take them. What they were more concerned about was medication work, the practice of medication-taking. ARVs became lifelong medications for them. Once they commenced their ARVs, they had to continue for the rest of their lives.

Medication-taking practices invaded the everyday life of these women, as there are complex schedules. Their lives became bound to the medicines. Their days were consumed by medication-taking activities that reduced their time and energy for other types of social obligations. ARVs must be taken on a daily basis, and they have to be taken several times during the day at particular times. For many women, this created some burdens and disruptions to their everyday lives. One woman was so frustrated with taking ya tan because of its need to be taken at a particular time of day for a long period of time. This and other women longed for a day when people living with HIV/AIDS would need to take ya tan only once in their life-time. To our women, taking ARVs became a never-ending disruption of their lives.

Taking medications on time was problematic for many women. Often, because of other responsibilities in their daily lives, they struggled to take the medications on time or forgot to take them. One woman was so busy with work that she forgot to take her medications a few times.

This was particularly when I was having problems and when I was working on different shifts. Sometimes, I even forgot to take them to work. Sometimes I just forgot, and by the time I remembered, it was two or three hours late.

For many women who were mothers, taking ARVs was a daily battle. One woman said that she had to prepare her child for school in the morning. By the time she could take her ya tan, it would be past 9:00 a.m. in the morning. Then she had to wait until 9:00 p.m. at night when she needed to take another dose. Some days, she felt tired but she had to wait until 9:00 p.m. to take it before she could get to bed. Her daily routines were clearly disrupted by the need to take ARVs on time.

Women had to adhere to strict routines so that the medications they took would not become resistant. Drug resistance was referred to as due ya in the local Thai discourse. Biomedically, missed or late doses provide an opportunity for the virus to reproduce itself or build up expedient mutations that may result in drug resistance (Ammaranond & Sanguansittianan, 2012; Arbune et al., 2013). The women in our study understood this very well. Most adhered to the time that they took her medications and never forgot to take them.

If you do not take your medications on time or forget to take them too often, it is not good as you will become deu ya. If you are deu ya, you have to change to a new type of medications. However, by the time you can get access to new ya tan, your body would become very sick because we do not have access to a continuity of medication. The disease becomes resistant. Because there is no drug to suppress it, the disease will start working again and our symptoms will come back. So, we must take ya tan on time and never forget to take it.

In addition, medication-taking practice was a health work that the women in our study had to perform. They looked for some strategies for taking ARVs. Many women would take their ya tan in secret because they did not wish others to know about their HIV status. When taking ya tan, the women would escape into a bathroom or some other more private place to do so. Consuming medications in public might signify that she was HIV-positive. However, it was interesting to observe that when they took other medications, such as paracetamol for headache, they could just take it anywhere. This clearly indicated the fear of being stigmatized by others.

For some, taking medications (and a lot of them) caused some suspicion among their family members and colleagues. Thus, most women had to invent reasons for taking their daily medications. One woman took ya tan twice a day. Although she did not think it was a burden for her, she used her problem with her liver as a reason for regular medication-taking.

No one asked me why I had to take a lot of medications (twice per day) because I also had problems with my liver. My family knew that I was receiving treatment for my liver. When I went to see a doctor, I told them that my doctor told me to go to get medication for my liver.

The women also invented some terms as an attempt to destigmatize ARVs consumption. They used a term such as khanom “snack/sweet” when referring to ya tan so that others would not know that they are ARVs.

Discussion

In this article, we discuss local discourses employed by HIV-positive women and their health work in their attempts to adhere to ARV restrictions. The local term for ARVs is ya tan rok AIDS, “medications that could resist HIV/AIDS.” ARVs provided hope for these women. Although the women had side effects from ARVs, they continued to take their medications to be able to live longer and perform their duties as mothers and carers for their aged parents. They were, however, very concerned about the practice of medication-taking. In the following sections, we will discuss several salient issues that emerged from our data.

