|Comfort and Hope: Six Case Studies on Mobilizing Family and Community Care for and by People with HIV/AIDS (Best Practice - Case Study) (UNAIDS, 1999, 98 p.)|
HIV/AIDS in Thailand
By the end of the century, mortality due to AIDS could become the leading cause of death in Thailand, according to the Thai Ministry of Public Health. Two-thirds of the approximately 800 000 persons currently living with HIV/AIDS reside in the northern part of the country.
Rates of infection have historically been high among women who are or have been sex workers, but recently the greatest rates of increase have been among women in stable relationships who have never been sex workers. HIV prevalence in the north among women attending antenatal clinics is between 4% and 8%.
Based on current prevalence rates among pregnant mothers, by the year 2000 there will be approximately 120 000 AIDS orphans, and more than 60 000 cases of infants with AIDS. Increasing AIDS-related mortality among infants and young children may reverse many of the gains made by effective national child health programmes, such as the Control of Diarrhoeal Diseases and Expanded Programme on Immunization.
Meeting place of the Sanpatong Home-based Care Project.
Facts about Thailand
Total population (1995):
58 791 000
Infant mortality rate
(per 1 000 live births):
Life expectancy (years):
Per capita GNP (US$):
Surface area (km2):
The Sanpatong Home-based Care Project works in the Sanpatong area some 25 kilometres south of Chiang Mai City. A joint project of the Thai Red Cross Society health centre in Sanpatong and the district hospital, it currently works with about 600 people living with HIV/AIDS.
The project aims to make it possible for families to support and care for persons living with HIV/AIDS at home. (Note that the concept of home care is different in Southeast Asia than in Western countries, where it generally refers to home visits by doctors and nurses for purposes of treatment or monitoring. In contrast, people served by this project are taken into a hospital or clinic by their families when they need medical attention.) Services include training for family members, health care visits and referrals, provision of some basic necessities, meditation and spiritual instruction in the Buddhist tradition, and support activities, including a weekly club with visiting speakers and doctors.
Goals and principles
It is traditional in the Buddhist culture of Thailand for several generations of a family to live together, and to look after one another when one member is sick. The goal of the project is to reinforce this traditional value through home care training and other supports that will:
· permit primary health care for people living with HIV/AIDS to be provided at home;
· change negative attitudes of family members, friends and the community to HIV/AIDS; and
· promote self-care and self-reliance of families and individuals infected or affected by HIV/AIDS.
As a secondary goal, it is hoped that this strategy of care will reduce costs both to individual families and to government health services.
A holistic approach to home and community care
The Sanpatong area is one of the hardest-hit by the AIDS epidemic in Thailand. Since the late 1980s, the hospital system has been increasingly hard-pressed to provide care for all of those who needed it, with as many as 60% of beds being occupied by persons with HIV/AIDS in recent years. The majority of these cases are of people in their most economically productive years.
Families in which a member has HIV/AIDS face a variety of devastating challenges, including:
· social stigma and discrimination;
· conflict between the desire to have children and the fear of infection;
· enormous emotional loss when family members die; and
· economic hardship.
In 1992, a group made up of staff nurses from Sanpatongs Red Cross health centre, volunteers from the faculty of medicine at Chiang Mai University, and Chiang Mai public health staff perceived an opportunity to create a new kind of care project. Coordinating the group was Somboon Suprasert, a family health nurse practitioner and AIDS researcher and lecturer in the Department of Family Medicine, Faculty of Medicine, who had just retired as head of the departments research unit. Mrs. Suprasert (better known as Auntie Boon to her patients and students) was continuing to work as a consultant with both the university and the Red Cross, and had extensive community contacts, and so was well placed to bring the group together.
Pooling its wide variety of practical and academic experience, the group was able to agree on several fundamental ideas, the first of which was the importance of a holistic approach to care.
As they saw it, a holistic approach should be one that provided bio-psycho-social support:
· bio: treatment of symptoms;
· psycho: helping to deal with stress and worry, solve problems, improve attitude; and
· social: improving ability to cope with, participate in, and be accepted by the community and greater society.
