l

Research on the Promotion of Acceptance

of

People Living wnh HIV/AIDS

in the Community

Som-arch Wongkhomthong, M.D Kishio Ono, M.D

A,SEAMnstitute for Health Development Mahidol University

1998

FUnded by Japanese Foundatlon for AIDS Preventlon

Research on the Promotion of Acceptance Of People Living with HIV/AIDS

in the Community

Som-arch Wongkhomthong, M.D Kishio Ono, M.D

ASEAI{ Institute for Healt}r Development

Mahidol Universitv
1998

Funded by Japanese Foundation for AIDS Prevention

ffi

Research on the Promotion of Acceptance of People Living With HIV/AIDS in the Community

By Som-arch Wongkhomthong, Kishio Ono ISBN: 974-661-591-2

First Edition 1998 Printed by Printing Division ASEAN Institute for Health Development Mahidol University, Salaya Nakornpathom 7 31 70, Thailand

Som-arch Wongkhomthong Research on the Promotion of Acceptance of People Living with HMAIDS in the Community /Som-arch Wongkhomthong, Kishio Ono

l.Acquired hnmunodeficiency Syndrome-problems. 2. Community 3. Health Education. I. Ono, Kishio. II. Title. WC503 56931 1998 ISBN :974-661-591-2

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 for the Promotion of Acceptance of People Living with HIV/AIDS in the Community

We would like to take this opportunity to thank all those that contributed valuable insights and ideas to this research project: Especially, Mr. Ton Smites for his contribution of the literature review on the "Situation, Problems and Strategies for the Promotion of Acceptance and Non-discrimination
toward People with HIV/AIDS in the Thai 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 the acceptance and non-discrimination of people living with AIDS in the communities in Thailand and the developing countries of the region.
Som-arch Wongkhomthong, M.D. Kishio Ono, M.D.

Table of Contents
Page Acknowledgements

1 Chapter 2
Chapter

Summary of the Research Project Results of Literature Survey on the Problems and Strategies for the Promotion of Acceptance and Non-discrimination toward people with HIV/AIDS in the Thai Community".

1-3

"Situation,

4-48

Chapter

Results of the Cross-sectional Community Regarding the Situation of Acceptance and NonDiscrimination toward PHAs in Northeast Thailand.

Study

49-68

Chapter

Results of the Training Workshop for Field 69-79 and Community Volunteers on Community Preparation for Acceptance and Non-discriminatory Practices toward People with HIV/AIDS in the Community. Results of the Expefi Workshop on for the Promotion of Acceptance and Non-discrimination toward People Living with HIV/AIDS in Northeast Thailand.

Workers

Chapter

Strategies

80-87

Appendices
1. Questionnaires No. l, ll, lll (English 2. Questionnaires No. l, ll, lll (Thai

Translation) Language)

88-97 98-108

List of Tables
Page Table
1

Number of HIV/AIDS and Number of Respondents in the Study Areas

56

Table 2

General Socio-Economic Profiles of Villagers and PHA Family Members Acceptance of PHAs by the Villagers and PHA Family Members
Caring for PHAs in the CommunitY

57

Table 3

58-59

Table 4 Table 5

60-61

The Most lmportant Problems for PHAs as perceived by the Villagers and PHA Family Members
Possible Ways for Community Cooperation to Help PHAs as Perceived by the Villagers and PHA Family Members.

62

Table 6

63

Table 7

General Information about People with HIV/AIDS (PHA) in the Survey Acceptance and Care by Family Members as perceived by PHAs
Support for PHAs from Other Organizations

64-65

Table 8

66

Table 9

67 67 67

Table 10 Bonefits from Being a Member of a PWA Group Table

11

The Greatest Problems for PWAs as Perceived by PWAs Themselves

Table 12 Types of Communities to Help PHAs as Requested by PHAs

68

Chapter 1 Summary of the Research Project 1. Title of the Research Project

:

Research on the Promotion of Acceptance of People Living with HIV/AIDS in the Community

2,

Main Researchers:
Dr. Som-arch Wongkhomthong Director ASEAN Institute for Health Development Mahidol University, Thailand Dr. Kishio Ono National Institute of Health Sciences Ministry of Health in and Welfare 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 2000, Thailand will come up with 2-3 million people with HIV and 200,000-400,000 people with AIDS (PWAs). 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 f ind 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 are struggling with the problem.

In 19g6-1997 research activities, the researchers identified the situation, problems and certain strategies regarding acceptance for peoplg with HIV/AIDS (PHAs) in the northern communities in Thailand. However, different parts of the country have ditferent socio-cultural backgrounds. There is a need to conduct the study in other parts of the country to grasp a the more complete profile of the problem. Therefore, in 1997-1998, the study was conducted in Northeast (Esarn) Thailand which has faced severe AIDS problems following the North. The research results will contribute to policy
formulation as well as guidelines for for AIDS in Thailand.

the promotion of community-based

care

5. Objectives 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 Northeast Thai community.

Specific Objectives

5.1 To study situations, 5.2 5.3 5.4

problems and strategies for the acceptance of people with HIV/AIDS in Northeast Thai communities; 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 conduct a workshop of experts to brainstorm important strategies and networks for the promotion of acceptance and non-discrimination towards people with HIV/AIDS in the community; and 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 Methodolog ies

6.1 A survey of literature on the current situation, problems 6.2

6.3 6.4

and toward strategies for promotion of acceptance and non-discrimination People Living with HIV/AIDS (PHAs) in the community; A cross-sectional study of seven selected communities concerning their situations and problems; lmplementation of training workshop for field workers and community volunteers for acceptance and non-discrimination toward people with HIV/AIDS in the community; and lmplementation of a workshop composed of expefts to review the strategies.

7. Research period
7.1

Literature survey from April-August 30, 1997; 7.2 Cross-sectional study of four selected communities concerning the situations and problems during January 1998; 7.3 lmplementation of a training workshop during February 1998; 7.4 lmplementation of a workshop for experts during June 1998; and 7.5 Preparation of the research report during March-June 1998.
8. Benefits of the Research Project :

The research project provides appropriate strategies for the promotion of acceptance and non-discriminatory practices toward people with HIV/AIDS living in the community. The strategies can later be promoted on a nation-wide 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 survey on the acceptance of people living with HIV/AIDS

in the community (see details in Chapter 2);

9.2 A cross-sectional community study in seven selected communities concerning the situations and problems of acceptance of people living
with HIV/AIDS in Northeast Thailand (see details in Chapter 3); 9.3 A training workshop for field workers and community volunteers on community preparation for acceptance and non-discriminatory practices toward people with HIV/AIDS in the community (see details in Chapter 4); and 9.4 A workshop with experts on strategies for the promotion of acceptance and non-discrimination towards people with HIV/AIDS in Northeast Thailand (see details in Chapter 5).

Chapter

II

Results of Literature Survey on

The Situation, Problenr and Strategies for

The Promotion of Acceptance

and

Non-Discrimination Toward People Living with AIDS

in
Thai Northeastern Communities

2.1

HIV and AIDS Related Ethical Principles

It is recognized that socio-economic factors, as well as human rights abuses, are both causes and consequences of this epidemic, its spread and its impact. In these terms, it

is no accident that 90 percent of those living with HIV/AIDS can be found in the developing world, and that within every society, rich or poor, it is those who are marginalized and who suffer a lack of human rights protection who are the most
vulnerable to HIV/AIDS.

Ethical principles as guidance to the international, national, community and individual in response to HIV/AIDS (UNAIDS, 1997)

Compassion requires that people respond to the suffering of others, including

those with HIV/AIDS, with sympathy, mercy and a willingness to help.

Solidarity requires that people come together to respond to the suffering, as well
as the injustice, caused by HIV/AIDS,

Responsibility means that every individual, community, institution and nation must act responsibly towards HIV/AIDS to prevent its spread and to care for
those infected and otherwise affected.

Tolerance requires respect for the equal worth, dignity and autonomy of people
affected by HIV/AIDS, including those with different beliefs, opinions, and life
styles.

All individuals and communities should have available to them the information necessary to make good and necessary decisions about their health, including

how

to avoid Hlv

infection with H|V/AIDS and how

to cope with its

consequences,

Empowerment All people should have the ability to protect themselves from infection by being
able to refuse unsafe sex and to cope with HIV/AIDS if they or someone in their

family

is

infected. These are ethical principles that should guide policy

formulation and implementation in HIV/AIDS health policy.

Wel l-bei ng/Benef icence

HIV/AIDS policies should be designed for the general good, and the benefits of

the proposed policy should be weighed against the harms. There should be no
infliction of harm on people, including those living with HIV/AIDS or suspected of
it.

Equity/Distri butive J ustice

The burdens and benefits of HIV/AIDS policy should be distributed equitably

among the population. No groups or individuals should be discriminated against

in the context of HIV/AIDS. All people and groups should be treated fairly and equally and have equal access to available information, prevention methods,
treatment and research results. Respect for Persons
Individuals have the capacity and right to make choices and decisions about their bodies. personal integrity, and actions as long as do not diminish rights of others. Aid should be free from unjustified interference by others. including in the context

of HIV/AIDS. People of diminished autonomy who are dependent or vulnerable

should be protected against harm or abuse.

Confidentiality
People have a right to keep confidential any information which is highly personal and the divulgence of which could be detrimental for them, including information

about their HIV/AIDS status, Professional ethics requires that professionals (lawyers, health care workers, insurance, social workers) maintain strict

confidentiality concerning all personal information obtained from clients in the

context of their professional work.

Obligation to Treat
Medical ethics requires that health professionals must treat, to the best of their

ability, all persons seeking their medical attention without discrimination and
without prejudice based on the origin or nature of the patient's illness, including
HIV/AIDS.

Informed Consent
Respect for the integrity and autonomy of the individual means that informed

consent should be obtained before the administration of medical tests, drugs,

treatment
HIV/AIDS.

or

participation

in

research, including those that are related to

Elements of lnformed Consent

The individual must be a competent individual who has the capacity to make
decisions. S/he must have received all necessary information, and arrived at a

decision without coercion, inducement or intimidation.

measures or authorized representatives.

lf s/he does not have

capacity to give free consent, s/he should be protected by supplementary

Information Essential to lnformed Consent The individual must be a competent individual who has the capacity to make
decisions. S/he must have received all necessary information, and arrived at a decision without coercion, inducement or intimidation. lf sihe does not have the

capacity

to give free consent, s/he should be protected by

supplementary

measures or authorized representatives.

lnformation concerning HIV/AIDS testing, treatment and research should be explained

in a

language the individual will understand.

All benefits, risks, problems

and

I
altematives should be fully explained. No information should be withheld that would cause a reasonable person to refuse. The person should understand that they are free

to

refuse and/or withdraw

at any time without penalty' The

degree

to

which

confidentiality can be maintained should also be explained to the person

2.2 Supporting Systems

2.2.t Groups for people with HIV and AIDS in Thailand

W1h the AIDS epidemic in Asia being most advanced in Thailand, the number of groups of people living with HIV and AIDS (PWA) that have sprung up in this country is

correspondingly the greatest in the region. These groups concentrate on care and support-physical, social, emotional and financial-for those affected by HIV and AIDS.

Their activities typically include operating hotline services, raising funds, training caretakers, running buddy services, and a range of other support and prevention activities. Many also seek to raise the visibility of people with HIV and AIDS, and
campaign for human rights.

The greatest concentration of Thai PWA groups is in the northem region, where the epidemic has been most severe. There are some 37 support groups here, the largest of
which is New Life Friends, with a membership close to 3,000. Other organizations here
include a women's group and a widows'group. Bangkok comes second in terms of number of groups, currently around

ten. The first

PWA group in the capital was the Wednesday Friends' Club, set up five years ago in
Chulalongkorn Hospital under the auspices of the Thai Red Cross. lt now runs a regular drop-in venue, the Bodang Center, nearby.

The northeastern region, centered around Khon Kaen, comes next, while the southern
region-where there are fewer infected people, and which is probably also the country's

most conservative region-has yet to start

people exist.

a PWA group, although individual contact

At the Asia-Pacific AIDS conference in Chiangmai in September 1995, Thailand's PWA groups came together and agreed to form the Thai National Forum of People Living with HIV and AIDS with branches in each of the four regions.

(AlDSWatch, News from WHO South-East Asia Region on STDs and AIDS, Vol.
Number 1, October 1996)

THAI NGO COALITION ON AIDS

In 1989 the Thai NGO Coalition on AIDS (TCNA) was established. The coalition has 107 member organizations (1998). The Countrywide distribution is as follows: Central region 37, northern region 40 and northeastern region 30 members. At present the
TCNA does not have a southern regional group. The coalition's objectives are as
follows:
* *

to promote the efficiency of NGOs working on AIDS; to promote collaboration among AIDS NGOs and Government Agencies;

* to collaborate with Government to solve AIDS-related problems through studies,

recommendations and evaluation of policies and procedures;

* *

to promote an informed understanding of AIDS in Thai society; and to promote and support protection of the rights of people with HIV/AIDS.

The activities of the TNCA include providing member organizations with academic
services and information, as well as funding possibilities. The TNCA also holds regional

seminars, workshops or training programs on AIDS. Most of the NGOs working at the community level complain of shortages of staff and funds as a hindrance to extending their programs to include AIDS activities. The TNCA invites them to national seminars

on AIDS to become more knowledgeable on these issues and to establish possible sources of funding. For the northeastern provinces, the infrequency of TCNA meetings
(2-3 per year) and the lack of funding are considered major constraints in the networking of the HIV/AIDS NGOs.

10

Member organizations must be NGOs that have initiated AIDS activitles and have experience in social or community development in Thailand for at least one year. They
should be ready to provide education on AIDS to personnel or other private people in the organization, as well as support and participate in the activities of the TNCA. They
must also be recommended by at least three member organizations and be approved by

the management committee.

Once setected, member organizations are expected to appoint one representative to participate in the general meetings and

a second representative to serve on the

management committee of the TNCA. Participating organizations have the right to elect

the management committee rnembers and to propose topics for discussion in the general meeting. They should also participate in activities or any services that are
organized by the coalition and organize "special" events if requested by more than half
of the members. They should also comment and give recommendations on the work of the coalition.

