AIDS victims need family members' support<\/p>\n
By Chris W. Green<\/p>\n
JAKARTA (JP): The scourge of AIDS has hit Indonesia. Although
\nonly 309 people have been diagnosed as being HIV positive,
\nexperts estimate that more than 200 times that number are
\nactually carrying the virus that causes AIDS. Within the next few
\nyears the total could rise to over half a million.<\/p>\n
Acquired Immune Deficiency Syndrome (AIDS) cuts broadly across
\nthe population, although it has hit the under-30s particularly
\nhard. It affects people from all walks of life -- university
\ngraduates, parking attendants, secretaries and servants. Unlike
\nin some countries, the disease in Indonesia is not limited to
\ncertain \"high risk\" elements of the population. Nearly 60 percent
\nof the known cases resulted from heterosexual contact, with
\nalmost half of these being female.<\/p>\n
Despite the common assumption that all women who get AIDS are
\nprostitutes, the large majority are monogamous and have never had
\nsexual relations with anyone other than their husbands.<\/p>\n
We all know that AIDS is a disease for which there is no cure
\nyet. Further, by weakening the body's immune system, it allows
\ninfection by several debilitating infections, such as pneumonia,
\ntuberculosis and cancer. These diseases affect the ability of the
\ninfected person to work and may demand constant nursing and
\nexpensive medications. However, a hospital is normally not the
\nbest place to provide care in such cases; hospitals are
\nexpensive, have limited capacity and are sources of infection
\nthat can be dangerous to someone whose immune system is
\nunder threat.<\/p>\n
The Indonesian government's policy is that care for people
\nwith AIDS (PWAs) should be provided by the family group. This
\npolicy is endorsed by the World Health Organization and most non-
\ngovernmental organizations working in this field. However,
\nseveral factors combine to limit the effectiveness of this
\napproach unless proactive steps are taken with the affected
\nfamilies to prepare them for the task. It is this challenge that
\nhas been accepted by Yayasan Pelita Ilmu (YPI), a non-
\ngovernmental organization working to address AIDS in Jakarta.<\/p>\n
Generally the doctor is expected to be the primary source of
\nsupport to his patient and his or her family. But doctors are
\nbusy people, says Dr. Samsuridjal Djauzi, a medical advisor to
\nYPI, and as the bearers of bad news, they are often not best
\nplaced to provide such support.<\/p>\n
YPI has developed a multi-pronged program to offer a wide
\nrange of support to all those affected by AIDS, the infected
\nperson, the immediate family and to the community in which they
\nlive.<\/p>\n
Fear of infection is the most common challenge. It is now
\ncertain that infection cannot come from social contact, says
\nSamsuridjal. Human Immunodeficiency Virus (HIV) is transmitted
\nprimarily by sexual relations. Needle-sharing by drug addicts,
\ntransmission from mother to baby and the use of infected blood in
\ntransfusions (now very rare) account for all but a very few of
\nthe remainder of the cases. But most people either do not know or
\ndo not accept these facts. The result is that infected people are
\nfrequently banished to a remote part of the family home or even
\nto a different house. In extreme cases they may be expelled from
\nthe family. Fear is made worse by the stigma attached to the
\ndisease, Samsuridjal adds. Not only must we dispel the family and
\npublic's fear of the risks; we must also provide counseling to
\nhelp them accept the causes.<\/p>\n
Once the barriers to acceptance have been overcome, the family
\nneeds information on how to take care of the infected person.
\nPractical things like washing clothes and bed linen, food
\npreparation, disposal of rubbish and precautions to avoid passing
\non minor infections to the patient can best be demonstrated by
\nexample. Family members will also want to know about medications
\nand how the disease may progress. They'll want to know how they
\ncan improve the remaining period of life of the person concerned.