Their main idea was to help people living with HIV/AIDS be treated at home, a strategy that would reinforce all three parts of the holistic approach. Such a project, they knew, would require education and skills training for many people: family members, volunteers from the community, and even village leaders. It would also require funding and resources in order to get started and to sustain itself.
At the same time, the group, an NGO supported by a number of agencies recognized the importance of providing support for people who are HIV-positive but have not developed full-blown AIDS. In addition to meeting these peoples needs for emotional support, the groups strategy included providing training on practical matters of self-care and self-reliance before the people get sick. Again, it was intended that this preparation would eventually reinforce all three parts of the holistic approach.
Major elements of the project
In the years since the project began, the group has pursued its holistic approach to care by creating a continuum of activities. These begin by dealing with the needs of individuals (health care, psychological reinforcement, etc.) and extend to community mobilization and creating money-making opportunities for people living with HIV.
An essential ongoing activity is recruitment and training of volunteer medical personnel. The latter was facilitated by the creation of a manual for these personnel.
Recruitment of people living with HIV generally occurs either through word of mouth among community members or by doctors referral. In addition, the testing programme at the Sanpatong Hospital refers all persons found HIV-positive to the project, usually to the HIV club that gets together once a month.
Currently, there are approximately 600 persons living with HIV served by the project, about 60% female and 40% male. The age range is from 25 to 45. About 60% of people living with HIV are asymptomatic, with 20% presenting some symptoms and 20% having full-blown AIDS.
Modelled on the well-known Wednesday Friends Club in Bangkok, the Thursday Club is a monthly lunch gathering and support group for men and women with HIV/AIDS. It regularly attracts 40 - 50 people to its lunches, which includes meditation, exercise and talks from a wide variety of guests. Visiting speakers and presentations have included actors from a visiting international musical show, a Tao Yoga master from Korea, the White Line dance group (an AIDS education performance troupe) and vegetarian cooking classes from a Buddhist meditation centre. A particular highlight, and evidence of support from the highest levels of Thai society, was a visit by one of the Kings cooks to prepare a meal for the club.
Medical attention is available at each meeting, and food and herbal medicines (including honey tablets) are also offered. The lunches are also used as occasion for the home care team to monitor the health of club members. Finally, the club is the first stage in the projects strategy of educating people living with HIV/AIDS about self- and home-care before serious illness has reduced their mobility and normal functioning.
Training of people living with HIV and family members
The project conducts regular one- and two-day training sessions about home care each month, mostly in Chiang Mai City. Thirty group sessions, each comprising 30 participants, have been held each year since 1994 and have thus reached about 900 persons since their inception. The sessions are open to all members of the public, and follow a format that has been worked out over time:
· icebreaker exercise to reduce participants initial nervousness;
· individual introductions so that people get to know each other; and
· group meditation.
The sessions then break into small training groups based on two methodologies: problem-based learning and focus group technique. These smaller groups also follow a set format:
· HIV/AIDS education: all members are encouraged to tell their story and express their feelings, fears, and questions about HIV/AIDS. This leads to discussion and provision of information about the disease, its symptoms and what can be done about it. A particular focus is on practical ways to live with HIV/AIDS in ones life, including the importance of regular exercise, proper nutrition, condom use, etc.
· practicalities of home care: subjects discussed and demonstrated include universal precautions, dressing wounds, taking medication correctly, changing bed sheets, use of bed pans, bed baths and sponging, and utensils needed.
· developing confidence: the final part of the session aims to help participants gain confidence in themselves and their capabilities. In particular, they are shown how to feel strong and capable of self-care.
Group training is an important part of Sanpatongs efforts.
In all cases, home visits are made by both volunteers and nursing staff in order that people living with HIV and caretakers can be supervised and monitored.
Extension of club and training of health-care volunteers
Once members have received the home care training and have had time to get experience doing it at home, they are encouraged to set up an HIV club in their own village. There are currently six such clubs in outlying villages. Not only people living with HIV but a variety of other people have aided in organizing these clubs, including village headmen, health system personnel, health volunteers and Buddhist monks.