Member organization will be disqualified if they do not meet the qualifications outlined

above, when members

of

organizations

or

management committee consider the

organizations not qualified or they resign. Those organizations, which do not send a representative to attend the general meeting for two consecutive years without prior
notice to the coalition, will also be disqualified.

The general meeting is held every year and member organizations are intort"O on"
month ahead of time. During this meeting, the management committee reports on the financial status and results of activities carried

out. TNCA has two full time staff

and

according to the manager " The problem is that members have no time to help TNCA

because they have their own activities but we can

do nothing either without the

assistance of participation members and need their assistance".

Acceptance and inclusion of NGOs in the national fight against AIDS has resulted from

the realization that they complement the activities of the government. The two sectors,

11

with their divergent approaches in community development and organizing, can be

integrated to produce an effective program. Despite the government's seemingly "open"

attitude towards them, NGOs complain

govemment. Collaboration,

of problem areas at the working levels of they lament, is often characterized by the government

dictating and directing the undertakings of the partnership. The govemment has also been ambivalent to funding their projects. lt takes up to two years for the authorities to respond to their proposals and, if funding is eventually provided, the respective NGOs
receive a third or half the requested amount. Furthermore, funding is provided for one year at a time, keeping NGOs in the dark over continued funding for the duration of their

projects (Dares, personal communication, 1995). In the light of the current economic
crisis continuation of funding is uncertain.

Although forums to share ideas are organized, information flows one way, from the government to NGOs, and the latter regard them as a waste of time. The perception of some NGOs is that the government does not genuinely want to consult with NGOs and, in the final analysis, will not consider NGO views or input, especially if they differ from the government's views.

The government, on the other hand, professes difficulties due to the alleged lack of
information on NGOs, how they operate and how they can complement government

efforts. According to one civil servant "We still do not know how many NGOs are
working on AIDS because not all are registered and even those that are registered do
not send us any information about their work" (Viranya, personal communication, 1995).

Many NGOs have organizational defects stemming from

experienced workers.

a lack of professional

and

As one Thai activist puts it, "Most NGOs are organized and administered in a rather unsystematic and amateurish way, not conducive to the development of their workers and the organizations themselves. Information and experiences gained in the work
often go unrecorded, Scientific methods are lacking in the followup and evaluation of

12

work, and in the collection and analysis of data. Administrative structures and division
of duties are often clumsy and inefficient."

NGOs must deal with the same issues that face all organizations. They need to design
programs that respond to priority needs of the community yet are within the capability of

the NGO to sustain. They also need to organize themselves to carry out the
programmed activities and to monitor and evaluate the effectiveness of their activities.
At the same time, its very size, its financial insecurity and often the lack of management experience among the staff and volunteers, can threaten the survival of the NGO.

Inspite of all these problems, many believe that the government appreciates NGO
efforts and values its links with them since they provide useful access to the views of the

people. They have deep roots within the communities they are serving and are often
staffed by individuals who have strong commitment to their work. They are often able to

gain access to a variety of different groups and can respond more flexibly than governments to their special needs. Their size and relative informality also make it
possible for them to act in ways more difficult for the slower-moving bureaucracies of
the government agencies.

Women Aqainst AIDS

Women Against AIDS has grown up recently to meet the needs of rural Chiang Mai
women living with AIDS and caring for spouses with AIDS. lts primary aim is income generation for the women whose main source of household income is lost when their
spouses or they themselves succumb to AIDS. They produce handmade goods for sale

that the WAA director finds markets for throughout the world. They also have action
groups to prevent the spread of AIDS in their villages.

Temple Hospice Phra Phongthep Dhammagaruko has set up a temple hospice for AIDS patients
in

Chiang Mai. Called Baan Puen Cheewit, the hospice helps poor AIDS victims who are

13

left by their families. lt also gives training to willing family members on how to properly
take care of AIDS patients.

Mothers with AIDS

Nipa is among an increasing number of Thai women who have contracted the HIV virus

from their husbands. The Thai Red Cross Society has also initiated a project to provide HlV-positive pregnant women a free course

of

AZT, which will dramatically reduce the

newborn's chances of getting HIV from their mothers.

AIDS Orphans

By 2000, Thailand will have over 120,000 AIDS orphans. The Sem Pringpuangkeo
Foundation appeals to the general public to sponsor the AIDS orphans' education by donating 3,000 to 5,000 baht a year for small children. And 4,000 to 6,000 baht a year for older children.

HIV/AIDS Self-help Groups

People with HIV/AIDS are organizing themselves to help one another but they receive
little help from society. The Life Giving Life Group now takes care of over 200 patients in Chiang Mai and Lamphun.

H|V-positive Babies
The Agape Home in Chiang Mai is showing how love and care can make a difference in

the lives of H|V-positive babies.

14

2.2.2 Social support networks of confidants to people with

AIDS.
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 befier health outcomes, better morale, and more successful coping with the physical and emotional demands of a health crisis (Cohen & Syme,
1

985).

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 buffer 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 People Living with AIDS (PLWAs) confidants. Confidants vividly described factors perpetuating inadequate support as

of reciprocity in relationships, increased responsibility, geographic relocation, and fear of rejection. Health care and social seruices professionals can play a critical role in providing necessary support to the confidant
secrecy, stigma, burden, lack
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
unsuppotted during the illness process of the PWA may be placed at further risk for

psychological

and physical complications. Factors constricting support may

be

sustained after the death of the PWA, thereby complicating the bereavement process
and adaptation to the loss.

15

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 a trusted

- all of these interventions help the confidant and PWA feel less restricted and better able to use others for support. Confidants and PLWAs who have successfully disclosed and established supportive networks may be willing to discuss their experiences and
individual could be told, and using community resources for networking
strategies with other confidants and PLWAs individually or in a group setting.

Leading confidant support and bereavement groups can be another important role for social workers. Because patterns of disclosure may be established during the illness, a

suppoftive 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.

Nutrition and Food Safetv

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 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 mortality.

The Recommended Dietary Allowance (RDA) is the accepted national standard for
evaluating nutritional adequacy of diets for the healthy population, but not for evaluating

diets of the chronically ill (27). The energy, protein, and micronutrient density of homedelivered meals for persons with HIV/AIDS should strive to meet at least 1007" of the

16

RDA, 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 estabtished.

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 served, meal programs may need to provide culturally appropriate meals to meet the ethnic food preferences of AfricanAmericans, Latinos, West lndians, 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 Campylobacter jejuni (30). People with GD4 cell counts below 150 cells per cubic millimeter are at greater risk for contracting protozoal infection

from Cryptosporidium parvum through unwashed food and unfiltered water (31). Meal programs need strict food-handling procedures, pafticularly when training volunteers to
assist with meal preparation.

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

17

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 importance 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 served has a threefold benefit: cost-effectiveness, efficiency, and
confidentiality.

2.3.1Care 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

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

discriminating against them, refusing

critical:

communities cannot 'care'for individuals in the truest sense while simultaneously

to associate with their families,

sending

18

their children away from schools and refusing to acknowledge the existence of 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.

2.3.2 Symptomatic and Palliative Care

Concepts of Family Care for People with HIV/AIDS

The family is the smallest social unit, but it has the most important role in shaping people's behavior. lt is a fundamental institution with the strength to support its
members during

crisis. Stable

relationships help the family

to adjust and

maintain

stability when facing problems, such as poverty or illness. On the contrary, the family

will be less empowered

if relationships within it are fragile and full of conflict.

Eventually, a family faced with such difficulties may breakdown.

There are three main guidelines for social workers to follow when working with families
in crisis: 1. Provide counseling;

2. Build up behavioral/life skills, learning and training skills of service users so

they can adjust themselves to the changing society; and

3. Develop practical services.

To maintain family stability, seruice providers should have good understanding of the
value and principles of the service as well as the principle of family empowerment.
These principles are based on the family's self determination, acceptance and respect,

flexibility, teamwork, acceptance of diverse religious, cultural and traditional backgrounds, maintaining family integrity, and accepting commitments. To achieve

19

these, service providers must establish faith and confidence through professional relationships with service users, and provide practical services, This process has to be
ongoing and sustainable.

Family service can be developed at three different levels:

1

Fami! Resource/Support/Education

This means that basic suppoft should be provided for parents in their reproductive age so that they have a better understanding of their roles and responsibilities as parents.

2.

Family/ Home-based service

This is the service provided for less competent families who may need counseling and other support such as education, employment, or protection of children and family

rights, Family/Home-based service may be particularly suitable for a family prone to

have problems.

3.

lntensive Family Preservation Services

These are services provided for a family in crisis,

Services for people with HIV/AIDS are focused on family-based seruices and intensive family preservation. Those diagnosed with HIV/AIDS may face emotional or mental

crisis and may want to keep the news of their HIV status from their family. In this case, crisis counseling/individual treatment is needed. For pregnant women, their HIV status
may be revealed when they attend antenatal clinic. Marital counseling or family therapy

can be provided to reduce the family crisis and help build up family strength. After spending some time to adjust to the news of HIV infection, the family will have to begin thinking about duties towards their child. Most parents hope that their child will

not be HIV infected. While waiting for the child to be tested, usually at the age of 18 months, the parent's health may deteriorate. They may not be able to keep their jobs
and generate the same amount of income. The family will go through many changes in order to preserve both their own and their child's health. A family will need somebody

20

they can trust to give them advice and moral support. This is the time when family's stability is critical. While the exact time of the incubation period is not known, the
strength and empowerment of the family and their ability to make proper decisions is
necessary if the family is to achieve self-reliance.

A study by Jitra Jaroenpatarapaesut "The social support for the family of people with
AIDS: Case studies of family of people with AIDS at Bamrasnaradura hospital" reveals

that of 100 family members visiting patients at the hospital, 67 percent are female

relatives. Sixty-three percent of family members who supported and took care of patients are their own partners (married or living together), Relationships within the
patient's family were moderately supportive. Family members gave moral suppon,
acceptance and understanding, and a feeling of importance to patients. Relationships between patients and their families may have deteriorated after HIV/AIDS diagnosis, however, the family still looked after the patients. In general, families of people with AIDS feel satisfied with caring for the patients at home. Family members continued to participate in family activities together, such as taking the person with HIV/AIDS to see

the doctor. The decisions or ideas of people with HIV/AIDS on family issues still
counted.

The expenses of PWA family included medical fees and travel fares. Those living

in

rural areas with poor economic status faced increasing expenses and some families

found it difficult to bear these. Moreover, the family also faces the loss of income
previously coming from the patients. The family therefore faces increasing expenses while their income is reduced. Families facing such a situation may have to rely upon

the hospital social work unit for reduced medical fees or for counseling. Most families
would like to keep from the community the fact that there is a person with HIV/AIDS in
the family, for fear that they will not be accepted by their neighbors.

John Stems who has had extensive experience in family and community-based care for
people with HIV/AIDS commented that the definition of family or community-based care

21

for people with HIV/AIDS is that it is a seruice implemented to enable patients to

continue living with their family and the community.

The service model may include:

1. Health care service; 2. Counseling service; 3. AIDS education service: 4. Support service for basic needs;

5. Rehabilitation seruice such as providing education, 6. Protection of the rights of people with HIV/AIDS.

job training etc, and

The service model should include one or both of the following characteristics:

1.
and

Service should be provided in small communities where people with HIV/AIDS live

2.

Support should come from the community.

In Zambia, the Chikanta Hospital provides a mobile home seruice, which covers several

smallvillages. The hospital remains the center of all services and is responsible for vast
areas of work.

Another community project in the U.S. is in the form of hospice care, run by the Zen Religious center in Sam Francisco. The project has turned many small houses into hospice care for people with AIDS in Northem Califomia. The project receives support from the local community where the project is situated and also from the community of people with HIV/AIDS.
In Thailand, the problems of implementation of family/community-based care are similar

to other countries, in that services can face fear and discrimination toward people with HIV/AIDS. Patient outreach is difficuft since they are reluctant to disclose their HIV
status to the public. On the other hand, project staff have to risk conflict with the

22

community. These are major obstacles in implementing the community care project
Thailand.

in

John Sterns also states that not involving the community in project activities will result in
patients being isolated from the community. This may lead to a lack of proper care and

support for patients. Projects based on this concept are lead to a lack of proper care

and support for patients. Projects based on this concept are more practical and are

more cost effective

if we consider the increasing numbers of people with HIV in

Thailand. Moreover, treatment and care centers, which are not decentralized, will prevent the wide availability of services. lt is also highly unlikely that health centers in
urban areas will be able to take all patients into their care.

Taking this into consideration, family/community-based care is crucial for Thailand.

However,

a lot of Thai communities are still not ready and fully prepared for such

project; due to fear and discrimination toward people with HIV/AIDS, lack of funding and personnel.

Family/community-based care
common characteristics:

in Thailand and other countries appears to

share

1. AIDS education to help people understand how HIV can be transmitted/prevented,

and to change discrimination towards people with HIV/AIDS;

2.
3.

Providing access to services, information, and employment to people with HIV/AIDS and their care-givers; Participation in the care project by care-givers;

4. Extending the network of service, and disseminating project information; 5. Training in provided on health care information, HIV/AIDS counseling and social
support;

6.

Providing support on basic necessities for home care such as medicines, detergents and disposable equipment; and

23

7.

Providing halfway house or hospice care for people with HIV/AIDS who cannot
receive care from their own community or any other seruice centers.

Training on Home-based Care for People with HIV/AIDS

The village health campaign group can begin to educate people by choosing staff to
implement training on home care for PWAs.

Provincial hospitals should have medical information on equipment necessary for home

care, so that plans on how to provide care can be made. Patients may be brought to

the hospital for check-ups and treatment every two weeks or doctors/nurses can visit
patients on a monthly basis.

In Chiangmai, women whose husbands have died of AIDS have formed a group called
"The Widows' Group". The group, centered at the Doi Saket Temple has 57 members.

Its aim is to provide suppoft to mothers and children with HlV. The group leader,
Boonruang Phuphaenna, said members meet monthly at the temple to have lunch and give each other moral support. The social welfare unit of Maharaj Nakorn Chiangmai

Hospital supports the

group. Members receive free check-ups at the

hospital.