\nAnd they may need psychological or spiritual counseling to help
\nthem come to terms with the burden that they now must bear.<\/p>\n
One way to provide this support is through Buddy Service. This
\nservice provides a friend for the infected person and all those
\nclose to him or her, says Retno Windrati, Volunteer Coordinator
\nat YPI.<\/p>\n
\"The Buddy is a specially trained volunteer who is paired with
\nthe PWA on request. Being (initially, at least) an outsider, the
\nBuddy can be neutral in a situation where confidentiality is
\ncrucial, and where people affected may feel anger or frustration
\nwith other health care workers,\" says Retno.<\/p>\n
The first task of the Buddy is just to listen, to be there
\nwhen needed, to be a point of contact with information and
\nresources. The Buddy won't make judgments and doesn't attempt to
\npressure the client into any action. The Buddy can act as a line
\nof communication with the family, Retno adds.<\/p>\n
It is often very difficult for a person to tell the family
\nabout the infection; imagine a husband having to tell his wife,
\nor a young man having to tell his parents not only that he is
\ndying, but also that he is gay. If required by the client, the
\nBuddy will keep the secret even from the immediate family, but he
\nor she can help to encourage an environment in which the
\ninformation can be shared.<\/p>\n
The Buddy is not expected to be an expert, but can call upon
\nthe resources of YPI when necessary. These resources include
\nexpert counselors and spiritual support for people of most
\nreligions. Legal advice is available for cases where the client
\nis sacked from his job because of his illness or if he wishes to
\nmake a will. Advice on diet and on exercise is also offered, as
\nwell as assistance in selecting alternative therapies (such as
\nacupuncture or reflexology) and financial assistance. Medication
\nand treatment in AIDS cases can cost up to Rp 1 million per
\nmonth, says Samsuridjal. This can be way beyond the means of the
\nfamily, particularly if the breadwinner is out of work as a
\nresult of the disease. Although funds are limited, YPI tries to
\nhelp such cases.<\/p>\n
As the condition of the client deteriorates with the
\nprogression of the disease, more specific help may be required. A
\ncar may be needed to take the client to the doctor. If the client
\nis in hospital for treatment of one of the more severe
\ninfections, the Buddy will visit. Later, says Retno, the Buddy
\nmay need to take the initiative in helping the family form a Care
\nTeam to look after the client around the clock. And finally the
\nBuddy must be prepared to assist during the last few days of the
\npatient's life, and help with funeral arrangements when the final
\nmoment comes.<\/p>\n
As noted, the family is the key in providing the immediate
\nsupport and must always represent the first line of
\nresponsibility.<\/p>\n
We cannot ignore the fact that some people infected with AIDS
\nmay have no family. A husband may infect his wife then pass away,
\nleaving the ailing wife to look after herself and the children.
\nOr the infected person may be unwilling to inform the family.
\nOthers of the family may be working, in some cases away from
\ntheir home town; giving up work to look after a loved one may not
\nbe an option.<\/p>\n
Poor<\/p>\n
\"Many HIV-infected people come from poor families with homes
\nthat are not suitable for recuperation from diseases like
\ntuberculosis,\" says Samsuridjal.<\/p>\n
\"And unfortunately there are cases in which the infected
\nperson has been thrown out of the family,\" says Soemartini,
\nchairperson of YPI. Families cannot be compelled to look after
\ntheir members; communities cannot be forced to accept a person
\nwith AIDS into their midst.<\/p>\n
For these reasons and others, says Dr. Zubairi Djoerban,
\nanother YPI medical advisor, \"some form of temporary
\naccommodation for people with aids is needed. Not a place of
\nquarantine; since HIV can only be transmitted in very specific
\nways, isolation does not help. Organizations throughout the world
\nhave campaigned strongly against the use of quarantine, a stand
\ntotally supported by the Indonesian government.\"<\/p>\n
Such a place has many functions that buttress the overall plan
\nfor family and community support for PWAs. For this reason, says
\nHusein Habsyi, Manager of Caring Services at YPI, the facility
\nset up by YPI has been called a Community Support Center for
\nPeople Living With HIV\/AIDS (CSC-PWA). It acts as a model for
\nacceptance by the community; by locating the CSC-PWA in a rented
\nhouse in the middle of a densely populated part of Jakarta, YPI
\nconfronted the challenge of public concern head on. We met with
\nlocal community leaders to explain the plan; YPI's medical
\nadvisors described the methods of transmittal so that the risks
\nwere understood. We also encourage local youth groups and other
\ncommunity organizations to make use of the Center for their
\nmeetings. Although at first there was a natural fear and anxiety,
\nafter six months this has almost completely evaporated.<\/p>\n
Families who accept the challenge of caring for a PWA in the
\nhome want to know how to proceed. One of the functions of the
\nCSC-PWA is to address this need. The CSC-PWA demonstrates
\npractically that special accommodation or facilities are not
\nrequired, says Husein. The staff, who are not medically trained,
\nmix easily with any residents without taking special precautions.
