Community Reaction to Persons with HIV/AIDS
and their Parents in Thailand
Mark VanLandingham, Ph.D.
Tulane University
School of Public Health and Tropical Medicine
1440 Canal Street, Suite 2200
New Orleans, LA 70112
Wassana Im-em, Ph.D.
Institute for Population and Social Research
Mahidol University
Salaya, Nakorn Pathom 73170
Thailand
Chanpen Saengtienchai, M.A.
University of Michigan
Population Studies Center
Ann Arbor, MI 48106
PSC Research Report 05-577
Acknowledgement: The research described in this paper is part of a larger ongoing study of the impacts
of the AIDS epidemic in Thailand, and is supported by grants from the National Institutes of Aging
(grants AG18648 and AG15983). Laura Andrews provided expert research assistance on the qualitative
data analysis. Charlotte Colvin and Fumihiko Yokota provided helpful comments on an earlier draft. John
Knodel and Jiraporn Kespichayawattana have provided valuable input and assistance at all stages of the
research upon which this paper is based. An earlier version of this paper was presented at the Population
Association of America meetings, May 9, 2002, in Atlanta, Ga.
1
Abstract
We systematically examine community reaction to persons with HIV/AIDS (PHAs) and their families in
Thailand from multiple perspectives using several types of data. We explore these community reactions
during the time of the PHAs’ illness and after their deaths. Quantitative data sources include a survey of
young adult PHAs (n=425); a survey of parents who suffered the death of an adult child to AIDS (n=394
cases); a KAP study of AIDS that includes both older and young adults (n=1174); and quantitative data
from local key informants about cases in their area (n=286 cases). This extensive quantitative
information is supplemented with several sources of qualitative data. Data were collected during 1999 –
2001 from a wide range of settings throughout Thailand.
We find community reaction to PHAs and their families to vary by features of the case, social group, and
type of observer, but overall these reactions are much more positive than is widely assumed. The
overwhelming majority of key informants’ assessments and of PHA parents’ reports indicate either a
generally positive community response or a neutral one. Results from our sample of PHAs, who are
recruited from PHA support groups, are more mixed. For those who were treated poorly, it is suggested
by at least some of our data sources that living in the city, living in an area without an NGO working on
AIDS, being described as having problematic character, or being at either extreme of the socioeconomic
spectrum may elevate the risk of experiencing negative community reaction.
We conclude that much existing research on community reaction to AIDS neglects both a rich body of
social theory on stigma and a strong tradition of population-based empirical research. Much existing
research also fails to adequately distinguish between key aspects of the social settings where most AIDS
cases occur and the social settings where most of the stereotypes surrounding AIDS-related stigma have
originated. Sociologists have much to offer to further investigations of this critically important dimension
of the AIDS epidemic.
2
Introduction
Stigma and discrimination against persons with HIV and AIDS (PHAs) are unfortunate and in
some cases tragic consequences of infection that compound the suffering of some PHAs and their
families. Whether such consequences are rare or common, they should serve to draw attention and
response to the special burdens such families face. But from a sociological and public health point of
view, the dimensions, degree, extent, and cofactors of these phenomena matter profoundly.
Sociologically, it is important to understand which factors are causally linked with stigma so that we can
better understand how stigma interacts with other social processes and anticipate its antecedents and
consequences. Stigma is very unlikely to occur independently of other social phenomena. From a public
health point of view, it is important to know which social groups are most likely to experience stigma and
its adverse consequences so that limited public resources can be targeted in the most effective way
possible.
Unfortunately, the empirical literature on stigma is not well developed and this deficiency leads
to widespread assumptions about its extent and distribution, the validity of which are unknown.
Systematic investigations of variations across time, place, and social position are rare. In their place,
sweeping generalizations unsupported by empirical evidence are issued even by reputable organizations
(e.g., UNAIDS 2000), which profoundly limit our ability to target our efforts accurately.
The lack of systematic research on stigma results in part from the difficulties of obtaining data on
a potentially sensitive issue from a reasonably unbiased and sufficiently large sample to warrant
meaningful conclusions. Some families may be reluctant to disclose their situation for fear of being
stigmatized. Other families who are willing to discuss their situation may be much more vocal and/or
otherwise dissimilar from typical families, which make them poor representatives of the general situation.
Some organizations, such as ministries of health, may have a vested interest in portraying a social
situation as more supportive than it is; others, such as nongovernment organizations who wish to
publicize the plight of affected individuals and subpopulations, have an interest in portraying the situation
as more negative than it really is.
Our study of how AIDS affects older persons in Thailand provides an unusual opportunity to
explore the extent, distribution, manifestation, and consequences of stigma from a variety of perspectives,
including those of the PHAs themselves, parents who live with and care for them, health workers who
treat them, and local volunteers who share a community with them. We also analyze data from a general
survey of AIDS knowledge and attitudes that taps into more general perspectives of this population on
AIDS and the persons who are stricken by it. Our data are collected from a wide range of communities
and include a substantial number of cases. They incorporate observations from those who are affected by
stigma as well as from local observers who are not, but who are in a good position to assess reactions
towards PHAs and their families within their communities.
Background
Perspectives on stigma
Goffman (1964) provides an excellent entry point into the concept of stigma. Describing the term
as “an attribute that is deeply discrediting,” he introduces several key dimensions of this complicated
phenomenon that have been further developed by subsequent scholars. First, stigmatized and normal are
not discrete categories but rather ends of a continuum, and by implication, much of actual experience lies
in the gray areas in between. Such a perspective belies the view of those who see some communities as
harboring stigma but others not. The empirical reality, if Goffman is correct, is likely to be much more
complicated. Second, Goffman’s concepts of discredited and discreditable persons also initiated a
theoretical distinction between actual experienced stigma (by a “discredited” person) and anticipated
stigma (by a “discreditable” person). Subsequent authors have further developed this concept into a
productive distinction between felt (or anticipated) stigma and enacted stigma (e.g., Jacoby 1994;
Malcolm et al. 1998), and how perceptions and experiences of stigma may vary over the course of the
3
illness (Brashers et al. 1998; Alonzo et al. 1995). While both felt and enacted stigma may lead to
negative consequences, some persons suffering from HIV may anticipate negative reactions from their
communities and therefore have a more negative interpretation of community reaction than members of
the community may have. Thus, in order to gain a full appreciation of this complicated phenomenon, it is
important to be able to contrast the views of PHAs and their families with the views of others, and to
explore how stigma towards the PHA and the family may change over the course of the illness. Our data
allow for such comparisons.
A third distinction to result from Goffman’s seminal work is expressive (symbolic) versus
evaluative (instrumental) reactions regarding stigma (Herek and Capitanio 1998). Observers may feel
negatively based on prejudice, e.g., regarding homosexuals; but may act only on instrumental criteria,
e.g., fear of infection. Indeed, in the U.S., Sowell et al. (1997) find that stigma encompasses both
dimensions for various groups, but that symbolic stigma towards PHAs is much more common than
instrumental stigma.
Mechanic (1995) has highlighted the importance of the social and cultural context for how stigma
manifests itself, and Link and Phelan (2001) have recently emphasized the important links among stigma,
power, and discrimination. Indeed, we anticipate that the relative levels of symbolic and instrumental
stigma should be quite different in Thailand compared to the U.S., since the Thai epidemic is not so
closely associated with socially stigmatized behaviors as is the U.S. epidemic. Stigma, especially
symbolic stigma, towards PHAs in the U.S. is likely to be driven by negative feelings about male
homosexual behavior and injecting drug use. These issues are not as relevant in Thailand since most
infections have occurred via behaviors that are less or not-at-all socially problematic. Related to this, less
powerful groups or individuals may be more vulnerable to stigma and its consequences than the more
powerful. Many authors have asserted that in developing countries stigma and its consequences affect
women much more than men (e.g., De Bruyn 1992; Warwick et al. 1998; Nyblade et al. 2003).
Unfortunately, empirical evidence to support this contention is often omitted, anecdotal, based upon small
samples, and/or produced by women’s advocacy groups. Given this lack of adequate empirical data, our
contention is that not enough is known to predict interactions between gender and AIDS-related social
stigma; rather, we anticipate that other factors will have more explanatory power. Moreover, the relative
status of women compared to men in Thailand is better than in many other developing countries (Keyes
1984; Keyes 1989; Knodel 1997).
