Research On Strategies For Living With People With HIV - AIDS in The Community

Research on Strategies for Living with People
With HIV/AIDS in the Community
Som-arch Wongkhomthong, M.D

Kishio Ono, M.D
ASEAIY
Institute for Health Development Mahidol University r997
Funded by Japanese Foundatlon for AIDS Prwentlon
Som-arch Wongkhomthong, M.D Kishio Ono, M.D
ASEANI Institute for Health Development
Mahidol University
L997
Funded by Japanese Foundation for AIDS Prevention
ffi
By Som-arch Wongkhomthong, Kishio Ono ISBN: 974-661-588-2
First Edition t997 Printed by Printing Division ASEAN Institute for Health Development Mahidol University, Salaya Nakornpathom 73 170, Thailand
Som-arch Wongkhomthong Research on Strategies for Living with PeopleWith HIV/AIDS
in the Community /Som-arch Wongkhomthong, Kishio Ono l.Acquired Immunodeficiency Syndrome. 2. HIV Infections.
3. Community. 4. Research.I. Ono, Kishio. tr. Title. WC503 56931 1997
ISBN :974-661-588-2
Acknowledgements
We would like to express our gratitude to the Japanese Foundation for AIDS Prevention for their support of the research project on "The Research on Strategies for Living with People with HIV/AIDS in the Community" in Thailand.
We would like to take this opportunity to thank all those that contributed valuable insights and ideas to this research project : Especially, Mr. Ton Smits for his contribution of the literature review on the "Current Situation of HIV/AIDS in Thailand and Factors Associated with Acceptance of People Living with HIV/AIDS in The Community", Ms. Somjai Pramonpol and Ms. Hathairat Suda for data collection and organizing the training workshop for field workers and community volunteers, and many other contributors to this
research project.
It is our hope that the contents of this research will contribute to acceptance and non-discrimination of people living with AIDS in
communities in Thailand and the developing countries of the region.
the the
Som-arch Wongkhomthong, M.D. Kishio Ono, M.D.
Table of Gontents
Page Acknowledgements
1 Chapter 2
Chapter
Summary of the Research
Project
1-3
Results of Literature Survey on the Current Situation 4-41 of HIV/AIDS in Thailand and Factors Associated with the Acceptance of People Living with HIV/AIDS (PHA) in the Community. Results of the Cross-sectional Community Regarding the Situation of Acceptance and NonDiscrimination of PHA in The Northern Part of Thailand.
Ghapter
Survey
42-60
Chapter
Results of the lmpact Workshop on Strategies the Promotion of Acceptance and Non-Discrimination towards People with HIV/AIDS in the Noilhern Paft of Thailand. Results of the Training Workshop for Field and Community Volunteers on Community Preparation for Living with People with AIDS.
for
61-69
Chapter
Workers 70-77
Appendices
1. Questionnaires No. l, ll, lll (English 2. Questionnaires No. l, ll, lll (Thai
Translation) Language)
78-85 86-97
List of Tables
Page
Table
1 2 3
Number of HIV/AIDS and Number of in the Study Areas
Respondents and Family
48
Table
General Socio-Economic Profiles of Villagers PHA Family Memers
49
Table
Acceptance of PHAs by the villagers and PHA Members
50-52
Table
4 Table 5
Table
Community The Most lmportant Problems for PHAs as

Caring for PHAs in the perceived by the Villagers and PHA Family Members Possible Ways for Community Cooperation to PHAs as Perceived by the Villagers and PHA Family Members.
53-54
55
6 7 8 9
Help
(PHA)
56
Table
General Information about People with HIV/AIDS in the Survey

Acceptance and Care by Family Members as by PHAs Support for PHAs from Other
57-58
Table
perceived
59
Table
Organizations Table 10 Benefits from Being a Member of PWA Group Table 11 The Greatest Problems for PWAs as Perceived by PWAs
Themselves
59 60 60
Table 12 Types of Communities to Help PHAs as Requested by
PHAs
60
Chapter 1 Summary of the Research Project 1. Title of the Research Project

Community
:
Research on Strategies for Living with People with HIV/AIDS in the
2.
Main Researcher:
Dr. Som-arch Wongkhomthong Director ASEAN Institute for Health Development Mahidol University, Thailand Dr. Kishio Ono Chief Medical Officer Mie Prefecture Office Japan
3.
Main Activities of the Research project
3.1 3.2
4.
Research on strategies for the promotion of acceptance and nondiscriminatory practice towards people with HIV/AIDS living in the
community
Training workshop for field workers and community volunteers for strategies for living with people with HIV/AIDS in the community
Background and Rationale: Since the occurrence of the first AIDS case in 1984, almost 700,000 people have become infected with HIV (HlV+) and among them, almost 50,000 cases have developed certain signs and symptoms. By the year 2,000, Thailand will come up with 2-3 million people with HIV and 200,000-400,000 people with AIDS (PWA). AIDS has already infected all ranges of people, mainly, IVD users, homosexuals, prostitutes, heterosexual men, housewives and children. Although actions for the prevention and control of AIDS are still very important, the emerging need now is to find certain strategies to promote acceptance and nondiscriminatory practices towards people with HIV/AIDS living in the community. Some communities have already taken some positive actions, but many remaining communities are still confused and struggling with the
problem.
2
5. Obiective of the Research :
General Objective To study appropriate strategies for the promotion of acceptance and nondiscriminatory practices towards people with HIV/AIDS living in the community
Specific Obfectives
5.1 To study situations, 5.2 5.3 5.4
problems and strategies for the acceptance of people with HIV/AIDS in Thaicommunities To conduct a workshop of exparts to brainstorm important strategies for the promotion of acceptance and non-discrimination towards people with HIV/AIDS in the community To organize a training workshop for field workers and community volunteers for the acceptance and non-discriminatory practices towards people with HIV/AIDS living in the community To give recommendations to the Japanese Foundation for AIDS Prevention about appropriate strategies for the promotion of acceptance and non-discriminatory practices towards people with HIV/AIDS living in the community
6. Research Methodologies
6.1 A survey of Literature on the current situation of HIV/AIDS

Thailand and factors associated with the acceptance
in
6.2
6.3 6.4
of People Living with HIV/AIDS (PHA) in the community A cross-sectional study of four selected communities conceming their situations and problems lmplementation of a workshop composed of experts ot review the strategies lmplementation of training workshop for field workers and community volunteers to test the above strategies
7. Research period
7.1
7.2 7.3 7.4 7.5
Literature survey from April-August 30, 1996 Cross-sectional study of four selected communities conceming the situations and problems during January 1997 lmplementation of a workshop for experts during January 1997 lmplementation of a training workshop during February 1997 Preparation of the research report during March 1997
3
8. Benefits of the Research Project :
The research project provides appropriate strategies for the promotion of acceptance and non-discriminatory practices towards people with HIV/AIDS living in the community. The strategies can later be promoted on a nationwide scale by government organizations. lt can also be adopted by non-government organizations for their activities or by the community organizations themselves. Better acceptance and nondiscrimination towards people with HIV/AIDS at the community level will lead to a better quality of life for people with HIV/AIDS and more successful health community activities, as well as to alleviate problems of
institutional-based care.
9. Major Output of the Research Project
9.1 A literature suruey on the acceptance of people living with HIV/AIDS 9.2
A cross-sectional community
Chapter 3)
in the community (see details in Chapter 2)
study in four selected communities

in
with HIV/AIDS in the nofthern paft of Thailand (see details

9.3
concerning the situations and problems of acceptance of people living
workshop with experts on strategies for the promotion of acceptance and non-discrimination towards people with HIV/AIDS in
the Northern part of Thailand (see details in Chapter 4) 9.4 A training workshop for field workers and community volunteers on community preparation for living with people with AIDS (see details in Chapter 5)
Chapter 2
Results of Literature Survey on
Current Situation of HIV/AIDS in Thailand and

Factors Associating with Acceptance of People Living with HIV/AIDS
in the Community
2.1 Conceptual Framework for Literature Survey

demographic variables
Age Income Occupation/employment status Family size/composition Gender Marital status Education Religion Duration of stay in this community
ity and availability Medical facilities District nurses NGOs Antiretroviral Drugs Home making Home Health aides Confidants Counseling service
for
-PHAs
Volunteers/Confidants Trad itional/alternative HC-herbal
Knowledge of HIV/AIDS and People Living with AIDS

lnfection Symptoms Severity Transmission Prevention Home health carephysical/psycholog ical
Acceptance of People Living with AIDS
Attitudes towards HIV/AIDS and People Living with AIDS

Infection Symptoms Severity Transmission Prevention Home health carephysical/psycholog ical
Social Norms and Values of HIV/AIDS and People Living with AIDS
Taboos Misconceptions Stigma Discrimination
2.2HIV the Global Situation

A recent report released in November '97, by the Joint United Nations Program on
HIV/AIDS (UNAIDS) and the World Health Organization (WHO) shows that infection with HlV, the virus that causes AIDS, is far more common than previously thought. Over
30 million adults and children are now believed to be living with HIV infection -- one in
every 100 sexually active adults worldwide

million.
- and if current
transmission rates hold
steady, by the year 2000 the number of people living with HIV/AIDS will soar to 40
"The more we know about the AIDS epidemic, the worse it appears to be," said Dr Peter
UNAIDS. "We are now realizing that rates of HIV transmission have been grossly underestimated - particularly in sub-Saharan Africa, where the bulk of infections have been concentrated to date, South Africa now
Piot, Executive Director
of
estimates that one in 10 adults are living with HIV - up by more than a third since 1996.
And in Namibia, AIDS now kills nearly twice as many people as malaria, the next most
common killer."
Acceptance of People Living with HIV/AIDS in the Community
UNAIDS and WHO now estimate that 5.8 million people were infected in 1997, at a rate
of 16,000 new infections every day. This includes 590,000 new infections
among
children, bringing the total number of children under the age of 15 currently living with HIV/AIDS to 1.1 million. Because over90% of people with HIV live in the developing
world, where there are few facilities for voluntary testing and counseling, UNAIDS
estimates conservatively that nine out of ten H|V-positive people have no idea they are infected. Many would probably want to know, provided they felt protected from stigma
and discrimination.
lt is estimated that 2.3 million people died of AIDS in 1997
a 5Oo/" increase over 1996.
Nearly half of those deaths were women, and 460,000 were children under 15. The full impact of the epidemic in terms of AIDS mortality is only just beginning.
2.3 Asia
With 60 % of the world's population, Asia will come to dominate the HIV picture in
terms of total numbers infected
The HIV/AIDS pandemic's focus is shifting from Africa to Asia, the world's most populous continent. According to UNAIDS data, an estimated 5.3 million people were
infected with HIV/AIDS in Asia as of the end of 1996. Current trends suggest that Asia may have surpassed Africa, in terms of the highest number of new infections per year.
In most Asian countries for which there is information, the HIV/AIDS epidemic has
reached a concentrated stage either nationwide or at least in some states or provinces,
meaning that HIV has risen
to high levels among those practicing the highest
risk
behaviors and is set to spread more widely in the rest of the population, according to the
World Bank report: Confronting AIDS: Public Priorities in a Global Epidemic.
Acceptance of People Living with HIV/NDS in the Community
Infection rates in Asia are lower, but the numbers are large
In Asia, the epidemic is more recent than in Africa, and only a few countries in the region have developed sophisticated systems for monitoring the spread of HlV.
ol the total adult population, are still low by the standards of many countries, although well over ten times higher than in neighboring China. While surueillance remains patchy, the indications are that between three and
In fndia, infection rates, at under
1o/o
five million people are living with HlV, making lndia, even at the most conservative
estimate, the country with the largest number of H|V-infected people in the world.
In China, even as the epidemic continues to spread among injecting drug users in the southwest of the country, a second major focus is now surfacing among heterosexuals
living along the prosperous eastern seaboard. At the end

government estimated that up
of
1996, the Chinese

Some
to 200,000 people were living with HIV/AIDS.
estimates indicate that this figure may have already doubled by now.
In Southeast Asia the picture is mixed. lt is bleakest in Cambodia, where 1 in 20 pregnant women, 1 in 16 soldiers and policemen, and 1 in 2 sex workers tested HIVAcceptance of People Living with HIV/AIDS in the Community
positive in the most recent monitoring surveys. Myanmar and Vietnam are also seeing a
rapid spread of HlV. In Myanmar, HIV infection among sex workers rose from 4% in
1992
to over 2Oo/" in 1996, while two-thirds of injecting drug users are infected. In
contrast, sustained prevention efforts in Thailand are continuing to produce evidence of
a fall in new infections, especially among sex workers and their clients - the groups which account for the majority of the some 750,000 people currently infected in the
country.
2.4.L HIV/AIDS situation in Thailand
The first case of AIDS in Thailand was reported in September 1984. Progressive numbers of AIDS cases as well as people with HIV were reported throughout the following years. Early cases were generally confined. to Thai homosexual males
returning from abroad. This was followed by an explosive spread of HIV infection among injecting drug users (IDUS) in 1987 and 1988. The virus then spread to male and female
commercial sex workers and their clients with the result that heterosexual transmission
became increasingly important. By 1991 many provinces started reporting cases of

perinatal transmission. ln 1985, Thailand initiated blood screening and since 1989 every unit of donated blood is screened for HlV. The HIV/AIDS epidemic is more advanced in
the north of Thailand and the largest number of AIDS cases are reported from that part
of the country (except Bangkok). lt is expected that the HIV/AIDS epidemic in Thailand
will continue to expand, with heterosexual intercourse being the most important mode of transmission
2.4.2 Current situation and trends

In less than a decade, the HIV/AIDS epidemic in Thailand has grown from a handful of infections to become a major national problem with wide ranging medical, social and economic consequences for the country. In the beginning, HIV gained a foothold in the
drug injecting community and among commercial sex workers, but spread with
Acceptance of People Living with HN/AIDS in the Community
10
frightening speed to the population at large. Currently, twice as many men as women are HlV-positive, but this imbalance is projected to level out as transmission occurs from clients of commercial sex workers, who may not be aware of their seropositivity, to their
wives or girlfriends and children.
Thai HIV prevention efforts have made substantial progress in reducing new infections
each year, with the result that the number of new infection has dropped almost four-fold
since 1990. To date, more than 800,000 Thai people have been infected. Currently, a
great number of people with AIDS and other symptomatic HIV infection cases are
seeking medical and hospital care. Nationwide this number is increasing rapidly. At this
stage, what Thailand has been facing and will have to face, is the economic burden of AIDS in order to prevent and control AIDS, providing care and treatment for those who
are infected with HIV and AIDS patients, supporting them and their caregivers.
In addition a large number of people and communities could not accept persons living with HIV/AIDS within their vicinity. Specific service centers for persons with HIV/AIDS or
relief centers were discriminated against and forced out of the areas. This led to much
stress on people living with HIV/AIDS as they were not accepted by society, and was particularly distressing to those already faced with economic problems. Counseling
service for this target group was often inadequate and inappropriate. While some may
cause undesirable social problems of different forms, persons living with HIV/AIDS are
discriminated against (National AIDS Committee, MOPH, 1996).
In order to cope with the devastating situation of HIV/AIDS, the Thai government has
responded by setting up the National AIDS prevention and control program. In terms of preventing new cases of HIV infection, the results of prevention programs implemented
throughout the country have been highly encouraging. Particularly noticeable has been the sharp drop in the number of HIV infections among young Thai men. The rate of HIV infection among young military recruits has declined from 4.0% in May 1993 to 2.2Y" in
November 1995 - a reduction of nearly 50% (AIDS Watch, February 1997)
'11
2.5 Action taken and further required

