Bridging the Gap: Conference Record [Abstract book, International Conference on AIDS (12th: 1998: Geneva, Switzerland)]

12th World AIDS Conference

Abstracts 24205-24209 481

another recorded her history to be played at her son's 16th birthday, and another
explained to her three children why she relinquished her parental rights.
Lessons Learned: Patients experience the process of making these tapes
as profoundly moving. Therapeutic videotaping empowers patients to reflect on
painful issues in their lives, i.e. addiction, child neglect, premature death, giving
voice to those experiences. The legacy tapes offer parents a chance to effect how
their surviving children will remember them, and provides a permanent record of
the parent's love.
24205 The dilemmas of counseling children infected and
affected by HIV/AIDS: The moral and ethical aspects
Margret Kaggwa1, Sophia Monico Mukasa2, Peter Ssebanja2,
Zaituni Nsubuga3, Yusuf Nsubuga4, Regina Mutyaba5, Esther Mayambala6.
1PO. Box 12197, Kampala; 2Taso, Kampala; 3Mawanga Rural Women Dev't
Association, Kampala; 4Uganda AIDS Commission, Kampala; 5Uganda Human
Rights Educ. & Doc. Centre, Kampala; 6Faculity of Law Makerere University,
Kampala, Uganda
Issue: According to UNAIDS, every day, 1000 children get HIV and that by the
end of 1997, 1 million children under 15 years were living with HIV/AIDS, and
that since the beginning of epidemic well over 2 million HIV-positive children
have been born to HIV-positive mothers. Often these children don't know of their
serostatus. They are kept guessing what is happening to their bodies. Then there
are children whose parents either died or are suffering with AIDS. These live
under very difficult circumstances with trauma and stigma. Sometimes they are
not given the correct information. They depend on roumers from children in their
neighborhood or from school. Is it violation of privacy and confidentiality to share
such information?
Project: Mawanga Rural Women Development Association was formed to
among other things target these traumatized children and members of their
families. We visit these homes to offer counseling particularly to the children.
Results: Through sensitization seminars and visits the community's awareness
on the rights of these children has increased. More children are now coming up
to ask questions regarding their health and that of their parents. Counseling has
also made them firm to accept those conditions and when some of them their
parents die they take up the challenge of looking after their younger ones with
determination. Our Association took a lead role in mobilization of the community
during last year's World AIDS Campaign which was focusing on children living in
a World with AIDS.
Lessons Learnt: There is need to give more attention to the impact of AIDS
on the children because available services don't cover them adequately. Children
living in communities with high HIV prevalence need social support like counseling
not only to counter their trauma and stigma but also to prepare them for taking
on responsibilities when their parents die.
24206 1 A double tragedy - A story of a woman named grace
Mary Kazunga. Box 31527 Lusaka Zambia, Zambia
Issue: Grace Loses her husband who died of HIV/AIDS. She also loses family
property grabbed by her husband's relatives.
Project: Grace was terminally sick with HIV/AIDS. Her husband pre-deceased
her from the same ailment. After the death of her husband all the money and proprty belonging to the family were grabbed. Grace although at this time extremely
weak and sick wrote to the YWCA to seek assistance in order to retrieve the
property for the benefit of her only daughter. On receipt of the letter the YWCA
sent its lawyer to interview her at her residence, unfortunately the lawyer was
informed that Grace had diedi a few days before. Nevertheless the YWCA decided
to investigate and offer assistance even though post humously, moreso to help
the surviving daughter. The investigations revealed that the uncle had withdrawn
all the benefits and monies from the husband's employers and the bank on the
pretex that he was going to look after the surviving daughter in his capacity as the
administrator of the estate. It was further revealed that he had used the money to
buy a Mercedes Benz car and had kept all other Grace's family property for his
own personal use.
Results: The surviving daughter was thus made destitute and had to be kept
by her maternal aunt who herself had a very large family under her care this
deprived her of any chance to go to school inspire of her having the potential of
advancement.
Lessons Learned: Property grabbing is unfair and cruel practice as the children who are left by parents who die from HIV/AIDS are mostly minors, are unable
to fight for their rights. They need support such as the YWCA has been trying to
give.
S24207 1 Family caregivers of AIDS orphans in Zimbabwe
John Fischer K. Mutikani. 3597 Northcliffe Rd. University Hts. OH 44118, USA
Issues: About 8% of all children under 15 have lost a mother due to AIDS in