Potential impacts of stigma
Stigma could have a variety of potential impacts on persons, families, and societies affected by
AIDS. Incidents of stigma and AIDS discrimination have been found to adversely affect the life
satisfaction of PHAs in the U.S. (Heckman et al. 1997). In Thailand, anecdotal evidence suggests that
stigma towards a PHA may delay treatment seeking, and reduce access to care and other assistance
programs (Buzra 2001). Stigma and discrimination could affect the parents and other members of the
PHA household through isolation, by creating or exacerbating intrahousehold conflict and anxiety, or
through courtesy stigma – a sort of "guilt by association" (Mullan 1998; Paul 2001; Songwathana 2001;
Stein 1997; Palloni and Lee 1992; Goffman 1964). Stigma could potentially adversely affect public health
efforts to stem the spread of the virus if it reduces incentives for testing and/or prevents open discussion
of the disease (Takahashi et al. 1999). On the bright side, where AIDS related discrimination and stigma
do occur, a review by Brown et al. (2003) concludes that the available evidence suggests that they can be
reduced by interventions that include information, counseling, and coping skills acquisition. However, a
common shortcoming of the reviewed studies that is noted in the Brown et al. (2003) report is that both
the definitions and measures of stigma are typically vague. A second generalization to be made regarding
the empirical research on this topic is that existing studies often focus more on the potential and/or
extreme impacts of stigma and discrimination rather than the distribution of impacts (e.g., see Parker and
Aggleton 2002). Much remains to be learned about the dimensions, distribution, and cofactors of this
complicated social phenomenon.
4
AIDS in Thailand
Thailand currently faces a moderately severe AIDS epidemic. Prevalence levels are much higher
than those found in the U.S. and western Europe, but much lower than those found in the hardest hit
African countries, such as Botswana and Malawi. By the early 1990s HIV had established itself firmly
within the population of sex workers and the men who patronize them (Brown et al. 1994). Participation
in commercial sex was until very recently generally considered to be a normal part of growing up for
many young men; very few Thais would consider the behavior to be morally problematic for unmarried
men (VanLandingham et al. 1998; MacQueen et al. 1996; Im-em 1999; Maticka-Tyndale et al.1997).
Both the providers and purchasers of sex services are concentrated in the late adolescent and
young adult ages. Reported AIDS cases are heavily concentrated among 20-39 year olds, accounting for
almost four-fifths of all cases through 1998 (Thailand Ministry of Public Health web site 1999). The fact
that -- until very recently -- a large number of Thai men engaged in commercial sex with a relatively
small number of female sex workers is reflected in the substantially greater number of reported AIDS
cases among males than among females, since current cases roughly reflect incidence levels
approximately 5-10 years ago. AIDS is now spreading in the population of married Thai women, many of
whom have become infected due to their husbands’ prior contact with sex workers (World Bank 2000).
The sex ratio of infection (male/female) is expected to decline to 1.6 by 2010 as more women become
infected over the next decade (Thai Working Group on HIV/AIDS Projection 2001).
Infection rates vary widely by region, and are highest in the northern part of the country. HIV
prevalence rates among pregnant women range from over 10% in some northern provinces to less than
1% in some central, northeastern, and southern provinces. Military recruit data also indicate much higher
levels among soldiers in the north (Mason et al. 1995).
Cumulatively, by the end of 2001 approximately 1 million cases of HIV infection or AIDS is
estimated to have occurred within a Thai population of about 64 million (Thai Working Group on
HIV/AIDS Projection 2001). While exact numbers and projection trends are subject to contention, it is
generally agreed that incidence has peaked and will continue to decline for the foreseeable future. This is
due in large part to the success of Thailand’s efforts to slow the spread of HIV by encouraging brothel
owners to implement a 100% condom policy with clients (Chamratrithirong et al. 1998), and by
aggressive treatment of other sexually transmitted diseases that facilitate the spread of HIV (Hanenberg et
al. 1994). Increasing fears among young men about the dangers of commercial sex patronage has also
undoubtedly played a major role (VanLandingham and Trujillo 2002; UNAIDS 1998).
We are aware of no large or medium scale systematic empirical investigations of stigma in
Thailand. Journalistic and academic accounts rely primarily on case studies and non-systematic samples
and analyses. Such reports highlight and emphasize instances of negative community reaction (e.g.,
Assavanonda 2001; Kornsirilak 2001; Songwathana and Manderson 2001) and give little attention to
issues of generalizability and variability, although Buzra (2001) notes that positive community reactions
to AIDS afflicted families sometimes occur, and Songwathana and Manderson (2001) mention some
mitigating cultural features.
This sparseness of systematic research on stigma in Thailand is unfortunate, since the country has
excellent data on epidemiological trends and differentials, and has a history of documented success in its
public health campaigns against the epidemic. The Thai situation, while unique in many ways, has much
in common with many of the other medium to high prevalence countries of the developing world. The
epidemic is spread primarily by behaviors that are quite normative; rapid decline and death usually occur
soon after the onset of symptoms (World Bank 2000); intensive care giving is provided to PHAs by their
families, especially their parents (Knodel et al. 2001; Kespichayawattana and VanLandingham 2002),
who live in tight knit communities in close proximity to other families, and where information travels
quickly and easily; and many Thais know individuals who are suffering from or who have died from
AIDS (Im-em et al. 2002). In contrast, one could scarcely imagine a more different scenario than the U.S.,
the country that provides the setting for the much of the research and advocacy, as well as many of the
existing stereotypes, on AIDS-related stigma.
5
Data and Methods
Key features of our data and procedures are briefly described here; more details are provided in
the appendix. In part to protect against a wide range of potential biases that could result from any one
approach, we chose to pursue our study of stigma using information from a variety of perspectives: the
parents of PHAs; key informants, who were local level health professionals living and working in the
subdistricts we studied; the general population of young and older age adults as participants in our KAP
study of AIDS; PHAs themselves; and village (or community) health volunteers (VHVs), who live and
work in our communities of interest. Our five surveys are supplemented by several sources and types of
qualitative data. We purposely select a wide range of settings for our data collection: Urban and rural
areas of Chiang Mai, Chiang Rai, and Lampang provinces in the upper-north, where the HIV prevalence
levels are high relative to the rest of the country and the epidemic is of longest duration; Rayong and Trat
on the southeastern seaboard, where prevalence levels have recently also become high; Petchburi and
Prachuap in the central part of the country, where prevalence levels are moderate; Khon Kaen and Ubon
in the northeast, where prevalence levels have remained low; Phichit in the lower north, also with low
prevalence rates; Phuket in the south, with moderate levels; and Bangkok, with moderate levels relative to
the rest of the country. See Table 1 for an overview of data sources.
Our analytical approach is to first show the range and distribution of community reaction to
PHAs and their families. Second, we show the variability (or consistency) by place, by perspective, and
over time, presenting data on specific reactions to individual families and broader community reactions to
PHAs and their families generally. Third, we explore a number of factors that may explain variability
where we find it. Finally, we discuss some of the consequences of community reaction and stigma.
Results
Level of awareness and interest about AIDS among Thai adults
Thai adults are generally quite familiar with and interested in the topic of AIDS. Table 2 shows
that awareness is nearly universal for both young adults and older Thais. Among young adults, the
proportion expressing interest in the topic approaches 90%, with over a third reporting ever attending a
lecture, ever having been tested for the virus, and worrying at least some about contracting it. Over two
thirds of each age group report ever having known a PHA. Almost everyone in the sample understood the
most prominent means of transmission, i.e., unprotected sexual relations, while substantial minorities
seem overly concerned about the risks of casual contact. For example, over a quarter of young adults
worry unnecessarily about the chances of contracting the virus through living or working near a PHA,
sharing a meal with a PHA, sharing a household with a PHA, sharing a glass with a PHA, or eating a
meal prepared by a PHA – the proportion answering correctly is even less for the older respondents. So,
while overall awareness of AIDS is extremely high among Thai young and older adults, undue concern
about the risks of casual contact with PHAs present at least the potential for negative community reaction
towards PHAs living in close proximity to their neighbors. Indeed, most of the instances of negative
community reaction reported in our in-depth interviews with older parents of PHAs and our focus group
discussions with community health providers were related to neighbors’ fears of contagion through casual
contact.
Reactions to PHAs and their families are explored more directly with community level data in
Table 3. The top half of the table presents the distribution of community reactions as assessed by our key
informants (KIs), who are local public health professionals working (and in most cases living) in the
communities they report on. Just over seventy percent of the KIs report that most people in their
communities are neutral towards PHAs and their families, i.e., neither positive nor negative. Altogether,
over 4/5 of the KIs assess the overall reaction in their communities to be either neutral or positive, with
only 10% characterizing the general community reaction as negative (i.e., avoiding contact with or
criticizing the family). Differences in the distributions between urban and rural areas; between areas with
epidemics of less than five years duration and those with longer durations; and between areas with low
6
prevalence and those with medium prevalence do not reach statistical significance. This is likely due to
the small number of sites included in the study, as some of the comparisons are highly suggestive. KIs
living in urban or peri-urban areas are much more likely to report a general reaction of avoidance to AIDS
families – and much less likely to report general sympathetic reactions -- than are KIs in rural areas. In
none of the areas with recent epidemics (less than five years) was the general reaction reported to be
sympathetic, but this assessment was made by eleven percent of KIs from those areas with longer
experience with the epidemic. Local communities in the provinces with the lowest levels of prevalence
were judged by more KIs to have avoidance reactions than were communities in the provinces with more
moderate prevalence.