2.5.1 Preventing parental infections through prevention efforts for women and men
The national AIDS program has been successful in reducing the risk of infection in
adults through interventions such as public education campaigns aimed at changing
sexual risk behavior; condom promotion; and improvement of STD treatment services.
The program has had particular success in reducing infection rates among men. The
number of men visiting sex workers has halved over four years, and due to the
rates have dropped dramatically.
100o/o
condom use campaign, condoms are widely used in commercial sex work and STD
Single women have not been given a high priority in HIV/AIDS prevention campaigns, because of the presumption that there is little sexual activity in this group. However, in
fact this is not always the case: surveys among single female factory workers in Bangkok have found that perhaps ZC./o have had at least one sexual experience.
Although there
is evidence that married women are becoming infected from their husbands, HIV prevention strategies among married women have not been
systematically implemented on a large scale. Recent developments have addressed these concerns. A program initiated by TRC, one of the largest NGOs in Thailand, funded by UNICEF and the Australian government, has
reached young women and young men

Moreover,
a national communication
in factories in more than 30 provinces. plan on HIV/AIDS targeted at reducing risk for
women has been initiated as a collaborative effort among non-government agencies,

private business and the government.
2.5.2 Prevention of marital HIV transmission

The vast majority of HIV infections among adults and children are
potentially
preventable if couple know the HIV status of each other and are able to jointly make
12
informed decisions about condom use and having children, Thailand has started a large
scale program, including both services and an information campaign, to promote voluntary premarital HIV counseling and testing and voluntary HIV testing and
counseling in integrated reproductive health seruices.
2.5.3 Preventing mother to child transmission

Couples
in Thailand living with HIV have a few options for reducing mother-child
transmission.
They may decide to use contraception and not to have any more children. Thailand is now expanding its programs for voluntary HIV testing, and for
contraceptive seruices and counseling
husbands.
for
HIV-positive women and their
The govemment and NGOs have initiated a program to buy the drug AZT to treat pregnant mothers and their new-bom. Because AZT has been shown to reduce
mother-child transmission
of HlV, the new program is designed to
address
problems with the cost, supply and distribution of the drug as
it currently too
expensive for many families. In this program, funds are being raised from the
general public and businesses to buy the drug, while the necessary care is
provided by participating hospitals.
A cheap new RTI may help save babies. Right now, most children who develop AIDS catch the HIV infection from their HIV-infected mother, either at birth or
through breast milk. This is a problem in many parts of the world, especially in Africa, where, for example, up to 40 percent of pregnant women in Zimbabwe and Botswana have HlV. Although we already know that the drug zidovudine can
help stop HIV from passing from mother to child, a new RTI called nevirapine
may be able to do it at a cost of only $2 per baby. This would make nevirapine an
effective and affordable drug treatment in many of the world's poorer countries
where the AIDS epidemic is hitting especially hard.
Acceptance of People Living with HN/NDS in the Community
13
2.5.4 Caring for people with HIV

Many hospitals in Thailand have long experience in providing medical care for people with HIV/AIDS and the government has prepared guidelines for the clinical management
of children. The country also plans to strengthen the capacity of most hospitals to
provide medical care to adults and children and to deal with variations in opportunistic
infections. This includes making antiretrovirals and prophylaxis available for

opportunistic infections in children, At the local level, there is
a strong proposal to
improve follow-up and psychosocial support to H|V-infected children and mothers as an
integral part
of
routine antenatal, perinatal and postnatal care.
In addition, the
government is putting more emphasis on eliminating discrimination in medical settings.
2.5.5 Reducing the impact on children orphaned by AIDS

Thailand has introduced various small-scab projects to care for and support children orphaned by AIDS within the community and family networks. Larger-scale projects are
now beginning. lt is not the policy to isolate the children in institutions, but rather to help
them remain with the extended family. An effort is made to counsel relatives, reduce
misunderstandings
in the community and provide necessary financial subsidies.
In
addition, traditional networks such as the temple boys system are being revived to allow
the fostering of orphans, Thai teachers have also begun playing a key role by ensuring
orphans are not discriminated against or stigmatized at school.
2.5.6 Preventing the spread and reducing the impact

among children in difficult circumstances
of HIV
Govemment and non-governmental agencies have integrated HIV/AIDS education into
their outreach programs for street children. This began in cities such as Bangkok and
Chiang Mai, and is expected to expand to other cities.
Acceptance of People Living with HMAIDS in the Community
'14
The government recognizes that HIV/AIDS is a major concern which adds to the
seriousness of the problem of commercial sexual exploitation of children. The issue of child prostitution has been a high priority in Thailand in the last four years. The past two
to address the problem, and police action against procurers and brothels offering children for sex has been stepped up. In
governments have taken legal measures addition, income-generating projects have been targeted at parents of children with few economic opportunities. The Prime Minister has initiated
a program at the
provincial
level, and established a joint governmenVNGO monitoring agency. Moreover, provinces
which meet targets are given national recognition and media coverage. An increasing
number of provinces have reported success in stopping child prostitution.
Thailand's strong commitment
to addressing the issue of HIV/AIDS in children
is
illustrated by a high-level meeting in November 1995, chaired by the deputy Minister of Health. Govemment ministries, non-governmental agencies, businesses and the media
the national assessment of problem and further action to be taken. Intemational agencies including UNAIDS and its co-sponsors will continue to play a crucial role in supporting these efforts and disseminating lessons leamed to other
discussed
countries.
Strategies
1. Development of a Referral System for HIV/AIDS
1. Mobilization of Health Manpower Resources 2. Development of Financial Support Systems for People with HIV/AIDS 3. Reform of Health Care Provision System for HIV/AIDS 4. Development of Alternative Care for HIV/AIDS
15
2.6 Support systems 2.6.1 Social support networks of confidants to PHAs.

There is mounting evidence that social support is positively related to good health.
Furthermore, social support buffers the negative effects of stress and health problems (Cohen & Syme, 1985; Gottlieb, 1983), including AIDS. Social support has been found
to be associated with better health outcomes, better morale, and more successful
coping with the physical and emotional demands of a health crisis (Cohen & Syme,
198s).
Less is known about the effects of social support on the family members and friends of
the person who is ill. There is considerable stress associated with caring for a person
with a serious health problem. Research on caregivers has indicated that social support
can butfer the stresses of caring for the ill person. However, little is known about the
specific effects of AIDS on family members and close friends of the person with AIDS
(PWA).
Findings from this study have several implications for social work practice. First, there are genuine constraints in support available to the PWA's confidants. Confidants vividly described factors perpetuating inadequate support such as secrecy, stigma, burden, lack of reciprocity in relationships, increased responsibility, geographic relocation, and fear of rejection. Health care and social services professionals can play a critical role in
providing necessary support
to the confidant because they are viewed as
knowledgeable and emotionally accepting.
Social support can play
a central mediating role in preventing disease,
maintaining
health, and insulating people from stress (Gottlieb, 1983). Confidants who remain
unsupported during the illness process of the PWA may be placed at further risk for
psychological and physical complications. Factors constricting support may be sustained
Acceptance of People Living with HIV/AIDS in the Communiry
16
after the death of the PWA, thereby complicating the bereavement process and
adaptation to the loss.
A major focus of social work intervention with confidants should be bolstering supportive ties, especially for confidants who relocate to be closer to the PWA. Openly discussing
disclosure issues with the PWA and confidant together, role-playing how
individual could be told, and using community resources for networking
trusted
- all of these interventions help the confidant and PWA feel less restricted and better able to use others for support. Confidants and PWAs who have successfully disclosed and established supportive networks may be willing to discuss their experiences and
strategies with other confidants and PWAs individually or in a group setting.
Leading confidant support and bereavement groups can be another important role for
social wokers. Because patterns of disclosure may be established during the illness, a
supportive group setting may allow confidants
to express their apprehensions
more
openly and to normalize their feelings, especially the anger, resentment, and shame
related to stigma. This support can reduce the stress of secrecy, promote psychological
well being during the illness, and assist with adaptation during bereavement.
2.7 Nutrition
2.7.1 Nutrition and Food safety

The Task Force on Nutrition Support in AIDS (24), the Physicians Association for AIDS Care (25), and The American Dietetic Association's position paper (26) on the nutrition management of FABULAR DATA FOR I HIV disease have established that the course of HIV disease is complicated by symptoms such as anorexia, nausea, vomiting, diarrhea, malabsorption, and hypermetabolism. The multifactorial nature of HIV disease
produces a different combination of these symptoms in each person, which contribute to
weight loss and depletion
of body cell mass, multiple
micronutrient deficiencies,
premature morbidity, and morality. The Recommended Dietary Allowance (RDA) is the
17
accepted national standard for evaluating nutritional adequacy of diets for the healthy population, but not for evaluating diets of the chronically
il
(27). The energy, protein,
and micronutrient density of home-delivered meals for persons with HIV/AIDS should
strive to meet at least 100% of the RDAs, aside from the contribution of purchased food
and prescribed nutrition supplements. Specific guidelines for nutrient content of meals
served to homebound persons with HIV/AIDS need to be established.
The demand is increasing for home-delivered meal programs to provide culturally

familiar and therapeutically modified meals to homebound clients who adhere to special
diets after being discharged from the hospital. Homebound clients may
need
modifications in the consistency of their diets because of oral and esophageal lesions;
acid, fiber, and dairy modifications to minimize symptoms of malabsorption (23, 28); and
therapeutic modifications for medical problems aside from AIDS-related infections, such
as allergies, diabetes, acute and chronic renal failure, and liver disease. Depending on
the geographic location and ethnicity of clients serued, meal programs may need to
provide culturally appropriate meals to meet the ethnic food preferences of AfricanAmericans, Latinos, West Indians, Asians, Pacific lslanders, Africans, and Native
Americans. This is of particular importance for ethnic groups that have specific cultural
comfort foods (29).
The adherence to food safety guidelines in the preparation and delivery of meals to
homebound persons with HIV/AIDS is of utmost importance. Persons with HIV/AIDS are at greater risk for contracting food-borne infections from organisms such as Salmonella, Listeria monocytogenes, and Gampylobacter jejuni (30). People with CD4 cell counts below 150 cells per cubic millimeter are at greater risk for contracting protozoal infection
from Cryptosporidium paryum through unwashed food and unfiltered water (31). Meal
programs need strict food-handling procedures, particularly when training volunteers to
assist with meal preparation.
18
2.7.2 Meal delivery Volunteer network

Volunteers are
a vital asset to the success of home-delivered meal programs for
persons with HIV/AIDS. Some programs rely almost exclusively on volunteers to help
prepare and deliver meals to homebound clients in urban and rural areas, whereas
other programs use a combination of paid staff and volunteers. Some meals are
prepared by a hospital or caterer and delivered by volunteers. Meals are delivered daily
ready to eat or weekly as frozen meals for reheating. The majority
of
programs
described in the Table have centralized kitchens. Several programs have established
distribution networks throughout the communities served. Hot meals are packed in
thermalized tubs at the centralized kitchen and the tubs are delivered to distribution centers from which volunteers deliver meals to clients. Volunteers often travel in pairs when entering dangerous neighborhoods. Home-delivered meal programs must educate delivery volunteers about the vital impoftance of protecting client confidentiality when
delivering meals
to
residences. Many programs that are well-known
in urban areas
simply notify clients or care partners by saying they have a "food delivery" so that the
meal program's name is not verbalized. The use of volunteers from the communities
that are being serued has a threefold benefit: cost-effectiveness, efficiency, and
confidentiality.
2.8 Carc
2.8.1 Care as an Integral Part of the Response
Over the years, we have come to realize that care is as critical as prevention in dealing with this epidemic. The numbers of people requiring care have multiplied
rapidly over the years. People needing care must benefit from the latest
advances in knowledge in relation to treatment and have access to humane and quality care. This is essential from an ethical and humane perspective and also
from the perspective of effectiveness and being able to enhance prevention.
People living with HIV/AIDS have a right to care in an environment that is nonstigmatizing and non-discriminating. The message from community-based groups
Acceptance of People Living with HN/AIDS in the Comtnunity
'19
in developing and industrialized countries (Uganda and Thailand, two countries
where HIV incidence is declining) is clear: compassion in caring is good

prevention. Discrimination makes poor prevention,
The link between community action in prevention and care is critical: communities
cannot 'care'
for
individuals
in the truest sense while simultaneously

to
acknowledge the existence of
discriminating against them, refusing to associate with their families, sending their
children away from schools and refusing
HIV/AIDS in the community. An open acknowledgment of the presence of people
living with HIV/AIDS in the community fosters discussions on how HIV is

transmitted and how people living with HIV/AIDS are cared for. This openness
has a dual advantage. lt creates an enabling environment for affected community
members, and facilitates opportunities for prevention, as community members learn how to protect themselves from HIV/AIDS. The opportunities for prevention
are thus implicit in community involvement in care.
2.8.2 Symptomatic and Palliative Care

Health status improvement is not the sole prism for measuring progress in the area of
care. We need to be committed to relief from suffering, whether or not that relief
necessarily leads to an improvement in health status. Even the poorest countries can
afford symptomatic and palliative treatment. But how well are we doing in helping
communities and families to get rid of unnecessary suffering? First, we have to consider relief from suffering as a valuable goal in itself. People resort
to healing systems for more reasons than being cured of disease. They seek relief from
anxiety and suffering. Too often, we struggle to make the case for care on the basis of
health status improvements alone. Policy decisions should not be made on the basis of one single outcome, the prolongation of life and the reduction of morbidity.
Second, palliative/symptomatic care for HIV/AIDS needs to be included in the general standards for curative care, from the home all the way to the apex hospital. Many countries have developed handbooks for AIDS patient management, and trained health
,20
workers accordingly. However, during a majority of contacts between health statf and people with HlV, both are unaware of the patient's HIV status. lt is critical therefore to
train front-line wokers to ensure that in general curative consultations, their decisionmaking algorithms take HIV/AIDS related symptoms and signs into account.
2.8.3 Cost effectiveness of care

There have been many debates in the last few years on the cost-effectiveness of home
and community care as compared to care in formal health care settings. This debate
often takes a very limited view of the costs entailed. Whether home care is highly cost effective on its own, is the point. Home care should be pursued, not as a way to divert
the burden of AIDS on hospitals to the private sphere, but to provide the same kind of
care while ensuring that the person maintains a better societal interface. The benefits
accrued are wofth the extra cost. Care needs to be taken of course in how home care is
set up -- not as a vertical program from a hospital that provides 5 minutes per patient
care, and 2 hours in a jeep for the care provider to get there! Alternative models need to be examined for cost-effectiveness.
2.8.4 Community-based Care for HIV/AIDS Patients

Every year throughout the world, and particularly in Asia, an increasing number of
people are atfected by the HIV/AIDS pandemic, either directly or through someone they
care
for. In recent years there has been a dramatic
increase in the number of AIDS
cases in the countries of the Southeast Asia Region of WHO. With the increasing
number of HIV infections, there will inevitably be a further increase in the number of
AIDS cases. People with HIV infection can remain healthy for some years, but it is
assumed at present that all those infected with HIV will develop AIDS in due course. AIDS in a chronic condition lasting months or years, and a person with AIDS may move several times from home to hospital and back again. Much of the care of those with
AIDS therefore occurs at home.
Acceptance of People Living with HN/NDS in the Community
121
The spread of HIV over the past decade has resulted in over 400,000 people living
with HIV/AIDS in Thailand's upper northern region.