Meaning of ARVs

It is crucial for us to appreciate the local understanding of terms used to refer to ARVs, as this signifies how local people think about the medications and the roles the drugs play in their lives. In our work, we have shown that the local understanding of ARVs was as medicines that could resist HIV/AIDS. This is similar to what Wong and Ussher (2008) say in their research: ARVs are anti-HIV treatment. For Thai women living with HIV/AIDS, ARVs also acted as what Ezekiel, Talle, Juma, and Klepp (2009, p. 960) have coined “life prolonging drugs.” The local discourses grant claims for ARVs in “enduring survival” of people living with HIV/AIDS.

ARVs have provided many benefits to people living with HIV including the women in our study. ARVs have emerged as the difference between life and death (Gilbert & Walker, 2009). ARVs are seen as “life-saving medications” as they help to restore health and bring hope for HIV-positive people (Watermeyer, 2011, p. 807). ARVs provide what has been termed the “Lazarus phenomenon” (Thomson, 2003, p. 88), referring to a marked improvement in health and life due to advances in medications by which individuals who are near death are “brought back to life” (Watermeyer, 2011, p. 807).

ARVs are also seen as “a ticket to normality” (Conrad, 1985, p. 32) physically and socially for people living with HIV/AIDS (Gilbert & Walker, 2009; Seeley & Russell, 2010) and indeed for most of the participants in our study. ARVs made most women look and stay healthy, allowing them to maintain relationships with families and other social networks (Nam, Fielding, Avalos, Dickinson, & Gaolathe, 2008). In their research, Gilbert and Walker (2009, p. 1126) suggest that ARVs not only make “life possible” but also powerfully transform people’s experience of the illness. The participants in their study talked about appearing normal as well as looking and feeling better. Gilbert and Walker (2009, p. 1126) contend that due to having access to ARVs, a “process of normalisation” eventuates among HIV-positive people. This recovery of “a normal body image,” Russell and Seeley (2010, p. 378) argue, is crucial for individuals’ “self-esteem and social identity.”

Izugbara and Wekesa (2011, p. 875) suggest that the uptake of ARVs creates “new forms of social selves” among HIV-positive people. Some of the participants in their study suggested that they could do many things that they would not have been able to do because of their illness. Some even said that they had more self-confidence. This was also apparent among the women in our study. ARVs allowed them to function normally in their everyday life, to be able to look after their children and parents. Because of ARVs, they are able to produce new social selves as normal women and mothers.

Unarguably, ARVs have provided hope to people living with HIV/AIDS (Nam et al., 2008; Rhodes et al., 2009). ARVs provide medical promise (Rhodes et al., 2009) as they offer hope for gaining health and well-being to these individuals. The participants in the study by Nam et al. (2008, p. 304) had “hope for longevity, hope for their future, hope to provide for their children until they reached adulthood, and even hope for a cure.” The women in our study are no exception. The women in our study saw ARVs as a life-saving thing. What is more important, however, is that the women took ARVs for the sake of their family members, particularly their children. ARVs would help them to live longer so that they could see the children grow up and able to live independently. Previous research has suggested that feelings of social obligation to loved ones is the main motivation that makes HIV-positive individuals take their medications (Nam et al., 2008; Wasti, Simkhada, Randall, Freeman, & van Teijlingen, 2012; Watt et al., 2009; Wayson Locher, Pargament, & Duggan, 2007).

The Darker Side of ARVs

ARVs also have their darker side. They create chaos (Frank, 1995) for many people. ARVs are different from other medications in ordinary life. Usually, medicines should make people feel better, but ARVs initially make people feel sick. Many people experience side effects and adverse events from ARVs (Nyanzi-Wakgholi, Medina Lara, Munderi, & Gilks, 2012). The noticeable side effects of ARVs can possibly reveal the HIV status of the person. Also, the chaos of adverse effects could result in loss of control and giving-up of self to the illness. Illness chaos may lead to a dispossession of hope, or even feelings of despair (Smith & Sparkes, 2005). Thus, the medical promise of HIV treatment (Rhodes et al., 2009) is doubted, and as a consequence treatment may be resisted (Rhodes et al., 2009). Side effects of ARVs have been found to lead to non-adherence and discontinuation of treatment (Johnson et al., 2011; Lee, 2006; Stevens & Hildebrandt, 2009).