Such a time trend towards more positive reaction is also suggested in the lower part of the top
half of this table, which presents distributions of the KIs' assessments of trends in their communities.
Eighty seven percent of the KIs judged their communities as becoming more tolerant to PHAs and their
families over time; none saw a hardening of reactions over time. This view was essentially universal in
the focus group discussions involving these types of community health officials as well.
R1: Before, people would stay away from the patients. Even the officials were afraid and didn't
want to be near the patients.
R2: People are now more educated… They know that they will not be infected when sitting next
to the patients…
R1: They now have more understanding… And it's also because these patients are now their
relatives or their loved ones [Community health officials focus group discussion, Chiang Rai].
The bottom half of Table 3 also assesses general community reaction from a local observer's
viewpoint, but in this case it is the village health volunteer (VHV) who provides the assessment. Such
volunteers serve in a quasi-official role as they advise the households under their jurisdiction on a wide
range of issues. Once again, the overwhelming response is that community reaction towards households
with PHAs is not in fact driven by the fact that a household member is infected - 82% feel that
community reaction to those households is no different than it was before the family suffered this
calamity. Ninety percent report that at least some residents will feel sympathy towards the AIDS
household, and over three quarters report that at least some in the community will offer help. These
positive assessments do not appear to be an attempt to deny the existence of negative community reaction,
as about half report at least some negative reaction, disgust, and avoidance by some in the community.
Two thirds report at least some gossip about these households. As is the case for the health officials, the
vast majority of VHVs (84%) assess the trajectory of community response in their areas to be in a more
supportive direction.
Such general assessments of community reaction may miss variation among how particular cases
are treated where such variation exists. Thus in our next table we turn to the assessments of our key
informants of community reaction towards specific families affected by AIDS. Table 4 provides an
assessment from our local health professionals of how open the family was to the fact that a member had
AIDS; how they were treated by the community during the illness; and how they were treated by the
community after the death of the PHA. Among the 286 AIDS families for which we have detailed
information, 57% were generally open to the community about the fact that a household member was
suffering from HIV or AIDS. About a quarter were open to some, and almost a fifth were not open at all.
A trend towards more openness over time is again suggested by the data in the next two columns, but this
difference is not statistically significant. The presence of NGOs working in the area is associated with
more openness, and this difference is significant (p < 0.01).1 PHAs judged by the KI to be of good or
normal character appear more likely to be open than individuals who were judged to be of bad character,
or whose assessment contained some qualification indicating that he or she may not have been highly
regarded in the community. This difference is not statistically significant, nor is the difference suggesting
1
This test is a Pearson’s chi-square, our test of choice for bivariate associations unless otherwise specified.
7
women to be more open than men. Differences in degree of openness by socioeconomic status are
illustrated in the final three columns (p < 0.05) and suggest an inverse association between these two
variables.
As shown in the middle section of this table, the degree to which AIDS families are treated either
positively or neutrally by their neighbors, as assessed by our KIs, is remarkable – a full 73% were
believed to have experienced no negative reaction due to the illness (38% plus 35%) and less than a fifth
were believed to have experienced only negative reactions by these local observers. This overwhelmingly
positive reaction towards the family became even more pronounced after the PHA died. After the death,
91% of the AIDS households were believed to have experienced no negative community reaction.
As in the previous table, a longer duration of the epidemic in the local area appears to make
community reaction slightly more supportive, but this difference again fails to reach statistical
significance. But having an NGO working on AIDS in the area increases the likelihood that a family will
be treated the same way during the illness as before (p < 0.05). The assessed character of the PHA has
strong effects on how s/he and the family were treated during the illness (p < 0.001) but not afterwards. A
family in which the PHA had bad or questionable character was more likely to be treated negatively and
less likely to be treated positively by neighbors during their illness, but apparently after such a PHA dies,
the family does not continue to carry the burden of the PHA’s poor reputation in the community. Sex
differences are significant after the death of the PHA (p < 0.05), but these differences are difficult to
interpret – female PHAs may evoke stronger community reactions on both ends of the continuum
compared to males.
Table 5 provides more specific types of community reaction to AIDS families, as observed by our
local health officials. Of the 278 families that were open to the community about the fact that a household
member had AIDS, 78% experienced no specific negative community reaction, according to reports by
our KIs. Avoidance or criticism were experienced by a fifth of the families. The proportion of families
experiencing no specific negative reactions after the death of the PHA rises to 93%. So few cases of
specific negative community reactions were reported that further analysis by selected cofactors was not
possible.
Specific positive reactions were more commonly reported. Over a third of the families received
either visits or expressions of sympathy from neighbors during the illness of the PHA, but this declined to
10% after the death of the PHA. VHVs (see the bottom panel) also report primarily positive or neutral
community reaction to the specific AIDS families in their areas, with almost 90% of the families reported
to either have received help from neighbors or, at the very least, to have experienced no avoidance.
In spite of the fact that our key informants work for or have an association with the government-which may have an interest in portraying community reaction in a favorable light -- we believe our KIs to
be reliable observers of how their communities respond to individuals and families stricken by AIDS.
Interviews were conducted or observed by the main investigators on the project, and our impressions have
been that the KIs were generally well informed and candid in their assessments. They spoke at length, for
example, of cases that experienced problems. Moreover, there are some clear advantages of employing
key informants over interviewing families directly. First, we obtain a more complete census of cases in
the area, since we do not have to recruit families to participate. Second, KIs may in some cases be in a
better position to judge the overall community reaction to a case than an AIDS family would, since some
comments might be made that the KI hears about but not the family.
On the other hand, interviewing families directly also presents a number of advantages. First,
their experience with community reaction is direct and does not have to be filtered through the lens of
another. Second, some forms of community reaction, both positive and negative, may be too subtle for a
secondary observer to note.
In Table 6, we present the reported experiences of community reaction by parents who had
experienced the death of an adult son or daughter to AIDS during the previous 3 years. Substantially more
families reported themselves to be at least open to some in the community (98%) than the proportion of
cases reported by our KIs (82% from Table 4). We believe that this difference is more likely due to
differences in the sample than in perspective. Even though we did not ask about AIDS specifically in our
8
interviews with parents unless the respondent mentioned it first (we asked only about deaths), we knew
beforehand that these families had experienced a recent AIDS death, and these cases were screened by
our intermediaries as likely to be willing to talk with us. This sample of parents is therefore is weighted
towards families who are open to the community about the death in their household, and in most cases,
the reasons underlying this death.2 Our in-depth interviews with parents will also miss those who are least
open about the cause of the death of their adult child, but even among those we did interview, some made
clear their concerns about how they would be treated by the community should they be open with this
information. If fact, this anticipation of negative community reaction should the family be open about
their calamity may be in some cases worse than the actual community reaction, or may even become selffulfilling.
I told (my son) to look at himself. I didn't feel repelled by him but other people might. He was
skinny then. His feet and his arms were so dark. It's like his skin was burnt. I told him not to go
out but he said he didn't feel embarrassed. I told him to at least think about me. Other people
would say how could he go out like this. I told him not to go out; so he didn't go. [51-year-old
mother, in-depth interview, Bangkok].
I wanted to talk to other people but I was afraid that they would feel disgusted.
[60-year-old mother, in-depth interview, Chiang Mai]
(In one case I know) the mother cannot handle the truth. She told a health official that her child
is infected but insisted that he not tell anybody else. However, people have already found out
about it and had no problem with it [Community health official, focus group discussion,
Petchburi].
The well-off in our parents survey were less likely to report themselves open to the community
about the serious illness in their household (the illness that resulted in an AIDS-related death) compared
to the other two SES groups (p < 0.05). This is also the case for urban compared to rural dwellers (p <
0.001) and for residents of Phichit province compared to Chiang Mai and Rayong (p < 0.01; results not
shown). Given the fact that social ties are often looser and more transient in urban compared to rural
communities, and that AIDS in Phichit is much more rare than in the other two provinces, these results
are as expected. We did not anticipate SES differences in a particular direction, but suspect that the well
off may have more at stake in terms of their reputation in the community compared to the other two SES
groups.3 Families in which the character of the PHA is judged by the parents to be bad (only six percent
of these families) appear to be less willing to disclose, similar to the pattern that exists in the KI reports,
but again the difference does not reach statistical significance.