However, what members want most is quick and accessible service for people with HIV/AIDS in the community, which can happen by decentralizing services to remote health centers. The Widow's Group also has plans to provide occupational training for

housewives and has written

(WAPAC).

a proposal for funding for Thai-Australian

Program

Basic Concepts of Home-Based Care

The concepts of home-based care as the Living with AIDS project has conceived them
are:

1.

Home-care is the most important kind of care, which helps provide stability for

person and their

family. lt can

become the catalyst for changes in

attitude/belief/behavior within the family and the community;

24

2.
3.

Home-care is the most appropriate kind of care and is an important resource,

Home-care is worth investing in since it will prevent family breakdown,

which can be expended into a community resource for HIV/AIDS prevention; and

Initial goals:

1.

To provide basic practical and initial support for people with HIV/AIDS;
To educate families and communities about HIV transmission:

2.
3.

To utilize the strengths of the family unit, through education, and support to
keep the family together;

4.

To enable individuals to support themselves and be care for by their family

with minimum support from Christian Outreach after initial contact;

To educate individuals and families in care procedures for people

HIV/AIDS; and
6. To keep all case matters strictly confidential.

with

Guidelines for support of HIV/AIDS Affected Mothers and Children HIV infection among mothers and children is increasing. As such, services given to
these people should be systematized. Christian Outreach has planned services for HIV-

infected mothers and children as shown in the

chart. Initial seruice begins when

providing support during pregnancy and giving education, counseling and psychological

support as needed. After delivery, women will get support during their stay in the hospital until they are discharged and go home. This is emphasized in the case of
single parents. Support giving during this period usually concentrates on health-care information for both mothers and their babies. When the babies are old enough (18 months), staff will encourage mothers to take the babies to the hospital for an HIV

lf the baby is HIV positive, it will develop AIDS and die within two to three years. lf the baby is HIV negative, and the mother's health is deteriorating, help
will be provided for the baby to be cared for by others such as relatives, respite family or other social welfare departments.

antibody

test.

25

Support seruices for H|V-infected mothers and children will be varied according to the

needs of the family receiving the service. These services include counseling, moral support, initial support such as baby milk, job support, and future plans for family
members.

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 workers accordingly. However, during a majority of contacts between health staff and people with HlV, both are unaware of the patient's HIV status. lt is critical, therefore, to

train front-line workers to ensure that in general curative consultations, their decisionmaking algorithms take HIV/AIDS related symptoms and signs into account.

Cost-effectiveness
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 costetfective on its own, is the point. Home care should be pursued, not as a way to divert

26

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 worth 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 five minutes per patient

care, and two hours in a jeep for the care provider to get there. Alternative models need

to be examined for cost-effectiveness.

2.3.3 Community-based Care for HIV/AIDS Patients

Acceptance of people living with AIDS is strongly conelated with the acceptance of community and Home-based care. Every year throughout the world, and particularly in Asia, an increasing number of

people are affected by the HIV/AIHD (human immunodeficiency virus/acquired

immunodeficiency syndrome) 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 under 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.

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

27

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 live 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. 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 cr 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

of people with AIDS. People are frightened or ashamed to admit that they have
of care to involve families in learning about or providing care at home.

person with HIV infection or AIDS in their home. This can make it difficult for providers

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

28

persons 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 is useful in 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 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. lmpoftant considerations

in

developing such programs include

selection of services, monitoring of quality control and patient satisfaction, availability of staff 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

29

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).

2,3.2 Home-based Care Home care relies 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 knowledge, experience or ever had a 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 the dynamics are added the picture.
People with AIDS and their families are suffering from the stigma, which frequently found in communities and health care facilities.

The most important element in home-based care is the readiness of families and
communities to provide care for persons with

AIDS. ln early stages of the

epidemic

(when few people are noticeable sick) there is often a high level of stigma, fear and lack

of acceptance of people with AIDS. People are frightened or ashamed to admit others

who 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).

30

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 toward caring for person with AIDS is likely to become more positive. Home-based
Care is often best way to look after someone with AIDS (AHO, 1994). They are many
reasons to establish Home-based care for AIDS.

Good basic care with the most nurturing and flexibility can be given

successfully at home, as it enables the ill person to be as active and productive

as disease allows;

People who are very sick or dying would often rather stay at home especially

when they know they cannot be cured in hospital;

Being in their homes and communities comforts sick people with family and

friends around;

- Relatives should be able to carry out their other duties more easily when caring
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 message about

AIDS prevention, both in families and in communities.

Basic Concepts of Home-based Care

1. 2. 3.

Home care is the most important kind of care, which helps provide stability for a

person and their family. lt can become the catalyst for changes in attitudes,
believes and behavior within the family and the community.

Home-care is the most appropriate of care and is an important resource, which

can be expanded into a community resource for HIV/AIDS prevention. Home-care is worth investing in since it will prevent family breakdown.

31

Home-based care

is by no means a panacea.

Home-based care has often been

advocated as a means for decongesting hospitals overburdened by HIV 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 on

travel 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,

be much cheaper. ln Zambia, lay persons connected to churches provide care to chronically ill people at very low cost. lt is important to look into these spontaneous, grassroots-initiated care proposals which
community-initiated home care may
build on local capacities and resources.

2.3.3 Day Gare

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. In 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 forms of institutional care away from homes -- including nursing care, day care, psychosocial suppoft

may well prove to be more cost-effective than home-based care alone. day-care

In Northern Thailand, districts have organized, in addition to home 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

32

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 either choice work for those needing
care and for their families.

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-patients beds available their use is usually limited to short period for respite care and symptom
control.

Hospice Care for Full Blown AIDS Patients in Thailand.

This center provides health care and counseling for people with HIV/AIDS. This should
be a small service center with 10-20 beds and can be located at the community temple

or on land donated by members of the local community. Patients will be admitted on a three to six month term and should be those with full blown AIDS who cannot receive care from their own community or other health service centers. Case referrals can be

through hospital or regional social welfare offices. Cooperation with the community should be through project volunteers. Group members, GOs, NGOs, or the local
community should take part in community education. The project should be consistent

with the service provided at the hospital, while the local temple can take part

in

arranging funerals. The central organization should be responsible for statf training.

The hospice care seruice should not be restricted to people with HIV/AIDS only, but
should also admit people suffering from other illness.

The major appeal of hospice care is 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

33

spiritual care (Ungvarski P.J., 1995). Quality of life issues need

to be

considered

carefully and should be highly prioritized for terminally ill and dying patients. Although

most health care professionals have formally studied death and dying, few hospice
experts have, especially in pain control. Today the needs of the HIV/AIDS patients can
be more appropriately described as a continuum of care for chronic illness.

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 individuals 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

eltending 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 AIDS-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.

34

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

1

in

993.

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 service would help bridge a gap between me and the community so
could teach them dharma more effectively," he said.

Religion/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 etfectively. tsut 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 12 patients, and all beds are usually full. Sadly,
when one patient dies, there is no shortage of people waiting to fillthe 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

35

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
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 spofis 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 otten 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've resolved

to know more about this disease so that I can 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 caring for AIDS patients, he says he can now give a basic diagnosis and prescribe medicine for minor ailments. 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.

36

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."

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 to caring for them.

"l tell the 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 their family share the same living quarters, doing things together as if they were at home. Family members with jobs work during the day and return 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 communities.

"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 leam 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.

37

"l think what the AIDS patients need most is Iove, 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."

2.4Ptevention

In 1989, the Royal Thai Government 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

institutional

leaders. In August 1991, the National AIDS Committee approved a government plan to imptement the 100 Percent Condom Program in atl of the provinces. Govemment 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. As
mentioned earlier, care and prevention for HIV/AIDS should be addressed concurrently.

2.5 Knowledge

2.S.LKnowledge and Behavior about

HMAIDS.

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 right 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

38

quality of these programs is all important in developing healthy behavior in order to

reduce transmission of HIV and other STDs."

"The most important conclusion is that failing

option."

to

provide appropriate and timely

information to young people for fear of encouraging sexual activity is not now a viable

A review commissioned by the Joint United Nations Program on HIV/AIDS (UNAIDS):

evidence indicates that sexual health education for children and young people promotes safer sexual practice 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 motivating behavioral

change. lt has been noted that individuals tend to underestimate their own vulnerability,
operating under

a "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 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 with 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.

39

The etfects of the pandemic are of great concem. The quality of life for an increasing number of HIV 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 stigma on account of thg HIV status or suspicion of
HIV status. Forms of discrimination towards HIV infected persons and/or their relatives

are: discriminatory legislation, discriminatory practice by public authorities or private

organizations and discrimination by communities, families and individuals.

2.6 Risk perception

A lack of risk

perception, which allows risk behaviors, is attributable

to inadequate

interpretation of knowledge on HIV/AIDS and its pievention. A ndtion-wide suruey found

that almost all respondents had heard or known about AlDg but only, one-third of them

had correct knowledge on its communicability and treatment (Thongthai

and

Pitakmahaket 199a). The Thal 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)

1996). Among Thai adolescents, onethird 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 participants in the focal group discussion identified HIV as the only STD (Fongkaew 1997). On the contrary, a recent study focusing on female students and factory workers in Bangkok suggested that 100% of
students and 91.6 percent of workers believed that those who have multiple sexual
partners will contract AIDS infection. Hence, the vulnerability of AIDS risk is i'erceived 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 pre-marital sex which is recently becoming a common practice
among females. Usually, male adolescents initiate their sexual intercourse earlier then

females. The relevant survey shows that 61.3 percent of males experienced their first
intercourse bythe age of 18, whereas only 19.7 percent forfemales and mostly after

40

marriage (Sittitrai et al.

19P).

Notwithstanding, another study suggests that pre-marital

sex among females is becoming more common: more than 90 percent of males and 30 percent of females (47,0 percent in urban and 17.2 percent in rural areas) had first intercourse before marriage. This is caused by

a recent behavioral change that a

relatively large number of rnales have their lover or fiancee as a first partner, partly due to being aware of ths risk of having sex with CSW's (Podhisita and Pattaravanich 1995) but they tend to refnin from using condoms with their lovers (Bhatiasevi (a) 1996). The probability of ,{lV infection is largely dependent on condom use because condom is the only means cf 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 reported 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. The condom is perceived to be used with CSWs in order to prevent
STD/HIV 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 cf an HIV infection in adolescents'sexual relationship.

2.7 Behavioral changes

Sexual behavicr 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 anC 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 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.

41

Behavioral scientists view behaviorchange as a five-step process. The first step is precontemplation. This means that the person does not consider a particular behavior

(e.9., unprotected sexual intercourse) to have a personal 6sk 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 )ut has not yet slarted. 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 untler all circumstances. People move through these

stages at different speeds.

lt is irnportant to understand that behavior change is a

stepwise process and to recognize he stage of a particular individual. Counseling, as opposed to education, must be tailond to the persons stage of behavior to best help
him or her to move to a laterstage andeventually to maintenance.

2.7,1 Behavioral Change in Supprrtive Environments By encouraging changes in cultural attitrdes, social norms, and government and
institutional policies, behavior change communication (BCC) campaigns can help create

an environment that supports individual Hl/ risk reduction. Therefore, many

BCC

interventions are aimed at policy makers, religious leaders and influential community members. Although conventional wisdgm reminos us that information is not enough to help people change behavior, in the policy arena carefuily presented information can

be the key to changing the thinklng and actions of decision-makers. Workplace managers may need to know about the projected fnancial costs of HIV/AIDS among workers to be convinced to support workplace prevention pr?grams. Politicians may
need to hear about the long-term effects of a duty tax on,imported condoms before they

are willing to devote tgsourc,gs to AIDS prevention. And teachers and parents many need facts about teenage sqxuality to help them see the need for HIV/AIDS prevention
programs in schools.,lgail, it is the cornbination of art ard sciencethat makes for an

etfective BCG 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. Skilfful communication is an important part of the policy process.

2.8 Social norms and values

Human Rights Tragically, abuses of human rights suffered in the context of the H|V/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 hvlAlDS Key rights are the rights to information, education, health, and non-discrimination These righlg have always been imperfectly realized with tragic

consequences' Now, wiih the ptesence of Hlv, failure to protect them becomes even more life threatening. only throulh the protection of these rights will people have access to information and educatior about.Hl/; to the means of prevention, such as condoms and health servicesl and to 6r environnrent supportive of behavior change. To the degree that'$overnments, as well rs social rnd religious mores, limit access to these, then vulnerability to infefiion is inc"eased, and the right to life put in jeopardy. This is true for all people, but especially for VUrrerable rnd marginalized groups who are bearing, the brunt of this epidemic:'Such grouye include women, children, minorities, indigenous peoples, refugees, homosexuals, se, worke.s, drug-users and prisoners. The discrimination they already face in access tc educaion, health care and social support renders them part'cularly vulnerable to Hl'AIDS. Beyonu. access to HIVinformation and means of protection, the protection rf hurnan rights is ssssnlial to enable people already,infected by HIV ard their famlss to cope with the in.pao or HIV/AIDS. But widespread discrimination due to HIV setus makes it impossible for those affected to provide for themselves dnd to contributt to therr communities. such discrimination denies those living with HIV not only their dignity hut also their rights to

43

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 and 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;

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

establishing appropriate governmental institutional responsibilities,

implementing law reform and support services and promoting a supportive environment for groups vulnerable to HIV/AIDS and for those 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, injecting 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

44

within their specific political, cultural and religious

contexts;

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-govemmental organizations, including networks of people living with
HIV/AIDS, play critical roles in this regard.

Discrimination
Of course, not all suffering is physical in origin. Suffering has psychosocial roots as well. Discrimination of 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.

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.

The AIDS CARE VOLUNTEER NETWORK BUILDING project was evaluated after one

year of operation. Dissemination of knowledge and information, particularly the core

concept of the project reached more than 40.000 people. The Information Network was
spread through various strategies and methods. The Network of volunteers, made up of

close friends, acquaintances colleagues and neighbors, was very important and contributed to the expansion of the knowledge and understanding of PWAs and the
core concept of the project.

45

There are however a umber of people who cannot accept the truth about AIDS or HIV or accept PWAs living among families and communities. Thus it is still very necessary to
continue working in order to influence these people".