Caring for those afflicted is beyond the capability of the government. Hospitals do not have enough beds and most AIDS patients are discharged without adequate long-term
treatment. Many people living with AIDS are poor and abandoned and receive no
treatment at all. Many come from broken homes. Many are homeless and without food
or shelter. They are often more helpless than abandoned children, since most people are scared to come close to provide assistance. Family members and fellow workers
fear living or working close to HIV/AIDS. They force people living with HIV/AIDS to leave the home or the work place. In some cases, families desert their relatives with AIDS and
hope that they will not come back. Appalling neglect and mistreatment are
commonplace.
Although more than half of the people living with AIDS still lives with their families, most
do not receive proper care and treatment. Patients are often left to sleep alone in closed-in storage rooms or huts, even when they are too sick to look after themselves. Those that live
in one-room houses place family
members
at risk of
catching
opportunistic diseases such as tuberculosis. Care at home provided by family, friends or neighbors is not without problems. Very few
of the people giving this care have ever had any training in looking after sick people.
Many of them will be concerned about their lack of knowledge and skills. They may also be concerned about getting infected themselves. Therefore the aim of this handbook is
to equip care providers with the information and skills they need to help families gain
confidence about their own ability to provide safe, compassionate and helpful care to
people with HIV infection or AIDS in their homes.
The readiness of families and communities to provide care for persons with HIV
infection or AIDS at home is important. In the early stages of the epidemic (when few
people are visibly sick) there is often a high level of stigma, fear and lack of acceptance
22
of people with AIDS. People are frightened or ashamed to admit that they have a
person with HIV infection or AIDS in their home, This can make it difficult for providers of care to involve families in learning about or providing care at home.
Community and home-based care programs are being increasingly considered for
systematic expansion, as extensions of existing health system. Community-based care,
which provides psychological, social, medical and nursing support
to HIV infected
people and their families, is seen by many countries as the only realistic approach to cope with the crisis. Care for chronic conditions is given by families and members of
society in the home and at the community level through hospice and other shelter
settings, while health settings support community-based care by providing diagnosis,
clinical management, and treatment of acute conditions. Thus, referral networks between communities, and health settings are key elements of the continuum of care,
which include homes, communities, and health settings at various levels.
Community-based care can further be defined as the interaction of support mechanisms
of communities and governmental and non-governmental organizations to meet the physical, emotional, social and spiritual needs of persons who are sick. Communitybased care by providing diagnosis, clinical management, and treatment of acute
conditions. Thus, referral networks between communities, and health settings are key elements of the continuum of care, which include homes, communities, and health
settings at various levels.
Community-based care should build on or make use of the strengths of communities
and families and should take into account social and cultural norms and traditions. lt should also be recognized that community-based approaches cannot be imposed on
people unless they have been prepared through educational and awareness programs. However, community tolerance and family acceptance cannot be encouraged unless
and until health care professionals themselves show acceptance and tolerance toward HIV/AIDS affected
people. lmportant considerations in developing such
programs
23
include selection
of services, monitoring of quality control and patient satisfaction,
availability of statf and financial resources, and effects on other health programs.
There is, so far, no standard model of community or home based care. However, basic home care is to provide medical care, psychological and social support to people with HIV/AIDS and their family or caregivers though home visits (Cameron C. et al., 1992).
Home care has played the significant role of providing care for those terminally ill patients. Not only because care at home is so often preferred by patients, but also
because the services has so much potential for flexibility (Wyatt. 1990). Home and community-based care can improve the quality of life significantly and can give people with HIV/AIDS the greatest use of their remaining time (Ungvarski P.J., 1988).
2.8.5 Home based Care

Home care reties on two strengths that exist in everywhere in the world, the family and
the community. lt is with the hope of stimulating and utilizing on the strengths of the
family and the community home based care to be done (Sandra Anderson, 1994). Care at home can be provided by family, friend or neighbor without the problems in the family and the community. Most of the members of the family who give this care should have a knowledge or experience or ever had any training in looking after sick people. They are giving care to another simply because of their concern and love. And again
many of them are still be concerned about their lack of knowledge and skills. They may also be concerned catching AIDS themselves (WHO, 1993).
AIDS is a chronic disease lasting months or years. When care is taken of health care facilities and moved into the community, then more dynamics are added the picture.
PHAs and their families are suffering from strong stigma frequently found
communities and health care facilities.
in
Acceptance of People Living with HN/AIDS in the Communiry
24
The most important element in home-based care is the readiness of families and communities to provide care for PHAs. In early stages of the epidemic (when few
people are noticeably sick) there is often
a high level of stigma, fear and lack of
acceptance of PHAs. People are frightened or ashamed to admit to others that have a
person with AIDS in their homes. This can make it difficult for health workers to involve
families in learning about providing care at home (WHO, 1994). As more people are personally affected, the tendency for hiding or denying the disease
decreases. As people's knowledge and understanding of HIV increases, their attitude

towards caring for person with AIDS is likely to become more positive. Home-based Care is often the best way to look after someone with AIDS (AHO, 1994). There are
many reasons to establish home-based care for PHAs.
- Good basic care maximizing nurturing and flexibility can be given successfully
at home, as it enables the ill person to be as active and productive as the disease
allows.
People who are very sick or dying would often rather stay at home especially Being in their homes and communities comforts sick people by having family
Relatives should be able to carry out their other duties more easily when caring
when they know they cannot be cured in the hospital.
and friends around.
for the sick person who is at home.
Home care means that hospitals will be less crowded, so that doctors, nurses
and other hospital staff can give better care to those who really need to be
admitted.
- Home care is usually less expensive for families, and sometimes hospital care
is not possible.
- Home care provides educational opportunities for personal

AIDS prevention, both in families and in communities.
message about
25
Basic Concepts of Home-based Care
1. 2. 3.
Home care is the most important kind of care, which helps provide stability for
people and their
families. lt can become the catalyst for changes in

of care and is an important
attitude/belief/behavior within the family and the community.
Home-based care is the most appropriate tyoe
resource, which can be expanded into a community resource for HIV/AIDS prevention. Home-based care is worth investing in since it will prevent family breakdown.
Home-based care
is by no means a panacea. Home-based care has often been
advocated as a means for decongesting hospitals overburdened by H|V-related disease.
The main issue however, is not the cost to the hospital, it is the cost to patients and their
families. Quoting Susan Foster in her study of the cost and burden of AIDS on the Zambian health care system: lt is not possible to say whether home- based care
imposes a greater or lesser burden of care than does having the patient cared for in the
hospital. As the burden of care seems to fall primarily on women, the home-based care
option may impose unacceptable burdens on the same women who are primarily
responsible for food production. On the other hand,
if women have to spend
time
traveling to visit and bring food to sick relatives in hospitals, they may end up spending
more time on caring than if the relatives had been at home.
However, while the costs involved in hospital-initiated home care may be considerable,
community-initiated home care may

connected to churches provide
be much cheaper. ln Zambia, lay persons care to chronically ill people at a very low cost. lt is
important to look into these spontaneous, grassroots-initiated care initiatives which build on localcapacities and resources.
2.8.6 Day Care

Another type
of home and community-based care is found in situations where
chronically ill people can use day institutions but stay with their families at night. ln fact, if criteria such as patient comfoft are used to determine the site for patient care, and if the costs consider those incurred by the household, then it is quite plausible that some
26
forms of institutional care away from homes -- including nursing care, day care and
psycho-social suppoft -: maV well prove to be more cost-effective than home-based care
alone. In Northern Thailand, in addition to home care, districts have organized day'care centers, where people with HIV and AIDS get their medicines, and provide support to
each other. However, patients may prefer to be at home with their loved ones, and family members who provide care. Care-takers may prefer to have the means to care for
their loved ones at home rather than having to travel to visit them every day.
lt is
important that decisions about where care takes place are made in consultation with the
people who are the main caretakers. This is particularly important because the current
methodology for assessing cost-effectiveness of various types of care does not allow for
a full assessment of individual, household and institutional costs. This means simply that women and other care-givers must be asked which option -- institution or home 'they prefer and what resources they need to make their choice work for those needing
care and for their families.
2.8.7 Hospice care

Hospice care in the United States has emerged as a model for home care for terminally ill individuals. A prevalent misconception is that a hospice is a place to institutionalize a
dying person. Although all certified hospice programs are required to have in-patient
beds available, their use is usually limited to short periods for respite care and symptom control.
The major appeal of hospice care includes the concept of interdisciplinary and holistic care as an ideal health care model. Hospice care emphasizes the quality of life for
terminally
ill individuals
through symptom control (palliative care) and expert
psychological and spiritual care (Ungvarski P.J., 1995). Quality of life issues need to be
considered carefully and should be highly prioritized for those terminally ill and dying patients. Although most health care professionals have formally studied the phenomina
of death and dying, few have worked together with hospice experts. Today the needs of
the HIV/AIDS patients can be more appropriately described as a continuum of care for
chronic illness,
27
Hospice care focuses on the quality rather than the quantity of
life.
Therefore, the
foundation of hospice care is symptom control, that is, taking control of a particular
symptom and preventing its recurrence, rather than allowing the symptom to control the
individual's life and detract from it (Fadden M., 1988).
There are at least 300,000 monks and 30,000 temples in Thailand, but only a few are
extending their helping hands to the growing number of people with AIDS. A meditation
master in Chiang Mai has responded to the AIDS crisis by turning his retreat into a
hospice. Under the shade of trees and bamboo, next to a quiet pond filled with water
lilies, Thongchai sits in a wheelchair; his eyes fixed on the stillness of the water.
"l never thought I would be infected with HIV because I always used condoms
when I bought sex," says Thongchai, who now has full-blown AIDS. As a result of
an A|DS-related illness, his skin is discolored and swollen, and he can barely
walk.
"lf I could turn back time, I would never be promiscuous. Death is inevitable for
everyone, but to die of AIDS is tormenting," he said.
Thongchai,
a 37-year-old former construction worker, found out he was
H|V-positive
three years ago. He quit his job when he became too sick to continue working, and his wife supported him and their two children by working as a laborer. He now lives at the Baan Puen Cheewit Temple Hospice in Chiang Mai Province.
"l came to live at the temple so my family didn't have to worry about me. I don't
want to be a burden on them", he said.
Thongchai is one of 12 AIDS patients living at the temple hospice in Wat Mai Huay Sai
in Muang District. Meditation master Phra Phongthep Dhammagaruko founded it

1993.
in
The temple, located on a green and peaceful two-rai plot of land, used to be a meditation center. But when a steady stream of AIDS patients started coming to seek
help, the monk could not turn them away. "l thought my seruice would help bridge a gap
Acceptance of Peopl.e Living with HIV/AIDS in the Community
28
between me and the community so I could teach them dharma more effectively,"
said.
h@
Dharma lessons
Since AIDS is a major social concern, Phra Phongthep says it serves as a good channel
to teach Buddha's way of dealing with suffering. As a former NGO employee, the 43year-old monk found it easy to include social work in his religious life. He began by teaching dharma to people in the early stages of AIDS to help calm their minds so they could live and work effectively. But when he went into the villages and discovered that their families and communities abandoned many AIDS patients in the advanced stages,
he knew where he was needed most.
"l once saw a mother sitting on the opposite side of the room from her son who had AIDS, too scared to go near him. I thought, these abandoned people need
urgent help."
Phra Pongthep began caring for a few chronically ill AIDS patients four years ago.
Unfortunately, the number of patients seeking help keeps increasing. He named the hospice, Baan Puen Cheewit, meaning a home of friends for life. The hospice provides
patients with basic necessities as well as a spiritual retreat free of charge.
Baan Puen Cheewit can accommodate twelve patients, and all beds are usually full.
Sadly, when one patient dies, there is no shortage of people waiting to fill the vacant
bed.
"Many people with AIDS don't want to stay in their community because they don't want anybody to know. So they come to us."
Appalling neglect and mistreatment by their own families pushes some to seek refuge in the hospice said Phra Pongthep. "sometimes the families just leave a person with AIDS
at the hospital, on the street, or some place they are not familiar with, so they cannot
find their way home." The hospice spends around 25,000 baht a month on food,
medicine, and medical supplies for the 12 live-in patients. Outpatients, who stay with
Acceptance of People Living with
HMNDS in the Community
29
their families and come to the hospice for treatment, are trained in self'care, and family
members are taught how to care for the person at home.
Unlike most hospital patients, the patients at Baan Puen Cheewit help out with daily
chores like cleaning, food preparation, growing vegetables and herbs, and taking care of
bedridden patients. For spiritual healing, they pray and meditate every day. As part of Phra Phongthep's goal to educate the public by making people with AIDS more visible,
Baan Puen Cheewit patients sometimes take part in community activities such as collecting garbage or sports competitions with the villagers. As for medical treatment,
the monk first experimented with herbal medication, but he found that it was not enough.
Modern medication and hospital treatment were needed, he said. But unfortunately, the patients are more often than not neglected when sent to the local hospital.
"lnitially, I didn't know anything about AIDS, how to treat their symptoms, or save
their lives. Whenever an emergency arose,' I always sent my patients to the hospital," he said. "But when I saw the patients were turned away, I resolved to
know more about this disease so that I could take care of the patients myself and rely less on the hospital."
Phra Phongthep said he has educated himself about AIDS treatments through private study and talking with doctors. After four years of caring for AIDS patients, he says he
can now give a basic diagnosis and prescribe medicine for minor ailmehts. For more
serious illnesses, he takes patients to the hospital. The temple hospice now has its own pathology lab to test the patients' blood, saliva and skin. The monk and the volunteer from the community who work in the lab were both properly trained. Their lab tests are
used as an early warning to ensure patients receive timely treatment for any illnesses. Instead of enlarging the hospice to cater for the growing number of people with AIDS in
the Chiang Mai area needing treatment, Phra Pongthep plans to reduce the number of
beds from 12 to 8 to improve the quality of care.
"l don't think
increasing the number
of beds is the way for us to tackle
the
problem. We will never be able to catch up with this disease."
30
FAMILY CARE Phra Phongthep estimates that there are now almost 100,000 people with AIDS around Chiang Mai. He sees family care as the best solution for caring for them.
"l tellthe relatives of the patients that if they abandon them, they will also soon be
abandoned according to the law of karma." Fear, he says, comes from facing the unknown. According to Buddhist teachings, fear
will disappear with knowledge. For this reason, he asks the families to stay at the
hospice so they can learn how to live with and care for their family member with AIDS. Some families stay at the hospice willingly; others have to be forced "for their own
good," says Phra Phongthep.