The proportion of AIDS households that were open to the community and who report some
demonstration of positive community reaction during the illness is remarkable at 94%. Nearly all of the
families who were open report visits by neighbors,4 many of whom did not come empty-handed or
without some advice or service to offer (see Table 6).
2
When asked the cause of death of their deceased son or daughter, in two-thirds of the AIDS parents’ interviews, the
respondent explicitly stated AIDS. A substantial share of those who did not state AIDS as the cause of death were
open about the fact that their child had AIDS but gave as the cause of death an AIDS-related symptom or illness.
3
No time trends are apparent, which is not surprising since all of the cases for this survey were selected on the basis
of having occurred during the past 3 years.
4
The fact that the proportion who report visits is slightly higher than those who report any positive community
reaction is due to the fact that the respondents were prompted for each type of specific reaction if they did not
mention it spontaneously. Prompted responses for these specific positive (and negative) reactions were much higher
than the unprompted responses.
9
(Neighbors) came to visit (my son). I don't know what they thought but they came to visit him
and bought a lot of things for him... They bought food and we ate together. Some people came a
long way... I don't think (the neighbors changed any) because when he had to stay at the
hospital, a lot of them came over to visit him. There were a lot of people at his funeral. [54year-old mother and 59 year old father, in-depth interview, Phetchaburi]
Urbanites in the parents’ survey were significantly less likely to report offers by neighbors to
watch over the sick PHA or to receive advice compared to rural villagers; parents of PHAs deemed (by
the parents) to be of bad character were less likely to receive visits or food compared to parents of PHAs
of good or qualified character; and parents in Chiang Mai, where the epidemic is of longest duration and
highest intensity, were more likely to receive offers to look after the ill child, gifts of medicine, and
advice compared to parents in Phichit and Rayong (p < 0.05 for all comparisons).
A quarter of the families who were open report some negative reaction during the illness, gossip
being the most common but isolation (not having neighbors come to visit) reported by a fifth (30% when
the PHA was female versus 18% when the PHA was male; p < 0.05) of the parental households. Several
of the PHAs’ parents in our in-depth interviews reported such reactions.
Those who did not hate us came and told us who did. How they talked about us. [59-year-old
mother, in-depth interview, Rayong]
Negative reactions appear more common among families in the parents’ survey in which the PHA was
deemed (by the parent) to be of bad character compared to the reference groups, but these differences are
not significant.
Among the families whose situation was known to the community, more than 7 in 10 assessed the
net community reaction to their misfortune to be sympathetic during the time of the illness; about a fifth
reported both sympathetic and negative reactions; only three percent reported negative reactions only; and
only four percent reported no reaction. Differences of these net reactions by a number of other factors
explored are not significant but are suggestive of more positive experiences among the families with male
PHAs, the non-poor, those deemed to be of at least qualified good character, and living in areas with
epidemics of at least moderate seriousness (results not shown for seriousness of epidemic).
Among families reporting at least some negative community reaction, over half reported
durations of at least a month; almost a fifth continue to suffer the consequences of negative community
reaction (deaths occurred at least six months prior to the survey). Parents of PHAs who were male
suffered shorter durations of negative community reaction than parents of female PHAs (p < 0.05). Other
differences are not significant; sample sizes become quite small here due to the small number of
households reporting negative community reaction.
Positive community reactions as reported by the AIDS parents continue in the vast majority of
cases after the death of the PHA child (see Table 7). Over 90% of these parents report many or a normal
number of persons attending the funeral of their child; at least some sympathy or offers to help; visits; and
help with funeral arrangements by neighbors after the death of their child. Important differentials also
exist. The minority of parents who describe their child to be of bad character are much less likely to report
normal attendance at the funeral compared to the reference groups; as are parents in Phichit compared to
the other two provinces (p < 0.001 for both comparisons). Parents in Phichit are also significantly less
likely to report visits or help with funeral arrangements from neighbors than parents in the other two
provinces, as do parents in urban relative to rural areas (p < 0.01 for both comparisons). Urban parents are
in fact significantly less likely to report at least some supportive or helpful community reaction compared
to parents in rural areas on all four dimensions measured (p < 0.05 for all). The poor fare worse than
middle and high SES groups on having neighbors visit and on funeral attendance (p < 0.05 for both).
Specific negative community reactions after death are more rare, but much more likely to be reported by
Phichit parents compared to parents from the other two provinces (p < 0.05 for all five specific measures).
10
Parents of female and widowed (not shown) PHAs who died are more likely to report neighbors refusing
to eat and drink at the funeral compared to the reference groups (p < 0.05 for both comparisons).
These significantly higher proportions of some groups suffering negative community reaction
compared to others warrant attention, but it is also important to keep in mind that, according to these
parents of PHAs who died, overall community reaction to the families was usually either positive or
neutral (84% of the cases), and in cases where negative reaction does occur, in almost half of the cases it
is quite short-lived – less than a month for 45% of the cases. This was noted by several of our community
observers as well.
Interviewer: Was there any criticism (of this case)?
|
VHV: Yes, at first there was some talk, some criticism. But it disappeared after a couple of
weeks, then things were back to normal [Village health volunteer interview, Petchburi].
Next, we turn to assessments of community reaction from the PHAs themselves. While a
reasonably representative sample of households experiencing the death of a young adult to AIDS presents
formidable challenges, obtaining a reasonably representative sample of PHAs is even more difficult. This
is because many PHAs are likely to be less willing to speak frankly about their current situation and
experience than are their parents after a period of grieving has passed. Also, PHAs who participate in
such a study will not only need to be quite open about their situation but also healthy enough to
participate. Thus, our sample of PHAs is more likely to be weighted towards cases who are open than are
the parents in our AIDS parents survey, and certainly more so than the cases identified by our key
informants. Nevertheless, we were able to recruit 425 PHAs for our survey, mostly through their
participation in local support groups for PHAs.
Perceptions of community reactions among this group of PHAs, both to PHAs generally and to
themselves (if they are open to the community) are presented in Table 8 by the sex, education level,
residence, and province of the PHA. PHAs report a wide range of both positive and negative reactions
within their communities. Only about a fifth report no reaction at all, either to PHAs generally or to
themselves. This is a substantially lower percentage than reported by the KIs in Table 4, who report this
neutral community response for 38% of the cases they know about. More PHAs report positive
community reactions than negative ones, and all reactions except for general talk are slightly more likely
to be reported by a PHA speaking about himself than about PHAs generally.5 Women PHAs in this
sample are significantly more likely to be open to their communities than men (p < 0.001), but this is
likely due in part to the fact that over half of the women were widowed (and presumably infected by their
husbands) whereas only 10% of the men were (results not shown). On the other hand, the pattern is
similar to that reported by the KIs in Table 4.
Women are more likely to report responses of sympathy, support, and help (both for PHAs
generally and for themselves) than men (p < 0.05 for all comparisons). Men are significantly more likely
to report reactions of disgust or fear towards them than are women (p < 0.05).6 PHAs with intermediate
levels of education (a proxy for SES here) fare better than those at either extreme for experiencing
community sympathy and support, either for themselves or for PHAs generally (p < 0.001 for all
comparisons). They are also the least likely to report experiencing fear or disgust (p < 0.05), while it is
those with the least amount of education who are most likely to report being looked down upon (p <
0.01). Persons with the highest levels of education (more than six years) are the least likely to be open to
their communities (p < 0.001). Areal differences in community reaction as assessed by these PHAs are
5
This is reasonable since those who are not open would be likely left out of the numerator in both panels and out of
the denominator in the lower one.
6
When the above comparisons are limited to non-widows and to the PHAs’ personal experience, they continue to
consistently show worse outcomes for men than women but are no longer statistically significant because of the
reduced cell sizes.
11
profound. Urban dwellers, especially those from Bangkok (see the far right panel), are much less likely to
be open to their communities than rural dwellers (p < 0.001), and apparently with good reason: urban
PHAs are much less likely to report receiving expressions of sympathy or support from their communities
than are rural PHAs (p < 0.001 for both comparisons). And in the far right panel, Bangkok is the clear
outlier in the proportions of PHAs experiencing expressions of sympathy, support, disgust or fear, and
condescension from their communities – PHAs in the other three provinces fare much better (p < 0.01 for
all comparisons).
In the final sections of the paper, we explore some of the implications and consequences of
community reaction for PHAs and their families. In Table 9, we show how the parents of PHAs who have
died assess the reactions and responses of community officials towards them during their child's illness
and after their death. Approximately half report helpful or sympathetic reactions from local health center
staff and from community health volunteers. Positive reactions from village headmen were more
common, at 62%. Reported negative reactions from all three types of community leaders were very rare.