AIDS Stigma
In a paper on AIDS stigma and contact with persons with AIDS: effects of direct and
vicarious contact, Gregory M. Herek; John P. Capitanio found that: direct contact with a

PWA was associated with less support for coercive AIDS policies, less blame for
PLWAs, and less avoidance of PLWAs. Vicarious contact - operationalized as the selfreported 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 Journal of Applied Social Psychology, Jan 1, 1997 v27 n1 p1 (36)

high

levels of stigma. In that group, levels of stigma diminished somewhat to the extent that

Access of the Immediate Family to Results of HIV Testing

People living with HIV/AIDS (PLWAs) 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
subsystem and

all

respondents, But PLWAs are hesitant about the disclosure of information to the marital

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)

Evaluating Community-based AIDS Prevention Projects

In an article for the American Public Health Association of Nicholas Freudenberg and
Marc Zimmerman it was stated that

" Measuring changes in risk behavior and

health

status are beyond the capacity of most community organizations".

46

Community organizations can play an important role in AIDS prevention. Yet precisely these organizations that have

it

is

the greatest difficulty in evaluating their

program. They often lack expertise in evaluation and are suspicious of diverting any resources from seruice 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 lett groping for a way to assess the impact of their interventions.

47

Bibliography
1. AIDS Gare volunteer network building. Institute for Population and
Mahidol University, 1997. Research,

2. AlDSWatch, 1996. News from WHO

Vol. 1 Number 1, October 1996.

Southeast Asia Region on STDs and AIDS,

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. Winston & Son Inc.1991;32(9):967-80.
in

5. Bussaba Rujjanavet, Doungsamorn Chinchotikasem, 1995. NGO Activities

Thailand, Asean Institute for Health Development.

6. 7. 8. 9.

Delaney MG; Forrest K; Mellors S, 1995. GNP and ICW annual meetings, AIDSLINK Mar-Apr; (32): 1,3 1995.

Freudenberg N. and Zimmerman M., 1996. AIDS prevention in the community.

Lessons from the First Decade. American Public Health Association.

Gumaru O., Mahidol University, 1996. Knowledge and attitude in accepting home
based care in Nakhon Ratchasisma, 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 Psychology, Jan 1, 1997 v27 n1 p1 (36).

l0.lchikawa M., Mahidol University 1997. Gender differences in HIV related sexual
beliefs and safer sex intentions among vocational students in Bangkok Metropolitan.

ll.Jankowski S,.et.al., 1996. Social support networks of confidants to people with

AIDS. National Association of Social Workers Inc. 1996.
12. KAS

Newsletter. 1995 Nov-Dec; 4. Advocacy update. Past, present, future.

13.Kohi

TW;

Horrocks MJ, 1994, The knowledge, attitudes and perceived support of

Tanzanian nurses when caring for patients with AIDS. lnternationaljournal of nursing studies. 1994 Feb; 31(1): 77-86.

14.Kraak Vivica Ingrid. 1995. Home-delivered meal programs for homebound people
with HIV/AIDS. Journal of the American Dietetic Association, April 1995 v95 n4 476.

48

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. Ministry 17. Ministry

of Public Health Thailand. AIDS Division, National statistics 30 April 1998.

of Public Health Thailand. Division of Epidemiology. Weekly epidemiological

surueillance report 30 April 1998.

lS.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; (171:2-4.

19.Muma R.D. (1994). Manual for health Care professionals. Page 246-247,696.
20. Phra Phongthep Dhammagaruko, 1996. Friends for life home.

21.Pizzi M.; Johnson J., 1995. Productive living strategies for people with AIDS,
Harrington Park Press.
22.

Ryan, Caroline A. et.al. "Explosive spread

of HIV-1 and sexually transmitted

diseases in Cambodia". Research letter Lancet 04118198 vol. 351, No. 9110, P1175.

23.Som-arch Wongkhomthong et al. AIDS in the developing world. ASEAN Institute for
Health Development, Mahidol University, Thailand 1995.
24. Supit Sastrasingha, Nongluk Aimpradith 1996, Family care for people with HIV/AIDS,

Unicef Publication.

25.The World Bank group, 1997. HIV/AIDS lN ASIA: Without further action, a looming
public health crisis, AidsAsia, 1997.

26.UNA|DS Review, 1997, Sexual health education does lead to safer sexual behavior, October 1997. 27.UNAIDS, 1997. Report on the global HIV/AIDS epidemic estimates as of December
1

997.

28.UNAIDS, 1997. Ethical principles as guidance to the, international and national,

community and individual in response to HIV/AIDS.
29. UNAIDS, 1997. New UN World AIDS Day report. 26 November 1997.

30.UNA|DS Position Paper, HIV/AIDS

Pramualratana.

in Thailand,

January 1998, Dr. Anthony

31.World Health Organization, Regional Office for Southeast Asia, New Delhi, India,
1996. Handbook on AIDS home care.

Ghapter 3 Results of the Gross-sectional Community Study Regarding the Situation of Acceptance and

Non-discrimination toward PHAs in Nofiheastern Thailand

1. Background and Rationale Since the epidemic of AIDS in the late 1980s many patients have gradually returned back from their workplaces in urban areas to their hometowns in rural areas. The northeastern 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 govemment and nongovernment organizations have been working to promote acceptance and non-discrimination toward PHAs in these communities. Therefore, there is a need to suruey the situation and examine problems regarding the acceptance of PHAs in these communities. The results of the survey, together with the results of literature surveys and the expen review workshop will provide valuable comments and recommendations for strategies to promote acceptance and non-discriminatory practices toward PHAs living in the community.

2. Research Methodology The research is a cross-sectional community survey using three sets of questions. The data were collected through structured questionnaires and interviews with villagers by trained interuiewers. The researchers carefully selected one district which has high epidemic rates of AIDS and was convenient for data collection, Irom 24 districts in Ubonrajthani Province. From the district, four subdistricts and seven villages were selected by purposive sampling method. From each village, 50 households were selected by purposive random sampling (selecting every fourth household). lf it happened that no one was at the selected household, the next household would be selected an alternative. Conceming data collection from PHAs, the researchers decided to interview 20 PHAs who are members of PHA groups which receive support from FARM (Foundation for Agricultural and Rural Management). The group has 107 members who live in Ubonrajthani Province. 3. Research Areas Based on the above-mentioned methodology, the following research areas were selected : Ubonrajthani Province, Samrong District

50

1. Kampom

Kamkao Koksawang 3. Konoi Konoi 4. Samrong Samrong

2.

Subdistrict Village Sanamma Village Village Subdistrict Koksawana Village Subdistrict Village Subdistrict Nonsonghong Village Village

Banprong

4. Duration of the research period Preparation of questionnaires from October-November 1 997 Preparation research areas, field supervisors and training of interuiewers during December 1997 Data collection from 6-10 January 1998 Data analysis from 10 January - 20 February 1998

of

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 interuiewing 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 field 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, 303 sets of questionnaires were collected from the seven villages, (Table l).

6.1 Results of the data collection in Banprong Village ( Kampom Subdistrict, Samrong District). Banprong Village encompassed 38 households with a population of 194 (males 88, females 106). There were

51

two identified symptomatic AIDS case. The researchers interviewed 27

people in the village. (24 villagers and 3 PHA family members). There are no religious organizations or NGOs giving support to PHAs.

6.2 Results of the data collection in Sanamma Village (Kampom Subdistrict, Samrong District). Sanamma Village has 34 households with a population of 158 (males 80, females 78 ). There were two identified fullblown AIDS cases. The researchers interviewed 28 people in the village (19 village and 9 PHA family members). There are no religious organizations or NGOs giving support to PHAs, 6.3 Results of the data collection in Kamkaew Village (Kampom Subdistrict, Samrong District). Kamkaew Village comprises 42 households with a population ol221 (males 110, females 111). There were four identified symptomatic AIDS cases, The researchers interuiewed 29 people in the village (25 villagers and four PHA family members). There are no religious organizations or NGO's giving support to PHA.

6.4 Results of the data collection in Koksawang Village (Koksawang Subdistrict, Samrong District). Koksawang Village has 145 households with a population of 690 (males 342, females 348). There were
two identified full-blown AIDS case. The researchers interviewed 51 people in the village (47 villagers, and 4 PHA family members). There is one organization (a housewife and youth group) providing AIDS knowledge to the community.

6.5 Results of the data collection in Konoi Village

(Konoi

Subdistrict, Samrong District). Konoi Village includes 119 households with a population of 622 (males 309, females 313). There were four identified fullblown AIDS cases, one symptomatic AIDS case and three HIV+ people. The researchers interviewed 61 people (58 villagers and three PHA family members). There is one NGO called CARE giving support to PHAs in collaboration with village health volunteers (VHVs), a housewife and youth
group and the local health center.

6.6 Results of the data collection in Nongsonghong Village (Samrong Subdistrict, Samrong District). Nongsonghong Village is composed of 94 households with a population of 410 (males 210, females
200). There were two identified HIV+ people. The researchers interuiewed 45 people (44 villagers and one PHA family member). There is one
organization (a housewife and youth group) providing AIDS knowledge to the community.

6.7 Results of the data collection in Samrong Village (Samrong Subdistrict, Samrong District). Samrong Village hosts 117 households with a population of 571 (males 261, females 310). There were two identified

52

HIV+ people. The Researchers interviewed 62 persons (56 villagers and 6 PHA family members). There is one organization (a housewife and youth group) providing AIDS knowledge to the community.

6.8 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 (63.3 percent), parents (16.71 percent), brothers and sisters (20.0 percent). 6.9 Acceptance of PHAs by Villagers. (Table 3). Eleven questions were asked concerning the acceptance of PHAs by villagers which are summarized in Table 3. As for the villagers, 70.7 percent of them mentioned that they knew some PHAs in the village, 85.8 percent think that there are 15 people in the village. lf they knew that someone in the village had contracted AIDS, 46.4 percent felt as usual, about 30.7 percent felt fear and disgust, bul22/ percent expressed sympathy and wanted to help PHAs. As for attending the funeral of someone who died from AIDS, 56.8 percent have attended them , but 30.4 percent mentioned that they attended the funeral but did not drink or eat anything served. A majority of the villagers (88.6 percent) think that PHA children should attend the same school with normal children, while 11.4 percent do not want those children to study together because of fear of infection and other reasons. Concerning activities of PHAs, a majority of villagers (92.3 percent) 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, 39.2 percent 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.

6.10 Acceptance of PHAs by PHA Family Members (Table 3). Eleven questions were asked concerning the acceptance of PHAs by family members. A majority of them (83.3 percent) have one or two PHAs as their
close relatives. When they knew that their relatives had AIDS, 30 percent felt as usual, whib 33.3 percent expressed sympathy and wanted to help PHAs. As for attending the funeral of someone who died from AIDS, 73.3 percent have attended, but 16.7 percent mentioned even though they attended the funeral they would not drink or eat anything served. A majority of PHA family members (96.7 percent) think that PHA children should attend the same school with normal children, while 3.3 percent do not want those children to study together for lear infection. Concerning activities of PHAs, lO0percent 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

53

6.11 Caring for PHAs by the Villagers (table 4). Ten questions were asked concerning care for PHAs by villagers. A majority of them mentioned that there are no network funds to support PHAs. They can help PHAs by providing financial assistance, mental support, funds to assist PHAs, and necessary advice. For AIDS orphans who lost their parents, a majority of them (98.2percent) mentioned that their relatives should take care of the children. 6.12 The Most lmportant Problems for PHAs as perceived by the Villagers (Table 5). From the villagers' point of view, the most severe problems for PHAs are financial, mental, social, family problems and PHA personal problems (health), lack of knowledge, risk behavior, etc).

6.13 Poesible Ways for Community Cooperation to Help PHAs as Perceived by Villagers (Iable 6). The villagers expressed that they can cooperate to help PHAs in several ways. The most impoftant one is by providing mental support to PHAs. The others are setting up a community fund, providing financial and other support for basic needs as well as advice
for self-care.

6.14 Caring for PHAs by Family Members (Table 4). Ten questions were asked concerning care for PHAs by PHA family members. A majority of them provided several kinds of care (providing all necessary care for food, lodging and mental support). Regarding AIDS orphans, a majority of them (96.7percent) also mentioned that their relatives should take care of the children. 6.15 The Most lmportant Problems for PHAs as Perceived by PHA Family Members (Tabte 5). From 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 PHA personal problems.

6.16 Possible Ways for Community Cooperation to Help PHAs as Perceived by the PHA Family Members (Table 6). PHA family members also share opinions similar to villagers. They agree that providing mental support for PHAs is the most important. Other ways are setting up a community fund, providing, financial assistance, advice for self-care as well
as others.

6.17 The Most lmportant Problems of PHAs as Perceived by PHA Family Members. PHA family members share similar viewpoints with villagers. The most serious problem is social in nature. The others are financial, family and PHA personal problems.

54

6.18 General Information about PHAs in the Survey (Table 7). PHAs in the survey consisted of twenty persons (12 males and 8 females) with ages ranging from 25 to 41 years. Sixteen of them have children of whom three are infected. The infection period is from several months to seven years, Concerning clinical symptoms, five of them have moderate symptoms eleven non-symptomatic or light symptoms, and four severe.
6.19 Acceptance and Care by PHA Family Members (Table 8). PHAs expressed that they had some problems wlth their family members at the beginning, but many of those problems were solved later on, At present, their families provide advice on health, prepare some food and offer 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.

6.20 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 govemment and non-government organizations, many PHAs also receive 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.
PHAs expressed their problems on social problems: discrimination, stigmatization as the most important ones. The others include poor health, financial problems and mental problems 6.22 Types of Gommunity Gooperation to help PHAs as Requested by PHAs (Table 12). PHAs share different viewpoints with the community concerning support from the community Most of them expressed their need for having understanding for PHAs and associating with PHAs as normal people so that they can live and work without emotional and social constraints in the community.

6.21 The Most lmportant Problems

for PHAs (Iablell).

7.

Discussion

Results of the research projects conducted in the northern part (19961997 research) and in Northeastern (1997-1998 research) Thailand clearly demonstrated the following three mechanisms. First, there are increasing numbers of PHAs in the rural communities, both in the northem paft as well as the northeastern part of Thailand. Secondly, PHAs face many problems, especially social, economic, health and mental problems. Thirdly, PHA

55

problems will be decreased when PHAs are able to join the group or able to express their problems and their needs to others.