Health care volunteers are also recruited to receive orientation and the home-care training. Once these activities are completed, the volunteers receive medicine boxes to use in their home-care visits. The medicines are for primary care of conditions such as diarrhoea, fever, cough, skin diseases, headaches, and stomach aches.
The project helps bring together small support groups of about 30 persons living near each other in sub-districts. These support groups help people living with HIV to share their experiences and concerns with each other. In order to create a family feeling, sightseeing trips and overnight camping at resorts are organized for these groups.
Meditation and spiritual care
Spirituality has always been important in Thai life, and so spiritual care is a well-accepted and necessary part of the projects work. In particular, meditation is taught by local Buddhist monks as a means of helping hard-hit people find tranquillity and the mental strength to continue. As well as teaching meditation techniques, the monks provide people with spiritual guidance on how to protect themselves from suffering and how to put life and death into perspective.
The project arranges for groups of persons living with HIV to spend week-long retreats at the Wat Sangu temple in Ampur Hot. There they receive training in meditation, and benefit from a healthy diet and exercise.
As well, the Brahma Kumaris World Spiritual University runs free workshops for people living with HIV on such topics as positive thinking, self-esteem and meditation. It also does workshops on vegetarian cooking.
Material support to families
This activity was initiated as a way of providing practical support to families looking after people living with HIV. School funding (i.e. childrens fees to attend school) blankets, clothing, food and milk are provided to these families, using donated funds and foodstuffs. A donation of 600 000 baht (approximately US$ 17 000) from the Thai Red Cross Society enabled the project to provide these amenities for two years. Some medicines donated by private companies is also distributed.
This activity was begun in 1995. Its goal is to get whole villages to accept and participate in the care both of persons living with HIV and their families. In coordination with existing Red Cross activities in villages in the Sanpatong area, the project holds monthly sessions in local houses. In particular, the sessions aim to involve village leaders in ensuring care for relatives of the deceased, and to encourage neighbours to help each other. Currently, sessions are held in houses, village halls and health centres and have involved 300 people living with HIV and their families. A key element in the success of this activity is preparatory visits before the date of the session. These preparatory visits are used to explain the project to village leaders and gain their support, and to encourage participation by neighbours.
The project has set up a self-supporting cooperative shop as a joint venture between the Red Cross health care centre and the Sanpatong Hospital. The shop sells food and crafts produced by people living with HIV/AIDS, and also provides work for some such people as shop attendants.
Supporting the special care role of grandmothers
In northern Thailand, HIV infection has often resulted in the illness of women who are wives and mothers. In a very special way, and particularly among poorer families who cannot afford hospital care, this places the entire stability of the family at risk.
Care-giving responsibilities in these situations often fall to the grandparents, and particularly grandmothers. Although Thai grandmothers have always had important roles in the care and upbringing of children and the running of households, this unexpected burden in their later years is a heavy one. This is particularly true if they have no previous knowledge of HIV/AIDS or of basic home care techniques such as universal precautions. In addition to the physical effort involved in home care, grandmothers are also faced with significant emotional stress from the illness of their children and HIV-infected grandchildren, and often from the social stigma surrounding such illness.
The project has begun a new activity aimed at improving the ability of grandparents to function as home care givers and providing support to them as they do so. In particular, the project has identified the special needs of the care-giving grandmother as:
· training in home-care techniques;
· ongoing, regular support from the home-care team to help her look after her sick child or grandchild;
· support from medical personnel to keep herself healthy;
· financial support from the social welfare Ministry;
· emotional support from the social worker or counsellor to help her express grief or cope with stress; and
· support and acknowledgment from neighbours and community.
Partnerships and alliances
The project has always had a strong orientation towards partnerships and alliance-building, since from its very beginnings it has included people from three distinct organizations: the Red Cross health centre, the Chiang Mai University faculty of medicine, and Sanpatong district hospital (Thai Ministry of Public Health). Links with the all three groups remain strong.
