Perceptions of HIV/AIDS and caring for people with terminal AIDS in southern Thailand

Songwathana P; Manderson L


Vol.10 No. 2 Jun.1998


Copyright by AIDS Care

PERCEPTIONS OF HIV/AIDS AND CARING FOR PEOPLE WITH TERMINAL AIDS IN SOUTHERN THAILAND Abstract This study presents data collected from village-based ethnographic research conducted in southern Thailand in 1995-1996, and focuses on perceptions of HIV/AIDS infection, patients with AIDS and theft provision of care. Individual interviews were conducted with 300 village women. These data were supplemented by data from 14 focus group discussions involving 100 participants, both men and women, randomly selected from six villages in Hatyai district, Songkla Province, Thailand. In addition, 23 people with HIV/AIDS and their caregivers participated in subsequent in-depth interviews. Participants generally obtained theft information about HIV/AIDS from television and radio, and the information they obtained was generally negative. AIDS was perceived as a disease associated with dirt, danger and death, although it was also considered to be a disease of karma (rok khong khon mee kam) and a 'woman's disease' (rok phuying) associated with prostitution. Few women perceived themselves to be at risk of infection because they 'trusted' their husbands to be faithful. There were some differences in attitudes towards caring for AIDS patients among people who lived in semi-urban and rural areas, and with areas which had not yet experienced AIDS among community members. Focus group discussions clarified issues related to the illness and patterns of care giving among men and women. Areas of misperception and confusion were identified and will be used for interventions. Introduction The number of people infected with AIDS, its mode of transmission and its impact on the whole society, have led to the conception that AIDS is not only an infectious disease, but also a social one (Ankarh, 1991, Bennett, 1987). Transmission in Thailand was initially related to high risk groups such as drug users, prostitutes and men having multiple sex partners, then spreading to the 'general population'. Despite the success of the AIDS campaign which has promoted '100% condom use', and a slowing in the number of people infected with AIDS, sexual behaviour does not appear to have changed much, and the number of people who are sick with AIDS and the prevalence of HIV in groups such as among pregnant women is increasing (Thailand, MOPH, 1995). Primary emphasis continues to be placed on prevention, however, and less attention has been directed to perceptions of the disease and care of people with AIDS in the community. HIV/AIDS presents many challenges to health education, health services and policies, particularly for family and community members who are assumed to be responsible for the care of people sick with AIDS. Attempts to promote behavioural changes and the provision of care in the household and at community levels are key objectives for many AIDS prevention and care programmes. However, approaches should not only focus on a few aspects because AIDS is a complex issue and appropriate AIDS policies and programmes need to take account of the cultural and social context in which individuals experience illness, and in which their illness is managed. AIDS in southern Thailand Of the cases reported, the majority of AIDS patients (78.64%) are believed to have contracted HIV through heterosexual transmission. About half of these cases (49.95%) are from the upper north provinces, i.e. Chiangmai, Chiangrai, Payaw (Thailand, MOPH, 1996). Although fewer cases are reported in the south, the latest figures indicate that the number of people suffering from AIDS is increasing steadily in all regions (Thailand, MOPH, 1996) (Figure 1). As an example, the cumulative number of HIV/AIDS patients at Hatyai and Songklanagarind Hospitals, the central hospitals in the south, is increasing each year. Conceptual framework Every disease, including AIDS, has symbolic representations and associated ideologies, myths and metaphors. Sontag (1979), in her first book on illness and metaphors, points out that illness metaphors: (1) can be positive or negative, (2) can change over time, (3) can apply to a single organ or the whole body, (4) can be formed without regard to the biological facts, and (5) can affect the whole life of the person carrying the diagnosis. AIDS may be perceived as a plague, punishment from God or bad luck, depending upon social and cultural context. The deceased's body with plastic wrap is, for example, is a part of the symbolism of AIDS in southern Thai people. This paper describes how southern Thai people perceive and respond to AIDS and care for people with HIV/AIDS, using an explanatory model framework. This includes how people perceive and give meaning, recognize and interpret signs, symptoms and severity, determine and negotiate etiology, give meaning to diagnosis, label and identify treatment and care strategies, and access outcomes. Explanatory models are held by everyone and are related to beliefs passed on through enculturation and learned through formal education, media exposure and personal experience (Kleinman, 1980; Young, 1982). Lay persons and health care professionals often have different