However, non-adherence and discontinuation of ARVs did not occur with the majority of Thai women in our study. This is mainly because they needed to have medications to survive for their children and families. Children represent a “meaning giving force” to the lives of many HIV-positive women (Mayers, Naples, & Nilsen, 2005, p. 93). Wayson Locher et al. (2007) point out that some women in their study would stop ART treatment if they did not have children. It seems that the women in our study balanced what Badahdah and Pedersen (2011, p. 703) term “the good and the bad of ART” in their decision-making. The women might be affected by ARVs, but they continued to adhere to their medication so that they would be able to live longer to perform their duties as mothers and carers of their aged parents. Due to the fear of side effects of ARVs, one woman was reluctant to take them. This is a reflection of chaos (Frank, 1995) as discussed above and it suggests that ARVs might not be accepted by some HIV-positive people (Lee, 2006; Stevens & Hildebrandt, 2009). However, this reluctance was only suggested by one participant in our study.

Performing Health Work

Health work, McCoy (2009, p. 130) suggests, is “understood as whatever physical, emotional, mental and interactive work people do.” This health work assists in the maintenance or restoration of their health. Regarding health work associated with ARVs, it is not just taking the recommended medications, but “taking them at the right times,” so that “successful repetition of scheduled dosing day by day” can be achieved. Taking ARVs has become habitual for HIV-positive people (Conrad, 1985, p. 32); it is a daily routine that these people have to engage in so that they can avoid unwanted circumstances and their health can be improved. In the case of people living with HIV/AIDS, although it is something that they have to do in their everyday life, they know very well that missing the time of the dose can mean drug resistance and it can further complicate their health (Ammaranond & Sanguansit-tianan, 2012; Arbune et al., 2013; Russell & Seeley, 2010). Jones (2003) has referred to this health work as “Life in a Pill Bottle” (p. 62). Metaphorically, this “Life in a Pill Bottle” portrays the vantage of HIV medication on the lives of HIV-positive individuals. Health maintenance in chronic illness, for example adhering to drug and treatment plans, can be very hard work (Thome, 1993). This is particularly so for women living with HIV/AIDS (Jones, 2003). Women tend to be restricted by their multiple roles and responsibilities. As such, they have less time and freedom to concentrate on themselves and their health needs (Gaskins, 2001). Despite hard work, the women in our study performed their health work to ensure that their health could be improved and thus allow them to live a healthier and longer life.

Individuals actively construct meanings about treatment (Wong & Ussher, 2008). Despite difficulties associated with medication-taking practices, some individuals adhere strictly to their recommended treatments (Lewis, Colbert, Erlen, & Meyers, 2006). For the women in our study, the need to adhere to treatment was a personal responsibility toward their children and aged parents. Although ARVs have allowed HIV-positive people to gain longevity, for some individuals the gain is “without hope and future” (Park-Wyllie, Strike, Antoniou, & Bayoumi, 2007, p. 254). To our participants, however, the gain in longevity gave them more hope and future. Although they realized that they would live with HIV for the rest of their lives, longevity allowed them to have more time to take care of their children and other family members. ARVs allowed them to die with eyes closed (tai ta lab), a metaphor that Thai people use when an individual dies without anxiety or worry about their children (Balthip, Boddy, & Siriwatanamethanon, 2013).

Performing health work (medication-taking practices) can be stressful and emotionally depleting (Badahdah & Pedersen, 2011). There is also stigma associated with medication-taking practices (Ezekiel et al., 2009). Although ARVs have offered an opportunity for a normal life to HIV-positive people, the stigma associated with HIV/AIDS continues to be powerful (Smith & Mbajwem, 2010). Thus, individuals taking ARVs attempt to manage their medication-taking practices in secret (Izugbara & Wekesa, 2011; Tam et al., 2011). Medication-taking practices that are performed in public, and for a lengthy period of time, could excite suspicion among others, even among family members who do not know about the illness status of the person. It signifies that something is wrong with the person (Badahdah & Pedersen, 2011). In addition, what we have witnessed is that stigma and secrecy relating to ARVs encourages HIV-positive individuals to invent “normal pill accounts” (Conrad, 1985, p. 35) for their medication-taking practices that might reduce the curiosity and suspicion of others (Badahdah & Pedersen, 2011; Musumari et al., 2013; Tam et al., 2011). The women in our study also adopted several stratagems to hide their HIV status to avoid stigma that might occur.