Local health care providers
The referrals described earlier from the hospital to the project are matched by referrals in the other direction. People living with HIV who come directly to the attention of the project and are in need of medical intervention or testing are first referred to the Red Cross heath centre, which is open seven days a week for primary and secondary care. Tertiary cases are referred to the Sanpatong hospital. In most cases, the Red Cross follows up with a home visit, and a letter to the health centre with an update on the case.
In addition, the local public health office has donated 2000 baht per month for the Thursday Club monthly meetings.
Government Health Care System
The Red Cross works very closely with the local health system. Proposals are made jointly by the health personnel working with villagers.
Grandmother is best
When I was growing up, my mother took care of
In a small village there are many who can help
The one who is available is Grandma
Grandma cares for children with tender love and kindness
She has experience
If Grandma can care for her grandchildren
Leave them with strangers?
As Grandma holds the orphaned baby in her
Together they comfort each other
They are each others source of strength.
The most important donors of funds, materials, and other resources for the project are:
· the Thai Red Cross Society AIDS programme which provides medications and nursing staff;
· pharmaceutical companies which donate medications, and some prominent members of the industry who have made donations of cash;
· Rotary Clubs: Rotarians have been very generous to the project (this is facilitated by the projects coordinator, who has a long history in the Chiang Mai Rotary Club and is currently its president); and
· milk companies: donations of soya bean milk make possible the distribution of milk to families containing a member living with HIV.
Other organizations and NGOs
The project has an ongoing relationship with the Brahma Kumaris World Spiritual University, which provides workshops for people living with HIV (described above).
Monitoring and evaluation
Monitoring of progress is carried out by the home-care team once a month at the lunch club. Feedback from people living with HIV is listened to seriously, and discussed by the group. Project staff have noticed that few families now ask early whether confidentiality will be maintained, as used to be the case. This indicates that as there is an increased feeling of openness among people living with HIV and less fear of stigmatization.
An objective measure of success in many people living with HIV has been the finding of substantial weight gain in people living with HIV after three months in the project.
No formal evaluation has yet been made of the project. Some indication of project success (as well as of demand for the kinds of services provided) has been the speed with which our community care activities have spread from zero to 20 houses in various villages.
Strengths of the programme
People living with HIV feedback emphasizes the following benefits:
· increased ability to enjoy their lives;
· increased quality of life; and
· increased feelings of being respected, loved, and appreciated.
Weaknesses of the programme
A significant challenge facing the programme is to maintain sufficient resources in the face of rising needs. Funding from the Red Cross AIDS Programme and the Rotary Club (the two main cash contributors) has not always been sufficient, and staff have sometimes contributed from their own savings when money has been needed.
Although the actual challenge posed by the high infection rates of HIV in the region is daunting, we believe that the project is actually gaining energy. An important element in this is the increasing help we are receiving from pharmaceutical companies, NGOs, and other organizations. For instance, the Rotary Club and the Business and Professional Womens Club of Chiang Mai recently found a volunteer to work with the project.
For more information:
Ms. Somboon Suprasert
Research Institute for Health Science
Chiang Mai University
P.O. Box 80 CMU - Chiang Mai 50202, Thailand
Fax: 6653 321 969
Other HIV/AIDS activities in Thailand
National plans are formulated under the coordination of the National Economic and Social Development Board, which is the national planning authority. This ensures smooth cooperation among the government agencies, the NGOs, and the private sector in formulating a comprehensive action plan.
Programme components assigned to 14 different ministries. Examples include: Public relations/mass media to Prime Ministers Office; AIDS education in schools to Ministry of Education; AIDS programmes for special target groups to Ministry of Interior; medical and counselling services and condom promotion among sex workers to Ministry of Public Health; condom distribution and peer education among the military to the Ministry of Defence; research and evaluation to Ministry of University Affairs.
Thailand Business Coalition on AIDS established in 1993 provides information, technical support and training programmes to Thai businesses. Helps in the development of effective and non-discriminatory measures for AIDS in the workplace policies. A large number of businesses are concerned or involved in HIV/AIDS activities, in particular the sex industry.
Coordinator Somboon Aunty Boon Suprasert (left) works with a group of project members.