Parents of female PHA were less likely to report positive interactions with community health volunteers
than were parents of men (p < 0.05), and parents of PHAs living in urban areas were less likely to report
positive interactions with all three types of community leaders than their rural counterparts (p < 0.001 for
all three comparisons). AIDS parents in Rayong were less likely than parents in Chiang Mai and Phichit
to report support or sympathy from health center staff and community health volunteers.
Table 10 presents results from bivariate analyses of whether experience of negative community
reaction either during the illness of the PHA or after their death was predictive of a deterioration of the
parental respondent's relations with neighbors, overall level of happiness, or health. We focus on any
experience of negative community reaction (as opposed to a net negative reaction, which is very
uncommon) in order to include as many cases in our cells of interest as possible, i.e., to increase the
power of these tests. Experience of any negative community reaction by the parental respondent was
significantly related to a decline in community relations, whether the negative reaction occurred during
the illness or after the death of the PHA (p < 0.05 for both comparisons). Also, the proportion reporting a
very difficult care-giving experience was significantly higher for those parental respondents who
experienced negative community reaction compared to those who did not, again, this is true no matter
when the negative reaction occurred (p < 0.05 for both comparisons). To explore whether the experience
of negative community reaction was predictive of a difficult care-giving experience in the presence of
potentially confounding variables, we estimated a multivariate logistic regression model that included
controls for urban versus rural residence, time spent on care-giving (a great deal versus the other
categories), sex of the respondent, and sex of the PHA. Any experience of negative community reaction
more than doubled the odds of the parental respondent reporting a very difficult care-giving experience,
even in the presence of the aforementioned controls (p < 0.01 - results not shown).
Discussion and Conclusions
We employ recently-collected data from a wide range of sources and perspectives to assess
community reaction towards PHAs and their parents in Thailand. These data were collected during the
period 1999-2001; include five surveys, one set of focus groups, one set of group interviews, and two sets
of in-depth interviews; and address community reaction from the perspective of the PHAs themselves,
their parents, health care providers, local community observers, and a general sample of young and older
age adults. Our study sites include a wide range of circumstances in Thailand, including rural and urban
locations, and areas with varying levels of HIV and AIDS prevalence. These unusually comprehensive
and systematic data place us in an excellent position to make a number of conclusions about the
manifestation of AIDS-related stigma in a medium-prevalence country; to discuss the implications of our
findings for more general theory regarding community reaction and AID-related stigma; and to discuss
the implications of these empirical findings for programs that address the plight of families and societies
suffering the consequences of AIDS.
12
The experience of AIDS-related stigma in Thailand
Our KAP survey shows generally high levels of interest and understanding about AIDS among
Thai young and older age adults. We also find evidence of some over-concern about the risks of nonintimate contact with a PHA or his family, concern that could be the basis for avoidance of and/or stigma
towards PHAs. However, while this set of surveys does reveal a fair degree of variation in community
reaction among and within the communities we studied, these data generally indicate that quite neutral or
positive responses towards PHAs and their families is the norm in Thailand. Data collected from local
level health professionals provide the basis for much optimism regarding the treatment of PHAs and their
families. Among the 85 sites in the survey, 82% of the respondents report either positive or neutral overall
community reaction, and 87% report that the trend is towards more tolerance. Community health
volunteers reporting from 49 sub-communities are similarly sanguine, and both types of observers' reports
for reactions towards specific families (as opposed to general assessments of their communities) indicate
widespread community acceptance for most families affected by this disease.
Differentials are also apparent, with stigma varying with features of the social environment, the
affluence of the household, the reputation of the affected individual, and the stage of illness. Areas
without NGOs actively working on AIDS have fewer AIDS families treated the same way they were
before their misfortune – a finding similar to results reported by Kongsin et al. (2001), conducting related
research on the impacts of AIDS on households in a northern Thai province. Households in which the
PHA had bad or questionable character were more likely to be treated negatively and less likely to be
treated positively by neighbors during the illness (but not afterwards). Negative community reactions
towards affected families were more common during the illness than after the death of the PHA,
according to our local health officials and the AIDS parents we surveyed. In a substantial proportion of
the instances where negative reactions did occur, they were quite transitory.
Data gathered from local observers do not indicate significant socioeconomic differentials in
community reaction, but the data from our parents and PHA surveys do. Poor parents were much less
likely than the other SES groups to report receiving help looking after their sick child during the illness
and receiving visits after the death of their child than did the well off or those of moderate means. PHAs
of moderate levels of education reported receiving sympathy and support more frequently than did PHAs
in the high and low education categories and were least likely to report experiencing reactions of fear or
disgust. Community response in rural areas was judged to be more positive than in urban areas on a wide
range of variables in both the AIDS parents survey and in the PHA survey. As predicted, gender is not a
consistent predictor of AIDS-related stigma; community reaction to women with AIDS relative to men
varies with the source of information. Results from community observer data are ambiguous; reports from
the parents’ survey indicate better community reactions towards men; and results from the PHA survey
indicate better community reactions towards women. Point of view is clearly an important factor to
consider when interpreting sex-based differences in AIDS-related stigma, and our results clearly
contradict the widely reported notion that women PHAs are treated much worse by their communities
than are men; the reality is much more complicated. More generally, more attention should be given to
how point-of-view influences not only an individual’s perception of stigma, but also the relationships
among social position, social roles, and social sanctions.
Implications for theoretical perspectives on AIDS-related stigma and community reaction
We find evidence to support our hypothesis that the relative magnitudes of symbolic versus
instrumental stigma will be the reverse of what has been found in the U.S., although our evidence here is
only suggestive. That so few PHAs, parents, or observers report fear or disgust, condescension, and
avoiding conversation, we take to imply that symbolic stigma is not especially widespread in the Thai
context. This was anticipated because the behaviors most associated with HIV in Thailand have not been
as stigmatized as the behaviors most closely linked with HIV infection in the U.S. It is instrumental
stigma, related to fears of becoming infected, that warrants the most attention in Thailand -- many Thais
overestimate the risks of contracting HIV through casual contact.
13
As anticipated by earlier theoretical work by Goffman and Mechanic, we find community
reaction to PHAs to be complex, dynamic, and dependent upon both the context and the observer. Many
of our PHAs, parents, and observers report both positive and negative reactions to PHAs and their
families. Also, reports of specific forms of negative community reaction among the PHAs, while still a
minority, are more frequent than specific negative reports by AIDS parents and much more frequent than
those reported by the health officials. One interpretation of this finding is consistent with one of our
hypotheses: some PHAs may anticipate negative community reaction more than they are actually the
target of it, à la Goffman. Some of our in-depth interviews with the parents of PHAs also strongly suggest
that it is the anticipation of negative community reaction that may cause some affected families to
withdraw from their communities. We note that observed differences in perceptions of stigma among the
types of respondents could also be due to differences in the specific questions asked of each source
(although the proportion of parents and observers reporting any negative reactions are still less than the
PHAs' reports of specific forms of negative reaction); the way the samples were drawn; more sensitivity
on the part of PHAs because of a focus on stigma in PHA group activities; or the possibility that one type
of observer may be in a better position to observe and judge community reaction than another.
Also, given our wide range of data sources and large number of statistical tests conducted, the
possibility of reporting a significant effect when none in fact exists (a Type I error) is not trivial.
However, what we find most remarkable is that no such odd or unexplainable findings appear to occur;
rather, the consistency of the story told by this wide range of data sources is remarkable.
Why don’t we find more stigma? It is possible that Thailand is a special case – after all, it has had
one of the most effective responses to the epidemic to date – but this strikes us as unlikely to be a major
factor. Most reports on community reaction to AIDS in Thailand in the popular press and in the research
literature have emphasized negative reaction, as have reports elsewhere. We believe that this emphasis is
due in large part to the propensity of many journalistic accounts to sample on the dependent variable, i.e.,
to focus attention on unfortunate cases and then to generalize their experience to broader groups. Much
qualitative research makes this same mistake. Related to this is the fact that an instance of stigma is more
salient than is an instance of no stigma and thus is much more likely to result in a story to tell
(Songwathana and Manderson 2001). While case studies are essential for helping us to interpret the
experience of stigma where it occurs, population based studies are essential for assessing the prevalence
and distribution of community reaction.
A second reason for finding less negative community reaction than is often reported is related to
the anticipated stigma versus actual stigma distinction. Curiosity is sometimes mistaken for stigma. An
AIDS case is a remarkable event in village life -- only four percent of the families in our parents survey
reported no reaction from the community to their plight -- and a misinterpretation of curiosity and interest
for malice is probably fairly common. We did try to distinguish between gossip (ninta) and general talk
(kui) in the PHA survey, but in practice, in Thai as in English, such distinctions often lie in the eye of the
beholder. This is in fact an observation made frequently by several of our various types of community
observers.