Conclusion

ARVs have provided hope for HIV-positive people. ARVs act as part of “people’s ‘quests’ to regain control, create order, reduce dependence on others, and to feel ‘normal’ again” (Russell & Seeley, 2010, p. 376). However, as Nguyen et al. (2007) suggest, it is crucial to pay attention to how individuals experience and deal with the challenges associated with ARVs in their everyday life within a local context. A good understanding of the local discourse, motivation, and concerns about ARVs may assist in the expansion and sustainability of ARV therapy within the socio-cultural context of the locality (Watt et al., 2009). This article is based on qualitative research. Our findings cannot necessarily be generalized across Thai population. However, the findings contribute to theoretical understanding about the meanings of ARVs and medication-taking practices from one low-income location, and have implications for health policy relating to the provision of ARVs. As Thailand continues to expand its ARV programs, it is essential to examine factors that are associated with medication-taking practices and ARV adherence so that future implementation attempts can succeed (Li et al., 2010). In addition, a better understanding of issues that are meaningful to HIV-positive women may assist health care providers in their attempt to provide appropriate ARV services to them and allow policy-makers to make policy that meets the needs of women living with HIV/AIDs in Thailand and elsewhere. Our findings also contribute to future research regarding ARV therapy and women living with HIV/AIDS in different socio-cultural contexts.

Footnotes

Acknowledgements

We are grateful to all the women who participated in this study. We thank Frances Happ who edited the paper for us.

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

Author Biographies

Pranee Liamputtong, PhD, is a professor at the School of Public Health and Human Biosciences, La Trobe University in Melbourne, Australia.

Niphattra Haritavorn, PhD, is an assistant professor at the Faculty of Public Health, Thammasat University, Thailand.

Niyada Kiatying-Angsulee, PhD, is a manager at the Drug System Monitoring and Development Program, Chulalongkorn University, Thailand.

References

Ammaranond

Sanguansittianan

(2012). Mechanism of HIV antiretroviral drugs progress toward drug resis-tance. Fundamental & Clinical Pharmacology, 26, 46–161.

Arbune

Georgescu

Cuciureanu

Dobre

(2013). Effectiveness and safety of salvage therapy on Romanian HIV infected patients. Famacia, 61, 390–397.

Badahdah

A. M.

Pedersen

D. E.

(2011). “I want to stand on my own legs”: A qualitative study of antiretroviral therapy adherence among HIV-positive women in Egypt. AIDS Care, 23, 700–704. doi:10.1080/09540121.2010.-534431

Balthip

Boddy

Siriwatanamethanon

(2013). Achieving harmony: Moving from experiencing social disgust to living with harmony in people with HIV/AIDS in the Thai context. In Liamputtong

(Ed.), Stigma, discrimination and living with HIV/AIDS: A cross-cultural perspective (pp. 357–375). Dordrecht, The Netherlands: Springer.

Berneys

Rhodes

Terzie

K. J.

(2010). “You should be grateful to have medicines”: Continued dependence, altering stigma and the HIV treatment experience in Serbia. AIDS Care, 22(Suppl. 1), 14-20.

Braun

Clarke

(2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–101. doi:10.1191/1478088706qp063oa

Bryman

(2012). Social research methods (4th ed.). Oxford, UK: Oxford University Press.

Bury

(1991). The sociology of chronic illness: A review of research and prospects. Sociology of Health & Illness, 13, 451–467.

Chasombat

McConnell

M. S.

Siangphoe

Yuktanont

Jirawattanapisal

Fox

. . . Pinyopornpanich

(2009). National expansion of antiretroviral treatment in Thailand, 2000-2007: Program scale-up and patient outcomes. Journal of Acquired Immune Deficiency Synd-romes, 50, 506–512.

10.

Conrad

(1985) The meaning of medication: Another look at compliance. Social Science & Medicine, 20, 29–37.