Over 200 development-oriented Thai NGOs are currently participating in work against AIDS epidemic. The large national NGOs include PDA, Thai Red Cross Society, Planned Parenthood of Thailand, and Lions Club. Among the most active international NGOs are World Vision, PATH, Save the Children, and FHI.
The consortium of Thai NGOs Against AIDS, formed in 1991, has 42 members. Member organizations are mainly involved in developing models of AIDS education and social support services where the government sector has been relatively weak, and in consultation on policy issues.
For instance, NGOs work closely with disadvantaged communities and social groups and in supporting community empowerment. They also take the lead in working among stigmatized social groups. Activities include developing participatory forms of AIDS education and client-centred counselling and support services, campaigning for social acceptance of people living with HIV/AIDS and their rights to non-discrimination, and in training and employing people to work as AIDS educators and counsellors.
Best Practice Criteria
The Sanpatong Home-based Care Project provides an example of how an organizations emphasis on participation and involvement of families in caring for people living with HIV/AIDS can result in efficiency and effectiveness benefits both to individuals and to the public health system. The project illustrates UNAIDS best practice criteria in the following ways:
· Relevance: The goals and operations of the project are fully relevant to the current stage of the epidemic in Thailand, where a large number of people in local communities are presenting symptoms of AIDS. The bio-psycho-social approach chosen by the project fits very well with the UNAIDS concept of expanded response (i.e., an approach beyond the traditional goals of public health, which tend to be rooted in a purely medical model). In addition, the goal of reducing the impact on government health services is extremely appropriate in a high-prevalence area where hospital and clinics are hard-pressed by the epidemic. The projects emphasis on support for orphans is similarly relevant given the infection rates among adults of child-bearing age, particularly women in a stable relationship, in the North of Thailand.
· Effectiveness: Measured in numbers of homes visited (600 between 1994 and mid-1997) or reached through home-care training sessions (900) and types of service provided, the project appears to be effective in pursuing its goals of permitting primary health care to be provided at home and promoting self-care and self-reliance. Quality of service is safeguarded by the participation of arms of the formal health system (Thai Red Cross, Chiang Mai public health staff, and faculty of medicine at Chiang Mai University). While there is no evidence yet available on the effectiveness of using spiritual resources (talks from Buddhist monks, retreats, meditation techniques) to achieve psychological and physiological benefits for people living with HIV, experience from other fields of medicine suggest that this strategy is a beneficial one.
· Efficiency: the projects efficiency appears to be relatively high, in that it permits a large number of people to receive valuable services of useful quality at a low monetary and administrative cost. This is achieved by training unpaid human resources (mostly, though not entirely, family members of the persons with HIV) to assume care responsibilities that would otherwise be carried out by salaried medical staff in overburdened hospitals and clinics - or not at all. Efficiency is also increased by the emphasis on providing training to seropositive individuals and their families before symptoms of AIDS appear. The use of the lunch club, a strategy pioneered in Thailand, is one which has already been proven efficient as a non-threatening, low-cost access point through which infected people can receive services and information.
· Ethical soundness: the project emphasizes an open, non-discriminatory approach to HIV/AIDS that nonetheless safeguards confidentiality. It also emphasizes involvement of persons living with HIV and their family in the project. The simultaneous involvement of qualified academic, government, and nongovernmental medical personnel appears to provide a sufficient set of checks and balances to assure that accepted standards of medical ethics are observed.
Looked at from the outside, there may be an ethical concern in the component that supports grandmothers as care providers. This concern arises from the limited energy and increasing frailty of these older women and the assumption that they, rather than grandfathers, will assume this role. However, this concern is mitigated by understanding that the project aims to give grandmothers better skills to carry out a role they willingly assume (both through tradition and links of personal affection) and some measure of assistance through home visits and support groups. It relieves grandmothers of the sole responsibility for care by training other family members.
· Sustainability: the project has only been in existence for three years, and reports difficulty in securing reliable financial resources. It is not yet clear whether the personal commitment and dynamism of some of the founding personnel are necessary for the continued effectiveness and even survival of the project.