Pranee Liamputtong (ed.)Women, Motherhood and Living with HIV/AIDS2013A Cross-Cultural Perspective10.1007/978-94-007-5887-2_15© Springer Science+Business Media Dordrecht 2013
15. Women, Motherhood, and Living Positively: The Lived Experience of Thai Women Living with HIV/AIDS
(1)
School of Public Health, La Trobe University, Kingsbury Drive, Bundoora, VIC, 3086, Australia
(2)
Faculty of Public Health, Thammasat University, Rangsit Road, Rangsit, Patoomthani, 12121, Thailand
(3)
Social Research Institute (CUSRI), Chulalongkorn University, Bangkok, 10330, Thailand
Abstract
Living with an incurable illness such as HIV/AIDS is a stressful experience. However, many HIV-positive individuals are able to maintain their emotional well-being. This begs the question of what strategies these individuals employ to allow them to do so. In this chapter, we examine how Thai women who are mothers and living with HIV/AIDS dealt with the illness. In-depth interviews were conducted with 26 women in central Thailand. The women adopted several strategies to deal with their HIV status including taking care of own self, accepting one’s own faith, disclosing their HIV status to family, and joining AIDS support groups. These strategies can be situated within the “living positively” discourse which helps to create a sense of optimism to combat the HIV epidemic among the women. Additionally, the acceptance of their HIV status plays an essential role in the meaning-making process because it assists the women to sustain the equilibrium of their emotional well-being.
1 Introduction
The HIV/AIDS epidemic has entered its fourth decade and continues to be a major public health problem worldwide (Norman et al. 2009). It has now tremendously affected women around the globe (Zhou 2008). Of the 33.4 million people worldwide who are living with HIV/AIDS in 2008, 15.7 million were women (The Joint United Nations Programme on HIV/AIDS (UNAIDS) AIDS epidemic update, 2009). In Asia, the AIDS epidemic continues to grow, and compared with 1.7 million in 2003, at the end of 2005, the number of women living with HIV was estimated at two million (UNAIDS 2005). Thailand is one of the Asian countries that have been hit hard by the epidemic of HIV/AIDS.
Ever since the diagnosis of the first case of AIDS in 1984, the epidemic has risen rapidly and now it has affected people from injecting drug users, sex workers, heterosexual men, their wives, and sexual partners to the infants of infected mothers (Singhanetra-Renard et al. 2001). Currently, about one million Thai people are living with HIV/AIDS (UNAIDS/World Health Organization (WHO) 2008). Although Thailand has successfully reduced the spread of HIV among female and male sex workers and their clients (McCamish et al. 2000), the number of HIV seroprevalence among pregnant women has steadily increased (Ruxrungtham and Phanuphak 2001). In 1998, there were approximately 23,000 HIV-positive women who gave birth in Thailand (Siriwasin et al. 1998), and around 26 % of HIV-infected women in Bangkok had HIV-negative partners. In 2007, there were 250,000 HIV-positive women, aged 15 and over, living in Thailand (UNAIDS/WHO 2008). Similarly to women in other parts of Asia (Ainsworth et al. 2003), Thai women contracted HIV from having sex within monogamous relationships with partners who engaged in high-risk behavior (Siriwasin et al. 1998; Liamputtong et al. 2009).
Living with HIV/AIDS signifies the need to deal with numerous emotional challenges resulting from compound losses, anxieties, fears, self-blame, and social stigmatization (Plattner and Meiring 2006). Culturally, HIV in Thai society is still perceived as a “death sentence.” Because physical and moral appearances are important in Thai society, shame is therefore experienced by Thai people infected with HIV/AIDS (Bennetts et al. 1999; Liamputtong et al. 2009). The continuing high rates of HIV/AIDS and the shame and stigmatization attached to the epidemic are due mainly to inadequate knowledge and understanding of the infection and its transmission among Thai people.