Given the present situation that there are no vaccines or drugs to cure AIDS, lessening PHA social problems is the pressing demand. Promotion of understanding and acceptance for PHAs in the community should be a priority for AIDS programs in every community.

(o

lo

o o @
E
F

o
(s

o (E o L

o o L

It J
1F

E
c q) E c
o

cr) NC!NrO(os(o o (f)

F-@O)r-lJ)N

.9

c (u
3 o c o E a

o
.c .aJ

.s

o e

T'

o oo o (r o
ct z

$Ei COO)$$Cr)_(O
a L o
o)
-(u

o (f)

E !F
E

0 CL o o o L o

$ottOt'.@$(o N-(\ltlO.sftO

(f)

AT drL 6

ol

6P FL :o

.o

t (Y)NC\l

t-

J z

It c
It

o o o (U
()
@

I
.9
(U

sg <-o Ig lr
(s

=q E(s
9d LO

a o
= o
rF
l-

o a

oE

NrSrrl

l'-

$a o-Ecl oo) c(d

-9 g6

(/,(u

= o
ct z

a
,i9 == --o
o
r (\l , (\l$ |
|

.o E

-c#

EE td ql o-c
=.E o(',

l' z
-g

=o *o x(s
'f@-ONOO)lf)AlCDAlrI: rr(\l(O(o$tO
(o (o
@-

.Ct (E

xo
7a (g rJ ea

E(d .o5 FO

(L

ol

E,+
n(tl

o
-(6

o)

(! ='c ^

c o)o -C, C

o)
trDO

s'b =o >z
5 z
o
C\l

(U(0(U000Gt o OOYYYZA l-

sFg fi u f; E t c c triz c c E

57

Table

General Socio-Economic Profiles of Villagere and PHA Family Members No. of Respondents PHA Family Villagers Socio-economic Profiles (N=273 Members (N=39
No.
o/o

No.
11

Yo

1. Sex - Male - Female 2. Age - Less than or 20 years - 21-30 years - 31-40 years - 41-50 years - 51-60 years - 61-78 years 3. Marital Status - Married - Single - Divorced / Separated 4. Education - No schooling - lncomplete 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 - Student 6. Relation with PHA - Father - Mother - Spouse - Children - Brothers / Sisters - Close relatives

91

182
34 62 65 43 39 30

33.3 66.7
12.5

19

36.7 63,3 6.7 13.3 20.0 16.7 26.6 16.7 76.6 6.7 16.7 3.3 6.7 73.3 10,0 6.7

22.7 23.7 15.8

14.3 11.0

2 4 6 5

200
52
21

73,3 19.0 7.7 2.2

12.1

23 2 5
1

6 33 174 43 17

63.7 15.8 6.2

79.1

2 22 3 2 25

216

r:t
. 3.3
3.3 3.3
10.0 6.7

:
1;
6
1

2.9

7 25

3.6 2.2 0.4 2.6 9.2

;
1 1

6 19

zo.o

63,3

Note :

1)

Villagers mean people who are neither PHAs nor PHA family members

58

Table 3 Acceptance of PHAs by the Villagers and PHA Family Members

No. of Respondents PHA Family Villagers (N=273) Members (N=30) Yo No. No. %
193 80 187

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 - 1 1-20 persons - more than 20 persons 3. How many PHAs are your close relatives? - 1 person - 2 people - 3 people - 5 people - 6 people 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 pity - Not disgusted, 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 as 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

70.7 29.3
85.8

25 5

83.3
16.7

,_"

:
12

I
:

5.5 3.7 0.9 1.9

128 67
17 60
1

46.9 24.5 6.2 22.0 o.4

I
10
1

30.0 33.4 3.3

10

.:'

215

78.7

12

40.0
10.0 30.0
10.0 10.0

*-

,?.,
3 9 3 3 22 5 3

o.o
56.8 30.4
12.8

-No

155 83 35

73.3 16.7 10.0

59

No. of Respondents

Acceptance of PHA

Villagers (N=273)
No.
Yo

PHA Family Members (N=30)

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

10
1

16 6

30.0 3.0 48.4 18.3

;
1

oi.z
33.3

242
31

-No
8.1 The reasons that they should not attend the same school : - Afraid of infection to normal children - Don't want them to be together - PHA children may feel discrimination and isolate themselves from the class 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 support 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 10. lf you have PHAs in your family, what would you do? - family members should take care of them - members should send them to the hospital - Don't know what to do 11. How can you help PHAs? - visit them - give financial suppoft - set up a village fund - take them to see a doctor when needed - give them knowledge - give food and other necessarv items

88.6 11.4

29
1

96.7 3.3

27 2
1

90.0 6.7 3.3

ro:

252
21

92.3 7.7 40.5 7,6

46.7 5.2

30

100.0

85
16

12

48.0
12.O

3 8 2

98
11

32.O

8.0

5
14

26.3 73.7

107 163 3
'177

39.2 59.7
1.1

30 54 7
18

61.0 10.4 18.6 2.4 6.2 1.4

16

47.1

7
5
1

4
1

20.6 14.7 2.9 11.8 2.9

60

Table

4 Garing for PHAs in the Community

No. of Respondents PHA Family Villagers (N=273) Members (N=30) o/o 7o No. No.
5 17.2

Caring for PHAs in the Gommunity

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.9., using gloves live together using separate food and belongings never visit PHAs or PHA families

2 5
17

6.9 17.2

58.7

2. Are there any PHA networks for employing PHAs? yes

-no

268

1.8 98.2

3;

too.o

3. How many groups in this subdistrict?

-1 -2

to:

4. Are there any funds to assist PHAs in the

village? yes

-no

13

260

4.8 95.2

2 28

6.7 93.3

5. lf there is no fund, how can we help PHAs?

provide money food and other materials set up funds to assist PHAs provide information and moralsupport let PHA family members take care of them Don't know

36 50 47 3 23

22.6 31,4 29.6

1.9
'14.5

7 3

13.6 40.9 31.9

13.6

6. Do you think that the hospital will not accept ?

-no

yes

11

262

4.0 96.0

3 27

10.0 90.0

61

Caring for PHAs in the Community

No. of Respondents PHA Family Villagers (N=273) Members (N=30) o/o % No. No.

7, Who should take care of AIDS orphans?

'

relatives villagers community day care centers hospital

268
1

98.2 0.4
1.1

29

n:'

3
1

0.4

8. Are there any groups or organizations in the village to help PHAs?

-no

yes

149 124

54.6 45.4

13 17

43.3 56.7

9. Names of those groups or organizations

Care Village Health Volunteers Health Centers Hospital Provincial health office All these organizations

39 38 25 17 30

26.1

3
1

23.1

25,5 16.8 11.4 24.2

7.7
23.1

3
1

7.7 38.4

62

Table

The Most lmportant Problems for PHAs as perceived by the Villagers and PHA Family Members
No. of Respondents PHA Family Villagers (N=273) Members (N=30) o/o o/o No. No.

Caring for PHAs in the Community

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 among family members) 5. Children's schooling problems (discrimination in the school and no money for school expenses) 6. PHA personal problems (health, lack of knowledge, risk behavior, etc.)

59 64
163
51

14.1

I
6
17

20.5
13.6

15.4 39.2
12.3

38.6
13.6

80

19.0

13.7

63

Table

Possible Ways for Community Cooperation to Help PHAs as Perceived by the Villagers and PHA Family Members,
No. of Respondents

Caring for PHA in the Community

Villagers (N=273)
No.
o/o

PHA Family Members (N=391 o/ /o No.

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 part time jobs, medicaltreatment, funeral expenses and others)

38

10.2

7.9

2. Providing mental support such as to visit and talk with PHAs as with normal people
3. Providing money, food and other necessary support

153

41.0

'17

44.7

60

16.0

15.8

4. Providing information and recommendations

for self-care and necessary advice 5. Cooperating with government programs

71

19.0

10.5

13

3.5
2.1

2
2

5.3 5.3

6. Letting PHA family members take care of PHAs

I
29

7. Depends on decisions of village leaders

7.7

10,5

64

Table

General tnformation about People with HIV/AIDS (PHA) in the Survey

General lnformation
No. of PHAs (N=20) No. Yo

1.

Sex
12

- Male - Female 2. Age - 23-25 Years - 26-30 Years - 31-35 Years - 36-40 Years - 41 Years 3. Marital Status - Married - Single - Divorced/Separated 4. Education - No schooling - Primary school - Secondary school - Higher than secondary school 5. Occupation - Farmer - Daily employment - Sewing barber shops - NGO's volunteer - No work due to illness 6. Number of children still alive - have no children - 1 child - 2 children - 3 children 7. Were your children infected? - yes _no - not tested for AIDS (unknown)

60.0 40.0
21.0 47.0 10.5 15.8 5.3

I
1

2 3

18 2

90.0

,:o

17

:
11

85.0 o

':

3 3
1

2 2 7 6 3
3 12 3

55.0 15.0 15.0 5.0 10.0

11.0 38.9 33.3 16.7
16.7 66.7 16.7

65

General Information

No. of PHAs (N=20) o/o No.

8.

Did your children have any schooling problems? 17

1

_no - yes 9. Did your spouse also get AIDS? - Yes - Don't know 10.For how long have you been infected? - Lessthan 1 year - 2-3 years - 4-5 years - 6-7 years 1 1 .Current AIDS symptoms - No symptoms or very light - Moderate - Severe

94.4 5.6 94.4 5.6 20.0 20.0 45.0 15.0 55.0 25.0 20.0

17
1

4 4 9 3
11

5 4

66

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 sympathized and accepted it as our destiny (10 people) o They were very upset and disgusted about my (or my husband's) misconduct, but later gave us some support) (9 people) o Never disclosed to anyone (1 person) 2. At present, how do your neighbours, friends and family members behave? There was strong discrimination at the beginning but then they understood our condition (7 people) o They understood our disease and accepted us from the beginning (7 people) We still never disclose to anyone (5 people) They accept us while still being afraid of infection (1 person) 3. What kind of care do you receive from your family? They provide all kinds of support (such as food, drugs and others) as usual (15 people) o Nothing. I can take care of myself (5 people)

. r .

67

Table

Support for PHAs from Other Organizations

Yes No. Yo 20 20 20 20
13

Types of Support from Other Organizations

Go

From NGO Both

some advice some training on self-care referral service to health facilities free medication monthly financial assistance some food and other daily requirements

100 100 100 100 65 20

;
1

l
;
2

19 19 19

17

7 2

3 3

Note:

Go means government organizations NGO means nongovernment organizations

Table

10

Benefits from Being a Member ol a PWA Group

1, We do not feel lonely. (4 people) 2. We can share information and knowledge about food, self-care, drugs, traditional medicine, child's schooling, etc. (8 people) 3. We can join some income generating activities such as sewing and other part time jobs. (2 people) 4. We can join some volunteer activities (3 people)

Table

11

The Greatest Problems for PWAs as Perceived by PWAs Themselves

1. Financial problems, for medical bills, family expenses, children education, etc. (2 people) 2. Health problems (fatigue, diarrhea and skin rashes which progress continuously) (5 persons) 3. Social problems (discrimination, stigmatization) (11 people) 4. Mental problems (2 people).

68

Table

12

Types of Communities to Help PHAs as Requested by PHAs

1. Understanding PHAs and associating with PHAs as normal people so that PHAs can live and work as usual in the community (19 people) 2. Providing some work so that PHAs can earn some money to support themselves and their families (1 person)

Chapter 4

Results of the Training Workshop for Field Workers and Gommunity Volunteers on Gommunity Preparation for Acceptance and Non-discriminatory Practices toward People with HIV/AIDS in the Community
1. Title of the Workshop : Community Preparation for Acceptance and Nondiscriminatory Practices toward People with HIV/AIDS in the Community. 2. Objectives of the Workshop
:

the practice toward people living promotion of acceptance and non-discriminatory with HIV/AIDS (PHA) 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 impact 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, acceptance and non-discriminatory practices toward people living with HIV/AIDS (PWAs) in the community. 3. Training Organizer 4. Training Place

2.1 General Objective

To test the training strategies for

ASEAN Institute for Health Development, Mahidol University.

The Training Gentre for Non-Formal Education, Ubonrajthani Province 16-17 March, 1998

5. Training

Date: :

6. Training Participants

Community leaders, NGO's field workers and

community volunteers, 35 participants in all

They are from the following organizations:

70

List of Participants
1. NGO field workers in Ubonrajthani Province (5 persons) (1 persons) The Pearl S.Buck Foundation (1 persons) CARE (1 persons) FARM (1 persons) SHARE (1 persons) AIDSNeI 2. Representatives of PHAs from a PHA network, FARM (Foundation for Agricultural Rural Management, (4 persons) 3. Community leaders in Samrong District, Ubonrajthani Province (9 persons) 4. Members of Konoi,Kampom and Samrong Sub'District Management Council (6 persons) 5. An officer of Samrong District Health Office (1 person) 6. Statf of Konoi, Kampom and Samrong Health Council (3 persons) 7. Staff of the AIDS Division, Samrong Community Hospital (2 persons)

r r r r r

7. Training Topics and Training Methodology

The training topics were selected according to their relevancy to the purposes of the training program. These were key topics necessary for the understanding of the AIDS epidemics, and their medical and social consequences and finally leading to acceptance and non-discriminatory practices toward PHAs in the community. The training methodologies consisted of games, role-plays, lectures, seminars, small group discussions, audio-visual presentations and others. The training methodologies were based on several training manuals which were developed by the ASEAN Institute for Health Development (AIHD), Mahidol University, by the support of the Japan Foundation for AIDS Prevention, EC/AIHD AIDS Project and others.
8. Training Schedule 1998/3/16

08.30 09.00 09.00 - 09,30 09.30 - 10.15 10.15 - 10.45 10.45- 11,00 11.00 - 12.00
08.00 08,30 -

Registration Opening ceremony Explanation of the training objectives Self-introduction Guidance to training process Analysis of Participants'attitude on AIDS and PHAs AIDS situation in the local communities. Coffee break Session lV (Basic data of AIDS work)

71

13.00 14.30 14.45 15.45 15.45 - 16.30 19.00 - 20.30

12.00 13.00 14.30 14.45 1998/3/17 08.30 09.00 09.30 12.00 13.00

Lunch Session lV (Basic data of AIDS work) Cotfee break Session Vl (Attitude to words AIDS and sex behavior Session Vll (Opportunities for risk sexual contacts and safer choices to decrease risk). Session Vll (Chances for risk sexual contacts and safer choices to decrease risk).