models, particularly when patients and health professionals are from different cultural backgrounds, and this difference is seen as an impediment in health care delivery. Understanding the ways in which lay explanatory models are elaborated may assist in the negotiation of differences and in the effective development of public health education programmes related to AIDS. It may also increase people's adherence to prevention and care practices. The study area Data were collected from village-based ethnographic research conducted in Hatyai District, Songkla Province in Southern Thailand, during 1995-1996. Hatyai district is the largest of 12 districts in Songkla and is approximately 30 kilometres to the south-west of Songkla, 974 kilometres south of Bangkok. Hatyai is composed of 12 sub-districts, two municipalities (Hatyai and Banpru), 127 villages and 64,564 households. Its population was 326,979 in 1996 (male to female ratio is about 1 to 1). The religion of the majority of people is Buddhism (72%), Muslim (circa20%) and smaller populations of Christians (5%) and others (3%) (Thailand, Ministry of Interior, 1996). Hatyai is close to the northeast Thai-Malaysian border, and the city is therefore an important tourist destination. Commercial sex workers are primarily said to have migrated from northern Thailand (Yoddumnern-Attig, 1992). Hatyai has an image as a sex service centre and as having a thriving drug trade. Injecting drug use (of heroin, primarily) is endemic, with high prevalence of HIV infection among the IDU population (Thailand, MOPH, 1995). Most IDUs who contract HIV/AIDS are labourers and fishermen and this has affected local perceptions of risk and the impact of AIDS. Methodology Ethnographic research was undertaken to gain an understanding of local attitudes towards AIDS disease, AIDS patients and care provision. Research was conducted both in villages where there were known cases of AIDS and where none were known. The data collected were based upon four groups of people who were involved in the household provision of care. One hundred villagers (both male and female) participated in focus group discussions, and 300 village women (age over 15) who had assumed caregiving roles in households in six villages were interviewed in order to identify how women perceived AIDS and AIDS care. Interviews were conducted in southern Thai dialect, and face-to-face interviews were used as the most suitable means of collecting information in an area where functional literacy remains relatively low. In addition to these interviews, 23 patients with HIV/AIDS and 35 caregivers, four traditional healers and a few monks involved in providing care participated in subsequent in-depth interviews, allowing comparison to be made of their understandings and wider lay perspectives. Results and discussions Perceptions and meanings of AIDS Perceptions and meanings of AIDS in southern Thailand derive from three broad modalities. These are biomedical, traditional Thai medical and religious beliefs (the latter both Buddhist and Muslim). In general, people perceive AIDS from a biomedical model as a consequence of its promotion as a 'new disease' in the public media and through government and NGO AIDS campaigns. HIV prevention information has been based on fear arousal and has concentrated on high risk groups, with the consequence that AIDS is perceived as a disease without cure and a disease of promiscuity. Perceptions of AIDS are also influenced by media representations of its physical appearance (Lyttleton, 1996; Srirak, 1997; my observations). Several pictures display AIDS in negative ways, with pictures of patients who are very thin, pale, with ulcers and thrush in the mouth and ugly skin lesions covered with discharge. Such imagery perpetuates associations of AIDS with both dirt and danger. It was therefore not surprising that in the survey, 85.7% of village women who had heard about AIDS and all participants in the focus groups had negative pictures of AIDS. In focus group discussions, both women and men maintained that blood, discharge and sperm from AIDS patients are 'dirty fluids' and sources of transmission, and the notions of dirt, danger and death ran through many of the discussions. Bad blood is another important perception derived from folk beliefs in health and illness and now associated with AIDS. Blood is believed to be one of the main components of the body. Blood which is infected with germs is believed to be poisonous, resulting in weakness, with the colour of blood turning from red to black. Infected or poisoned blood is regarded as dangerous. As one man explained, 'if a person has AIDS, he or she has bad blood and it may be possible to transmit [the infection], I am not quite clear about AIDS when it gets into the body but I think it is very dangerous to come into contact with blood. I have seen black blood taken from someone who is sick in hospital, I think someone with AIDS would have black blood too ... black blood is bad and dangerous.' Because no vaccine or effective treatment is available, people respond to AIDS patients with considerable fear and anxiety. Patients themselves perceived that once they were infected with AIDS (HIV is not used in lay terminology by southern Thais), the destination is