Although living with an incurable illness and feeling uncertainty about one’s own health condition is a very stressful experience, many HIV-positive individuals are able to maintain their emotional well-being (Pakenham and Rinaldis 2001). This begs the question of what strategies these individuals employ to allow them to do so (Plattner and Meiring 2006). In this chapter, we examine the strategies that Thai women who are mothers and living with HIV/AIDS use to deal with their health condition. In doing so, it is essential that we must situate our discussion within a theoretical framework, and the theory which is relevant to our research question examined in this chapter is the living positively discourse that we discuss below.
2 Living Positively Discourse: Theoretical Framework
Living positively discourse has been adopted to explain positive living among those with disabilities and illnesses, but it is particularly advocated for people living with HIV/AIDS. The discourse makes use of a specific “narrative account of life with HIV” to alter the damage, which is brought to one’s life by an HIV diagnosis, into a rational story (Levy and Storeng 2007: 56). The narrative is not just “a creative story making” but a means for an individual living with HIV/AIDS to reconcile the new reality within the existing prospect of his/her life. It emphasizes the ability of an individual living with HIV/AIDS to boost “self-fulfillment” in spite of the hardship associated with being diagnosed and living with a life-threatening health condition. This can be accommodated through changed actions and understandings characterized as “positive living advice” (Levy and Storeng 2007: 56).
For many individuals, in particular those who lack or have limited access to sufficient health care, adopting positive living advice offers a possible means to change the course of HIV/AIDS. It is suggested that healthy diet, exercise, sufficient sleep, stress decrease, preventive actions (such as using condoms to prevent the reinfection of HIV), and proper health-care seeking will enhance immune functioning of the body and hence postpone the inception of opportunistic infections and AIDS. Within the positive living discourse, it is theorized that the potential for individuals to participate in these behaviors is made possible by their “open and accepting attitude toward HIV” (Levy and Storeng 2007: 56). This can be achieved by revealing one’s HIV status to others such as family members and friends and participating in AIDS support groups where the discourses of positive living are often discussed and emotional and social support can be obtained. The living positively discourse contests not only “the image of the culpable AIDS sufferer” but also “the assumption that an HIV diagnosis leads to an inevitably rapid demise” (Levy and Storeng 2007: 56).
Living positively is essential for people living with HIV/AIDS because it contests the disapproving social interpretations of the disease. It is now known that HIV/AIDS has “a polysemic concept” (Levy and Storeng 2007: 59). The disease produces the disruption of the “embodied experience” of those living with it. It implies not just a continuing decline of the bodily immune reaction but has dealt with diverse meanings connected with sexuality, class, gender, and ethnicity. This has led Treichler (1988) to refer to AIDS as “an epidemic of signification.” Moral judgments such as good and bad, right and wrong, and responsibility and danger have been implanted within the social interpretations of HIV/AIDS (Levy and Storeng 2007). All too often, being infected with HIV is connected with promiscuity, unruly behavior, and other types of discriminated “risky” conducts (Levy and Storeng 2007: 59). As such, AIDS is seen as being produced by “a moral failure” of the individual (Brandt and Rozin 1997). Once labeled as such, these individuals are disconnected from other identity groups (Schoepf 2001). By definition then, they are despoiled and stigmatized (Levy and Storeng 2007). Living positively allows individuals living with HIV/AIDS to fight against the negative images of the disease and hence be able to deal with their conditions and environments in a more positive way.
Nevertheless, we contend that to be able to live positively, individuals are required to make meaning of their life circumstances. Here, the discourse of “meaning making” (Plattner and Meiring 2006) becomes relevant. The concept of meaning making was theorized by Park and Folkman (1997) within the broader framework of stress and coping theory. According to Park and Folkman, meaning making is “a psychological process” which elucidates how individuals construe acutely traumatic and potentially destructive incidents that occur to them. Often, on encountering a shocking and stressful experience, people would pose the question why it happened to them. In the process of looking for underlying explanations, people “construct meaning from the event.” Park and Folkman (1997) theorize that meaning making can be perceived as both “part of coping” and “an outcome of the coping process” which individuals experience when dealing with stressful incidents. Meaning making can be different and change over time. This depends on the person’s broad outlook toward life and the personal significance that an event has for him/her. However, it is only through meaning making that people are equipped to cope with stressful life-changing events. Those who cannot make meaning out of specific experiences would have difficulties dealing with them (Park and Folkman 1997). According to Plattner and Meiring (2006), meaning-making discourse assists us to understand how individuals handle the situations of living with HIV/AIDS.