11.

Edwards

L. V.

(2006). Perceived social support and HIV/AIDS medication adherence among African Ameri-can women. Qualitative Health Research, 16, 679–691. doi:10.1177/1049732305281597

12.

Ezekiel

M. J.

Talle

Juma

J. M.

Klepp

K.-I.

(2009). “When in the body, it makes you look fat and HIV negative”: The constitution of antiretroviral therapy in lo-cal discourse among youth in Kahe, Tanzania. Social Science & Medicine, 68, 957–964. doi:10.1016/j.socs-cimed.2008.12.016

13.

Foucault

(1988) Technologies of the self. In Martin

L. H.

Gutman

Hutton

P. M.

(Eds.), Technologies of the self: A seminar with Michel Foucault (pp. 16–49). Amherst: University of Massachusetts Press.

14.

Frank

A. W.

(1995). The wounded storyteller. Chicago: Uni-versity of Chicago Press.

15.

Gaskins

(2001). Women and HIV: Across class, countries and cultures. Journal of the Association of Nurses in AIDS Care, 12, 15–16. doi:10.1016/S1055-3290(06)60213-6

16.

Gilbert

Walker

(2009). “They (ARVs) are my life, without them I’m nothing”—Experiences of patients atten-ding a HIV/AIDS clinic in Johannesburg, South Africa. Health & Place, 15, 1123–1129. doi:10.1016/j.health-place.2009.06.006

17.

Izugbara

C. O.

Wekesa

(2011). Beliefs and practices about antiretroviral medication: A study of poor urban Kenyans living with HIV/AIDS. Sociology of Health & Ill-ness, 33, 869–883. doi:10.1111/j.1467-9566.2010.01328.x

18.

Johnson

M. O.

Dilworth

S. E.

Taylor

J. M.

Darbes

L. A.

Comfort

M. L.

Neilands

T. B.

(2011). Improving cop-ing skills for self-management of treatment side effects can reduce antiretroviral medication nonadherence among people living with HIV. Annals of Behavioral Medicine, 41, 83–91.

19.

Jones

S. G.

(2003). Life in a pill bottle: The experience of taking HIV medications. International Journal for Human Caring, 7, 57–65.

20.

Lee

(2006). The role of the pharmacist in improving adherence to HIV therapy. Review, 5, 114–119.

21.

Lewis

Colbert

Erlen

Meyers

(2006). A qualitative study of persons who are 100% adherent to antiretroviral therapy. AIDS Care, 18, 140–148. doi:10.10-80/09540120500161835

22.

Guoping

Ding

Tian

Lee

(2012). Perceived burden in adherence of antiretroviral treatment in rural China. AIDS Care, 24, 502–508. doi:10.1080/095-40121.2011.613912

23.

Lee

S.-J.

Wen

Lin

Wan

Jiraphongsa

(2010). Antiretroviral therapy adherence among patients living with HIV/AIDS in Thailand. Nursing and Health Sciences, 12, 212–220. doi:10.1111/j.14422018.2010.005-21.x

24.

Liamputtong

(2007). Researching the vulnerable: A guide to sensitive research methods. London: SAGE.

25.

Liamputtong

(2010). Performing qualitative cross-cultural research. Cambridge, UK: Cambridge University Press.

26.

Liamputtong

Haritavorn

Kiatying-Angsulee

(2009). HIV and AIDS, stigma and AIDS support groups: Perspectives from women living with HIV and AIDS in central Thailand. Social Science & Medicine, 69, 862–868. doi:10.1016/j.socscimed.2009.05.040

27.

Liamputtong

Haritavorn

Kiatying-Angsulee

(2012). Living positively: The experiences of Thai women in central Thailand. Qualitative Health Research, 22, 441–451. doi:10.1177/1049732311421680

28.

Lyttleton

Beesey

Sitthikriengkrai

(2007). Expanding community through ARV provision in Thai-land. AIDS Care, 19(Suppl. 1), S44–S53. doi:10.1080/095-40120601114659

29.

Mayers

A. M.

Naples

N. A.

Nilsen

R. D.

(2005). Existential issues and coping: A qualitative study of low-income women with HIV. Psychology & Health, 20, 93–113. doi:10.1080/08870440410001722949

30.