09.00 09.30 - 12.00 - 13.00 - 14.30 14.30 - 15.00 15.0 - 16.30

-

Group process Recap Session (PHIV and affect from AIDS) Lunch X (Guidelines to develop community understanding Coffee break Conclusion/evaluation

9. Results of the Training Activities

Training workshop on "Preparing Communities for living with

AIDS"

Objectives: After this training, participants will be able to:

1. State risk factors

2. 3. 4.

for HIV/AIDS infection and select safer behaviors to prevent infections Analyse the affect of AIDS on individuals, families, communities
and society; Assess our own attitudes towards AIDS and sexual behavior; and Choose appropriate topics and methods of communication in order to effectively work with the target groups in changing attitudes and behaviors to decrease the risk of HIV/AIDS infection and to increase understanding and acceptance of PHAs.

Session I : lntroduction
Objectives:

o o o

To help familiarize the participants and the facilitator with each other; To introduce objectives, agenda and process of training; and To elicit the expectations of participants.

72

Process:
1.

2. 3.

4. 5.

Participants introduce themselves and state their job; Participants write their expectations on a piece of paper and put them on the wall; Trainers collect participant's expectations and tell which topics will be included in this training and which will not be included; Facilitator gives a complete overview of the topics the will be covered in the two days of activities; and Facilitator explains the process of this training that emphasizes participation and exchange of experience between the participants and the facilitator - the concepts of the facilitator is " We don't teach anyone, what we do is to facilitate the learning".

Session ll : Assessment of Participants'Attitudes

Objectives:

o r

To access the participants' attitudes about AIDS and To get information from the participants in order to adjust the content or the process of the training.

Process:

1, Introduce the "To know each othe/' game; 2. The game is implemented as follows:
(Analysis problemftarget group)
1.What do you think about AIDS? 2.What do you think about PHAs? What do you think about sexuality? Update?

of working on AIDS) Effectiveness of work

RelevanVeffective?

relevant?

Cause of infection of solving problems

in

work

Assess the risk behaviors of the participants and share them with the whole group and Point out that risk assessment is very important in order to show people who think that they are not at risk and that these behaviors do put them at risk; thus this game can demonstrate how one can decrease risk or prevent it altogether;

73

Conclusion: For preventive work, one needs to: Recognize that AIDS is not far from us, it can be happen to us or our lovers or our relatives or friends; Help the target group increase their capacity to assess their own risk behaviors ; Show the target group that there are many choices in decreasing their risk behaviors; and Motivate the target group to practice safer behaviors.

Session lll
Objectives:

AIDS epidemic

o . . . . o

To recognize that AIDS is not far from us, it may happen to you or your neighbor; To be able to analyze or assess AIDS behaviors that lead to infection; To demonstrate that the AIDS epidemic exists in their area; To state the causes of unsafe behavior; To understand the connection between of risk opportunities and risk behavior; and To show the sexual behavior of society from the data of the sexual behavior survey.

Process:

1. Introduce the "Exchange Wate/' game; 2. From the game it is learned:

The AIDS epidemic is in our society. We don't know who is infected by their appearance. The method of assessing risky sexual behavior among those in one's target group who have not responded to prior prevention campaigns, ls it possible or impossible to decrease risk? Decision-making for blood testing The ability to recognize and accept that AIDS is closer to one's own life that previously was thought 3. Present the AIDS epidemic data that relates to risk opportunity 4. Emphasize that our work is to decrease risk and to have safer sex. We want to change behavior, is it difficult or not? ls it taking too much time? What is our goal? How do we work to change attitudes and risk behavior?

Session lV : Basic data of AIDS work

Objectives:

. o

To assess the participant's knowledge on AIDS and To emphasize the importance of answering clearly and correctly.

74

Process:

1.

2.

3. 4.

Question participants about their basic knowledge concerning HIV/AIDS. Ask participants in what areas they would like to get more information. Explain the method of choosing health messages based upon community assessments. Emphasize the following issues: A. Relationship between HIV and AIDS; B. The effects of HIV on the immune system; C. Accurate information concerning modes of infection; D. Blood testing and treatment; E. Anti-viral drugs; F. Relationship between AIDS and sexual behavior; G, Enhancing community acceptance of PHA, and H. Methods of obtaining further information about HIV/AIDS issues. When the presentation is concluded, the facilitator will answer any remaining questions that the participants have.

Conclusion:

Session V: Behavior Change and Attitude Change

Objectives:

o o o

To assess the participant's knowledge on AIDS; To increase the participants'accurate information about HIV/AIDS issues; and To be able to explain one's risk level

Process:

1. Introduce the "How Much Are You at Risk?" game 2. Discuss differences of opinion conceming certain behaviors.
What is the reason? What happens if we give information to the target group that is not clear or not consistent? How do we deal with this problem? Point out that the message you convey to each group is different, so each message needs to be tailored to the particular needs of the target group in order to effectively decrease risk behaviors. Conclusion : Information on AIDS must be correct and clear because you are the one who communicates it to the target group. When you answer the target group's questions, be careful to determine if they are reacting to facts, attitudes or anxiety.

3.

4.

75

Session Vl: Attitudes toward AIDS and Sexual Behavior

. o
Process:

Objectives: To understand that each person's attitudes vary, they depend upon one's ideas and ways of thinking. Your attitude about something may be different from mine To understand the cause of behavior To be non-judgmental when viewing others' attitudes by your own standards

Introduce the " How much will you charge?" game 2. Discuss the issue that judgements about men's behavior and women's behavior are not the same. Why is it different? 3. Facilitator points out that there are different judgements to the same behavior. This judgement depends on who does the behavior; if man does it, it is normal, if woman does it, it is wrong. What criteria do we use for judgement? lf we get more information or we know the causes influencing this behavior, will we change our judgement? Conclusion:

t.

o We have our own attitudes.

r .

We form attitudes from our surroundings. Thus, our attitudes might be ditferent from others. Generally, we have our norms and we use this for judging others' behavior. Sexuality is fundamentally natural and an individual's taste. Society defines patterns, norms and processes to influence people's attitudes and behaviors.

Session Vll : Opportunities for Risky Sexual Gontacts and Sfer Goices to Dcrease Rsk
Objectives:

. o .

To demonstrate that risky chances for sexual activity can be foreseen; To understand that the issues related to AIDS and sexuality have many determinants, not only knowledge; and To relate sexual contact with social factors, culture, emotions and attitudes,

Process:

1. Separate men and women into 2 groups. 2, Discuss the various factors that lead to decision-making concerning sexual intercourse . 3, Rate the most common factors.

76

Conclusion:

r . o .

Target group analyzes their sexual behavior and their chances to become infected. Group lists enabling factors that may help to decrease risk opportunity. Help group to realize that they may be at risk and how to select safer choices. The important part of the process is to stimulate people to recognize their risk and the possibility that it may happen to him. AIDS prevention is about thinking and planning before having sex.

Session Vlll : Sex Gommunication

Objectives:

To understand that sexuality is natural and an individual's taste To understand the process of learning about sexuality in Thai society
Process: Facilitator asks questions and the participants, broken up in two groups of men and women, answer the questions separately. Collect all answers and discuss their similarities and ditferences. Conclusion:

. o .

Sexuality is a human behavior. Oppoftunity for gaining information and experience is not the same, either between men and women or even among those of the same gender. Knowing one's partner's ideas and ways of thinking will help in developing good relationships as well as in planning to prevent pregnancy, STD's and AIDS. Each gender needs to consider the other gender's view and learning about each other's views will increase understanding between the partners.

Session lX : PHIV and Effect from AIDS

Objectives:
a

To analyze the participant's attitudes towards PHAs To identify the causes of stigmatization ls there a stigma related to the disease? ls there a stigma related to the behavior? To identify the effects from this stigmatization To recognize human rights and human dignity

77

Process:

1. Introduce the "Who will get this Treatment? " game 2. Discuss the reasons in choosing who should receive
Conclusion:

an

HIV/AIDS treatment that is limlted to a small group of patients. lf that PHA is your relative, do you change this decision.

. o o

The individual's attitude atfects the way one identifies the problem and then solves it. Attitudes towards PHAs can be tied with fear images of AIDS that were promoted in past prevention campaigns. You cannot judge people; human beings are equal and have dignity.

Session X: Guideline for Developing Community Understanding

Objectives: To emphasize clearly the goal of AIDS work; To analyze effective methodology; To identify strengths and weaknesses of activities; To recognize the importance of knowing and understanding the target group; and To analyze data about the target group for its application in work. Process: 1. Facilitators summarize the key messages, both in prevention and in understanding PHA's.

. o o o .

To confirm and clarify information about HIV infection lf we or our lovers become infected with HlV, we remain the same person In terms of the worker, prevention is easier and of lower cost than managing its after effects.

What issues are helping to increase understanding and assist those living together? What are appropriate home based-care activities and hospices? What are the messages in AIDS campaigns and mass media?
lient-centered and adult learni The importance of analyzing and understanding target groups is that it affects the methodology. The method of getting to know the target group goes beyond the simple collection of research data.

78

lf we know our target group, we can integrate our work into the community. lt's not just going into the community to conduct training; it is choosing appropriate methods and messages in order to conduct effective education. AIDS work is done with adults so the learning process should be adult learning. Work within networks

and evalu check if the process is relevant to the problem and is To geared to our obiective or not, ask, Does the worker develop some skill and joy with his job? Behavior change is a long continuous process. Indicators can be both quantitative and qualitative. Our question is "We want to measure what? ls your work etfective? Are the indicators able to measure behavior reliably and validly? " Indicators will influence the content of the messages.

10. Conclusion and Evaluation of the Training Workshop

This workshop was the most comprehensive one aiming for behavioral change for AIDS prevention, understanding of AIDS on both medical and social aspects and enhancing communication skills with PHAs and the community. Training topics were selected due to their high relevance to the purposes of the training program. The trainers employed several training techniques to stimulate the interest of the participants as well as encourage participation at each stage of the training process. The training participants consisted of NGO field workers, representative PHAs, community leaders, as well as government officers from the local health centers, the district health otfice and the community hospital.

From an overall participatory evaluation with the participants, most expressed their satisfaction and appreciation with the facilitation skills of the training session leaders as well as the training process. Besides these, the make-up of training participants, which consisted of NGO field workers, PHAs, community leaders and local government officers, made the training lively, dynamic and more realistic to the actual condition of the community. Several topics on the medical and social aspects of AIDS, PHA needs, NGO contributions, services available at the local health otfices, govemment policies on AIDS, etc, could be easily updated and enhanced among the participants because of the richness of the participants' backgrounds.
However, participants with diverse backgrounds and different levels of

AIDS knowledge and experiences about AIDS also created difficulties in

designing the training contents and facilitating the sessions.

79

Maximal etfort should be paid to make sure that no inappropriate words or issues would be raised to jeopardize PHA rights and create a negative stigma. Local government otficers and NGO field workers should be informed beforehand about AIDS information which needs to be inserted in some modules. With some modifications and well-designed curriculum, a training workshop like this one will be very etfective to promote acceptance and non-discriminatory practices toward people living with HIV/AIDS in the community in the future.

ChaPter 5
Results of the Expert's Workshop on Strategies for the Promotion of Acceptance and Non-discrimination towards People Living with HIV/AIDS in Northeastern 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 hometowns in rural areas. The north'eastern 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 have been working to create networks and 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 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 non-discrimination towards people living with HIV/AIDS in the community.

2. Objectives
1. To analyse the current situation and trends of the AIDS epidemic in the north-eastern part of Thailand ; 2. To exchange information and experience regarding activities on promoting PHA networks and the promotion of acceptance and nondiscrimination toward PHAs in the community; collaborate 3. To find common strategies for organizations etfectively for the promotion of acceptance and non-discrimination toward PHAs in the community in Northeastern Thailand.

to

3. Major Activities of the Workshop

1. Presentations from experts about the situation and trends of the AIDS epidemic in the nofth-eastem pad of Thailand; 2. Small group discussion to analyse the situation and trends of the AIDS epidemic as well as sharing experience about working in the community;

3. Small group discussion to find out appropriate strategies for networking and promoting the acceptance and non-discrimination toward PHAs in the community.

81

4. Collaborating Agencies
several organizations, namely; Non-government Organizations for AIDS-Esarn Region, AIDSNET, and the ASEAN lnstitute for Health Development under the research project, the Research on Strategies for Living with PHAs in the Community, with support from the Japanese Foundation for AIDS Prevention.

The workshop was organized with the collaboration of

5. Workshop Participants Participants consisted

of 43 experts from non-government

organizations, the Centers for Communicable Diseases Control of Region 5, 6 andT and ASEAN lnstitute for Health Development, Mahidol University.

6. Date and Venue

The workshop opened June 2-5, 1998 at the Training Center of Esarn Development Foundation, Surin Province.

7. Results of the Workshop

7.1 HIV epidemic in the north-eastern part of Thailand HIV infection in the north-eastern part of Thailand is still less than other parts of the country. (Table 5.7.1) However, if we look at the statistics in Ubonrajthani Province since 1987, we will observe an alarming increasing trend for every year. The increasing figures are obserued in number of AIDS cases, number of AIDS deaths, and in all modes of infection except for blood transfusion (Table 5.7 .2, 5.7.3 and 5.7.4).

