AIDS victims need family members' support

By Chris W. Green

JAKARTA (JP): The scourge of AIDS has hit Indonesia. Although only 309 people have been diagnosed as being HIV positive, experts estimate that more than 200 times that number are actually carrying the virus that causes AIDS. Within the next few years the total could rise to over half a million.

Acquired Immune Deficiency Syndrome (AIDS) cuts broadly across the population, although it has hit the under-30s particularly hard. It affects people from all walks of life -- university graduates, parking attendants, secretaries and servants. Unlike in some countries, the disease in Indonesia is not limited to certain "high risk" elements of the population. Nearly 60 percent of the known cases resulted from heterosexual contact, with almost half of these being female.

Despite the common assumption that all women who get AIDS are prostitutes, the large majority are monogamous and have never had sexual relations with anyone other than their husbands.

We all know that AIDS is a disease for which there is no cure yet. Further, by weakening the body's immune system, it allows infection by several debilitating infections, such as pneumonia, tuberculosis and cancer. These diseases affect the ability of the infected person to work and may demand constant nursing and expensive medications. However, a hospital is normally not the best place to provide care in such cases; hospitals are expensive, have limited capacity and are sources of infection that can be dangerous to someone whose immune system is under threat.

The Indonesian government's policy is that care for people with AIDS (PWAs) should be provided by the family group. This policy is endorsed by the World Health Organization and most non- governmental organizations working in this field. However, several factors combine to limit the effectiveness of this approach unless proactive steps are taken with the affected families to prepare them for the task. It is this challenge that has been accepted by Yayasan Pelita Ilmu (YPI), a non- governmental organization working to address AIDS in Jakarta.

Generally the doctor is expected to be the primary source of support to his patient and his or her family. But doctors are busy people, says Dr. Samsuridjal Djauzi, a medical advisor to YPI, and as the bearers of bad news, they are often not best placed to provide such support.

YPI has developed a multi-pronged program to offer a wide range of support to all those affected by AIDS, the infected person, the immediate family and to the community in which they live.

Fear of infection is the most common challenge. It is now certain that infection cannot come from social contact, says Samsuridjal. Human Immunodeficiency Virus (HIV) is transmitted primarily by sexual relations. Needle-sharing by drug addicts, transmission from mother to baby and the use of infected blood in transfusions (now very rare) account for all but a very few of the remainder of the cases. But most people either do not know or do not accept these facts. The result is that infected people are frequently banished to a remote part of the family home or even to a different house. In extreme cases they may be expelled from the family. Fear is made worse by the stigma attached to the disease, Samsuridjal adds. Not only must we dispel the family and public's fear of the risks; we must also provide counseling to help them accept the causes.

Once the barriers to acceptance have been overcome, the family needs information on how to take care of the infected person. Practical things like washing clothes and bed linen, food preparation, disposal of rubbish and precautions to avoid passing on minor infections to the patient can best be demonstrated by example. Family members will also want to know about medications and how the disease may progress. They'll want to know how they can improve the remaining period of life of the person concerned. And they may need psychological or spiritual counseling to help them come to terms with the burden that they now must bear.

One way to provide this support is through Buddy Service. This service provides a friend for the infected person and all those close to him or her, says Retno Windrati, Volunteer Coordinator at YPI.

"The Buddy is a specially trained volunteer who is paired with the PWA on request. Being (initially, at least) an outsider, the Buddy can be neutral in a situation where confidentiality is crucial, and where people affected may feel anger or frustration with other health care workers," says Retno.

The first task of the Buddy is just to listen, to be there when needed, to be a point of contact with information and resources. The Buddy won't make judgments and doesn't attempt to pressure the client into any action. The Buddy can act as a line of communication with the family, Retno adds.

It is often very difficult for a person to tell the family about the infection; imagine a husband having to tell his wife, or a young man having to tell his parents not only that he is dying, but also that he is gay. If required by the client, the Buddy will keep the secret even from the immediate family, but he or she can help to encourage an environment in which the information can be shared.

The Buddy is not expected to be an expert, but can call upon the resources of YPI when necessary. These resources include expert counselors and spiritual support for people of most religions. Legal advice is available for cases where the client is sacked from his job because of his illness or if he wishes to make a will. Advice on diet and on exercise is also offered, as well as assistance in selecting alternative therapies (such as acupuncture or reflexology) and financial assistance. Medication and treatment in AIDS cases can cost up to Rp 1 million per month, says Samsuridjal. This can be way beyond the means of the family, particularly if the breadwinner is out of work as a result of the disease. Although funds are limited, YPI tries to help such cases.