3 The Study
This chapter is based on our larger project on the experiences of women living with HIV and AIDS who have participated or are participating in drug trials in Thailand (see also Liamputtong et al. 2009). Because of the epidemic of HIV infection and AIDS in the country, numerous clinical trial centers have been established in Thailand. These trials are supported by international organizations and agencies in developed nations, mainly the United States. The HIV/AIDS Collaborative Centre was established in 1990 within the Ministry of Public Health in Nonthaburi, located on the periphery of Bangkok. It is a joint venture of the United States Centers for Disease Control and Prevention and the Ministry of Public Health of Thailand. Most clinical trials in Thailand are carried out in general and specialist hospitals and medical schools at the provincial, regional, and national levels (Chokevivat 1998).
A qualitative approach is adopted in this study. This approach is appropriate 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 appropriate when the researcher has little knowledge of the researched participants and their world views (Padgett 2008; Liamputtong 2013).
Because we aimed to examine the lived experiences of women living with HIV and AIDS, descriptive phenomenology was adopted as our methodological framework. Descriptive phenomenology allows researchers to understand the issues under study from the experiences of those who have lived through it (Carpenter 2010; Norlyk and Harder 2010). Hence, this permitted us to examine the experiences of HIV-positive women and how they dealt with HIV and AIDS in our study. Within the phenomenological framework, in-depth interviews are usually adopted by qualitative researchers. In this study, in-depth interviews and some participant observations were conducted with 26 Thai women.
Purposive sampling technique (Morse 2006; Liamputtong 2013) was adopted; that is, only Thai women who had experienced HIV and AIDS and who were participating, or had participated, in HIV clinical trials were approached to participate in the study. The participants were recruited through advertising on bulletin boards at hospitals where drug trials have been undertaken and personal contacts made by the Thai coresearchers, who have carried out a number of HIV and AIDS research projects with Thai women. In conducting research related to HIV and AIDS, the recruitment process needs to be highly sensitive to the needs of the participants (Liamputtong 2007; Stevens et al. 2010). The sensitivity of this research guided our discussion of how we would approach the women and invite them to take part in this research. We only directly contact potential participants ourselves after being introduced by our network or gatekeepers. Because of the sensitive nature of this study, we also relied on snowball sampling techniques, that is, our previous participants suggested others who were interested in participating (Liamputtong 2013). We enlisted the assistance of leaders of two HIV and AIDS support groups to access the women in this study. We also took part in the activities of the groups as part of the methodology of our study.
The number of participants was determined by theoretical sampling technique, which is to stop recruiting when little new data emerges, and this signifies data saturation (Patton 2002; Liamputtong 2013). The sociodemographic 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 five were over 40. Most (25) are Buddhist and one is Muslim. Nineteen women were living with their new partners at the time of the interview, one was married, two were divorced, two were widowed, and another two were single mothers. Twelve women had only primary school education, 11 finished secondary school education, and three had vocational college training. At the time of the interview, seven women worked as outreach health workers, six were self-employed, four were office workers, five had casual employment, one was unemployed, and three women performed home duties. All the women, except one, 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 three 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 two women had a family income of more than 10,000 baht. Eighteen women were covered by the “30 baht scheme” health insurance (under the coverage of the government), seven were under the “Social Security scheme,” and one has no health insurance coverage.
Interviews were conducted in the Thai language to maintain as much as possible the subtlety and any hidden meaning of the participant’s statements (Liamputtong 2010). Prior to the commencement of the study, ethical approval was obtained from the Faculty of Health Sciences Human Ethics Committee, La Trobe University, Australia, and Ethics Committee at Chulalongkorn University, Thailand. Before making an appointment for interviews, the participant’s consent to participate in the study was sought. 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 and 2 h. Each participant was paid 200 Thai baht as a compensation for their time in taking part in this study. This incentive is necessary for a sensitive research because it is a way to show that research participants are respected for their time and knowledge.