Such a misinterpretation becomes more likely if community reaction is viewed with a western
lens rather than with a culturally specific one (Goldin 1994). If we consider that much of the attention
given to community reaction arises from an activist tradition, and that often research on stigma is
conducted by western-trained scholars who value privacy and the rights of the individual over openness
and the interests of the community,7 the emphasis of negative over positive community reaction in the
AIDS literature makes sense.
Other dynamics working at the local level may also serve to perpetuate the idea of negative
community reaction as the norm. Our fear that high-level health officials might try to portray the situation
as more positive than it really is did not materialize. To the contrary, some high-level Thai government
officials may over-generalize from the negative cases that they hear about. One high-level provincial
7
Many western-trained scholars also incorrectly assume that many of the key behaviors that put one at risk of
contracting HIV in developing countries are themselves highly stigmatized, as they are in their home countries.
14
health official we interviewed stated categorically that most people in the province did not accept PHAs, a
point of view that is contradicted by the data we subsequently collected there.8 Without the extensive and
community based data we collected as part of this study, such a strongly stated point of view that could
have been extremely misleading to a researcher investigating community reaction to AIDS in provincial
Thailand.
Implications for programs
Research and advocacy that may exaggerate the distribution and effects of stigma surely has the
well-being of affected individuals and families as its goal, but such exaggerations are not without costs.
Resources that are directed towards stigma reduction cannot be put towards other goals that may have
greater payoff. For example, Uthis (1999) finds social stigma to be the least consequential of a variety of
potential impacts of living with and caring for PHAs in Thailand; economic hardships were the most
severe. Kespichayawattana and VanLandingham (2003), in work related to the results reported here, find
that less than 1% of the over 300 care givers (mothers, fathers, or parents) to an adult child who died from
AIDS felt that negative community reaction was the most difficult dimension of the experience; rather it
was the strains of care giving itself that was most commonly cited.
Where negative community reaction exists it appears to be of consequence to some. Thirteen
percent of parents who experienced negative community reaction considered leaving their communities.
A small number report negative experiences with local officials, which could affect their well-being and
standing in their communities. Parents who experienced negative community reaction were more likely to
report a decline in their relations with neighbors over time than those parents who had not experienced
these negative reactions. And parents who experienced negative community reactions were also more
likely to report a very difficult care taking experience than those who did not, a result that holds up in
multivariate analysis.
Community reaction towards individuals and families suffering the consequences of AIDS in
Thailand appears to be quite positive or neutral for most but not all. For that minority whose suffering
from this terrible disease is compounded by the indifference or hostility of their neighbors, we
recommend an aggressive and rapid response both to help change the social environment in which these
negative reactions occur, and to help these unfortunate individuals and families cope with these
occasionally unsupportive environments.
8
The general community reaction as assessed by our community health workers in 6 of the 9 communities surveyed
in that province was either neutral or sympathetic; and all reported that the trend was towards more acceptance -results from our survey of VHVs were similarly optimistic.
15
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VanLandingham, Mark and Wassana Im-em. 2001. Living with HIV/AIDS in Thailand: Results from a Selfadministered Survey. PSC Research Report No. 01-488, http://aidseld.psc.isr.umich.edu
VanLandingham Mark, Knodel John, Chanpen Saengtienchai, and Anthony Pramualratana. 1998. In the
company of friends: Peer influence on Thai male extramarital sex. Social Science and Medicine
47(12): 1993-2011.
Warwick, Ian, Shalini Bharat, Roberto Castro, Rafael Garcia, Melkizedeck Teshabari, Anchalee SinghanetraRenard, and Peter Aggleton. 1998. Household and community responses to HIV and AIDS in
developing countries. Critical Public Health 8(4): 311-328.
World Bank. 2000. Thailand's response to AIDS: building on success, confronting the future. Washington: The
World Bank.
18
Appendix: More details on the data and methods used in the study.
Potential biases
Any empirical study of community reaction to AIDS faces formidable methodological challenges.
The first set involves potential selection biases – individuals who are most susceptible to stigma or most
likely to engage in it may be least likely to participate in such a study. While these potential biases are of
concern in the current study, we benefit from working in a society with an extensive public health clinic
system in local areas, staffed by local health workers who are knowledgeable of and usually live in close
contact with the local population. Also, Thais are generally cooperative in social science surveys, and
only in fairly rare instances will refuse to participate if approached in a culturally appropriate manner.
Finally, our triangulation of data from a variety of sources allows for some built-in checks against biases
that might severely compromise a study based upon a single survey.
A second set of potential biases could be labeled reputation and political biases. Individuals who
engage in, experience, or witness stigma or discrimination may not wish to report this behavior if it is
seen to impugn the character of the local population. Similarly, it is often in the interest of the government
to portray a situation as perhaps more uplifting than it is; the interests of nongovernment organizations are
often the opposite. Fortunately, our interviews of PHAs and their parents, and our general KAP study of
AIDS knowledge and attitudes in the general population will provide some important checks on the
reports from government officials who might have a vested interest in portraying the situation in a
particular way. Since the officials we collect our data from are local practitioners at a low rank in the
health bureaucracy (as opposed to higher level political appointees), they should be under less pressure to
distort the situation in a way favorable to the interests of the government. In fact, we generally found
them to be extremely candid in their descriptions of local cases, and found them quite willing to discuss
difficult situations where they occurred.
A third set of challenges involves the power of anecdotes in forming impressions. A tragic case,
even a rare one, can have powerful influences on how an observer may view the general situation.
Families that experience no stigma will be far less salient to such an observer than a family that does,
since if no stigma occurs there is no event to think about or attend to.
Data and sampling
Data from the AIDS parents study resulted from face-to-face structured interviews of the parents
of 394 PHAs who died. At most sites, all parents of PHAs who died in our study sites during a specified
period of time (six months to three years prior to the survey) were asked to participate by our local health
contacts. Sites, chosen to reflect a broad range of circumstances, were selected from three provinces from
three sub-regions of Thailand.9 These survey data are supplemented by qualitative data resulting from 18
in-depth interviews of parents who had lost an adult PHA child.10
Data from the Thai AIDS Cases Study (TACS) resulted from semi-structured face-to-face
interviews of local health staff from eight provinces and Bangkok. The eight provinces include at least
one province from each of the four regions of the country; there were a total of 85 local sites included in
this component of the study. We included all cases occurring at the local site up to 20. These interviews
generated individual and family level information for 963 cases of persons living with or who died of
AIDS, and more extensive information for a subset of 286 adult AIDS cases – it is this latter subset upon
which we base our analysis of community reaction here. This instrument also generated community level
information for 85 communities (mostly village clusters).11 These survey data from our local key
9
For more information about this survey, please see our research report Knodel et al. 2002; downloadable from the
website listed in the bibliography.
10
For more information about these in depth interviews, please see Saengtienchai and Knodel 2001.
11
For more information about this survey, please see our research report Knodel et al. 2000; downloadable from the
website listed in the bibliography.
19
informants are supplemented with qualitative data from six group interviews with community hospital
nurses (one to three nurses at each site), six focus group discussions of community level health officials,
and 49 in-depth interviews with village health volunteers.
Data from the KAP study resulted from face-to-face structured interviews of 1170 adults from
four provinces in three regions of Thailand, split fairly evenly among three age groups (20-39; 50-59; 6074). Respondents were selected at systematic intervals from population registers where they existed;
introductions were provided by local health staff and/or village health volunteers.12 Data from the PHA
study resulted from assisted self-administered questionnaires from 425 PHAs from two provinces in the
upper north and Bangkok. Most PHAs were recruited from local support groups; all were asked to
participate.13 Village health volunteer (VHV) survey data resulted from semi-structured face-to-face
interviews of 49 VHVs, each serving a subset of households in a village. VHVs were recruited by our
professional contacts working in provinces of interest. These interviews generated contextual information
on 49 sub-communities from six provinces representing three sub-regions of Thailand, and family level
information for 64 AIDS affected households. Qualitative data were collected using semi-structured
guidelines, and were systematically coded and analyzed using a standard text analysis program (The
Ethnograph). Qualitative results are used here primarily to supplement and illustrate the survey findings.
12
For more information about this survey, please see our research report VanLandingham et al. 2001; downloadable
from the website listed in the bibliography.
13
For more information about this survey, please see our research report Im-em et al. 2001; downloadable from the
website listed in the bibliography.