death only. Death from AIDS is perceived to be different from death from other causes. Key informant interviews and participant observation suggested that AIDS deaths are regarded as bad deaths (tai mai dee) rather than good deaths (tai dee), because the death follows prolonged suffering and disfigurement and usually, the untimely deaths of young people. According to Thai Buddhist belief, deaths in such circumstances are regarded as especially dangerous and polluting, due to the threat passed to survivors of the spirit of the deceased (phii). However, good or bad death is also linked to previous behaviour and the present status of the individual according to his or her karma. Etiology of AIDS Biomedical and folk or traditional medicine provide different but not necessarily incompatible explanations of the cause and transmission of AIDS. AIDS is mainly perceived to be caused by sam son or mua pase (promiscuous sex) and mua kem (injecting drugs), resulting in a viral infection or bad karma leading to affliction with AIDS. AIDS can also be caused supernaturally through the malevolence of others. The following findings are common to patients, their families and community members in this study. All participants were familiar with the term AIDS, although not HIV. Their understanding of the epidemiology of AIDS was unclear and ambiguous, reflecting different personal and social beliefs about AIDS causation and transmission, for example, why a husband has HIV while his wife has not, or why a mother has HIV but her infant has only a 1 in 3 chance of also being infected. There are numerous misunderstandings of transmission among villagers, too; for example, that AIDS can be transmitted by mosquito bites, through social contact like sharing food or eating utensils, using a common toilet, or from a cough or sneeze. These misunderstandings about HIV/AIDS occur within the general population and among those designated as 'high risk' (e.g. among sex workers as shown in Chandeying, 1992a 1992b; 1992c; Lyttleton, 1994; Maticka-Tyndale et al., 1994; Shah et al., 1991; Sweat et al., 1995, Ungphakorn & Sittitrai, 1994; These beliefs are also evident in other developing countries such as in Africa, India, China, etc. (Ankrah, 1991; Chaung, et al. 1993; Irwin et al., 1991; Porter, 1993). Incomplete information, particularly with respect to modes of protection and activities which will not result in infection, influence popular perceptions, resulting in unreasonable fear of contagion. AIDS is inevitably imagined to be dirty, dangerous and fatal. Despite this range of beliefs, people all believed that the main source of transmission of HIV was through sex or needle sharing. Some informants, mainly women, also spoke of infection in terms of the beliefs of karma in the Thai Buddhist context: He did really bad things, for example telling lies, stealing inheritance from his brother and sister, being promiscuous, gambling. All of these are wrong and immoral. It is a sin. So, he must be punished to have this disease (Interview, patient's oldest sister). This woman's reasoning is consistent with Buddhist concepts in which illness is believed to be a consequence of one own's past actions emphasizing individual responsibility for fate (Komin, 1985; Ratanakul, 1988). Good and bad fortune, including serious illness, are believed to be natural consequences of actions in this or a previous life (van Gorkom, 1988; Ratanakul, 1990). Another woman provided an account of how she felt about a person with AIDS, and her role as a caregiver: My son was suffering from this disease because of his karma. He was really ugly, he had a dirty skin lesion. I know he is going to die soon. I believe everyone born must die and this is a natural event. I feel that this is not only his karma but also my wan (suffering). I have had little opportunity to make merit in my life, this may be because I did bad things too. In addition, many Thai people in the south and elsewhere in Thailand believe in magical- animistic cults. The following example illustrates folk of Brahmanistic magic (sayyasaat) beliefs of tuuk kong, a kind of black magic or sorcery which falls into the realm of supernatural illness (Golomb, 1985). Illnesses of supernatural origin are believed to be caused by angry spirits, neglected ancestors or malicious human beings. A 35-year-old woman explained how she viewed her husband's illness, although she knew the diagnosis: My husband tuuk kong (black magic). Before he came to work as a forestry officer, there was a ritual for combating spirits and sorcerers because his office's land belonged to khon kheek [1] (Muslim people). He was told that there was an evil spirit (phii) in that area. His work was to catch people who were cutting wood and the owner of that land khon kheek was angry. I think that he may have sent the bad thing to my husband while he was weak. Since my husband wouldn't let him cut wood, he sent sickness to my husband. My husband was very healthy, he had had no sign of sickness until one day he had seizure of unknown cause. He did something wrong like break a taboo, I think. In the village where there were known cases, most villagers who lived nearby feared contact. They were concerned about the possibility of contamination from sharing water