McCoy

(2009). Time, self and the medication day: A closer look at the everyday work of “adherence.” Sociology of Health & Illness, 31, 128–146. doi:10.1111/j.1467-9566.-2008.01120.x

31.

Mishler

E. G.

(2005). Patient stories, narratives of resistance and the ethics of humane care. Health, 9, 431–451. doi:10.1177/1363459305056412

32.

Moitra

Herbert

J. D.

Forman

E. M.

(2011). Accep-tance-based behavior therapy to promote HIV medication adherence. AIDS Care, 23, 1660–1667. doi:10.1080/09540121.2011.579945

33.

Morse

(2006). Strategies of intraproject sampling. In Munhall

P. L.

(Ed.), Nursing research: A qualitative perspective (4th ed., pp. 529–539). Sudbury, MA: Jones & Bartlett.

34.

Musumari

P. M.

Feldman

M. D.

Techasrivichien

Wouters

Ono-Kihara

Kihara

(2013). “If I have nothing to eat, I get angry and push the pills bottle away from me”: A qualitative study of patient determi-nants of adherence to antiretroviral therapy in the Demo-cratic Republic of Congo. AIDS Care, 25, 1271–1277. doi:10.1080/09540121.2013.764391

35.

Nam

S. L.

Fielding

Avalos

Dickinson

Gaolathe

(2008). The relationship of acceptance of denial of HIV-status to antiretroviral adherence among adult HIV patients in urban Botswana. Social Science & Medicine, 67, 301–310. doi:10.1016/j.socscimed.2008.03.042

36.

Nyanzi-Wakholi

Medina Lara

Munderi

Gilks

, on behalf of the DART Trial Team (2012). The charms and challenges of antiretroviral therapy in Uganda: The DART experience. AIDS Care, 24(2), 137-142.

37.

National AIDS Prevention and Alleviation Committee Thailand. (2010). UNGASS country progress report Thai-land: Reporting period 2008-2009. Retrieved from http://http://data.unaids.org/pub/Report/2010/thailand_2010_country_progress_report_en.pdf

38.

Nettleton

(2006). “I just want permission to be ill”: Towards a sociology of medically unexplained symptoms. Social Science & Medicine, 62, 1167–1178. doi:10.1016/j.socscimed.2005.07.030

39.

Nguyen

V.-K.

Ako

C. Y.

Niamba

Sylla

Tiendre-beogo

(2007). Adherence as therapeutic citizenship: Im-pact of the history of access to antiretroviral drugs on ad-herence to treatment. AIDS, 21(Suppl. 5), S31–S35. doi:10.1097/01.aids.0000298100.48990.58

40.

Park-Wyllie

L. Y.

Strike

C. S.

Antoniou

Bayoumi

A. M.

(2007). Adverse quality of life consequences of antiretroviral medications. AIDS Care, 19, 252–257. doi:10.1080/09540120600774180

41.

Peltzer

Ramlagan

(2011). Perceived stigma among patients receiving antiretroviral therapy: A prospective study in KwaZulu-Natal, South Africa. AIDS Care, 23, 60–68. doi:10.1080/09540121.2010.498864

42.

Rhodes

Bernays

Terzić

K. J.

(2009). Medical promise and the recalibration of expectation: Hope and HIV treatment engagement in a transitional setting. Social Science & Medicine, 68, 1050–1059. doi:10.1016/j.socscimed.20 08.12.017

43.

Rogers

Day

J. C.

Williams

Randall

Wood

Healy

Bentall

R. P.

(1998). The meaning and management of neuroleptic medication: A study of patients with a diagnosis of Schizophrenia. Social Science & Medicine, 47, 1313–1323.

44.

Russell

Seeley

(2010). The transition to living with HIV as a chronic condition: Working to create order and control on anti-retroviral therapy. Social Science & Medicine, 70, 375–382. doi:10.1016/j.socscimed.2009.-10.039

45.

Scioli

MacNeil

Partridge

Tinker

Hawkins

(2012). Hope, HIV and health: A prospective study. AIDS Care, 24, 149–156. doi:10.1080/09540121.2011.597943

46.