As the condition of the client deteriorates with the progression of the disease, more specific help may be required. A car may be needed to take the client to the doctor. If the client is in hospital for treatment of one of the more severe infections, the Buddy will visit. Later, says Retno, the Buddy may need to take the initiative in helping the family form a Care Team to look after the client around the clock. And finally the Buddy must be prepared to assist during the last few days of the patient's life, and help with funeral arrangements when the final moment comes.

As noted, the family is the key in providing the immediate support and must always represent the first line of responsibility.

We cannot ignore the fact that some people infected with AIDS may have no family. A husband may infect his wife then pass away, leaving the ailing wife to look after herself and the children. Or the infected person may be unwilling to inform the family. Others of the family may be working, in some cases away from their home town; giving up work to look after a loved one may not be an option.

Poor

"Many HIV-infected people come from poor families with homes that are not suitable for recuperation from diseases like tuberculosis," says Samsuridjal.

"And unfortunately there are cases in which the infected person has been thrown out of the family," says Soemartini, chairperson of YPI. Families cannot be compelled to look after their members; communities cannot be forced to accept a person with AIDS into their midst.

For these reasons and others, says Dr. Zubairi Djoerban, another YPI medical advisor, "some form of temporary accommodation for people with aids is needed. Not a place of quarantine; since HIV can only be transmitted in very specific ways, isolation does not help. Organizations throughout the world have campaigned strongly against the use of quarantine, a stand totally supported by the Indonesian government."

Such a place has many functions that buttress the overall plan for family and community support for PWAs. For this reason, says Husein Habsyi, Manager of Caring Services at YPI, the facility set up by YPI has been called a Community Support Center for People Living With HIV/AIDS (CSC-PWA). It acts as a model for acceptance by the community; by locating the CSC-PWA in a rented house in the middle of a densely populated part of Jakarta, YPI confronted the challenge of public concern head on. We met with local community leaders to explain the plan; YPI's medical advisors described the methods of transmittal so that the risks were understood. We also encourage local youth groups and other community organizations to make use of the Center for their meetings. Although at first there was a natural fear and anxiety, after six months this has almost completely evaporated.

Families who accept the challenge of caring for a PWA in the home want to know how to proceed. One of the functions of the CSC-PWA is to address this need. The CSC-PWA demonstrates practically that special accommodation or facilities are not required, says Husein. The staff, who are not medically trained, mix easily with any residents without taking special precautions. They show how to take care of laundry and preparing meals. Members of the resident's family are strongly encouraged to stay and to assist or take charge under guidance from the staff. This eases the later return of the PWA to the family home.

The CSC-PWA provides short term accommodation for infected people in various situations. The PWA may have come to Jakarta from outside town for treatment, and not yet be strong enough to travel back home. He or she may have been discharged from hospital after recovering from tuberculosis, but the family home may be unsuitable for recuperation.

Even for the most supportive and caring families, the stress of looking after a PWA in the home for two years or more can be a very heavy burden. Occasionally they will need a holiday, relief from the daily stress of coping. The CSC-PWA offers respite care for the family member with AIDS. This allows the family to get away and shrug off the load they carry for a weekend or longer.

"The work of the CSC-PWA does not conflict with the policy of family support for those infected," says Zubairi. "On the contrary, it is complementary to this, helping families and the community to accept PWAs and provide them with the best possible care." Adds Retno, "All YPI services, including Buddies and use of the CSC-PWA, are provided free of charge to all."

Many reading this may be members of the expatriate community and wondering what all this has to do with you. Perhaps you're even waiting for the punch line requesting your generous donation. But that's not the intent (although YPI can always use that kind of support).

First, ignorance about the disease and its risks exists also in the expatriate population. Frequent business travel is common in this community and sometimes the pressures of hospitality or loneliness can provide temptations. Is there need to offer expatriates a source of information on AIDS and its risks and prevention? If so, how would this best be done? What about guidance for our children? How well is that handled in schools? Could there be a need to provide them with information or training sessions?

Second, many expatriates are in management positions and are involved in directing the policies of their companies. Employment policies towards PWAs tend to be unclear and governed by emotional and uninformed reactions. Several foreign companies have taken a lead in setting out clear, non-discriminatory policies towards employees and applicants who are HIV positive. Such policies must be supported by programs to educate other employees to understand that there is no risk in contact with infected work mates. How can this drive best be supported?

Finally, several members of the expatriate community have expressed a wish to assist in addressing the challenge of AIDS in Indonesia. But language can be a barrier. How can a program be structured to benefit from this interest? Should it be directed at expatriates only or should it, can it, support the local community programs?

Yayasan Pelita Ilmu is willing to take leadership in promoting discussion of these points and in further development if demand exists.

One final statistic: of the people known to be HIV positive in Indonesia, more than one third are foreigners. AIDS; nothing to do with you?

Chris W. Green is Buddies Coordinator, Yayasan Pelita Ilmu.