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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
2




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.
3




ACKNOWLEDGEMENTS

  Organisations:   MOHCW, Zimbabwe



                   EGPAF, Zimbabwe




  Donors:
4




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
5




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
6




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).
7




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
8




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.
9




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
10




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 .
11




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
12




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.
13




THANK YOU

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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
  • 2. 2 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.
  • 3. 3 ACKNOWLEDGEMENTS Organisations: MOHCW, Zimbabwe EGPAF, Zimbabwe Donors:
  • 4. 4 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
  • 5. 5 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
  • 6. 6 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).
  • 7. 7 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
  • 8. 8 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.
  • 9. 9 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
  • 10. 10 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 .
  • 11. 11 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
  • 12. 12 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.