Tabfe

5.7.1 Monitoring of HIV lnfection in Thailand

HIV Positive Rate (%) bY Region North- South The whole Central North country East 0.66 0.86 0.4 0.78 0.75 37.93 45.99 24.68 35.61 39.92 1.74 1.71 1.24 1.94 2
8.41

Source of Monitoring

Donated Blood
IDU

ANC Male Glient at STD Glinics Direct CSW lndirect CSW

8.53
34.1 '10.7

4.91

10.73 21.38
'11.29

7.97 25.69
10.08

26.28 10.55

19.36 7.24

Source : Department of CDC, MOPH, Thailand

82

Tabfe

5.7.2
Year

Number of AIDS Cases at Ubonrajthani Provincen NorthEastern Region of Thailand (1987-20 April 1998)

Full-blown AIDS Cases

1 1

Death
1

Symptomatic
AIDS Gases 0
0

1987 1989
1

990

2
1

2
4 14
21

1991

I
32
71

'lgg2
1993 1994 1995
1

7
12

180

44 35 46 89
10

35 86
158

294 314
450 73

996

1997 1998

152
17

Total

1,426

248

489

Source: 506/1 and 507/1 Repofts, Ubonrajthani Provincial Health Office

83

Table

5.7.3

AIDS Infection in Ubonrajthani Province, classified by Mode of Infection (1987- 20 April 1998)
1987 1992
-1991 5 8 27
111

Mode of

1993

1994

1995

1996

1997

1998
72

Total
1060

o/o

Infection
1. Sex

236
0 0

218
0 0

383

74.33 o.o7 o.14 64.59 9.33

0.21

Homosexual
Male Bisexual Male
0 0 5 0 0
5

0 0 6 0 2 6 6 0 0 0 0
1

0 0

0
1

1 1

0 0 52 20 0 0 0 0 0 0 0
1

Heterosexual
Male

27
0 0 5 5 0 0 0 0 2 2 0 37 35 2
71

102
7
1

224
12

184
34 0 18
1B

321 60
0 14 13
1

921
133 3 77

Heterosexual
Female Unknown

0
19

2. IDU
Male Female

10

5.40 5.33 0.07 o.07 0.00 o.a7 3.09

1.96 1.12 17.04 15.22 1.82

5 0
1

10 0 0 0 0

19 0 0 0 0 3
1

76
1

3. Blood Transfusion Male

Female

0
0 0 4 2 2

0 0 0

0
1

0
1

4. Vertical Transmission Male

Female

0 0 0
1

I
4 5

25
19 o 28 20 8

44 28
16

0
1

0
1

5. Unknown
Male Female

17
13

50 46
4 180

36
31

74 72
2

0 0 0 73

243
217 26

0
1

4 32

Total

12

294

314

450

1,426 t00.00

Source

: Ubonrajthani

Provincial Health Office

84

Tabfe

5.7.4

AIDS Deaths

Ubonraithani Province Classified by Mode of lnfection (1987 - 20 April 1998)

1987 1992
-1991 2
1

in

Mode of

1993
6

1994
21

1995 23
0 0

1996 28
0 0

1997 1998 75
0 0

Total
165 0
0 147 19

o/o

lnfection
1. Sex

I
0 0
5 4 0 0

66.53 0.00 0.00 59.27 7.66 0.00 7.66

Homosexual Male Bisexual Male Heterosexual Male Heterosexual Female Unknown

0 0 2 0 0 2 2 0
1

0 0
1

0 0

0 0
21

6
0 0 0 0 0

23
0 0 6
t)

27
1

62
13 0 2 2

0 0 2 2 0 0 0 0 0 0 0 4 3
1

0 3 3 0 0 0

0 4 4 0 0 0

0
19 19 0
1

2. IDU
Male Female

0 o 0
0

7.66
0.00 0.40 0.00 0.00 5.24 4.03
1.21

0 0 0 0 0 0 0 6 5
1

0
0 0

3. Blood Transfusion Male

Female

0
0

0 0 0 0 0 0 0 0 5

0 0
13 10 3

0
0 0 0 6 6 0 12

o
4 3
1

0
2 I
1

0
7 6
1

0
1

4. Vertical Transmission Male

Female

0
1

5. Unknown
Male Female

16 13 3

12
12

5 3 2

0
0

49 42 7

19.76 16.94 2.82 00.00

o 46

0
10

Total

44

35

89

248

Source : Ubonrajthani Provincial Health Office

85

7.2 Experience

was shared regarding activities on promoting PHA

networks and the promotion of acceptance and non-discrimination toward PHAs in the community. The workshop participants were separated into 4 groups. They discussed their experiences on working with PHAs and the villagers in the communities in the north-eastern part of Thailand. The results of their discussion are summarized as follows: 7.3 Situation in the Community 1. Many villagers still do not have the right knowledge and attitude for AIDS. They are not serious enough to protect themselves from AIDS, even though their behaviors are very risky. contact any 2. PHAs will not reveal themselves organizations until they develop apparent symptoms. The family will accept PHAs as long as they can work and 3. remain non-symptomatic. However, when PHAs cannot work and develop some opportunistic infections, the family will request us to transfer PHAs to some other places' 4. Many communities still have strong discriminatory practices toward PHAs. Even when PHAs pass away, community members are still reluctant to come for the funeral. Community participation in caring for PHAs is not at the levelthat one expects. 5, Coordination between community organizations, NGOs and the local government organizations are not smooth and effective enough. We still face many problems about referral services and medical treatment.

or

7.4

Strategies for the Promotion of Acceptance and NonDiscrimination toward PHAs in the community in the
Northeastern Paft of Thailand
1. Good community preparation

acceptance and non-discriminatory practice toward PHAs. However, the process will need cefiain triggering events. NGOs have to find out appropriate triggering events. 2. After good community preparation, setting up a PHA network in the community is essential' This PHA network has to be established only by voluntary basis' We should not overemphasize financial gain or business truncations. 3. The PHA network has to be strengthened and supported regularly by some superuisory team. They will need advice on self-case, occupational training, referral seruices and others. persuade and 4, Monks can play important roles encourage the community toward acceptance and nondiscrimination for PHAs. They can help to relieve mental problems of PHAs as well.

is needed for

to

86

5.

community volunteers. They know the local situation, they know the people and they know how to approach PHAs and their families. 6. We have to ask for cooperation from the local sub-district committee. Since some of their committee members are from our communit!, they know the PHAs' problems and can allocate some funds to help PHAs. 7. We have to collaborate with the district health office. They can help a lot for medical services as well as patient referrats to community hospitals in emergency situations. 8. In order to be able to support PHA networks and communicate effectively with the local government offices, NGOs in this region of the country need improvement in the following areas: human resource development for NGOs field workers to be able to work with the community and PHAs; exchange of information among NGOs field workers for knowledge about nutrition, self-care, traditional medicine, human rights and others which are essentialfor PHA dai! life; o networking among NGOs and local government organizations for smooth cooperation for AIDS activities; managerial skills for organizational, financial, stress and conflict management.

We should promote activities of the local

The workshop decided to set up operation networks for NGOs in the north-eastern paft of Thailand as follows :

87

NGOs in the Northeastern Thailand with 12 Committee Members

Main Center for NGO Coalition

for Coalition at
ing 5 provinces - Surin - Buriram - Mahasarakam - Nakornrajsima - and Chaiyapoom

for Coalition
Region 6 Covering 7 provinces - Konkaen - Udonthani - Kalasin - Nongkai - Nong Bualumpoo - Loey - Sakonnakorn

Center for Coalition at egion 7 overing 7 provinces - Ubonrajthani - Amnajjaroen - Mookdaharn - Roi-ed - Yasothorn - Srisaket - Nakornpanom

Committee

Committee
on

on PWA

nformation

88

Appendix I Questionnaire No. l, ll, lll (English Transtation) Village Data Summary Sheet
About the Village

Village Population

Sub/district..........

District

Province No. of householdr ....,, ..... Female Male . persons No. of Full-blown AIDS ) (cannot take care of themselves) .....,. Persons Symptomatic AIDS care ) (can move but cannot work) .... Persons Symptomatic Non-symptomatic or

. .. cases . light

( ( cases

Are there any religious organizations to support PHAs in the village ? tr yes

Dno
Are there any folk doctors to take care to support PHAs in the village ? tr yes

Dno
About the Respondents

1 Questionn aire 2
Questionnaire Questionnaire

For villagers (not PHA or PHAs family 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 ...... Female .......

Male

Male

Non-symptomatic AlDS... persons Male ... Female ......

89

Questionnaire

For Villagers (not PHAs or PHA/Family Members)

l.

General Socio-economic Profiles

Village
District Province Date of Name of Interviewer

Subdistrict

Name of Interviewer .. lnteruiew Household No. .. .. tr Male tr Female 1. Sex ........ year 2. Age. 3. Marital Status tr Married I Single tr Divorced or Separated

4.

Education

tr tr tr

no schooling

D incomplete primary education

primary education secondary education D higher than secondary education

5.

Occupation agriculture employee (specify) ... O merchant tr government official B private company D others (specify)

tr

ll.
6.

Acceptance of PHA
Do you know any PHAs in your village ? B yes There are

7. What was your feeling when you knew that people in your village had
AIDS ?

trno tr no idea

..

Persons

tr the same as before

D fear
disgust sympathy D other (specify) you knew someone with AIDS, what would you do ? lf tr go to visit them tr not visit them due to fear of infection D other (specify)

tr tr

8.

90

9.

Have you ever attended the funeral of a PHA ? B yes O yes, but did not drink or eat anything served E Never, because (reason) 10. Do you think that children of PHAs should attend the same school with normal children in the village ? tr yes no because (reason) 1 1. What do you think when PHAs organize AIDS activities and visit other PHAs ? tr agree u disagree because (reason) 12.lf you had PHAs in your family, what would you do ? tl family members should take care to them tr should be sent to the hosPital tr other (specify) 13. How can people in the village help PHAs or their families ? tl go to visit them tr give some financial support D set a village fund to support them O other (specify)

lll. Garing for PHAs in the Community

14.Are there any PHA networks for employing PHA Occupation ? D yes

trno
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 ? tr yes

trno

17.Who should take care of AIDS orphans who last their parent's, who should take care of them ? tr relatives fl others (specify) 18.Are there any groups in the village to help PHAs ? D yes (specify).

Eno

91

19.In your opinion, what are the most impoftant problems of PHA ?

20.!n your opinion, how can the community cooperate to help PHAs ?

92

Questionnaire 2
For PHA Family Members

l.

General Socio-economic Profiles

Village
District Province Date of lnterview Name of Interviewer

Subdistrict
Name of Interuiewer Household No.

tr Male 1. Sex .,.... year 2. Age . 3. Marital Status tl Married 4. Education

u

tr Female tr Single tr

Divorced or Separated

f,l no schooling
incomplete primary education D primary education tr secondary education tr higher than secondary education

5.

Occupation

tr agriculture tr employee (specify) ... .. tr merchant

I
6.

tr
tr

government official private company others (specify)

Relation with PHAs ?

B father tl fl D wife D close relative

children D

mother tr

husband brothers/sisters

tr

other (specify)

ll. Acceptance
7.

of PHA

ls any PHA your close relative ? o yes There are

8.

B unknow What was your feeling when you found out ? tr the same as before tr fear O disgust D sympathy/pity tr other (specify)

Ino

..

.. persons

93

9.

lf you knew your relatives had AIDS, what would you do ? tr 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 B yes, but did not drink or eat anything served U Never, because (reason) you think PHA children should attend the same school with normal 1 1. Do children in the village ? tr yes tr no (reason) you think when PHAs organize AIDS activities and visit other 12.What do PHAs ? tr agree o disagree (reason) people in the village help PHAs or their families ? 13. How can B go to visit them tr give some financial support D set a village fund to suPPort them tr other (specify)

lll. Caring 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

Bno
16.Are there any funds to assist PHAs in the village ? tr yes

trno
f

f there is no f und, how can we help PHAs

? .. '

'.. ...

17. Do you think that

the hospital will not accept PHAs ? tr yes

Ono
18.Who should take care of AIDS orphans ? tr relatives tr others (specify) 19,Are there any groups in the village to help PHAs yes (specify).

Bno

94

20.|n your opinion, what are the most important problems of PHAs ?

21.In your opinion, how can the community cooperate to help PHAs ?

95

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 tnterviewer (can be omitted)................Household No Female 1. ........ year 2. Age Divorced or Separated 3. Mlrital Status Married 4. Education fl no schooling tr incomplete primary education fl primary education o secondary education tr higher than secondary education 5. Occupation tr agriculture El employee (specify) .... tr merchant tr government official tr private company tr others (specify) ........persons 6. Number of children still E No 7. Were any of your children infected? E 8, Did your children have any schooling problems? E Yes. lf yes, how did you solve the B problems? 9. Did your spouse also get AIDS? 10.For how long have you been infected?. ......months...... ...years PHA Symptoms now (from interviewer observation) tr full-blown AIDS fl symptomatic AIDS E nonsymptomatic AIDS

Interview n Male tr Sex . tr Single tr tr

alive.

Yes

No

96

ll

Acceptance, Caring and Support for PHAs

11.When your family heard that you had AIDS, how did they behave towards you?

12. Al 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?

Tvpes of Support
Some advice Some traininq on self-care Some referral services to health facilities Free medication Other 15. 16. 17. 18.

from Gov. Oro.

from NGO

tr tr
D

tl
o
tr

tr

tr

[l

Do you belong to any PHA groups? How did you benefit from being a group member? ln your opinion, what are the most important problems of PHAs? In your opinion, how can the community cooperate with PHAs?

97

Appendix I Questionnai res No.l,ll,lll (Thai Language)

ru.J U

r'r

rJ

m uda ryn
a

rJ

euir

qj

rir u
1

(e'lu ec uTq

{rfr uria

ryn

uHu',ru......

'Y

.. .

drun,

...... aruno.

{.ru{n......
slurJun?qt?ou......
OUA

4ru"Ju:Jrcqln?..,. .........nu {1u............... Fru ur8q...............,.nu drucu{fierr{rdfi..n.rrrin..... ......nu(d'trntr-lrvrurrunretfi"ldr'rr6u)

({?tJ ril no n'J [o.l tlJ tfi)
. | 1 u
14 tltr,

4rutr{finr{afifiornrerlrunnl{...
(r.r{[nnou
,e ai n
L14e

..........,Fru (firlntrleyvrrunrrtrild't.1rdu)

lr ttu ,o tn) [nllFlvr1.t1u t]J'Ir,.