from a common well, or serving cooked food to the patient or sharing it with them once the diagnosis was common knowledge. Touching the patients body or patient's body or patient's belongings were also regarded as risky activities, skin contact, ulcer care, common utensil use, shared facilities (toilet seats) and so on, all place people at risk. Family members could all be 'contaminated' with AIDS as a result of proximity and social exchange. Fear of contagion was exacerbated by the local media which presented unclear messages of how family members could become infected if someone in the family were sick with AIDS. The possibility of contamination via close contact was therefore perceived to be associated with routine household activities. In consequence, villagers preferred to avoid direct contact as much as possible to minimize risks of infection. Symptom recognition and lay diagnosis Patients are more likely to define AIDS symptoms correctly than those who are not affected, because of direct experience. However, these descriptions are not consistent with clinical descriptions. People refer, for example, to 'Fat AIDS', 'AIDS with no symptoms' and 'fake AIDS'. What about real AIDS? Thin AIDS, AIDS with nodules and 'real AIDS' patients are described as having visible symptoms. To better understand the lay explanatory model of AIDS diagnosis, the mode of decision-making shown in Figure 2 describes who is an HIV/AIDS patient. It shows how lay people identify and diagnose AIDS. Five steps were described. Visible lesions seems to be important. In general, people may be diagnosed as having AIDS if they are not healthy, as judged in lay terms or as indicated in media representations of the disease. Any symptoms such as being thin, pale, dark or with dry skin, and any visible lesions--particularly skin lesions, rashes, nodules or thrush--suggest AIDS. In the context of villages, there is little privacy and any history or background of villagers is well known, particularly those related to immoral activities such as drug use, prostitution and other 'risk behaviour'. If this is the case, circumstantial evidence will point to a diagnosis of AIDS. Without such personal information, other occupational and migrational information may be used as indicative of risk. Village people believe that AIDS is not a problem among southern Thai, but it is a problem for people from northern and central Thailand, and hence those who have migrated from other parts of Thailand are more likely to be perceived as belonging to a high risk group. People who have been working in hotels, brothels and restaurants are also perceived to be at risk, especially where they may be involved in commercial sex work. Knowing that a blood test has been positive, by gossip or rumour from any source, provides confirmation of HIV status. Once people are assumed to be infected, particularly when presenting with physical symptoms indicative of AIDS, they tend to be isolated and stigmatized by other villagers. As a patient said, 'I have to hide myself, and I prefer to live in another place where I am not recognized'. Labelling Several terms are used for AIDS among lay people. The local terms in Hatyai fall into three broad categories: generic terms, symptomatological terms and folk terms. Generic terms. Generic terms derive from biomedicine. As indicated above, most generic terms are associated with dirt, danger and death. The common term used when discussing the disease is 'AIDS', equivalent to 'AIDS' in biomedical language. The terms rok sam son (a disease of promiscuity), mua pase (promiscuous sex) and mua kem (needle sharing) reflect the social and moral approbation of risk behaviours. The majority of Thai people associate HIV and other sexually transmitted diseases and behaviours, including promiscuity and homosexuality, as 'dirty'. As Quam (1990) states: 'A woman's vagina is a passage of menstrual blood, the penis is a passage of sperm and urine, and the anus is a passage of faeces, so all of these passages are "dirty".' This concept is applied in Thai constructions of AIDS as being a disease of promiscuity (rok sam son tang pate), a prostitute's disease (rok soapnee). no cure available), rok raai rang (a severe disease) and rok thi pen law tai luuk diew (a disease of death only) are also terms used in daily conversation, although they are not used exclusively for AIDS. These terms may need clarification in a village where there has been no prior AIDS infection and little understanding of AIDS, since the terms can refer to other terminal or chronic and crippling diseases, e.g. leprosy, cancer. Lyod buag (positive blood test) is also used as indicative of people who are infected with HIV/AIDS, although the term can also refer to other sexually transmitted diseases (STDs). Lyod buag was mainly perceived by villagers as a woman's disease or an STD, however, leading to considerable confusion between STDs and AIDS. Symptomatological terms. Fat AIDS (aids oun), thin AIDS (aids pom), AIDS with nodules (aids mee tum), AIDS without nodules (aids mai mee tum) and AIDS with decomposed skin (aids peui) are all used to describe AIDS and are closely related to the physical manifestations of infection. Symptomatological terms seem to be the most frequently used among patients as the manifestations of AIDS become more apparent. Hiddarn is also a term used by the elderly to refer to a specific skin lesion (hard skin) reputedly caused by sexual relations. Folk terms. Blame and disgust have played an important and often destructive role in the social response to AIDS. Rok sang khom rung kiat, or a disease of social loathing, is generally used by lay people. 