Final Program and Oral Abstracts [International Conference on AIDS (8th: 1992: Amsterdam, Netherlands)]

TRACK D: SOCIAL IMPACT AND RESPONSE

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mbiopsy hosocial aH well as clinicdso probDles of the Ic infected
rson, the faly also has its complaints which need to be diagnosed.
uThe family of persons with rI have difficulty helncing their infected
member without o asor psychosocial support.
escripotion of Proectt Worktiug in a multidisciplinary teas= at the
only reference clinc for cI infection in this caitny population 3.t
illio, the Social Worker ma a psychosocia diagnosis of the
family ofv o the IV infected person. During support arctivites
information was gathered from weekly family group meetings and
individual interviews at the linic and from et ramurai cot acts suchml
as home visits, outings, social events and informal en counters.
sl&te During four years of providing psychosocial support ton
S amfes of HIV infected persons t he observation of complaints,
conscious and unconscious exiresse eaan d non-verbally led to
pthe conclusiong he ti the family expertiences the same p sychoiogical
M pho 9 Rout y tho e patient: negation anger, bargaining,
nteriorizaton acceptance r and the same psychosocal eactions:
discriminatiore isolatione ear of loss of job riens Te family
only lacks ihe apresence ofl th e virus. The family is co-Infected".
Okongth famiyalo h as ers H-UplMainrs Dhchned RC(UK)i Resed. c
h~ea o f am i Pop roD The diagnosis of thed psycosocal situation of the
e e an I y infected member showed that the family needs
suppornt and affection as much as i ts infected member. The family ist e
in the same psychosocial situation as the patieti. Social workers and
other ealth professionals cannot ignore the omanient of those who
spend the greatest time with the patiwent This wil lead to self helpn
capacity to hselop the infected mealmber, and to henlp other families.
es Maria ose Rosa de Castro Rua oesembergador Mari ats
or 577/Apto 201, Serra, helm H re zonte, crazil 3a.21o
n h WEST UcaeiDA: HOW CH A MYTH? Seeleyi Janet, Kajura, e.,
S or Okongo, M., Wagner, H-U., Mulder, D.W. MRUK) Research
Programme on AIDS in Ug anda, Entebbehatthe, Uganda
Objective: It is commonly assumed that the extended family in Africa provides
osafety net for individuals in times of need. The aimp of this study is to assess
family response to coping with the care of AIDS patients hlin a rural population in
South West Uganda.
sub-county in SW Uganda were visited er and assisted on a regular basis in their
homes by a counsellor and/or a medical doctor. uSeventeen (12 women, 5 men) diedo
win t hat period. D atea oedn the care received were guathered from counsellor
reports of all visits and, where appropriate, from interviews with carers after
atenteat.patient
Results: For the 17women, the mother was sole carer in cases and the daughter
in 2, in 6 cases sibl ings and parents shared care. In 1 case the woman died
unattended while the caregiver, the husband, was in hospital. Of the 13 men, 3
responsibilities. Howeveraon, in all but one of Enthese cases extended families did
provide assistance for the funeral. The medical reports on 3 patients' deaths (2
women, 1 man) gave neglect, in 1 case becausof e of poverty, as contributing to the
Cmcluson: The care of AIDS pitatients falls on the shoulders of individuals with
limited assistance from extended kin. In some cases inadequate care nay have
contributed to the rapid damise of the patient. Our findings call into question
the assumption that the extended family, in the culture undther study, provides
adequate support for AIDS patients.
Seeley, Jan et, Medical Research Council Programme on AIDS in
Uganda, UVRI, P.O. Box 49and, Entebbe, Uganda. Tel. [phone]

MoD 0068 IV-INFEC l I-. NEED FOR CCOPRSHENSIVE CARE IN
Kreyenbroek, Marion*; Kosten, Tannie*; Boer, Kees*; MulderKanpinga, Greetje*; Scherbier, Henriette** Academic Medical
Centre, Amsterdam, Netherlands
Issue/Problem: HIV-infected pregnant women are facing complex and intense problems.
A multidisciplinary approach is needed to ensure comprehensive care, both inside
arn outside the hospital, and continuity to the family system
Description of Project: The following issues will be discussed: Abortion a free
choice? Society' a moral attitude to HIV-infected women, Womens feelings about
pregnancy and motherhood, Women and the variety of their own iolividual problems.
Are we able to support the family?
Results: As social workers we see that most of the families are living their
uncertain lives in great isolation. Community based support is lacking. So far
society is failing to provide an answer to the requirements of an increasing group
of adults and their children.
Lessons learned. Awareness of society' s failure in answering these needs is
important. HIV infection imposes a threat to all members of the family, not only to
the infected themselves. Therefore recognition of future bereavement especially in
children who will lose their mother, father, sister or brother should be of major
concern.
Kreyenhroek, Marion, Academic Medical Centre, Amsterdam,
Netherlands, 020-5669111, Fax [phone].
M D 0070 PROVISION OF COMPREHENSIVE COMMUNITY BASED SERVICES TO CHILDREN/FAMILIES
WITH HIV INFECTION IN THE US. Boland, Mary*; Harvey, D.*; Burr, C.*; Conviser, R.*
*National Pediatric HIV Resource Center lniversity of Medicine & Dentistry-New Jersey
Medical School, Newark NJ.
Issue/oroblem: The HIV epidemic is growing rapidly among children, adolescents and women in the US and
increasingly affects entire families, comprised largely of low income persons of color. Taken together,
children, youth, and women account for over 12% of all AIDS cases. The problems associated with poverty,
drug use, and chronically limited access to health care make it particularly challenging to provide for the
social service and mental health needs of HIV affected families. In 1988, a national demonstration program
was funded to develop comprehensive, community initiated programs responsive to the needs of families with
HIV infected children. To receive funding, sites had to provide access to and coordinate health care, social
services, nutrition, mental health, family support, and educational and vocational assistance.
Description of the Project: In 1991, the National Pediatric HIV Resource Center surveyed the 24 direct
service sites to gather information on the history and structure of the demonstration projects and compile
information about their client populations including number and characteristics of clients served.
Results: Completed surveys were returned from Project Directors at 21/24 sites in 18 states, Puerto Rico,
and the District of Columbia. Each site developed a program specific to the needs of the community while
assuring access to a core set of services. The projects reported serving 12,113 women, teens and males
and 2,661 children (under 12 yrs) in 1991. Injecting drug use was implicated in adult infection with the
majority of children perinatally infected. 11% of children were in foster care and 7%in institutions with most
living in a family setting. Over 66% received Medicaid and more than half of the remainder were either self
insured or uninsured.
Lessons Learned: The projects are diverse and represent models of direct care delivery that incorporate health
and social services delivery to families rather than individual clients. Initially focused on children, the projects
increasingly are providing services to teenagers and adult males and females including those family members
affected but not infected. The projects have been successful in reaching and serving young families at risk
for and affected by HIV in the communities in which they operate. Also, by a responsiveness to the
communities they serve they have utilized existing resources and combined public and private support to
develop comprehensive service networks.
Boland, Mary. Children's Hospital of New Jersey, 15 South Ninth Street, Newark,
NJ 07107, USA. Telephone [phone]: FAX [phone].

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