AIDS victims need family members' support

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.