'Woman disease' is also used for AIDS and is constructed from two concepts: the belief that AIDS occurred many years ago as an STDs, and that women who are regarded as promiscuous or are prostitutes (Ying Sopanee) are a reservoir or source of infection Hit (popular) is a term used for AIDS by some people and refers to its 'popularity', as evident in epidemiology reports and media campaigns. A disease of bad people (rok khong khon mai dee) and a disease of karma (rok khong khon mee kam) are also used in the folk category in association with religious beliefs. As an immediate cause as a result of having promiscuous sex or secondary cause by doing bad actions with or without any relationship with sex, the afflictions are thus the natural consequences of those actions. These concepts of causality are linked with ideas of karma in Thai Buddhist beliefs. The terms also indicate moral behaviour. The less likely people are to be involved in sex or any risk behaviour, the greater their (good) karma and the less likely they are to contract HIV. Finally, as noted earlier, AIDS may be referred to as a disease of bad blood or poison blood; this term is mainly used by patients. Treatment and care strategy Extensive health seeking may start after diagnosis and/or the emergence of physical symptoms. The concern of others may trigger treatment seeking. Hospitals and clinics are ranked as the first priority for specific treatment such as receiving antiviral drugs. However, these were not the only places used or preferred by all AIDS patients in this study. Traditional healers and herbalists were sought alternatively and after discharge from hospital and when the disease still persisted, the preference for care from traditional healers and herbalists as well as self-treatment slightly increased. Because no medical cure is available, several sources of care were used. Some patients preferred to stay home unless they feared rejection and family stigma. There was no evidence of family rejection in this study except one case of a family which was very poor and where fear of contagion was due to tuberculosis (although the family was fairly dysfunctional anyway). 'When I became sick, I didn't know where to go for treatment, I didn't know from whom and from where to ask for help.' This was expressed by a patient who came to a temple which has become especially popular for HIV/AIDS sufferers through its offer of cure. The temple is approximately 40 kilometres from Hatyai district and seven kilometres from the Malaysian border. More than 200 HIV/AIDS patients are housed here, while a thousand more have visited to collect drugs to take home. At least ten shelters have been established. A family member has to take care of any patient wishing to reside at the temple, who cannot help him or herself. A magic stone is rubbed, over which the abbot prays for power. The particles from the stone are mixed with coconut oil and boiled rice. The decoction is taken twice a day, morning and evening, and a wide range of other foods are prohibited during this period. Chanting and meditation are also taught by monks each day in this temple. The details of this will be described elsewhere, as a part of my thesis relating to health-seeking behaviour. Perception of care for people with HIV/AIDS As the number of people infected with HIV rises, the number developing the disease will also rise. This will mean that more and more patients will need someone to care for them during all phases of their illness. There has been a lack of research in the literature on lay perceptions towards caring for people with AIDS, except among health care workers. These perceptions are very important because they determine how people with AIDS will be treated in the society and what kinds of strategies will be implemented to reduce AIDS-related stigma and develop home-based care. In this study, a questionnaire survey was conducted among village women assumed to be in caring roles; the questionnaire focused on their attitudes towards caring for HIV/AIDS patients. The study indicated that rural people were more likely to perceive themselves to be at risk in taking care of AIDS patients than urban people. They were also less likely to provide care if their relatives or friends were infected with AIDS. In focus group discussions, women in both urban and rural areas demonstrated considerable misinformation about the transmission of AIDS by taking care. For example, women stated that someone who took care of an AIDS patient would be infected as well, possibly via touching the patient's blood, clothes or personal belongings, even though they may not have an open wound. This perception also occurred in the experience of a mother who was taking care of her son with AIDS. She did not wash his clothes nor reuse them because of fear of risk of infection until I met her, at which time there were only three