When we participated in women’s activities, they were informed that it was part of our research and there was no separate informed consent obtained for this method. We used participant observation as a means of field observations.
With permission from the participants, interviews were tape-recorded. The tapes were then transcribed verbatim in Thai for data analysis. The in-depth data was analyzed using a thematic analysis (Braun and Clarke 2006; Liamputtong 2013). This method of data analysis aims to identify, analyze, and report patterns or themes within the data. Initially, we performed open coding where codes were first developed and named. Then, axial coding was applied which was used to develop the final themes within the data. This was done by reorganizing the codes which we have developed from the data during open coding in new ways by making connections between categories and subcategories. This resulted in themes, and they were used to explain the lived experiences of the participants. The emerging themes are presented in the findings section. In presenting women’s verbatim responses, we used their fictitious names to preserve confidentiality of the women’s identity.
Several themes emerged from the interview data. These themes are discussed according to the sequence of events which reflect the lived experiences of the participants. They are presented below.
4 Learning About HIV-Positive Status
As Singhanetra-Renard and colleagues (2001) and Maman and associates (2009) have shown in their studies, most women in our study too learned about their HIV status through their contacts with health services (see also Chaps. 3, 4, 16, and 17 in this volume). Most often, it was during their pregnancies when they went for an antenatal care checkup, referred to as fak thong in Thailand, that they were told by health professionals that they pen AIDS (have AIDS):
I knew about it when I was two months pregnant. Because I came to fak thong at hospital that I learned that I pen AIDS. When I was told about it, I first felt so sad because it should not have happened to me like this. (Ajchara)
Nataree was suspicious of her illness about 13 years ago when her husband was still alive, but she never went for a blood test. Even after his death, she was still unsure if she had contracted the disease from her husband. After living with a new partner, she became pregnant, and it was through antenatal care that she learned about her HIV status:
I became pregnant with my new partner’s child so I went for a checkup. After the checkup, they told me to come back for a counseling session, and that was the time they told me that I had a virus and they asked me if I wanted to take antiretroviral drugs which will prevent me passing the disease to my baby.
Other women learned about the HIV status through contact with health professionals for other health issues. One woman had to have an operation to remove a lump in her uterus. After a blood test, she was told that she has AIDS. Other women only came to know about their HIV status when their husbands/partners became very ill.
5 Women’s Feelings Once Learned
The inevitability of being confronted by death, sooner or later, and the stigma attached to HIV/AIDS make the disease “one of the most feared of all diseases” (Plattner and Meiring 2006: 241). Hence, being informed that one is HIV-positive is often met with feelings of shock and emotional devastation, and for many, they also have ideas of suicide (Jirapaet 2001; Maman et al. 2009; Ross et al. 2007a; see also Chaps. 3 and 12 in this volume). In the study conducted by Maman and colleagues (2009: 967), many participants were “emotionally unprepared” when informed about the diagnosis of HIV-positive status. Sanders (2008) also found in her research in the USA that most women were extremely shocked, frightened, and sorrowful on learning about their HIV status. This was mainly because of the fact that they believed they would die soon. In our study, Puangchompoo said she was so shocked about the bad news and she cried for three nights because she believed she would die very soon. Meena too said that:
When I knew the result that I was HIV-positive, I was so shocked. I walked out without any real feelings but only the thought that I had no more hope in this life. I could not speak and nam ta tok nai (my tears were coming down inside me). I went home and told my husband that the doctor found AIDS in me. He was also shocked and said nothing, just kept quiet.
For these women, being told that they had HIV was a disruption of “the taken-for-granted conceptions of self” (Levy and Storeng 2007: 58). The positive diagnosis of HIV status produces what Pierret (2000: 59) has referred to as a “watershed” that unravel the “before” and “after” life of most HIV-positive people. Kesaree remarked:
I could not say a word after hearing what the doctor told me. I only cried and cried because I could not accept it. It was my first pregnancy. And I was only selling my groceries at home, never went out to mix with people. I could not accept that I have the disease. From that day on, I could not eat even though I was pregnant. And I was so stressed out. I was losing weight because I could not eat and because of the stress.Stay updated, free articles. Join our Telegram channel
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