20
Table 1: Background information for each data source
Survey Data
AIDS parents survey Family level
Specific positive and
Key dimensions of community reaction negative attitudes and
measured
behaviors
TACS
Community level
Community reactions towards PHAs and
their families
Health official in local community
Key features of the respondent
Year data collected
Key features of the case
Older parents of
PHAs
1999
2000
Age 50 or older;
AIDS affected local
child had died of
community in which
AIDS within the past AIDS death in local the key informant
3 years
community
works
85 health stations,
Parents of 394 PHAs 286 supplemented
each serving a
who died
PHA cases
community cluster
Sample size
Abbreviations:
TACS: Thai AIDS Cases Survey
KI-I: Key Informant Survey, Individual Cases
KI-G: Key Informant Survey, General Situation
PHA: Person with HIV and/or AIDS
VHV: Village Health Volunteer
KAP survey
PHA survey
Specific positive
Overall levels of AIDS and negative
knowledge, and fears attitudes and
of casual contact with behaviors towards
PHAs
specific PHAs
Selected adult
community members
1999
VHV survey
Specific positive and
negative attitudes and
behaviors towards
specific PHAs and their
families; general
community reaction
Generally members Village health volunteers
of PHA support
working in selected
groups
communities
1999-00
2001
Young (age 20-39)
and older (age 50-74)
age adults
Young adult PHA
Family with a PHA living
in their area of
responsibility
1170 adults
49 VHVs; 64 AIDS
affected families
425 PHAs
Table 1 continued:
Hospital staff group
interviews
Medical staff
Key dimensions of community reaction treatment of PHAs
measured
and their families
Year data collected
2001
Key features of the respondent
Sample size
Abbreviations:
FGDs: Focus Group Discussions
IDIs: In Depth Interviews
PHA: Person with HIV and/or AIDS
VHV: Village Health Volunteer
Qualitative Data
Local health staff
VHV in-depth
focus group
interview exerpts
AIDS parents in-depth
interviews
Specific positive and
negative attitudes and
General community behaviors towards
reaction to PHAs and specific PHAs and
their families
their families
2001
2001
Specific positive and
negative attitudes and
behaviors towards
specific PHAs and
their families
1999
Nurses working in
Local rural
selected provincial
community health
and district hospitals officials
6 group interviews
6 FGDs
Village health
volunteers working in
selected communities Older parents of PHAs
49 VHVs or
Parent(s) of 18 PHA
communities
deaths
Table 2 Experience of the respondents with AIDS by age and sex (KAP survey)
Experience with AIDS
% interested to know about AIDS
% ever attended AIDS lecture
% ever been tested for HIV
% ever worried about getting AIDS
Never
Some
A lot
% ever lived with or cared for PWA
% ever known PWA
Key features of AIDS knowledge - proportion answering "correctly"
Ever heard of AIDs
Get AIDS by having unprotected sexual relations with a PWA***
(q34)
Get AIDS from work or live nearby PWA** (q23)
Get AIDS from sharing meal with PWA** (q24)
Get AIDS by using the same toilet as a PWA** (q35)
Get AIDS by living in the same household with a PWA** (q36)
Get AIDS by sharing a drinking glass with a PWA** (q33)
Get AIDS from eating a meal prepared by someone who has the AIDS
virus** (q27)
n (number of respondents)
Key:
* Best answers are true or very possible.
** Best answers are false or not possible.
*** Best answers are very or somewhat possible.
Age group
Total
75
34
22
20-39
87
36
38
50-59
76
37
17
60-74
61
29
10
77
17
4
13
69
66
28
6
16
70
80
17
3
11
70
87
8
4
11
67
99.7
100
100
99.3
98
70
69
67
66
57
99
74
72
78
74
66
97
73
75
64
65
62
97
63
60
58
60
44
56
1171
65
398
58
368
47
405
Table 3: General community reaction to PHAs and their families (TACS and VHV surveys)
Perspective of local health officials and village health volunteers
Duration of
epidemic in Provincial levels of
prevalence
Area
area
Peri<= 4 >= 5
yrs
yrs
Low
Medium
Total urban~ Rural
TACS - community level data
General reaction in area to affected families (%)
--most people are neutral
71
71
72
84
65
68
78
--most people avoid contact with family
9
16
3
6
8
12
4
--most people criticize family
1
3
0
3
0
0
4
--most people feel sympathy
7
3
10
0
11
6
7
--neutral or sympathetic
4
3
5
3
5
2
7
--other (mostly variable)
8
5
10
3
11
12
0
Total
100
100
100 100
100
100
100
Perceived trend in community reaction in their area (%)
--no perceived change
--becoming more tolerant
--becoming less tolerant
--other
Total
Number of health stations/communities
VHV survey - community level data
General reaction to PHAs in the community (%)
--most remain the same as before
--some offer help
--some judge them negatively
--some feel sympathetic
--some feel disgust
--some try to avoid them
--some gossip about them
Perceived change over time (%)
--improved
--stayed the same
--got worse
Total
Number of VHV sub-communities
11
87
0
3
100
75
82
76
51
90
51
49
63
84
12
4
100
49
Notes:
~Includes Bangkok and provincial urban and periurban sites
None of the above bivariate comparisons are statistically significant.
11
86
0
3
100
37
11
87
0
3
100
38
19
74
0
7
100
31
6
94
0
0
100
36
12
86
0
2
100
50
8
88
0
4
100
25
Table 4: Range and distribution of community reaction to specific cases that were known about by the community (TACS)
Perspective of local health officials
Community characteristics
Duration of
epidemic
Type of reaction
Observations made by local health officials
Degree of openness of the case to community (%)
--generally open
--only to family, friends, and/or health workers
--not open
Total
N (AIDS affected families)
significance
Reaction to family during illness among open cases (%)
--no difference from before illness
--only negative reaction
--only positive reaction
--mixed positive and negative reaction
Total
N (AIDS affected families)
significance
Reaction to family after the death among open cases (%)
--no difference from before illness
--only negative reaction
--only positive reaction
--mixed positive and negative reaction
Total
N (AIDS affected families)
significance
Notes for KI data:
n=286 cases that the key informant knew best (PHA and PDA).
Total <= 6 yrs >6 yrs
NGOs work on
AIDS in area
No
Yes
Individual and family characteristics
PDA's character
Sex
SES of family
Good or Qual or
Mednormal
bad
Male Female Good ium Poor
57
25
18
100
286
54
26
20
100
128
61
22
17
100
132
ns
48
28
24
100
147
66
22
12
100
136
**
55
30
15
100
67
48
33
20
100
40
ns
55
26
19
100
209
62
23
15
100
74
ns
43
29
29
100
49
54
30
15
100
105
69
18
13
100
61
*
38
17
35
10
100
223
38
20
30
13
100
104
39
15
38
9
100
103
ns
27
20
43
10
100
103
47
15
28
11
100
120
*
23
13
52
12
100
52
35
42
13
10
100
31
***
37
19
35
10
100
165
40
14
34
12
100
58
ns
38
5
49
8
100
37
38
23
34
5
100
79
42
18
34
6
100
50
ns
80
8
11
1
100
212
84
7
9
1
100
92
80
5
15
1
100
103
ns
78
11
11
1
100
95
82
5
12
1
100
117
ns
75
17
6
2
100
48
73
13
10
3
100
30
ns
85
6
8
1
100
156
68
11
21
0
100
56
*
75
6
19
0
100
36
78
9
12
1
100
81
88
10
2
0
100
42
ns
Significance of Pearson's chisquare tests: *p<= 0.05; **p<= 0.01; ***p<= 0.001
Table 5: Types and distribution of specific positive and negative community reaction to specific cases that
the community knew about (TACS/local health officials and VHV survey)
Perspective of local health officials and village health volunteers
Total
Type of reaction
Observations made by local health officials - community reactions during the illness
Frequency of specific negative reactions observed during the illness (%):
--PHA or family was avoided by some
9
--PHA or family was criticized by some
8
--PHA or family experienced avoidance and criticism
3
--other
3
--no negative reaction reported
78
Total
100
N (AIDS affected families)
278
Frequency of specific positive reactions observed during the illness (%):
--PHA or family received expressions of sympathy only
--PHA or family received visits and/or actual help
--other
--no positive reactions reported
Total
N (AIDS affected families)
16
19
1
64
100
278
Observations made by local health officials - community reactions after the death
Frequency of specific negative reactions observed after the death of the PHA (%):
--PHA or family was avoided by some
--PHA or family was criticized by some
--PHA or family experienced avoidance and criticism
--other
--no negative reaction reported
Total
N (AIDS affected families)
3
1
0
2
93
100
250
Frequency of specific positive reactions observed after the death of the PHA (%):
--PHA or family received expressions of sympathy only
--PHA or family received visits and/or actual help
--other
--no positive reactions reported
Total
N (AIDS affected families)
Observations made by village health volunteers - community reactions before and after the death of the
PHA (%)
PHA and their family received help from neighbors.
PHA and their family were avoided by neighbors.
PHA and their family experienced both.
PHA and their family experienced neither.
N (AIDS affected families)
Notes for TACS data: Based on a dataset of 286 AIDS cases that the key informant knew best.