knowledge is important."
"l
make them come all the same because
At Baan Puen Cheewit, the patient and his family share the same living quarters, doing things together as if they were at home. Family members with jobs work during the day
and retum to the hospice in the evening, When the patients are well enough, and when
their families know how to care for them, they return to their communitles.
"lt's not only the family who has to learn to be understanding toward the patient.
The patient also has to be understanding toward their family," says Phra Pongthep. "For example, when family members use latex gloves or separate
household utensils, they should not feel touchy about it. Fear and self-protection are natural. And the patients have to learn to share the burden of the family, like
helping with the chores while their wives go out to work," he says.
Most patients in his family care project go home with a more positive mental attitude
than they arrived with.
"l think what the AIDS patients need most is love, sympathy and understanding
from their families. I want the temple hospice to serve as a temporary shelter, for
it is family care which is a key long-term solution to the burgeoning AIDS problem
in Thailand."
Acceptance of People Living with HN/AIDS in the Commrmity
31
2.9 Prcvention
2,9.1 Prevention Activities in Thailand
In 1989, the Royal Thai Govemment called for
government, non-govemment
organizations (NGOs) and private sector agencies to collaborate in programs for the
prevention and control of HIV infection. Many educational programs were introduced to
the main target groups: women, commercial sex workers, youth, and
implement the 100 Percent Condom program
institutional
leaders. In August 1991, the National AIDS Committee approved a govemment plan to
in all of the provinces.
Government
funding has expanded to ensure an adequate supply of free condoms throughout the year to all targeted populations. In addition, condom logistics and distribution systems
have been strengthened, as well as facilities for condom quality assurance testing.
2.9 .2
Evaluating community-based AIDS prevention projects

" Measuring changes in risk behavior and
health
In an article for the American Public Health Association of Nicholas Freudenberg and
Marc Zimmerman it was stated that
status are beyond the capacity of most community organizations".
Community organizations can play an important role in AIDS prevention. Yet
it
is
precisely these organizations that have the greatest difficulty in evaluating their program.
They often lack expertise in evaluation and are suspicious of diverting any resources from service delivery. Their programs do not always have clearly defined goals and
objectives, and their record keeping system may be deficient. As a result they are left
groping for a way to assess the impact of their interventions.
32
2.10 Knowledge 2.10.1 Knowledge and behavior about HIV/AIDS.

Knowledge about HIV/AIDS has been seen to play a role in motivating initial behavioral
change, particularly in persons who see themselves as being at relatively low risk and
who are initially less informed about the disease and the routes of HIV transmission.
Dr Peter Piot,Executive Director of UNAIDS, says: "Globally, there has been some increase in political commitment and in programs
responding to the rights of people to be educated about their health, but much more
needs to be done especially in the area of sexual health. And as this review shows, the
quality of these programs is all important in developing healthy behavior in order to

reduce the transmission of HIV and other STDs.
"The most important conclusion is that failing to provide appropriate and timely
infonnation to young people for fear of encouraging sexual activity is not now a viable option."
A review commissioned by the Joint United Nations Program on HIV/AIDS (UNAIDS)

revealed evidence indicating that sexual health education for children and young people promotes safer sexual practices and does not increase their sexual activity. Even if they do not participate in any risky behavior themselves, some people may be at
risk for acquiring AIDS as a result of their partner's behavior. Therefore, prevention of HIV in these individuals, as well as in their children, would include the knowledge of the
risks of their sexual partners.
Knowledge alone, however, does not ensure long-term behavioral change. Perception
of risk seems to be more important than objective knowledge in motlvating behavioral
33
change. lt has been noted that individuals tend to underestimate their own vulnerability,
operating under
"optimistic bias" regarding their health (R.D. Muma, et al).
Research shows that people do not change their deeply entrenched behavior, such as sexual practices, simply on the basis of intellectual awareness that the behavior may be dangerous to them. A study of gay men in Los Angeles, USA, showed that those who
were continuing to engage in unsafe sexual practice had exactly the same level of
knowledge about HIV and safer sex as those who had adopted and maintained safer
practices. The differences between the two groups were those with identity in the gay
community. This reinforces the point that behavior change among gay men in the
developed countries has been brought about by community-based campaigns which
promoted safer sex practices as a community standard of behavior.
The etfects of the pandemic are of great concem. The quality of life for an increasing
number of H|V-infected people and their relatives, and quality of care for patients with AIDS and their relatives, is at stake. HIV/AIDS patients face possible discrimination in
the enjoyment of their rights and/or a stigma on account of the HIV status or suspicion
of HIV status. Forms of

relatives
discrimination towards H|V-infected persons and/or their
are: discriminatory legislation, discriminatory practices by public authorities/private organizations and discrimination by communities, families and
individuals.
2.1I Risk perception

A lack of risk
perception, which allows risk behaviors,
is attributable to
inadequate
interpretation of knowledge on HIV/AIDS and its prevention. A nation-wide survey found
that almost all respondents had heard or known about AIDS but only one-third of them
had correct knowledge on its communicability and treatment (Thongthai
and
Pitakmahaket 1994). The Thai government also recently declared that one-third of the population is still ignorant about the spread of HIV/AIDS and approximately 20 million population believe that AIDS is curable and they are unlikely infected (Bhatiasevi (b)
Acceptance of People Living with
HMNDS in the Community
34
1996). Among Thai adolescents, one-third to two-thirds of them have misunderstood

preventive methods for STDs while they are rather aware of HIV prevention (Podhisita
and Pattaravanich 1995). Another study also shows that adolescents misunderstand how STDs are transmitted and.most of the participants in the focal group discussion
identified HIV as the only STD (Fongkaew 1997). On the contrary,
students and
91 .60/"
a recent study
focusing on female students and factory wokers in Bangkok suggested that 100% of
ol workers believed that those who have multiple sexual partners will contract AIDS infection. Hence, vulnerability of AIDS risk is perceived by almost
one-third of them (Soonthorndhada 1996).
Risk behaviors among adolescents is, however, caused not only by low risk-awareness
of HIV/AIDS but also by premarital sex which is recently becoming a common practice among females. Usually, male adolescents initiate their sexual activity earlier than
females. A relevant suruey showed that
61.30lo
of males
experienced their first
intercourse by the age of 18, whereas only 18.7% for females and mostly after marriage
(Sittitrai et al. 1992). Notwithstanding, another study suggests that pre-marital sex among females is becoming more common: more than 90% of males and 30% of
femafes (47.0% in urban and 17.2% in rural areas) had first intercourse before marriage.
This is caused by a recent behavioral change that a relatively large number of males
have their lover or fianc6e as a first partner, partly due to being aware of the risk of
having sex with CSWs (Podhisita and Pattaravanich 1995) but they tend to refrain from using condoms with their lovers (Bhatiasevi (a) 1996).
The probability of HIV infection is largely dependent on condom use because a condom
is the only means of preventing sexual HIV transmission (Elder et al. 1994). This is the
significance of the condom and the reason why condom use is promoted. In fact, the
relevant study shows that the rate of new HIV infections has declined among young men
who repofted sexual relations with CSWs due to substantial changes in sexual behavior, especially an increased use of condoms during high-risk sexual activities (Nelson et al. 1996). Yet, this trend is only among CSWs and their customers, and condom use among lovers and couples is still hardly accepted and practically unpopular in Thailand.
35
The condom is perceived to be used with CSWs in order to prevent STDs/H|V infections
and its use may thus cause distrust between lovers (Bhatiasevi (a) 1996). Therefore,
such social barriers based on gender power also contribute to increase the risk of an
HIV infection in adolescent sexual relationships.
2.12.1 Behavioral changes

Sexual behavior is often impulsive and at least in part, psychologically motivated. For example, gender roles and cultural values and norms influence the behavior of women
and men and the nature of relationships in which sexual activity
occurs,
Models
designed to explain or predict risk behavior tend to focus on the individual level without
regard for other levels such as the culture and community to which the individual
belongs (AIDS and sexual behavior). Changing behavior is difficult, and it requires more
than knowledge alone. lf knowledge of risk alone changed behavior, there would be no smokers, no failure to use seat belts, and no people driving and drinking. Behavioral
scientists view behavior change
as a five step process. The first step is
pre-
contemplation. This means that the person does not consider a particular behavior (e.9. unprotected sexual intercourse) to have a personal risk or does not consider another
behavior (e.9. condom use) to be safer. The next step is contemplation. In that stage a
person is aware that a behavior has a risk or that another behavior has less risk but is
not yet ready to change. This is equivalent to knowledge without a determination or

plan to change. Preparation is the stage in which a person indicates that he or she is
ready to change but has not yet started. Change finally begins at the action stage. At
this stage, however, the person has not yet incorporated the changed behavior into a
permanent change. Finally, maintenance is the stage where the person will continue
the new behavior under all circumstances. People move through these stages at
different speeds. lt is important to understand that behavior change is a staged process
and to recognize the stage of
a particular individual. Counseling, as opposed to
education, must be tailored to the person's stage of behavior to best help him or her to
move to a later stage and eventually to maintenance.
36
2.12.2 Behavioral Change Supportive Environments

By encouraging changes in cultural attitudes, social norms, and government and
institutional policies, behavior change communication (BCC) campaigns can help create
an environment that supports individual HIV risk reduction. Therefore, many BCC interventions are aimed at policy makers, religious leaders and influential community
members. Although conventional wisdom reminds us that information is not enough to
help people change behavior, in the policy arena, carefully presented information can be
the key to changing the thinking and actions of decision-makers. Workplace managers
may need to know about the projected financial costs of HIV/AIDS among workers to be
convinced
to support workplace prevention programs. Politicians may need to hear
about the long-term etfects of a duty tax on imported condoms before they are willing to
devote resources to AIDS prevention. And teachers and parents many need facts about
teenage sexuality to help them see the need for HIV/AIDS prevention programs in
schools. Again, it is the combination of art and science that makes for an effective BCC
campaign targeted at specific decision-makers with particular attitudes and distinctive

information needs. Strategic presentation of this information may be as important as the information itself. Skillful communication is an important part of the policy process.
2.I3 Social norms and values

2.13.1 Human rights
Tragically, abuses of human rights suffered in the context of the HIV/AIDS epidemic continue. These include discrimination, which not only compounds the human misery of
this virus, but also fuels its spread to others.
In the last 15 years, we have learned that the protection of human rights is essential to
stop the spread of HIV/AIDS. Key rights are the rights to information, education, health,
37
and non-discrimination. These rights have always been imperfectly realized with tragic
consequences. Now, with the presence of HlV, failure to protect them becomes even
more life threatening. Only through the protection of these rights will people have access
to information and education about HIV; to the means of prevention, such as condoms and health services; and to an environment suppoftive of behavior change. To the
degree that governments, as well as social and religious mores, limit access to these,
then vulnerability to infection is increased, and the right to life put in jeopardy.
This is true for all people, but especially for vulnerable and marginalized groups who are bearing the brunt of this epidemic. Such groups include women, children, minorities, indigenous peoples, refugees, homosexuals, commercial sex wokers, drug-users and
prisoners. The discrimination they already face in access to education, health care and
social support renders them particularly vulnerable to HIV/AIDS. Beyond access to HIV
of protection, the protection of human rights is essential to enable people already infected by HIV and their families to cope with the impact of HIV/AIDS. But widespread discrimination due to HIV status makes it impossible for
information and means
those affected to provide for themselves and to contribute to their communities. Such
discrimination denies those living with HIV not only their dignity but also their rights to
employment, education, privacy, housing, social support, health care, an adequate

standard of living, and in some cases, their liberty.
HIV/AIDS continues to spread throughout the world at an alarming rate. Close in the
wake of the epidemic is the widespread abuse of human rights dnd fundamental
freedoms associated with HIV/AIDS in all parts of the world. In response to this situation
the experts at the Second International Consultation on HIV/AIDS and Human Rights
concluded the following:
a) The protection of human rights is essential to safeguard human dignity in the context of HIV/AIDS and to ensure an effective, rights-based response to
HIV/AIDS. An effective response requires the implementation of all human rights,
civil and political, economic, social and cultural, and fundamental freedoms of all
people, in accordance with existing international human rights standards;
38
b) Public health interests do not conflict with human rights. On
the contrary, it has
been recognized that when human rights are protected, less people become
infected and those living with HIV/AIDS and their families can better cope with
HIV/AIDS;
c)
A rights-based, effective response to the HIV/AIDS epidemic involves

establishingappropriate governmental institutional responsibilities, implementing
law reform and support services and promoting a supportive environment for
groups vulnerable to HIV/AIDS and forthose living with HIV/AIDS;
d)
In the context of HIV/AIDS, international human rights norms and pragmatic

public health goals require States to consider measures that may be considered
controversial, particularly regarding the status
of women and children,
sex
workers, iniecting drug users and men having sex with men. lt is, however, the
responsibility of all States to identify how they can best meet their human rights
obligations and protect public health within their specific political, cultural and
religious conte)ils.
e) Although States
have primary responsibility for implementing strategies that
protect human rights and public health, United Nations bodies, agencies and programs, regional intergovernmental bodies and non-governmental organizations, including networks of people living with HIV/AIDS, play critical roles in this regard.
2.I3.2 Discrimination
Of course, not all suffering is physical in origin. Suffering has psychosocial roots as well.
Discrimination towards people with HIV and AIDS compounds that suffering. How well
are we doing in eliminating the psychosocial suffering stemming from discrimination?