Seeley

Russell

(2010). Social rebirth and social transformation? Rebuilding social lives after ART in rural Uganda. AIDS Care, 22(Suppl. 1), 44–50. doi:10.1080/09540121003605054

47.

Shim

J. K.

Russ

A. J.

Kaufman

S. R.

(2007). Clinical life: Expectation and the double edge of medical promise. Health, 11, 245–264.

48.

Smith

Sparkes

A. C.

(2005). Men, sport, spinal cord injury, and narratives of hope. Social Science & Medicine, 61, 1095–1105. doi:10.1016/j.socscimed.2005.01.011

49.

Smith

D. J.

Mbajwem

B. C.

(2010). Antiretroviral therapy and reproductive life projects: Mitigating the stigma of AIDS in Nigeria. Social Science & Medicine, 71, 345–352. doi:10.1016/j.socscimed.2010.04.006

50.

Srikantiah

Ghidinelli

Bachanim

Chasombat

Daoni

Mustikawati

D. E.

. . . Narain

J. P.

(2010). Scale-up of national antiretroviral therapy programs: Pro-gress and challenges in the Asia Pacific region. AIDS, 24(Suppl. 3), S62–S71. doi:10.1097/01.aids.0000390091-.45435.ea

51.

Stevens

P. E.

Hildebrandt

(2009). Pill taking from the perspective of HIV-infected women who are vulnerable to antiretroviral and treatment failure. Qualitative Health Research, 19, 593–604. doi:10.1177/1049732309333272

52.

Tam

V. V.

Pharris

Thorson

Alfven

Larsson

(2011). “It is not that I forget, it’s just that I don’t want other people to know”: Barriers to and strategies for adherence to antiretroviral therapy among HIV patients in Northern Vietnam. AIDS Care, 23, 139–145. doi:10.1080/09540121.2010.507741

53.

Thome

(1993). Negotiating health care: The social context of chronic illness. Newbury Park, CA: SAGE.

54.

Thomson

(2003). Lazarus phenomenon: An exploratory study of gay men living with HIV. Social Work in Health Care, 37(1), 87–114. doi:10.1300/J010v37n01_05

55.

Uusküla

Laisaara

K.-T.

Raaga

Smidtb

Semjo-novab

Koganb

. . . Dehovitz

(2012). Antiretroviral therapy (ART) adherence and correlates to nonadherence among people on ART in Estonia. AIDS Care, 24, 1470–1479. doi:10.1080/09540121.2012.672724

56.

Ware

N. C.

Wyatt

M. A.

Tugenberg

(2006). Social relationships, stigma and adherence to antiretroviral therapy for HIV/AIDS. AIDS Care, 18, 904–910. doi:10.1080/09540120500330554

57.

Wasti

S. P.

Simkhada

Randall

Freeman

J. V.

van Teijlingen

(2012). Barriers to and facilitators of antire-troviral therapy adherence in Nepal: A qualitative study. Journal of Health Population and Nutrition, 30, 410–419.

58.

Watermeyer

(2011). “Now here come the pills that are going to save your life”: Pharmacists’ discussions of antiretroviral drugs in a context of life and death. AIDS Care, 23, 807–813. doi:0.1080/09540121.2010.534640

59.

Watt

M. H.

Maman

Earp

J. O.

Eng

Setel

P. W.

Go-lin

C. E.

Jacobson

(2009). “It’s all the time in my mind”: Facilitators of adherence to antiretroviral therapy in a Tanzanian setting. Social Science & Medicine, 68, 1793–1800. doi:10.1016/j.socscimed.2009.02.037

60.

Wayson Locher

Pargament

Duggan

(2007). Antiretroviral therapy in the lives of women of colour with HIV. AIDS Care, 19, 1048–1051. doi:10.1080/09540120-701335253

61.

Wong

W. K.

Ussher

(2008). How do subjectivity-cons-tructed meanings ascribed to anti-HIV treatments affect treatment-adherent practice? Qualitative Health Research, 18, 458–468. doi:10.1177/1049732308314852