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

http://ccbs.ntu.edu.tw/

Songwathana P; Manderson L

AIDS Care

Vol.10 No. 2 Jun.1998

Pp.155-165

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