Certainly, there are some bright spots, but those spots seem to be the exception, rather than the rule.
39
Discrimination
is a major source of preventable suffering. A human rights
strategy
therefore needs to be an integral part of care strategies to reduce the suffering related
to HIV/AIDS. We need to progress towards inclusion and to map ways in which we can
arrive at such inclusion.
In a paper of AIDS stigma and contact with persons with AIDS: effects of direct and
vicarious contact, Gregory M. Herek and John P. Capitanio found that: direct contact with a PHA was associated with less support for coercive AIDS policies, less blame for
PHAs, and less avoidance of PHAs. Vicarious contact
operationalized as the self-
reported impact of Earvin "Magic" Johnson's disclosure of his HIV infection - appeared
to have its greatest impact among respondents who previously had manifested
respondents reported having been strongly influenced by Johnson's announcement
high
levels of stigma. In that group, levels of stigma diminished somewhat to the extent that (Joumal of Applied Social Psychology, Jan 1, 1997 v27 n1 p1 [36])
2.I3.3 Access of the immediate family to results of HIV testing

People living with HIV/AIDS (PHA) regard access of the immediate family subsystem, to
results of HIV testing information, as the most desirable. Actual disclosure practices
reveal that concerns about the disclosee's reactions create informational boundaries.
The extended family gets second preference after the immediate family from all respondents. But the PHAs are hesitant about the disclosure of information to the
marital subsystem and to non-family members such as teachers and employers. Further
research based on coherent theoretical perspectives is required. Journal of Applied Communication Research,Feb 1996 v24 n1 p50 (16)
40'
Bibtiography
1. AIDS Care volunteer network building. lnstitute for Population and Research, 1997.
2. AIDS Watch, 1996. News from WHO Southeast Asia Region on STDs and AIDS,
Vol. 1 Number 1, October 1996.
3. Anderson S; Kaleeba N., 1994. The challenge of AIDS home care. WORLD
HEALTH. 1 994 Jul-Aug; 47 (4): 20-2
4. Ankrah EM., 1991. AIDS and the social side of health. Social science and medicine. V.H. \Mnston & Son Inc. 1991; 32 (9) : 967-80
Bussaba Rujjanavet, Doungsamorn Chinchotikasem, 1995. NGO Activities in Thailand, Asean lnstitute for Health Development. Delaney MG; Forrest K; Mellors S, 1995. GNP and ICW annual meetings, AIDSLINK Mar-Apr; (32): 1,3 1995.
5. 6.
7.
Freudenberg N. and Zimmerman M., 1996. AIDS Prevention in the community. Lessons from the first decade. American Public Health Association.
L Gumaru O., Mahidol University, 1996. Knowledge and attitude in accepting home
based care in Nakhon Ratchsisma, Thailand. Herek G.M. and Capitanio John P., 1997. AIDS stigma and contact with persons with AIDS: effects of direct and vicarious contact. Journal of Applied Social sychology, Jan 1, 1997 v27 n1 p1(36)
9.
10. lchikawa M., Mahidol University 1997. Gender differences in HIV related sexual beliefs and safer sex intentions among vocational students in the Bangkok Metropolitan area, Thailand.
1996. Social support people with AIDS. NationalAssociation of SocialWorkers networks of confidants to lnc. 1996.
1
1. Jankowski S.; Videka-sherman L. ; Laquidara-Dickinson K.,
12. KAS Newsletter. 1995 Nov-Dec;

13.
4. Advocacy update. Past present, future
KohiTW; Horrocks JM, 1994. The knowledge, attitudes and perceived support of Tanzanian nurses when caring for patients with AIDS. Internationaljournal of nursing studies. 1994 Feb; 31(1): 77-86.
41
14. Kraak Vivica lngrid. 1995. Home-delivered meal programs for homebound people with HIV/AIDS. Journal of the American Dietetic Association, April 1995 v95 n4 p476 (6). 15. Masaki E., Mahidol University, 1997. Cost analysis of Hospice Care for HIV/AIDS patients in Thailand. A community based model of HIV/AIDS care. 16. Mwangalawa AS, 1995. Community participation in AIDS activities in two pilot areas, Machinga district, Malawi. Network of AIDS researchers of Eastern and Southern Africa (NARESA) Newsletter. 1995 Sep;(17):2-4. 17. Muma R.D. (1994). Manual for Health Care Professionals. page 246-247,696. 18. Phra Phongthep Dhammagaruko, 1996. Friends for Life Home
19. Pizzi M,; Johnson J., 1995. Productive living strategies for people with AIDS, Harrington Park Press
20. The World Bank group, 1997. HIV/AIDS lN ASIA: without further action, a looming public health crisis, AidsAsia, 1997 21. Thongthai and Pitakmahaket 1997
22. UNAIDS Review, 1997. Sexual health education does lead to safer sexual behavior- October 1997. 23. UNAIDS, 1997. Report on the Global HIV/AIDS epidemic estimates as of December 1997 24. UNAIDS, 1997. Ethical principles as guidance to the international and national, community and individual in response to HIV/AIDS 25. UNAIDS, 1997. New UN World AIDS Day report. 26 November 1997.
26. World Health Organization, Regional Office for Southeast Asia, New Delhi, lndia, 1996. Handbook on AIDS Home Care.
Chapter 3 Results of the Gross-sectional Community Study Regarding Situation of Acceptance and Non-discrimination towards PHAs in Northern Thailand
1. Background and Rationale
Since the epidemic of AIDS in the late 1980's many patients have gradually returned back from their workplaces in urban areas to their hometown in rural areas. The northern part of Thailand is an area in which many AIDS patients have returned and therefore became a focal point for community-based care activities for AIDS. Many government and nongovemment organizations that have been working to promote acceptance and non-discrimination towards PHAs in these communities. Therefore, there is a need to survey the situation and problems regarding the acceptance of PHAs in these communities. The results of the survey, together with the results of literature surveys and the expert review workshop will provide valuable comments and recommendations for strategies to promote acceptance and non-discriminatory living PHAs living in the community.
2. Research Methodology The research is a cross-sectional community survey using three sets of questionnaires. The data was collected through structured questionnaires and interviews with villagers by trained interuiewers. The researchers carefully selected four districts which have high epidemic rates of AIDS and were convenient for data collection, lrom 24 districts in Chiang Mai province. From each district, one subdistrict and one village was selected by random sampling method. From each village, 50 households were selected by purpolsive random sampling (to select one household then skip the next three households). If it happened that no one was at the selected household, the next household would be selected as alternative. 3. Research Areas Based on the above-mentioned methodology, the following research areas were selected : 1. Doisaket District, Taladyai Subdistrict, Maechong Village. 2. Maerim District, Muangkaew Subdistrict, Wangpong Village 3. Sunkamparug District, Huaisai Subdistrict, Lantong Village 4. Sunpatong District, Tungstoke Subdistrict, Huarin Village 4. Duration of the research period Preparation of questionnaires from October-November 1 996 Preparation research areas, field supervisors and training of interviewers during December 1996 Data collection from 6-10 January 1997 Data analysis from 10-30 January 1997
of
43
5. Data Collection Tools and Methodology Eight interviewers with two field supervisors were trained to use the three sets of structured questionnaires to collect data. Questionnaire No.l was used for interviewing villagers who were neither PHA nor PHA family members. The questionnaire consists of three sets of questions" The first one identifies the socio -economic profile of the respondent, the second one investigates the acceptance of PHAs and the third one describes the care for PHAs in the community. Questionnaire No.2 was used for interviewing PHA family members (parents, spouses, children or immediate family members of PHAs ). These questions are similar to those in Questionnaire No. 1 Questionnaire No.3 was used for interviewing PHAs themselves . lt consists of two sets of questions which ask general information of PHAs and explore the acceptance, care and support for PHAs in the community. After surveying the households,the fleld supervisors collected individual data and summarized the village data (village profile), All household survey data were analysed by computer program using SPSS
Windows.
6. Results of the Data Collection In total, 205 sets of questionnaires were collected from villages. (Table l)
the four
6.1 Results of the data collection in Maechong Village ( Doisaket District, Taladyai Subdistrict). Maechong Village has 205 households with a population 980, (males 455, females 525). There were no full-blown AIDS cases, with one symptomatic AIDS case and two HIV+ cases. The researchers interviewed 48 people in the village. (39 villagers, 8 PHA family members and 1 HIV+ person), The Church of Christ in Thailand has been supporting AIDS projects in the village. The Folk Doctor Association is also trying to set up their AIDS activities at a temple in the village as well.
6.2 Results of the data collection in Wangpong Village (Maerim District, Muangkaew Subdistrict). Wangpong Village has 147 households with a population of 526 ( 258 males and 268 females ). There were two fullblown AIDS cases (1 female had died and 1 male was still living) with no identified symptomatic AIDS cases and 1 HIV+ person. The researchers interviewed (37 people in the village 37 villagers and 6 PHA's family members). There are no religions organizations or traditional folk doctors
giving support to PHAs.
(Sunkampaeng District, Huaisai Subdistrict). Lantong Village has 402 households with a population of 1,191 (599 males and 592 females). There
were no full-blown AIDS cases, two symptomatic AIDS cases and 6-10 HIV+
6.3 Results
of the data collection in
Lantong Village
44
persons. The interviewers have interviewed 56 people in the village

villagers and 11 PHA family members).
(45
Due to the PHAs individual reasons, the researchers could not interview any PHA. There are no religious organizations or traditional folk doctors supporting PHAs. However, there are 5 AIHD volunteers working for
AIDS activities in the village.
6.4 Results of the data collection in Huarin Village (Suupatong District, Tungstoke Subdistrict). Huarin Village has 510 households with a population of 1,525 (males 761, females 764). There was one full-blown AIDS case, with one symptomatic AIDS case and 10-15 HIV+ persons. The researchers have interviewed 58 people (39 villagers, 12 PHA family members and seven HIV+ persons). There are no religions organizations or traditional folk doctors giving support to PHAs. 6.5 General Socio-Economic Profiles of the Villagers and PHA
Family Members (Table 2) Socio-economic profiles of the villagers and PHA family members are summarized Table 2. Both groups show similar socio-economic status. As for relations with PHAs, the majority of them are close relatives of PHAs (43.2"/"), parents (21.5%), brothers and sisters (1O.2"/") children (13.5%) and spouses (5.4%1.
6.6 Acceptance of PHAs by Villagers. (Table Eleven questionswere asked concerning the acceptance of PHAs by villagers which are summarized in Table 3. As for the villagers, 59.40/" of them mentioned that they knew some PHAs in the village, 45.3Yo think that there are 1-5 people in the village. lf they knew that someone in the village had contracted AfDS, 42.51o felt as usual, about 29.7o/o felt-fear and disgust, but 36.8% expressed sympathy and wanted to help PHAs. As for attending funeral of someone who died from AIDS, 81.3o/o have attended the , but 15.6% mentioned that they attended the funeral but did not drink or eat anything served. A majority of the villagers (87.30/") think that PHA children should attend the same school with normal children, while 12.7o/o do not want those children to study together out of fear for infection and other reasons. Conceming activities of PHAs, a majority of villagers (98.1%) agreed that PHAs should organize themselves to help each other and share knowledge and information among themselves. In cases where family members became AIDS patients, 79.1T" of them mentioned that family members should take care of PHAs. They can help PHAs by paying visits, giving some financial support and setting up a village fund to support PHAs.
3). Eleven questions were asked concerning the acceptance of PHAs by family members. A majority of them (90.7o/") have one or two PHAs as their close refatives. When they knew that their relatives had A|DS,27o/o felt as usual,
3).
6.7 Acceptance of PHAs by PHA Family Members (Table
45
while 67.6o/o expressed sympathy and wanted to help PHAs. As for attending the funeral of someone who died from AIDS, 83.8% have attended, but 10.80/" mentioned even though they attended the funeral they would not drink or eat anything served. A majority of PHA fami[ members (86.5%) think that PHA children should attend the same school with normal children, while infection. 13.5Yo do not want those children to study together for fear Concerning activities of PHAs, 100% of them agreed that PHAs should organize themselves to help each other and share knowledge and information among themselves. When asked about their help to PHAs a majority of them mentioned paying visits, giving some financial support and setting up a village fund to support PHAs.
of
6.8 Caring for PHAs by the villagers (Table 4). Ten questions were asked concerning care for PHAs by villagers. A majority of them (78.2"/0) mentioned that PHAs family members take care of PHAs by providing all necessary care for food, taking PHAs to see the doctor and for mental support, They also can help PHAs by providing financial assistance, mental support and necessary advice. For AIDS orphans who lost their parents, a majority of them (98.8%) mentioned that their relatives should take care of the
children.
6.9 The Most Important Problems for PHAs as perceived by the villagers (Table 5). From the villagers point of view, the most important problems for PHAs are financial problems, mental problems, social problems, family problems and children's schooling problems. 6.10 Possible Ways for Community Cooperation to Help PHAs as Perceived by Villagers (fable 6). The villagers expressed that they can cooperate to help PHAs in several ways. The most important one is by setting a community fund or support group for PHAs. The others are providing mental, financial and other support for basic needs as well as advice for self-care.
6.11 Caring for PHAs by Family Members (Table 4). Ten questions were asked conceming care for PHAs by PHA family members. A majority of them provided similar kinds of care as viewed by the villagers (providing all necessary care for food, lodging and mental support). Regarding AIDS orphans, a majority of them (94.6%) also mentioned that their relatives should take care of the children. 6.12 The Most lmportant Problems for PHAs as Perceived by PHA Family Members (Table 5). From the PHA family members point of view, the most important problems for PHAs are somewhat similar to problems mentioned by the villagers. These are financial , mental , social , family and children's schooling problems.
46
6.13 Possible Ways for Community Gooperation to Help PHAs as Perceived by the Villagers(Table 6). PHA family members also share opinions similar to the villagers. They agree that setting up community funds or support group for PHAs is the most important. Other ways are providing mental support, financial assistance, advice for self-care as well as others.
6.14 The Most lmportant Problems of PHAs as Perceived by PHA Family Members. PHA family members share similar view points with villagers. The most serious problem is financial. The others are mental,
social, family and children's schooling problems.
6.15 General Information about PHAs in the Survey (Table 7).