shirts left in his wardrobe. This is partly because her son had developed a skin disease which was perceived as AIDS by other community members who lived nearby. Because of better access to AIDS information and direct experience of seeing AIDS patients in hospital, urban people were more likely to understand HIV transmission and risk, and had more correct responses than rural people. In the village, it was rare to find a poster about AIDS, and village people heard and learned about AIDS only indirectly from television and radio. Gossip and rumour were also major means by which information was transferred from village to village, and household to household, and were often misleading or incorrect. Risk perceptions of AIDS also varied by residence. Both women and men in rural areas perceived themselves to be at lower risk than urban people and did not see AIDS as a major problem. They perceived that accidents were the main cause of illness and death. In contrast, urban men saw themselves as being at lower risk than rural men because of their greater experience and sophistication. Rural people are perceived to be both attracted to the city and lacking experience in modern society, thus placing them at risk. Although AIDS patients recorded in both hospitals were mainly from urban areas, this does not indicate any real bias in infection, as access to health care services is poorer in rural areas and under-diagnosis is highly likely. All village women had heard about AIDS (97%), the majority from television, then radio and printed media. Twenty-eight per cent of them believed that there were currently very few AIDS patients in their village. Only 5% of women had known someone with AIDS and these were mainly from villages with current AIDS cases. Rural women did not think a person with AIDS could 'look healthy'; they would be thin and look different from normal. In focus groups, few women made a distinction between a person infected with HIV who looked healthy and persons with AIDS. Women reported a greater precaution in contact with people who showed visible symptoms, which they regarded as indicative of high infectivity. So, they were reluctant to get close to symptomatic patients and to give care or help, unless they were closely related to the patient, e.g. within the immediate family. It is interesting that women living in areas of known AIDS cases had a greater fear of contact compared to those living in areas without AIDS cases. This is partly because AIDS patients which they have seen have developed skin lesions. However, rural people had a greater fear of contact than urban people as a result of uncertainty and misunderstanding of transmission of and susceptibility to AIDS. Conclusions and implications Four contexts were identified as central to motivating people in the provision of care. Firstly, awareness of visible lesions of AIDS could be used to raise awareness of risks of transmission of infection and protocol of care. Secondly, religious beliefs (Buddhism or Islam) could provide an effective device for people to take care of others with HIV/AIDS. Thirdly, specific information about care for AIDS patients and possible means of transmission should be emphasized, in order to reduce fear and address issues affecting quality of care in domestic settings. Lastly, fear and a sense of danger and risk from AIDS has been communicated from various sources, especially the media, in a negative way. Fear of contagion and reluctance to provide care has also been influenced by past stigmatization against tuberculosis and leprosy patients. Providing care for patients with AIDS could be stimulated by presenting care positively. If public health programmes for educating the public about AIDS are successful, this study would indicate that persons who perceived and accepted themselves as AIDS patients will seek accurate information. The best sources of information are physicians or other health professionals rather than the print media, because of the unclear messages and one-way communication which characterize the media. It is also important that health services and providers improve their own understanding of HIV/AIDS to provide appropriate medical attention and advice, but also emotional support. Counselling services should be emphasized and be accessible to rural people. The perception and meaning of AIDS is mainly negative. Fear of risk and contagion still remain. Health education has succeeded in making people aware of AIDS but there are still misconceptions relating to transmission through social contact and provision of care. Correcting these would help to remove the stigma, uncertainty and fear of people with AIDS. The community needs more positive information and role models about people with HIV/AIDS. A careful explanation about how to prevent spreading of disease and infection control relating to provision of care are needed. Note [1] Khon kheek means Muslim people, the term kheek is considered a form of insult when used by a Thai Buddhist to refer to a Thai Muslim. Address for correspondence: Praneed Songwathana, Faculty of Nursing, Prince of Songkla University, Hatyai, Songkla 900112, Thailand. Tel: +66 74 213060. Fax: +66 74 212901. E-mail: GRAPH: FIG. 1. 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