4'rucu{fiarr{oftkifiornmra6afisrnrrfioerurn........,. ...nu (ri'rrntrJr;mrun,rl#ts{mrdu)

(rT'rri

r{ r ul

fr mr u rJ n fi )

luu{rhudfi

ar

dnanrrnraurfi

fi fi s n erillunrnirnna6o{fr

n16ou?olri

ofi
o lilfi
luu{:irudfinrjruno,sur.roffis.:lrruluduri'ruvitrinmurirun,ldo{fierrfiou?otil

ofi
o
q

lilfi
y- & hrd 6 ?a & -J, iuury F] fi rto u,nr FJilrulFrlruo{ ruury n n r{0)

nil 1 {1?u1uvr?"'l

i.

,t)n816
nJ ( []J
[Fl

?eil....
1nfi
l9 d_

.,...Ftlt
o

{1r....
rurenrr

........Fru

uni.r..
n,

.....,..nu

rXrfifirior{firrrdo (frrn

drfi nrrsr qna firiotr,llorurfiaf,vr)

...nu

t.rtJ....
lFtyr3 4nnrn0
ta d

.....Frt"t

x1u...

urfir..

........nu

98

rilufiJnlunitrefruri't

1 hJ

9a dl 11 rd aolg, ira & 1. -r.1196r (lri-[ rI sil u 4 n n tda ua s !il N su'l Ftr{ uo{ ttl u 4 n n t{a )

l. riaXnri'r

1 lilrns?nu{ ludiln1Hil

rrivglirr)vd

u{lJ1U.
tY

........F1'liln

....o11n0

s.il,mF],

.......dofidr.rnr:vni {
4 tl

floru {

t^rv

c tufiiln1Bu......

.........u1utnlil,..

1.

rnfl

t1u
LI

ras

2. 01rl.

3. dnluRlyrdil?c{ +,

Od

O
.4

Taor

urireyvdr/usn

nrafinur

v ^' \-, ulrJt},rd tnr?tjuuu{no

O drn'itlavnrufin:gr O rlrvnr.rfinrg'r O fosrdn:gr O 4tndtinflilfinur

s.

orfinudn

o o o o o o

tnBntnS

fu4'rr (rvq)
n1fl'1fl
t)

iumtnra
:t?ltiltonru
al

ou'l

(?vq)

99

o. viruumur,l?otri'jrnrutur,rqjrirufinrr4oroo,dralor-hatflulenrtondra?olil

Ol',i'ruru
otilfi
Otrivnru
z.
vi

.....nu

uffr

not

r.rled

nr

utuu qj :ir ufi n r{o

ro

nr

dra?o

rJ n

s til ula

nr

to

or

Cuoa Ond'c

Of,rrfins On.ram

Odu C

1 (avq).

g. firyirunrT u.j'rfinuluuqjrirufiorr4orosrdrriorflulentonrdvirunvrJfrfifiodT .rtr

trl

rfi

sr

rfr

suffi snmu'i r ttr t6urh

niltn
de fi n

El

O lri rnr sll

rd

t{o

Cdu
o.
r,t

1 (rvq).
tnr

r n fi

{n r fl fr 'r fl 1r n to Fr d

vi

ru

41il dc u I r u rtvl u3olri

CtrJrurur(nrrurJnfi

O1:lnu:Jnfi
O trl
uqlhifi
urST

u6oorumfi rn?v{

Otilhl
t

r1\?1v.

o. viru6n'jrqntor{6orrdoo,re6surari.:fialxGsurdfl'rri'ut6n'[uuqjriT

uri'r 1 lrJuiolri

CnrQr

Olilrr'rr
raflurynn$anuou
dea&J

rnrrvovle.

t t . yiruhnodr.rtrfr{fiorudotri,jrsyrfluraf .rulo{1rirfl1?'riln{rurYuvirfinnrruoontrJrdflil

Orfiufros
dra 3
n tfi

r?rt1v.

Otrirfiufrtfl
r

tv\t1v,
vrJfl rifi
o dT

z. ur n fi {fi

^ alutiruvi'r u vi runoen

rlr
nr

O'l#n

r q un ro'r i n il 1fi

n'[u

ir

6o u nr t ahin r r q un

nrQed{lilTr.ilNinurn ,t ] r_, 0u.l (ryq).

100

t e.

viru6 orjr nu'lur,lqiriluto.t ttl FrQrfrolrina {fr n rdo/nrrou nri0odr':1a

Otr-lrdsru

Od?flrudonmriu \-,
/aY'd
Fl't

?n{no{ylil{efl tuno I
"l (?yq).

r-rou

n"i

+. tuu

qj

rir uvi r ufi n r ad'or fu

q'

il {fi

t{ofr

d.r ra?ru

o'rfi

O
t s. tur,r
qj

fi
ot
4

ravrrv'ludTu^fln..............nrjru

o lilfi
flr
uvi r ufi n
T

r{n

fr'.r n

'rdraldh

ud

ta iuri

n ru 6 o

{fi

n rfi

ouSolri

ofi
o hifi
'rVtd (ri'rlri fr notuuvi rufi

or"ir

nrari'ltl tudosvriro drtla)

l6. rtlxrrsrurnfrnrad'ofroi.,rfit,.hiou'rnf,u{finr4or{rin:gr"[ula{r,rflruT

nr.r6otrj

cfi
olilfi
t z.
n

rnifi

qn

tos {F or r{o

fi rnio uri nr

strl vi ru6 nrj rlnnde

u 4 un

r6n 1

Oryrfi
a.'[uu rir udfi
vn {

C)du'l (?y!).
t
qj

o.r nin

u fi fi fi n n

erxlun mri r a ru d a {fi

nr

rdo

ulotri

\-rN ?yq{oo{nnt/nqil

Aadq

olilfi

101

t g.'[uri'n

uvr

o.: vi r

vi

r u6 rri r rln; ra. fi d r d'r1

t ot (fi

rdalfr uri

o.

vi

r uF Brj

il fl u

Fr

? ?s v

dr

r fi s rTuo d r r tr'lun mri r a u,r d o {6

nr

rd

102

1ad z
uu u
- at ril| rd u ut ttq,

fut*nirg
I

r f, C rio.r qih n r{a

l.

{o+ail2 !ilrns?nuH tufiiln1Hil

.......d0{dunrsni.

daflridrnrrrni......
rilPl 2. o1q.
1.

......:iruratd.

{']u

rarlr

................il

3. 8{n''tuR'ly{c{il?8{ +.

Od
O

O lnn
hiffirinuurirdo

ufiTelildr/uen

nrefinsr

O pirn'ir:Jrvnrfinur O rlrvnrfinrv'r O foflilfrnvr O 4.rnc'rrioeilfin:n

s. ardnradn

o ln:fn?nt o flJq1{ (rv:l) o o iumtnra o u?tsvrrontu o J "l (rvq) ou

eV t

n1fl1Er

o. nrrrldur{ufiiu{fiarr{o

fin'r Orumnr Onrfi Orlne Odrioq Orgrfinfivr

O
Odu
1 (a;q)......:........

Onrrtn

103

z.

zu 1 A d

fi il t oq

vi

utuu qi :it ufi {fi nr r{o ro n dr,l?a il a n tfl uten ra n draiolri

Ofi

4rucu otifi
Olrivnru
vi

...........nu

a. vir uf

dnodr

shd

ey

r fi a f, m s ol

rufi

n r#a ra

rr

dra?o:J r fl tfl ule

rr

ta

pr

Orou

Ondr
Of.rrfiflq Onrn'ra

Odu

1 (avq).....

g. ffionmu,he-urfiaf,vrto.rvirufinr{oroordraiorflulenrlondvirutfirJfrrifioejr.:b

t o.

urnfi

{m1 e

deulrn

to

nd virurnshldril{runilu?otri

O hlpnu:Jnfi O trt udlilfi urh#ootamfi O lilhj rm1v..

1

rri?fl

1.

d v4 s ,.1 -.-..4-.--v-..E^q-.^-^l^q^^.-i^-{.1.-{^I.' e- ! , A r yrlunFr?rqnnorqfrnrfron,trrTeuuri.rdata.rGflurde?fiurfin'lur,tqifirurfr 1 hJu?alri

O n'ra O trinm O rnar;osle........

r

z. virufinoeirrl#fffinr{shi,jrqyrfluuelr#atrartrerrunriilrTufirfisneauaonl:lrdetJ

lagurynnt{oFluou

dv^&.i

niudes rilflv...
rlir?1u...

O lrirfiudrfl

104

t s. vi1ufi n,jr

nuluuqjfiruro.t rfl n?tfiordta {fi n r{olnrounieodr{b

Ot*dar
Odcerudonrertu O^",r#{norqudeunrdo

Odu

1 (e;r1).....

t +.

lnffJnfi

udc

nreounictot {fi nrfo:jfr rlfioeirllefiu{fi nrdo

t s. 1uu

qj

fir ut owi r ufi n r e{or f,': n ri ru r{fi n r{o

;d

rl.r

rair

rfr

fi
lilfi
o?.r

tanrvluoiruuft............nriru

o
r

o.'luuqj rir ut ot

vi

ufi

v{n

no.:qud T uiuric

rud o {fi n r{oulolri

ofi
o
lilfi
1rlrlilfi nesvluviru6orir nr r:i'r e tudas sriradrlta)

t z.

ilr.rlruflerurnfin1e#.,frriolfiu.trioarniu{arrr{arfr;ntnlulnnsrurnu?olri

ofi
otilfi
r

a.

nrrfidqntor{fi

nrdofi

rioruinratrlriruhn'jrtrrrdcu4rrnrfin
1

Oryrfi
Odu
r

1
fi

(tvq)..,...

.............
n

s.

lur,r{:irudfi

a.:

ninaln4udfi

nnerrlunreriroru6o{fi

rdauiolri

u,\d.{.. Oii rvqfioarrinvn{u ohifi

105

zo .

Iufi

au:n

o.: vi r

u vi r uF n'i r rIry r,l r fi d r d'rg t o r {fi

nr

rd o1 fr

rrri

zz

. vnud

ac1 q

tJ

1J

pr'r ?q v

rr ru fi o ri'uo d xlr"Lun r ari r u ru d o {fi

nr

rd

106

qrd
v C

tuluti.ilnlHmcul !f, ilua{

l.

aA*,

lA
H
Fl

4 t{o

flailail? tilrnerenil9.l [ltfiiln1r*il .u lu

t, o g

t,

oi rr r d

gl vqt

1,'|NU1U.
{rr,l{nr,

........F11Un

....41!no..

tqvv c {aryhrd}Jn11fil.,.

-v--..-^-^.-J ....ulutnflvl

rr{Fl 2. o1rl.
1.

x1fl

O ur!.r

.........fl

3.

dn1uR1?\6il??{ C Tnnr
O

O fi

urirVraeir/ufln

4. nrefinu'r

hffi#aur,rrirdo

O drn'itlavnilAnr*l O :-lavnrufin:*T O rinflr.rfin:cr O 4rn"jrfnflufinur

5. orfivrudn

O rnunene O fu4rr lrrq)

C O O
drtTn

irmrnre
Grivrronru

z\-i \-, ou'l (tvq)

o.

nruruqnrefififiinoqj
o -i aaa

....

Fru

z.:qmrrrorvirufierr4ofrrnu?alri
fi'r:.lnmrorvirufinr{o

B. Un?flo.tyiru

di v 4,-.- "1-4-q-.f--.d-.^fUiOlfi !^ 3 h,a 3.-(ri'.1:lnrfr6nrfrounvlriFnrrdo)frflryuli5o.tn1at'iirtesuuilt6o-till?.lLttll"

o*rd

Ohianr{o C anrr{o O trifidan C f.:fidin o1q................ fl

Olilfi

Cfi

fr'rfiviru{nnrrotix1r...

10'7

9.

dlfilnrrs,rlo.ryilufinriod.rnulohi O
Alr \l

Anr{o
ltJnFlr{o
rr
&

n1nnt50

,a

&

.Y lrdyu

L-, fl.tlJxlnoEl
,Arla : L' tfiflnlmttn.)

,ledd^

to. ri'ryirurolfiorr{ol,
vt d v-

ururyirtr.
d v av t4 tv

rdsu
?UUn

..,.........

il

-.Iruyuo'ln1?11o.l{ntr [5o (fl un{']udiln,'lnnid{ tnn.[u Ava&-

fralnII)
}JO1 n','!

\,r

il !

Fl Fl LTO

zaua&a

{fi

ar

rfi ofr

ornr:ilrunnr.r

Avsir,.d \,, il n o txo llJlJol n''l?u?ao'tn''tflu1

t. lunou*rndvnrjrvirufiorrder,lSorhflrflutrnrondnru"lunxouFrirulonu'[ndBnrvi1uilfrt'iA adr.:trriaviru

z. rlnTiunuluu

{firu

n ?o

Fr

il

rU 1 fi

dfio{ rfilou{.rrlfr :j6a d r.rlrriavi ru

s.

virutdiunlrg rncln nrounft od1{lt

108

a.

virulfiiunm4 raqlnurire{rurorigr,tia rontuodrslr

?E d,

ton{u

tdiu
hve

flrid tl6n rwuuvri'r

dr ll d,

tn?iln1tunailtil rto.i nlena un nuro.tyru'ru

evuunrer{r ria {fi
nr

fi

udon'rnr,lqj:-irubJ ao./rilt.ddvp,'r n

ldiuarlnnlri
du q t,lvr \- |

fror rdn Firt{.ir s

o o o o
C

-r\
nror nair fffi n r{ora?oki

o o o o o

t s. vi'rurfl uarurfr

C 1*1,flu^u.An O rflunurfin n{rudo.

t o.
vi

.#.reqfiltau.
ru T

ulfiiurl

eyls t

r5o

v'lrfir

r n r n n rj u {A

;,4"tiri

r u rfl ua

fi n

. hufr nuvt o r yi r u

vi

r u 6 nrl r

r1

rg

r,l

r fi d'r d'rg t o.r

{fi or r{offi uri

t e.

vi

r uh n.j lE

iltun

?s vd,r

ilr

fi a rYuo d rrlr'lun

ed

r u ua do

{fi nr r4o