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03 Sahara I Chima 2009
1. UNDERSTANDING PERCEPTIONS ABOUT
DISCLOSURE OF HIV POSITIVE STATUS AND
DISCRIMINATION AMONG CHILDREN LIVING
WITH HIV (CLHIV) IN ZIMBABWE
SAHARA CONFERENCE 2009
Dr Ima P. Chima
Technical Advisor
Elizabeth Glaser Pediatric AIDS
Foundation (EGPAF), South Africa
December 3rd 2009
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ACKNOWLEDGEMENTS
I would like to acknowledge my co-authors:
Brighton Gwezera, REPSSI
Bongi Sibanda, REPSSI
Julieth Musengi, HOSPAZ
Beatrice Dupwa, MOHCW
Special thanks to the children who participated
in these focus group discussions.
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BACKGROUND
• With increased access to ART, allowing HIV
infected children to live longer, the need to
address psychosocial issues in the context of
ARV treatment is now of paramount importance.
• Zimbabwe National situation analysis*: Most
medical and non-medical services provided
nutritional and family support services whilst
psychological support to children was provided
only by a minority of respondents.
*MOHCW. 2006. Clinical and Community Provision of care and treatment for children living with HIV
and AIDS in Zimbabwe: Implications for Policy and Strategy Development. Catholic Relief Services
and Elizabeth Glaser Pediatric AIDS Foundation. Harare
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BACKGROUND
• MOHCW, Zimbabwe, commissioned EGPAF to
develop national psychosocial support guidelines
and a training manual to support health workers
and other community based workers in the
provision of PSS services to CLHIV.
• Initial consultations with stakeholders identified
the need to obtain the views of CLHIV on issues
that affect their psychosocial well-being.
• EGPAF working together with REPSSI conducted
FGDs with CLHIV in Harare and Bulawayo
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METHODOLOGY
• FGDs with CLHIV: Bulawayo and
Harare (urban); Nkulumane (urban
township).
• 36 children participated: 2 groups
already attending a support group
(SG); 1 group not in SG.
• Organisations: AFRICAID, MMPZ
(Mpilo Hospital), Nkulumane (HBC).
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METHODOLOGY
• Several questions asked but focus
on:
– Experiences with family, friends and in
community
– Stigma and discrimination –
household, friends and community
level
– Confidentiality and consent
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RESULTS
• CLHIV experience stigma and discrimination from
household level up to community level.
• Decisions or actions by carers may be
interpreted as stigmatizing and discriminating
the child.
• CLHIV need to know about their HIV status
sooner than later although age of disclosure
depends on the maturity of the child
• Caregivers should take responsibility for
disclosure but be assisted by a counsellor
• Disclosure allows child participate in care and
promotes adherence.
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RESULTS
• Age-appropriate disclosure should be
emphasized and the concept of disclosure as a
once-off process needs to be discouraged.
• CLHIV were offended when caregivers divulged
their HIV status without their consent.
• Other people child has frequent contact with can
assist if informed of type of support required e.g.
teachers.
• CLHIV need to be taught skills to develop
resilience against stresses experienced
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RESULTS
• Caregivers may not be aware of the psychosocial
needs of CLHIV and need information.
• Burn-out and frustrations arise for caregivers of
CLHIV, thus also require PSS.
• S/D may limit access to care for CLHIV – “child
will die anyway” attitude
• Caregivers may be reluctant to disclose the
child’s status and some of the discrimination is
fuelled by the need to prevent outsiders from
knowing .
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RECOMMENDATIONS
1. Need for sections of the documents that
emphasize the following:
– Disclosure of HIV status and how to do it;
– Caring for the carer;
– How adults can support CLHIV
– Building resilience in CLHIV
– Communicating with CLHIV
2. HIV programmes need to include carers as
target groups for programmes e.g. support
groups for carers
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CONCLUSION
• HIV interventions will better address the
needs of CLHIV if child participatory
approaches are used.
• Individuals and organisations should seek
to understand the perceptions of CLHIV
on disclosure and discrimination as this
brings better insight into the challenges
they face and may provide useful insights
on how to address them.