Zimbabwe, and by the Year 2000 an estimated 600,000 children will be orphaned
through AIDS. This is overwhelming for family caregivers, old grandparents living
in poverty and ailing health. Innovative and cost effective interventions need to
be designed to enhance the family economic base and caregiving role.
Project: In Zimbabwe orphans are cared for within the extended family but, the
large numbers of AIDS orphans and poverty make it difficult for family caregivers
to look after them. The intervention is to explore viable ways of caring for AIDS

orphans within their communities and family fabric and determine appropriate
strategies that will enhance the economic base of family and community using
available community resources, including appropriate health education, sustainable, cost effective methods such as income generating projects and revolving
funds, to empower the family and community in self-sufficiency. Socio-cultural
practices prohibiting women from assuming a meaningful role in community and
national development must be addressed to increase Zimbabwean women's
power in decision-making.
Results: The innovative intervention strategies that are culturally sensitive, and
acceptable to the Zimbabwe community, will enable them to effectively continue
caregiving. This will result in capacity building and community participation in the
fight against AIDS and mass orphanhood.
Lessons Learned: Socioeconomic empowerment, capacity building and community participation have been successful in the care of AIDS patients and
orphans in some countries and have a potential for success in family caregiving
of AIDS orphans in Zimbabwe.
24208 Canada's foreign policy with a focus on AIDS affected
children
Nancy O'Rourke. 104 Patterson Avenue, Ottawa, Ontario, K1S1Y3, Canada
Issue: The overall objective of this research is to provide recommendations to
the Government of Canada, with respect to its foreign policy and concomitant
programme activities, on how to address the issue of AIDS affected children.
Project: The Canadian government supports the United Nations Convention on
the Rights of the Child (UNCRC), in that it provides a framework that is compatible
with the development of policies and programmes in support of AIDS affected
children. However, as this paper argues, ratification of the UNCRC as well as
other similar decrees must also be examined for their potential to ensure appropriate and responsible action. Although the UNCRC has developed a language
that breaks away from, and even challenges, the more entrenched hierarchical
approach taken toward children, it is none the less a constructed discourse. AIDS
affected children may be the subjects of recognized needs and aspirations but they
are also objects in the hands of others and are often ignorant of what is being done
ostensibly on their behalf. For children to be the recipients of the outputs, benefits
and long-term results of development strategies, programmes and policies, they
must be empowered to identify for themselves, their needs and concerns.
Results: Canada's foreign policy, as well as the Canadian International Development Agency's (CIDA) Strategy for Children, has taken a strong lead in
supporting, promoting and observing the UN Convention on the Rights of the
Child. However, the Canadian Government is also faced by a number of problems
and constraints, namely: I. meeting the goals of Canada's Overseas Development Assistance; II. analyzing the "circumstances" of AIDS affected children;
III. the relationship between ratification and accountability; IV. HIV/AIDS as a
"development" issue; V. responses to the needs of the "girl child;" and, VI. the
empowerment of children.
Lessons Learned: In order for Canada's foreign policy to respond positively
to the plight of AIDS affected children, it is crucial that Canada adopt a multi-sectoral approach which critically analyzes the political, economic, social and
cultural factors surrounding children and which promotes the empowerment of
their knowledge with regard to both themselves and their circumstances.
24209 [ Permanency planning services for families affected by
HIV/AIDS: A multi-disciplinary, decentralized,
collaborative project in Washington, DC, USA
Jeffrey Menzer1'2, T. Wells2, S. Hyman2. 1300 / Street, N.E. Suite 106
Washington, DC; 2Consortium for Child Welfare Washington, DC, USA
Issue: Upward of 2,200 children in Washington, D.C. are estimated to be orphaned due to the death of their parents from AIDS by the year 2000. Most
parents with AIDS have not completed legal plans for custody or guardianship of
their surviving children. Nor are there adequate programs and services to assist
parents with the legal, medical and psychosocial issues. Permanency planning -
or life planning - results in a plan for these children's futures and should be part
of comprehensive services provided to families affected by HIV/AIDS.
Project: The Consortium for Child Welfare, a local coalition of non-governmental child welfare organizations, conducted a year-long needs assessment to
define the local problem, to develop strategies for providing permanency planning
services and to identify needed supportive policies and legislation. With federal
government and local foundation funding, the Consortium established the Family
Ties Project to implement the needs assessment findings. The goals of the project
are to: 1) decrease the risk of abandonment of children affected by HIV/AIDS
through the development and provision of comprehensive permanency planning
services and 2) develop policy and systemic reform which supports the parents'
choice in planning for their children's life plans. Project services are accessed
through community-based case managers at 10 local sites.
Results: During the first year of operation, this 15 agency collaboration has
served 31 families, including 72 children affected by HIV/AIDS. Most of the

families have received legal services, the most common legal issues being custody-related, entitlements and living wills. Mental health services, including art
therapy, have been provided. 75 case managers have been trained on issues
relating to permanency planning. 55 caregivers have been trained on caring for
children affected by HIV/AIDS. A Standby Guardianship law has been drafted.
Lessons Learned: Permanency planning services can be effectively provided
to families affected by HIV/AIDS through a multi-disciplinary, decentralized, col