PHAs in the survey consisted of eight persons (four males and four females) with ages ranging from 26 lo 47 years. Five of them have children with one infected child and two infected spouses. The infection period is from two months to five years. Concerning clinical symptoms, five of them have moderate symptoms and three non-symptomatic or light symptoms. PHAs problems with their family members at the expressed that they had some beginning, but many those problems were solved later on. At present, their families provide advice on health, prepare some food and some assistance with medical care. However, some PHAs mentioned that they still have some problems with their family members and do not receive any support from the family.
6.16 Acceptance and Gare by PHA Family Members.
6.17 Support
Groups (Table
for PHAs from Other Organizations and from PHA and 10). Both government and non-government
organizations provide several kinds of support to PHAs. They provide some advice, training on self-care, referral services to health facilities, free medication, some monthly financial assistance as well as some food and other daily personal requirements. Besides receiving support from government and non-government organizations, many PHAs also receive a many benefits from being members of PHA support groups. By joining PHA groups, PHAs do not feel lonely, and can share information and knowledge about food, self-care, drugs and other concerns.
6.18 The Most lmportant Problems for PHAs (Tablell). PHAs expressed their problems on financial problems: medical bills, family expenses and children's education as the most important, ones. The others include poor health (fatigue, diarrhoea, skin rashes ) and problems faced by
their children (about schooling and stigmatization). 6.19 Types of Community Cooperation to help PHAs as Requested
by PHAs (Table 12). PHAs share similar viewpoints with the community
concerning support from the community
. Most of them expressed their need
47
for having community funds to support PHAs and provide mental support from the community. However, PHAs would like the community to help buy materials produced by their group so that they can earn some money from their activities. They also have much concem on having someone take care of their children atter their death.
48
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49
Table
General Socio-Economic Profiles of Villagers and PHA Family Members No. of Respondents Villagers PHA Family Socio-economic Profiles (N=160) Members (N=371
No,
7o
No. 18 19
1
o/o
1. Sex - Male - Female 2. Age - Less than or 20 years - 21-30 years - 31-40 years - 41-50 years - 51-60 years - 61-70 years more than 70 years 3. Marital Status - Married - Single - Divorced / Separated 4. Education - No schooling - Incomplet primary education - Primary education - Secondary education - Higher than secondary education 5. Occupation - Agriculture - Daily employment - Private jobs - Security or Construction Work - Merchant - Government officials - Private company - Unemployed - Students 6. Relation with PHA - Father - Mother - Spouse - Children - Brothers / Sisters - Close relatives Note : 1) Villagers mean people who is neigther members
88 72
8 22
41
55.0 45.0 5.0 13.8 25.6 24.4 20.0 6.8 4.4

73.1 17.5
48.6 51.4 2.7 13.5

27.1 21.6 13.5 18.9
39 32
11
5 10 8 5 7
1
7
117 28 15
2.7 75.5 13.5 10.8

13.5
9.4 2.5
3.1
28 5 4
5
4
5 118 19 14
73.8 11.8 8.8 36.8 12.5

13.1
29 2
1
78.4 5.4 2.7 29.7 21.6 2.7

8.1
59 20
21
11
8
1
8 24
5
4
12 7
5.0 15.0 3.2 2,5 7.5 4.4
:
4
':'
10.8
:
16.2 5.4 5.4 13.5 16.2 43.2
6 2 2 5 : 6 16 PHA nor PHA family
50
Table 3 Acceptance of PHAs by the Villagers and PHA Family Members

No. of Respondents PHA Family Villagers (N=160) Members (N=371 o/o Yo No. No.
Acceptance of PHAs
1. Do you know any PHAs in your village? - Yes - Unknown 2. How many PHAs in the village? - 1-5 persons - 6-10 persons - 11-20 persons - more than 20 persons 3. How many PHAs are your close relatives? - 1 person - 2 persons - 3 persons - 5 persons - 6 persons 4. What was your feeling when you knew that your relatives or people in your village had AIDS? - The same as before - Fear . Disgust - Sympathy, feel sorry - No disgusting, want to help 5. lf you knew someone had AIDS, what would you do? - Visit them - Not visit them due to fear of infection - Visit them but not act close to them - Visit them if they are our relatives or familiar persons - Give them some money or material - Give them moral support 6. Have you ever attended the funeral of a PHA? - Yes - Yes, but did not drink or eat anything served
e5 65
43 22
18 12
l
1
59.4 40.6
32 5
86.5 13.5
45.3 23.2
19.0 12.5 19 10
1
1
:
59.4 31.3
3.1 3.1 3.1
68 30 3 56 3
42.5 18.8 1.9 34.9 1.9
10
2 24
1
27.0 5.4
64.9 2.7
113 19 5 8
ln.t I 12.0 | 3.1

I I
6
1
16.2
2.7
I u.o
|
I
14 130 25 5
8.8
l2
I
lrt
131
5.4 75.7 83.8 10.8 5.4
-No
I 81.3 I 15.6
3.1
l4 lz
51
No. of Respondents Acceptance of PHA Villagers (N=160) No. %

1 1 1
PHA Family Members (N=$/) No. %
7, The reasons that you don't go to funerals - Afraid of infection - Never go to any funeral - Will send someone in place - Some physical problems 8. Should PHA children attend the same school with normal children in the village ? - Yes
33.3 33.3 33.3
u:o
50.0
-No
8.1 The reasons that they should not attend the same school : - Afraid of infection to normalchildren - Don't want them to be together - PHA children may feel discrimination and isolate themselves from the class 8.2 The reasons that they should attend the same school - AIDS is not easily transmitted - Ghildren may not get AIDS from their parents - Usually the school church will separate infected and normal children - We have to show no discrimination and give them moral support - Will create more problems for PHA children 9. What do you think when PHAs organize AIDS activities and visit other PHAs ? - agree - disagree 9.1 The reasons for agreement - it gives mental suppoft to each other - it is good to exchange knowledge and information among PHAs - PHAs understand each other very well - PHAs will work and take pride in themselves 9.2 The reasons for disagreement - PHAs will get more infection - PHAs should be in their home
138 20
87.3 12.7
32 5
86.5 13.5
13 2 3
72.2
11.1
3
1
75.0 50.0
16.7
19 17
29.2 26.2 6.2 20.o

18.5
10
43.5 34.8
4
13 12
4
1
17.4
4.3
155 3
98.1 1.9
37
':o
72.2 46.7 8.3 2.8
77 14 49
51.7 9.4
26 6 3
1
I
1 1
32.8 6.0
50 5
52
Acceptance of PHAs
No. of Respondents PHA Family Villagers (N=160) Members (N=37) o/o No. No. Yo 125 28
1
10. lf you have PHAs in your family, what would you do? - family members should take care of them - should send to the hospital - can live together but separate belongings - should isolate them because of disgust 11. How can you help PHAs? - visit them - give financial support - set up a village fund - take them to see a doctor when needed - give them knowledge - give food and other necessary items
79.1
4
117 53 32 4 10 5
17.7 0.6 2.5

73.1 33.1
32
12
11
1
20.0 2.5 6.3

3.1
86.5 32.4 29.7

2.7
8.1
53
Table
4 Caring for PHAs in the Community

Caring for PHAs in the Community No. of Respondents PHA Family Villagers (N=160) Members (N=371 No. Yo No. %
79
1.
How do PHA families take care of PHAs ? provide all necessary care such as food, lodging and doctor visits provide mental support prevent themselves from infection e.g. by using gloves live together using separate food and belongings never visit PHAs or PHA families
50.6 27.6 10.3 6.4

5.1
15
40.5
51-.4
43
16
10
t:
1
2.7
2. Are there any PHA networks for employing PHAs or not ?
-no
yes
64 96
40.0 60.0
19 18
51.4 48.6
3. How many groups in this subdistrict ?
-1 -2 -
54
1
98.2 1.8
17
100.0
4. Are there any funds to assist PHAs in the village ?
-no
yes
54 106
33.8 66.3
15
40.5 59.5
22
5. lf there is no fund, how can we help PHAs ?
request help from the government provide employment for PHAs provide mental support and advice to PHAs PHA families should help each other provide money and other materials PHAs should set up their network and help each other take care of AIDS orphans
5 7 16
1
24
21
6.4 9,0 20.5 1.3 30.8 26.9

5.1
3 2 6
15.0 10.0 30.0
4 4
1
20.0 20.0 5.0
6. Do you think that the hospital will not accept ?
-no
yes
18
142
11.3 88.8
6
31
16.2 83.8
54
Caring for PHAs in the Community
No. of Respondents PHA Family Villagers (N=160) Members (N=37) Yo No. No. Yo
158
7. Who should take care of AIDS orphans ?
'
relatives
98.8
1.3
35
socialwelfare institutes
community day care centers monks
94.6
1
2.7 2.7
8. Are there any religious organizations in the
village to help PHAs ? yes
-no
75 85
46.9
53.1
23
14
62.2 37.8
9. Are there any folk doctors to take care of PHAs in this village ?
-no
yes
28 132
17.5 82.5
4
33 10.8 89.2
55
Table
The Most lmportant Problems for PHAs as perceived by the Villagers and PHA Family Members
No. of Respondents PHA Family Villagers (N=160) Members (N=371 o/o No. % No.
Caring for PHAs in the Gommunity
10.In your opinion, what are the most important
problems:
1. Financial problems (many medical expenses but no income) 2. Mental problems (discouragement and loneliness) 3. Social problems (discrimination and stigmatization of PHAs) 4. Family problems (non-acceptance of family members) 5. Children's schooling problems (discrimination in the school and no money for school expenses) 6. PHAs do not have enough knowledge about AIDS 95 76
59
59.4 47.5 36.9

16.9
28
14
11
75.6 37.8 29.7

16.2
27 22
6
8
13.8
21.6
6.0
2.7
56
Table
Possible Ways for Community Cooperation to Help PHAs as Perceived by the Villagers and PHA Family Members.
No. of Respondents PHA Family Villagers (N=160) Members (N=37) o/o o/o No. No.
Caring for PHA in the Community
11
.In your opinion, how can the community cooperate to help PHAs (multiple answers allowed) 1. Setting community funds or support groups for PHAs (for children's education, PHA side jobs, medical treatment, funeral expenses and others)
127
79.4
34
91.8
73
45.6
19
51.4
2. Providing mental support such as to visit and talk with PHAs as with normal people
49 30.6
12
32.4
3. Providing money, food and other necessary support

24 15.0
5 13.5
4. Providing information and recommendations

for self-care and necessary advice
57
Table
General lnformation about People with HIV/AIDS (PHA) in the Survey

General Information
No. of PHAs (N=8)
No.
o/o
1.
Sex
- Male - Female
2. Age
4 4
1 1 1
50.0 50.0
12.5 12.5 12.5 25.0 12.5 12.5 12.5
3.
4.
5.
6.
7.
- 26 Years - 29 Years - 31 Years - 33 Years - 35 Years - 37 Years - 47 Years Marital Status - Married - Single - Divorced/Separated Education - No schooling - Primary school - Secondary school - Higher than secondary school Occupation - Drawing - Daily employment - Sewing - Construction work - No work due to illness Number of children still alive - have no children - 1 child - 2 children Were your children infected? - yes
2
1
1 1
2 2 4
1 1
25.0 25.0 50.0

12.5 12.5 62.5
'12.5
5
1
2 3
1 1
12.5 25.O
37.5 12.5 12.5 37,5 50.0 12.5

16.6 33.3 50.0
3 4
1
-no
- not tested for AIDS (unknown)
2 3
58
8.
Did your children have any schooling problems?
-no
.- formerly yes but not now - his school is outside the village - too young to go to school 9. Did your spouse also get AIDS - Yes
2
1
1 1
40.0 20.0 20.0 20.0 40.0 40.0 20.0
-No
- No comment
10.For how long have you been infected? months months months year years -4 years years 1 l.Current PHA symptoms - Moderate - No symptoms or very light
2 2
1
2 I 10 1 3 . 5
1 1 1 1 1 1 1 5
| 12.5 | 12.5 | 12.5

|
|
|
25.0 12.5
12.5 12.5
I 62.5 | 37.s
59
Table
Acceptance and Care by Family Members as perceived by PHAs
1. When your family heard that you had AIDS how did they behave towards you? o They were very upset but later gave us full support. They behaved as usual. We had some problems. lt took one year for them to accept us. 2. At present, how do they behave? o All of them accept us. We have no problems The same as usual. Some accept, some still do not. 3. What kind of care do you receive from your family? They provide advice on health, prepare food, and some medical care o Nothing. I take care of myself.
. .
. . .
Table
Support for PHAs from Other Organizations

Yes
No.
Yo
Types of Support from Other Organizations
Go
1
From NGO Both

1
some advice some training on self-care referral service to health facilities free medication month ly financial assistance some food and other daily requirements
I
8 4 8 2 2
100 100 50 100 25 75
4 2 6
1
6 2 2 2
1
Note:
Go means government organizations NGO means non-govemment organizations
60
Table
10
Benefits from Being a Member of PWA Group
1. We do not feel lonely.
2. We can share information and knowledge about food, self-care, drugs, traditional medicine, child's schooling, etc. 3. We can join some income generating activities such as sewing and side line jobs.
Table 11 The Greatest Problems Themselves
for PWAs as Perceived by
PWAs
1. Financial problems, for medical bills, family expenses, children education

etc.
2. Health problems (fatigue, diarrhoea,

continuously)
skin
rashes
which
progress
3. Social problems (discrimination, stigmatization)
Table
12
Types of Communities to Help PHAs as Requested by PHAs
1. Setting community funds for supporting PHAs (medical bills, children's education, and daily expenses) 2. Providing some mental support 3. Buying products produced by PHA group so that PHAs can earn some money 4. Taking care of children after their parents die.
Chapter 4
Results of the Expert's Workshop on Strategies for the Promotion Acceptance and Non-discrimination towards People Living with
of
t.
HIV/AIDS
in
Northern Thailand
Background and Rationale
Since the epidemic of AIDS in the late 1980's many patients have gradually returned back from their workplaces in urban areas to their hometown in rural areas, The northern part of Thailand is an area in which many AIDS patients have returned and therefore, became a focal point for community-based care activities for AIDS, Many government and nongovernment organizations have been working to promote acceptance and non-discrimination towards PHAs in these communities, The people in these organizations have much experience working with PHAs and the community regarding these issues. Therefore, it is necessary to organize an experts workshop of to create a forum so that representatives from different organizations can come and share their experiences as well as to review certain important strategies for the promotion of acceptance and nondiscrimination towards people living with HIV/AIDS in the community.
e. Objectives
information and experiences regarding acceptance and non-discrimination toward PHAs in the community. z. To identify areas that need to be emphasized for the upcoming training workshops for field workers and community volunteers for strategies for living with AIDS in the community
t. To exchange
s. Major Topics of the Workshop