\nThey show how to take care of laundry and preparing meals.
\nMembers of the resident's family are strongly encouraged to stay
\nand to assist or take charge under guidance from the staff. This
\neases the later return of the PWA to the family home.<\/p>\n
The CSC-PWA provides short term accommodation for infected
\npeople in various situations. The PWA may have come to Jakarta
\nfrom outside town for treatment, and not yet be strong enough to
\ntravel back home. He or she may have been discharged from
\nhospital after recovering from tuberculosis, but the family home
\nmay be unsuitable for recuperation.<\/p>\n
Even for the most supportive and caring families, the stress
\nof looking after a PWA in the home for two years or more can be a
\nvery heavy burden. Occasionally they will need a holiday, relief
\nfrom the daily stress of coping. The CSC-PWA offers respite care
\nfor the family member with AIDS. This allows the family to get
\naway and shrug off the load they carry for a weekend or longer.<\/p>\n
\"The work of the CSC-PWA does not conflict with the policy of
\nfamily support for those infected,\" says Zubairi. \"On the
\ncontrary, it is complementary to this, helping families and the
\ncommunity to accept PWAs and provide them with the best possible
\ncare.\" Adds Retno, \"All YPI services, including Buddies and use
\nof the CSC-PWA, are provided free of charge to all.\"<\/p>\n
Many reading this may be members of the expatriate community
\nand wondering what all this has to do with you. Perhaps you're
\neven waiting for the punch line requesting your generous
\ndonation. But that's not the intent (although YPI can always use
\nthat kind of support).<\/p>\n
First, ignorance about the disease and its risks exists also
\nin the expatriate population. Frequent business travel is common
\nin this community and sometimes the pressures of hospitality or
\nloneliness can provide temptations. Is there need to offer
\nexpatriates a source of information on AIDS and its risks and
\nprevention? If so, how would this best be done? What about
\nguidance for our children? How well is that handled in schools?
\nCould there be a need to provide them with information or
\ntraining sessions?<\/p>\n
Second, many expatriates are in management positions and are
\ninvolved in directing the policies of their companies. Employment
\npolicies towards PWAs tend to be unclear and governed by
\nemotional and uninformed reactions. Several foreign companies
\nhave taken a lead in setting out clear, non-discriminatory
\npolicies towards employees and applicants who are HIV positive.
\nSuch policies must be supported by programs to educate other
\nemployees to understand that there is no risk in contact with
\ninfected work mates. How can this drive best be supported?<\/p>\n
Finally, several members of the expatriate community have
\nexpressed a wish to assist in addressing the challenge of AIDS in
\nIndonesia. But language can be a barrier. How can a program be
\nstructured to benefit from this interest? Should it be directed
\nat expatriates only or should it, can it, support the local
\ncommunity programs?<\/p>\n
Yayasan Pelita Ilmu is willing to take leadership in promoting
\ndiscussion of these points and in further development if demand
\nexists.<\/p>\n
One final statistic: of the people known to be HIV positive in
\nIndonesia, more than one third are foreigners. AIDS; nothing to
\ndo with you?<\/p>\n
Chris W. Green is Buddies Coordinator, Yayasan Pelita Ilmu.<\/p>", "url": "https:\/\/jawawa.id\/newsitem\/aids-victims-need-family-members-support-1447893297", "image": "" }, "sponsor": "Okusi Associates", "sponsor_url": "https:\/\/okusiassociates.com" }