Notes for VHV data: Categories are not mutually exclusive
Significance of Pearson's chisquare tests: *p<= 0.05; **p<= 0.01; ***p<= 0.001
9
0.4
0.8
90
100
250
64
23
16
25
64
Table 6: Extent, degree, and types of reactions among neighbors to family during the illness of the PHA (AIDS parents survey)
Perspective of AIDS parents
Sex of PHA
Socioeconomic status
Residence
Total
Who in the community knew about the death and when? (%)
--all or almost knew during illness
--only some knew during illness
N (number of AIDS households)
Among those deaths the community knew about during the
illness: (%)
Had at least some neighbors show sympathy or offer help during the
time of the illness
--visited
--looked after the sick child
--brought some food
--brought medicine
--gave advice (e.g., about food, care and medicine)
--provided transportation or went with you to the hospital
Had at least some neighbors show negative reaction
--avoided talking to you or others in household
--gossip
--would not visit your home
N (number of AIDS households that the community knew about)
Net reaction from neighbors during the illness among families
where the case was known about (%)
--experienced sympathetic reactions only
--experienced negative reactions only
--experienced both sympathetic and negative reactions
--experienced neither sympathetic nor negative reactions
Total
N (number of AIDS households that the community knew about)
Duration of the negative reactions during the illness (%)
--less than a month and then ended
--more than a month and then ended
--ongoing (and for at least 6 months)
Total
Thought of moving away because of negative reaction during the
illness (%)
N (number of AIDS households experiencing negative reactions)
Male
Female
Well
off
Medium
Poor
Rural
Character of PDA
Good Good w
Urban wo qual qual
Bad
84
8
393
84
9
311
88
4
82
73
13
60
88
7
200
84*
6
128
86
5
322
77***
18
71
85
7
307
86
12
43
94
96
36
63
28
61
38
25
14
25
20
358
95
95
35
63
28
62
36
24
13
24
18*
284
90
97
40
67
24
59
45
29
18
28
30
74
98
98
33
62
27
63
25
23
9
20
19
54
93
97
42
63
24
61
44
24
14
25
17
183
92
93
28*
64
33
62
35*
29
16
28
26
117
93
96
39
65
29
64
40
25
14
24
19
289
97
93
19***
58
21
48**
30
26
16
27
26
69
94
97
37
65
26
62
40
24
13
24
19
279
93
81
93 81**
35
19
58 29**
37
29
63
57
35
29
23
33
12
25
18
39
19
32
42
19
71
3
22
4
100
375
73
3
22
3
100
297
64
3
26
8
100
78
77
2
21
0
100
56
72
3
21
4
100
194
67
3
25
5
100
120
71
3
22
4
100
306
71
0
26
3
100
69
72
2
22
4
100
292
33
48
19
100
38*
48
14
100
17
50
33
100
33
58
8
100
39
48
13
100
22
47
31
100
30
54
16
100
42
26
32
100
13
88
13
67
10
21
0
12
9
44
23
31
10
72
25
16
74
5
19
2
100
43
57
10
24
10
100
21
Insufficient cell sizes
67
Notes for AIDS parents data:
-Based on interviews of older parents in a sample of 394 households that experienced a death to AIDS during the period 3 years to 6 months prior to the survey.
-Proportions reporting specific positive and negative reactions are based on all cases and include both prompted and unprompted responses.
Significance of Pearson's chisquare tests: *p<= 0.05; **p<= 0.01; ***p<= 0.001
78
9
23
7
7
Table 7: Extent, degree, and types of reactions of neighbors to family after the death of the child (AIDS parents survey)
Sex of PHA
Socioecon status
Residence
Total
Among those cases where the funeral was held within 25 kms:
Attendance at the funeral: (%)
--many or a normal amount
Had at least some neighbors show sympathy or offer help after the
death of the child (%)
--Visited you and your family
--Helped with the funeral arrangements or activities
--Attended the funeral activities
Had at least some neighbors show negative reaction after the death of
the child (%)
--Avoided talking to you or others in your household
--Gossip
--Would not visit your home
--Refused to attend the funeral (if local funeral)
--Refused to eat or drink at the funeral (if local funeral)
Male
Female
Well
off
Medium
Poor
Rural
Character
Province
Good Good
Urban wo qual w qual Bad
Ray
CM
Phi
91
91
93
97
92
89
92
89
92
95 70***
92
97 83***
91
90
95
98
92
90
95
98
87
89
94
96
88
98
97
100
91
93
97
99
93*
81***
92
95*
93
93
97
99
85*
76***
89**
94*
92
92
96
99
93
88
98
98
87
78
91
96
90
93
97
98
95
88
97 77***
99 88***
99
96
16
8
16
10
8
8
15
8
14
9
7
6
19
7
20
13
12
15**
12
3
12
5
5
5
15
9
14
8
6
7
20
8
19
14
14*
11
15
6
15
8
8
8
19
13
18
15
11
7
16
7
15
8
7
7
19
10
14
14
12
5
22
17
37*
19
20
18
21
8
17
10
8
8
12
4
9
5
3
4
N (number of AIDS households)
76
1
15
8
100
394
78
1
14
7
100
311
69
1
18
12
100
83
77
0
12
12
100
60
77
0
14
9
100
201
76*
3
17
4
100
128
79
1
14
7
100
322
67
1
18
14
100
72
77
1
15
8
100
308
77
2
16
5
100
43
70
4
17
9
100
23
69
0
20
11
100
137
84 76**
1
3
11
13
5
9
100
25
153 104
Duration of the negative reactions after the death (%)
--less than a month and then ended
--more than a month and then ended
--ongoing
Total
N (number of AIDS households experiencing neg reactions)
45
29
26
100
69
50
25
25
100
48
33
38
Insufficient cell sizes
29
100
21
7
32
29
42
36
23
100
53
56
6
Insufficient cell sizes
38
100
16
52
6
9
65
19
15
100
26
23
15
62
100
13
Net reaction from neighbors after the death (%)
--experienced sympathetic reactions only
--experienced negative reactions only
--experienced both sympathetic and neg reactions
--experienced neither sympathetic nor neg reactions
Notes for AIDS parents data:
-Based on interviews of older parents in a sample of 394 households that experienced a death to AIDS during the period 3 years to 6 months prior to the survey.
-Proportions reporting specific positive and negative reactions are based on all cases and include both prompted and unprompted responses.
Significance of Pearson's chisquare tests: *p<= 0.05; **p<= 0.01; ***p<= 0.001
15
13*
25**
17**
17***
14**
37
43
20
100
30
Table 8: Community Reaction to PHAs (PHA survey)
Perspective of PHAs
Sex of PHA
Education level
Residence
Province
Total
Rural Urban CM CR Bkk
Male
Female Low ed Med ed Hi ed
Q56. Community reaction to
PWAs generally (%)~
- No reaction; no different from
before
21
20
21
23
19
18
23
16
21
32
8
- general talk
30
29
31
31
33
26
33
24
41
43 23
- sympathy
41
31
46**
35
53
32***
52 16***
33
62 12
- support
49
34
56***
46
62
35***
62 21***
41
73 12
- help the PWA
19
11
22**
16
23
16
24 7***
18
28
7
- disgust/fear
28
30
26
31
23
29
28
26
23
32 30
- look down upon
20
20
19
26
16
16*
20
19
24
23 18
- gossip
39
37
40
47
35
33*
42
34
47
45 35
Q57.Community knows about
HIV status of R (%yes).
80
71
85***
87
85
65***
94 52***
91
93 42
n
424
139
285
156
154
114
288
136 100 100 100
Q58. Community reaction to
respondent/those whose
community know (%) ~
- No reaction; no different from
before
19
22
18
21
19
16
20
17
21
25 14
- general talk
32
36
30
29
35
31
31
34
41
41 40
- sympathy
51
39
56**
43
63
45***
58 25***
35
61 24
- support
57
42
63***
47
71
49***
64 30***
43
72 12
- help the PWA
23
15
26*
18
29
23
25
15
16
32 17
- disgust/fear
33
43
29*
35
26
42*
31
42
30
35 60
- look down upon
24
30
22
32
18
20**
22
31
29
25 38
- gossip
45
47
44
50
40
43
44
46
53
47 52
n (known to community)
341
98
243
136
131
74
270
71
91
93 42
Notes: ~ Multiple response: will not sum to 100%
Note: Low education = less than 6 yrs; medium = 6 yrs; high = more than 6 yrs.
Significance of Pearson's chisquare tests: *p<= 0.05; **p<= 0.01; ***p<= 0.001
LP
21***
18***
53***
65***
21**
26
15
31*
93***
124
16
14***
65***
71***
23
24***
15**
33*
115