Presentation from the expert's experience about the situation and problems regarding acceptance of PHAs in communities. e. Recommendation on strategies to promote acceptance and nondiscrimination towards PHAs g. Recommendations on important issues regarding training for field workers and community volunteers for the above-mentioned purposes +. Workshop Participants
t.
Participants consisted of 24 experts from government, private organizations, the Ministry of Public Health, NOGs and universities (see
details in the List of Participants for the expert's workshop)
62
Date and Venune January 10, 1997 at the Northnet's Office, Chiang Mai Province, Thailand.
Results of the Expert's Workshop

Opening Ceremony by Prof. Som-arch Wongkhamthong, Director of AIHD Dr, Som-arch welcomed the workshop participants and gave information that for this meeting, the ASEAN Institute for Health Development (AIHD) has invited experts from various agencies who have exclusive experiences in working with PHAs and the community to share their experiences as well as to review certain important strategies for the promotion of acceptance and non-discrimination towards people with HIV/AIDS in the community therefore, it is hoped that everyone present will be able to share their experiences so that we will come up with better strategies for this issue. The following are major input from the workshop. Mr. Swing (Northern)
As the Moderator of the workshop, we would like to know what

processes and strategies that all of us use for the promotion of acceptance and non-discrimination of PHAs in northern Thailand communities. Ms. Lamai (The White Sky Project)
From my experience as a PHA who lives in the community, I think people still think of PHAs as an infectious agents to their spouse and others. However, NGO's can play the role of coordinating with health center staff, the village headman and others to support and promote the acceptance of PHAs. lf PHAs do it alone, people will think of PHAs as those who do not work but try to be dependent on their neighbours.
Mr. Swing (Northern)
We need both PHAs positive attitudes for the community and a

supporting organization to initiate this process, in the community.
Ms. Kwannet (Community Care Network)
ourselves, our group and the community as well. However, in order to work with the community, PHAs need to keep themselves clean-looking and to be modest about their behaviour. They should not perform anything which will make the community feel disgust or uncomfortable. We should not hug or
I am a PHA and have been working with the community in SanKampeng district. lf PHAs reveal themselves, we can work to benefit
63
cook meals for them or ever join meals with them. lf we behave properly, the community will accept us. However, PHAs still have problems about their children's schooling. Ms Lamai (The Whilte Sky Project)
four to five years ago, the villagers did not accept PHAs. When we drank water from a glass, they would wash the glass right away. They refused not to have my child go to the same school with their children. However, after Northnet came to our village, we had more chance to talk with people. I even cried and requested them to have a place for my child to study. But I promised them that if my child gets worse or has some cold, I will not let my child come to school. Luckily, people gradually understood and accepted us.
Mr. Udom (CARE Thailand)
When PHAs reveal themselves, it means that they open a forum for discussion. People will gradually realize that AIDS is in their community and not a problem unrelated to themselves. lf people are willing to eat food cooked by PHAs, it is an indicator of the acceptance of PHAs in the community.
Ms. Benjawan (Women Against AIDS)
AIDS is very close to everyone in our village. I think it has already entered every family name (surname). Now everyone has realized that there is no time for fear or discrimination. lt is the time for revealing and living together.
Mr. Sawan (The Church of Ghrist of Thailand)
For community acceptance, it is essential that the PHAs have to reveal themselves to someone, and there to then community. However, the initial exposure to the community is very delicated and sophisticated issue for PHAs. With good community preparation and with gradual exposure of PHAs to the community, starting from one PHA and then two, three.,.,) people will come to understand the hardship and sufferings of PHAs.
There are two levels of acceptance, i.e. acceptance for PHA social functions and the PHA as an individual. At the individual level, one may be able to reveal the truth to their family, but not to their neighbours, or within their village, but not to other villages.
Ms Wilai (New Life Friend Centre)
PHAs have many problems such as economic difficulty), children's schooling and social stigma. I had to reveal myself to the community because there is no other way to solve these problems. However, revealing oneself does not mean that we have to lower our self-esteem. As long as we decided to do so we have to behave until people understand us. People do not accept PHAs not because of germs or the virus but because of improper behaviour by PHAs, Once we reveal ourselves we have to adjust our behavior properly to the environment. We need to pay more attention to our health, especially hygiene.
Ms. Patcharobon (Otfice of GDC Region 10)
From my obseruation, there are more females than males who ioin PHA network. Why is it so?
Ms. Araya (Orchid Glinic)
In our community, if the husband is infected, it is very likely that the wife will be infected as well. When the wife is infected, they will think about their children problems and others. Then they will decide to do something. Moreover, people will not be disgusted with PHAs but will dislike doubtful
persons. Mr. Supotch (Plan International)
As for Plan lnternational, we don't offer social welfare activities but will solicit the community to participate in our activities. We will facilitate PHAs to work with their neighbors. By doing so, PHAs will feel comfortable to reveal themselves with us first, them gradually to the community. Mr. Swing (Northnet)
Previous attitudes toward AIDS were disgust and discrimination. However, with proper interaction with the community, their attitude can be changed to acceptance and non-discrimination. In the Northem part of Thailand, we often use PHAs themselves as change agents in the community.
Mr. Sanon (The Church of Christ in Thailand)
I also share the same experience. There is no other powerful change agent than PHAs. We cannot speak out about pain and sorrow of PHAs as a PHA would do
65
Ms. Patcharobon (Office of CDC, MOOH)
In some communities, PHAs would not reveal themselves. Therefore, there is no group or network of PHAs, especially in the northern part and the southern part of Thailand. Sometimes, we have some budget from the government to support PHA networks, but since there is no group or network of PHAs, we could not use that budget.
Mr. Sanon (The Church of Christ in Thailand)

think that revealing by PHA and the readiness by the community both are very important. lt's like the building caught fire and then we requested people the 5 on floor to come down. In order for them to come down, they needed some courage and then we have to createa safe ground to accept them.
I
Dr. Som-arch (Director of AIHD)

Now we have accepted that in the northern part of Thailand using PHA "living media" is the most important strategy for community preparation leading to acceptance and non-discrimination to PHAs. However, this phenomena has happened in certain groups and certain communities only. Would it be possible to apply this experience on a larger scale and at a more rapid rate than let it happen naturally like in the past?
Mr" Sanon
(Ihe Church of Chriet on Thailand)
I think that we need to prepare communities more rapidly and at a wider scale. This can be done by using a combination of materials and processes such as training community leaders, AIDS exposition in the community, video shows, poster sessions and others. However, these activities have to be carried out with a positive attitude of living with PHAs rather than by campaigning that AIDS is a horrible infectious diseases. lt is the time to campaign for love and sympathy rather than creating negative
attitudes towards AIDS
As for the experience of CARE, for community preparation, outsiders are not appropriate in this function. lt is better to use volunteers from the community rather than using CARE's staff. The volunteer can work as a liaison person between PHAs and the community. They can set up discussion groups for AIDS at the beginning and then lead to other activities.
66
Ms. Araya (Orchid Clinic)
In my experience, successful community preparation will depend on several factors. First, government otfices, especially the health center staff
should be cooperative and have a positive attitude about PHAs. Second, we need someone who is active to stimulate the community. lf we have an active PHA in the community, it is fine. But if we don't , we have to "impost" some PHA from outside the village. They have to come and work with the villager until PHAs in the community can identify themselves and be a part of community activities.
Ms. Lamduan (Social Development Foundation for Knowledge and Therapy

for AIDS)
have just conducted a community survey in the four districts of Chiang Mai province. We found out that in many communities, we still have a lot of problems concerning the acceptance and support to PHAs and by PHAs themselves. ln many communities, PHAs are not ready and do not want to identity themselves. ln some communities, PHA familes don't have enough knowledge to take care of PHAs. They don't know where and how to find support. The following are major points which I can summarize:
r. The village headmen were reluctant to give any information
on
AIDS. They usually referred us to village health volunteers. e. In the village where PHAs identified and organized themselves,
there is considerably good support from the communities. e. Family members of PHAs, although sympathetic and willing to take care of PHAs, still lack self-confidence and enough knowledge for AIDS care. +. There is much information on AIDS. But most of it is general information. People would prefer to listen to specific information from PHAs than from health center staff. s. We have the feeling that government officers (health center staff, district officers and others) and the village headmen do not really have enough information and understanding about AIDS. They also need some kinds of training in order to be able to take on leadership roles promoting acceptance and non-discrimination towards PHAs in the community. Mr. Swing (Northnet)
Would
it be right to conclude that now the villages have already
accepted PHAs?
67
Ms Lamduan (Social Development Foundation for Knowledge and Therapy

for AIDS)
The villagers do sympathize with PHAs, but because they
lack
knowledge and confidence, they cannot take active roles in caring for PHAs. For PHAs, we can conclude that if they don't identify and organize themselves, they will live in isolation and will lack of information on self-care, appropriate drug use, proper food intake and others. Dr. Som-arch (Director of AIHD)
The situation now indicates that PHAs, villages and even PHA family members need some practical knowledge. ,Would it be possible for the government sector to arrange training programs in these areas?
Ms. Araya (Orchid Clinic)
We absolutely need this kind of practical training for the community. However, up to now there are so many training programs for AIDS, but most of these are very boring. People would like to know specific issues such as if they use whisky to clean their penis after visiting CSW, would it prevent AIDS or not. Some questions like that....
Ms. Hathairat (AIHD)
I have some experiences in working with the factory workers in urban areas. We began our training process based on the atmosphere of understanding and accepting PHAs. Then we talk about AIDS, especially the nature of AIDS virus rather than blaming someone's bad behavior. Then we use ceftain games and role plays to make them realize that anyone can get AIDS from their regular behavior. Finally, some PHAs identified themselves to the group and then others did too, I think we can apply this training process to people in the rural community as well.
Dr. Som-arch (AIHD)
We would like to thank everyone who shared with us your valuable experiences and comments on strategies for the promotion of acceptance and non-discrimination towards people with HIV/AIDS. We will take your comments and recommendations when we design the coming training program for community leaders and community volunteers. We will also summarize your good experiences in the research report to the Japanese Foundation for AIDS Prevention as well. Thank you for your cooperation.
68
List of Participants for the Expert Workshop

1. Ms. Sirinate Piyajitpairat AIDS Network Development Project (AIDSNET) 2. Mr. Pongdech Sarakan AIDS Network Development Project (AIDSNET) 3. Mr. Sompoth Borwornsin OrTice of Communicable Disease Control Region 10, Chiang Mai Province Ministry of Public Health 4. Ms. Patcharobon Natpratan Otfice of Communicable Disease Control Region 10, Chiang Mai Province Mimistry of Public Health 5. Mr. Supotch Boontem PLAN lnternational 6. Ms. Lamduan Kalapun Social Development Foundation for Knowledge and Therapy for AIDS Ms. Vilai Kumkaew 7. New Life Friend Center 8. Mr. Sanan Wutti The Church of Christ in Thailand 9. Ms. Wirod Kantasook Northnet 10.Ms. Lamai cometon The White Sky Project 1 1.Ms. Pitsamai Dachakad Family Planning Association at Chiang Mai 12.Mr, Udom l-ikhitwonnawat CARE Thailand 1 3.Mr. Suthon Moonmuang Thai Business Coalition for AIDS (TBCA) 14.Ms. Kwannet Jithiang Cgmmunity Care Network 1S.Mr. Swing Tanud Northnet 16.Mr. Jirapan Sapkaew Community Action Against AIDS 17.Ms. Benjawan Sisot Women Against AIDS 18.Ms. Araya Wanna Orchid Clinic 1 9.Ms. Varaluk Chaimuangchaen Northnet 20.Ms. Hathairat Suda ASEAN Institute for Health Development (AIHD), Mahidol University
69
21.Ms. Somjai Pramanpol AIHD, Mahidol University 22.Dr. Boongium Tragoolvongse AIHD, Mahidol University 23.Dr. Boonyong Kiewkaruka AIHD, Mahidol University 24.Dr . Som-arch Wongkhomthong AIHD, Mahidol University
Ghapter 5
Results of the Training Workshop for Field Workers and Community Volunteers on Community Preparation for Living with AIDS
1. Title of the Workshop : Community Preparation for Living with AIDS
2. Objective of the Workshop
2.1 General Objective : To test the training strategies as reviewed and recommended by experts for the promotion of acceptance of people
living with HIV/AIDS (PWA) in the community
2.2 Specific Objectives : 1) To enable the participants to understand AIDS problems 2) To enable the participants to analyse the situation in the community and understand the impacts of AIDS at individual family and community levels 3) To enable the participants to enhance communication skills with the community in terms of AIDS prevention and living with PWAs. 4) To enable the participants to plan for the promotion of community participation for the prevention and care for AIDS and acceptance of people living with HIV/AIDS (PWA) in the community
3. Training Organizer : ASEAN Institute for Health Development, Mahidol

University
4. Training Place :
Academic and Developing Services Center,
Sukothaithammathirat Open University, Raisom Subdistrict, Phetburi Province 5. Training Date: 16-17 February, 1997
6. Training Participants : Community leaders, community field workers and community volunteers, 45 persons total
7. Training Topics and Training Process
The training topics were suggested by the Expert Review Workshop which was held on January 10, 1997. These were key topics which would be necessary for the understanding and acceptance of PHAs in the community.
71
The training process consisted of games, role-play, lecture, seminars, small group discussions, audio-visual presentation and others. The training process was based on a training manual which was developed by the previous years' research project supported by the Japan Foundation for AIDS Prevention. Detaib of the training process are described in the previous year reports on " The Research on Training Metrologies for AIDS Education and Gounselling in Thailand".
8. Training Schedule
19971?/16
08.00 08.30 -
08.30 09.00 09.00 - 09.30 09.30 - 10.15

10.15 10.30 -
10.30 .15 11.15 - 12.00 12.00 - 13,00 13.00 - 14.45

11
Registration Opening ceremony Explanation of the training objectives Self-introduction Guidance to training process Analysis of Participants' attitude on AIDS and People Living with HIV/AIDS (PWA) Cotfee break Video presentation on "Lives of People Living with H|V/AIDS (PWA) AIDS situation in the local communities Lunch AIDS : whose problems ; others' problems or our
14 45- 15
15.00 -
16.30
00
B,jf:il?3"Obstacles to the prevention and acceptance of AIDS problems
$97iz17
08.30 09.00 09.15 10.30 10.45 12.00 13.00
09.00 09.15 - 10.30 - 10.45 - 12.00 - 13.00 - 14.45

-
14.45 15.00 -
15.00 16.30
Group process Summary of the first day training activities Problems of PWAs and their families Coffee break Continued session Lunch Guidelines for the promotion of community participation for the prevention and care for AIDS and acceptance of people living with HIV/AIDS (PWA) in the community Cotfee break Summary and evaluation of the training modules
72
9. Results of the Training Activities
The training process emphasized the participatory approach and interactive process with participants at all stages. The following are the details and results of each session.
9.1 Anticipation by the participants about the training o want to gain more knowledge on prevention and solving AIDS
. r
problems want to see pictures of AIDS hope that the number of AIDS patients will decrease hope that the community leaders, volunteers and members will be more concerned on AIDS problems and will participate in prevention for AIDS want to know that sharing meals with PWAs will be dangerous or not want to set up community development funds to support PWAs
9.2 Queetions from the participants prior to training activities r What are the beginning symptoms of AIDS o Are there any risk for getting AIDS through sharing the same bath with PWAs? o Are there any risk for getting AIDS from eating food which was cooked by PWAs? r lf we wash the blade stained with a PWA's blood will we have any chance to get AIDS? o lf we touch the condom when removed from penis, will we have any chance to get AIDS? r What are appropriates strategies to promote people's awareness for AIDS's prevention o lf the Tambon administration committee wants to have some statistics on AIDS epidemic in the community and wants to set up an AIDS Supporting Fund, where we can get
information and support from?
9.3 Analysis of Participants'Attitude on AIDS and PWAs

9.3.1 Attitude concerning "lt serves you right that you got AIDS inspite of knowing it" o Reasons for those who agreed =+ inspite of knowing AIDS, they still visit commercial sex worker. lt serves them right. lt =+ inspite of knowing that it is dangerous, they still do it. serves them right.
73
=+
inspite of knowing AIDS, they still visit commercial sex workers without using condoms. lt serues them right.
Reasons for those who disagreed :+ even if one has the knowledge on AIDS, one can get it unexpectedly from accidents, or sharing at the barber shop. + anyone can misbehave or get AIDS unexpectedly, we should not blame them,
9.3.2 Regarding "should people living with HIV/AIDS (PWA) identity themselves to the public or not?" o Reasons for those who agreed that PWAs should reveal themselves to the public =+ other people who know the PWAs will be more concerned on AIDS prevention + PWA should tell their story to their family before telling others + other people will understand more about AIDS and will be more sympathetic to PWAs Reasons for those who thought that PWAs should not reveal themselves to the public + our society is not ready to accept PWAs + nothing would be better even PWAs reveal themselves =+ after revealing the truth, PWAs will face reversal difficulties.
if
9.3.3 Regarding "Should applicants for members of the Tambon Administration Committee identify themselves to the public that they are HIV+ or not?" o Reasons for those who agreed =+ They will be representatives of the community, therefore they should be free from AIDS + We don't have to replace them again in case someone has AIDS and cannot work full time Reasons for those who disagreed + even though they are PWAs, they can still work + if they are PWAs, then they want know better than others about AIDS related programs.
74
9.3.4 Regarding "Should we let PWAs be the village health
volunteers?"
Reasons for those who agreed

=+
they can educate others on prevention and care for

AIDS
on
+ they can be an example of self-identification and

how PWAs take care of their health
Reasons for those who disagreed =+ if the health volunteers themselves also get AIDS, how can they inform people of AIDS prevention? Who will believe them? + AIDS is a disgusting disease. Those who get it are bad examples. Village health volunteers should be a good example, not a bad example to the community.
9.3.5 Regarding "Should day-care centers accept children with HIV/AIDS or not?" Reasons for those who agreed + children with HIV/AIDS are very pitiful, they also need friends and education + AIDS is not easily contracted o Reasons for those who disagreed + how can we be sure 1QOY" that normal children will not be infected from HIV+ children =+ children are small. They do not know how to prevent themselves from infected children.
The participants' attitude on AIDS and PWAs were clearly

demonstrated through this training process. These are important issues which the trainers should keep in mind when they proceed to other session.
9.4 Analysie of AIDS situation in the local community

9,4.1 What would happen in your community? Following are the
participants expectations
o there will be more infected neighbors o there will be more AIDS orphans o more people will die from AIDS o there will be more AIDS widows o hospitals will be overwhelmed with AIDS patients
the government will have to bear more burden for AIDS
75
9.4.2 Who will receive impact from AIDS family members o people in the village medical doctors and public health nurses o tourists in the village o infected people
.
.
9.4.3 Who should solve theee problems? o the village health volunteers o the Tambon administrative committee o the local public health officers o community leaders and the villagers governmentauthorities monks everyone
. r .
9.4.4 What can we do? we can set up AIDS prevention project in our community we can visit PWA families we can give moral support and other necessary support to PWAs o we have to prevent ourselves from AIDS as well
r . I
9.4.5 Who are at risk and what are appropriate alternative
behaviors? From the game " who are at risK', it was concluded that everyone is at risk. Housewives, married males, single females, single males, as long as they still have sex with someone, they are at risk. What are alternative behaviors that one can choose? The followings are the participants'opinions . use condoms when we have sex o w should perform HIV tests before getting married . we need a happy family life o women should not be shy to talk about AIDS with their paftner before having sex with someone r wo should keep the Five Essential Buddhist Principles (to refrain themselves from alcohol, and inappropriate sexual
behavior and others) both men and women should try aim for better family life.
to respect each other and
76
9.4.6 Why people perform risky behaviors and what are the obstacles for AIDS prevention activities?
loung people do not talk about AIDS and still have sex
o
o o
among themselves housewives believe in their husbands and are afraid to talk with their husband on using condoms or refraining froms visits to commercial sex workers we still have problems about alcohol, addiction to thinner when people are drunk, they will not use condoms
10. Evaluation of the training programs
From overall participatory evaluation with the participants, most participants expressed their satisfaction and appreciation with both training contents and training process. The following are participants' responses toward certain issues.
10.1 What would you do after the training? o will inform teenagers that they should be cautions when have sex with anyone. lf they visit CSW's, they should use a condom every time o will inform neighbor's housewives that AIDS is at an epidemic stage. They should wam their husbands to use condom everytime with others. will encourage the Tambon administration committee to coordinate with the village health volunteers to set up on AIDS action center will convince other villagers on the importance of acceptance and support for PWAs o will encourage NGO's and local government organizations to imitate similar training programs for other communities as well
r .
10.2 How much confidence do you have AIDS to others?
to transfer knowledge on
most participants mentioned that they are quite confident to promote knowledge on AIDS and acceptance for PWAs. However, they said that this task is quite ditficult because it involves talking about sex and sexual behaviors which people conceive as impolite issue. However, they will try their best effort.
77
10.3 What made you feel confident to talk about AIDS? o knowledge and information on AIDS, techniques and training process made us feel confident to talk about AIDS. Moreover, we know where and how to get support from local nongovernment and govemment organizations. We also realize the importance of community involvement on AIDS programs and have gained some idea how to mobilize the community on this issue.
10.4 If we
will set up another training program for other communities, what will be your recommendations' this training program is very appropriate for the villagers because it lets people in the community speak about their
understanding and their problems. lf also encourages people to express how they would like to solve the problems Topics, numbers of participants at one time and duration of the training is quite appropriate. Since people on the community need to be encouraged to speak out, the number of participants should not be too many. Moreover, most of them have their own jobs so the training duration should not be too long participants should be classified according to their social functions so that they can discuss their roles properly participants should consist of representatives from many groups, e.9., youth groups, housewives, community leaders, village health volunteers and others. the training organizers should distribute more handouts and technical articles written in simple language at the end of the training, each participant should receive a training on AIDS and that they are certified to promote AIDS knowledge to others
Appendix I Questionnaire No. l, ll, lll (English Transtation) Village Data Summary Sheet
About the Village
Village
Province No. of households .....
Sub/district
District
Population
No. of Full-blown AIDS (cannot take care of themselves) Symptomatic AIDS care ....... Persons (can move but cannot work) Non-symptomatic or Symptomatic
cases . light
Male
Female persons )
( ( ) cases
.... Persons
Are there any religious organizations to support PHAs in the village ? tr yes
Eno
Are there any folk doctors to take care to support PHAs in the village ? O yes
o
,no
About the Respondents

Questionnaire
Questionnaire
1 2 3
Questionnaire
For villagers (not PHA or PHAs fami[ members) .. Female Total ....... Persons For PHA family members (parents, spouses, children or immediate family members of PHAs) .. Female Total ....... Persons For PHAs Full-blown AIDS ,...... Persons Male ...... Female ........ Symptomatic AIDS ...... Persons Male ...... Non-Symptomatic AIDS... persons Male .,.
Male Male
79
Questionnaire
For Villagers (not PHAs or PHA/Family Members)
l.
General Socio-economic Profiles
Village
District Province Date of Interview Name of lnterviewer
Subdistrict
Name of Interviewer Household No.
1. Sex 2. Age .
n Male tl Female ....... year 3. Marital Status tr Married tr Single n

4.
Education
Divorced or Separated
tr
no schooling fl incomplete primary education tr primary education tr secondary education O higher than secondary education
5.
Occupation
tr
agriculture u employee (specity) ..... tr merchant tr government official B private company O others (specify)
ll. Acceptance
6.
of PHA
Do you know any PHAs in your village ? tr yes There are
7. What was your feeling when you knew that people in your village had
AIDS ?
trno tr no idea
..
.. persons
D the same as before tr fear

disgust sympathy o other (specify) lf you knew someone with AIDS, what would you do ? tr go to visit them tr not visit them due to fear of infection tr other (specify)
tr tr
8.
80
9.
Have you ever attended the funeral of a PHA ? B yes D yes, but did not drink or eat anything served [1 Never, because (reason) 10. Do you think that children of PHAs should attend the same school with normalchildren in the village ? tr yes tr no because (reason) 11.What do you think when PHAs organize AIDS activities and visit other PHAs ? tr agree o disagree because (reason) 12.lf you had PHAs in your family, what would you do ? tr family members should take care to them tr should be sent to the hospital other (specity) 13. How can people in the village help PHAs or their families ? U go to visit them tr give some financial support tr set a village fund to support them tr other (specity)
lll. Caring for PHAs in the Community

14.Are there any PHA networks for employing PHA Occupation ? tr yes
Bno
15.Are there any funds to assist PHAs in the village ? tr yes
Dno
lf there is no fund, how can we help PHAs ?
16. Do you think that
the hospital will not accept PHAs ? D yes
trno
17.Who should take care of AIDS orphans who last their parent's, who should take care of them ? tr relatives tr others (specify) 18. Are there any PHA religious organizations in the village to help PHAs ? tr yes
Dno
19.Are there any folk doctors to take care of PHAs in this village ? B yes
trno
81
20.ln your opinion, what are the most important problems of PHA ?
21.In your opinion, how can the community cooperate to help PHAs ?
Questionnaire 2 For PHA Family Members
l.
General Socio-economic Profiles
Village
District Province Date of Name of
Subdistrict
Interview Name of lnterviewer Household No. Interviewer.. 1. Sex A Mab tr Female 2. Age . ....... year 3. Marital Status tr Married n Single n Divorced or Separated
4.
Education
tr tr tr tr
5.
no schooling incomplete primary education primary education secondary education D higher than secondary education Occupation agriculture employee (specity) ..... fl merchant tr government otficial tr private company O others (specify) Relation with PHAs ?
tr tr
6.
tr tr
father O mother O husband wife O children tr brothers/sisters

other (specify)
D close relative
tr
ll.
7.
Acceptance of PHA
ls any PHA your close relative ? tr yes There are
8.
Bno tr unknow
..
.. persons
What was your feeling when you found out ? tl the same as before U fear tr disgust D sympathy/pity O other (specity)
83
9.
lf you knew your relatives had AIDS, what would you do ? O go to visit them tr not visit them due to fear of infection tr other (specify) 10. Have you ever attended the funeral of a PHA ?
tr yes E yes, but did not drink or eat anything served E Never, because (reason)
11. Do you think PHA children should attend the same school children in the village ?
with
normal
tr yes tr no (reason)
12.
What do you think when PHAs organize AIDS activities and visit other
PHAs ?
tr
13. How
agree
?
D disagree (reason)
can people in the village help PHAs or thelr families D go to visit them D give some financial support D set a village fund to support them tr other (specify)
lll. Garing for PHAs in the Gommunity

14.How do PHA family take care of PHA
?
15.Are there any PHA networks for employing PHAs ? tr yes
Dno
16. Are
fl no lf there is no fund, how can we help PHAs ?

17. Do you think that
there any funds to assist PHAs in the village B yes
the hospital will not accept PHAs ?
tr yes trno
18.Who should take care of AIDS orphans ? tr relatives tr others (specify) 19. Are there any religious organizations in the village to help PHAs yes
trno
84
20.Are there any folk doctors to take care of PHAs in this village ? O yes
trno
21.In your opinion, what are the most important problems of PHAs ?
22.1n your opinion, how can the community cooperate to help PHAs ?
Questionnaire 3 For People Living with HIV/AIDS (PHAs) l. General Information about
PHA
Village
Sub-district
District Province Name of Interuiewer Date of Name of Interviewer (can be omitted)..,.,...........Househo|d No 1. Female 2, Age ...... year Divorced or Separated 3. Marital Status Married 4. Education tr no schooling O incomplete primary education tr primary education D secondary education tr higher than secondary education 5. Occupation B agriculture D employee (specify) ..... tr merchant E government official tr private company tr others (specify) ........persons 6. Number of children still tr No 7. Were any of your children infected? 8. Did your children have any schooling problems? O Yes. lf yes, how did you solve the B problems? 9. Did your spouse also get AIDS? 1O.For how long have you been infected?. .....,months...... ...years PHA Symptoms now (from interuiewer observation) tr full-blown AIDS D symptomatic AIDS tr nonsymptomatic AIDS
Interview Sex n Male tr . tr tr Single tr
alive.
[ Yes
No
ll
Acceptance, Garing and Support for PHAs
11.When your family heard that you had AIDS, how did they behave towards you?
86
12. At present, how do they behave?
13. What kind of care do you receive from your family?
14. What kind of support do you receive from other organizations?
Tvoes of Suooort
Some advice Some trainino on self-care Some referral seruices to health facilities Free medication Other
from Gov. Org.
from NGO
tr tr tr tr tr
tr
tr tr tr
15. Do you belong to any PHA groups? 16. How did you benefit from being a group member? 17.ln your opinion, what are the most important problems of PHAs? 18. In your opinion, how can the community cooperate with PHAs?
87
Appendix I Questionnai res No.l,ll,lll (Thai Language)

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Research On Strategies For Living With People With HIV - AIDS in The Community

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Research On Strategies For Living With People With HIV - AIDS in The Community

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Research on Strategies for Living with People

With HIV/AIDS in the Community

Som-arch Wongkhomthong, M.D

Institute for Health Development Mahidol University r997

Funded by Japanese Foundatlon for AIDS Prwentlon