UNDERSTANDING PERCEPTIONS ABOUT UNDERSTANDING PERCEPTIONS ABOUT UNDERSTANDING PERCEPTIONS ABOUT UNDERSTANDING PERCEPTIONS ABOUT

DISCLOSURE OF HIV POSITIVE STATUS AND DISCLOSURE OF HIV POSITIVE STATUS AND DISCLOSURE OF HIV POSITIVE STATUS AND DISCLOSURE OF HIV POSITIVE STATUS AND

DISCRIMINATION AMONG CHILDREN LIVING DISCRIMINATION AMONG CHILDREN LIVING DISCRIMINATION AMONG CHILDREN LIVING DISCRIMINATION AMONG CHILDREN LIVING

WITH HIV (CLHIV) IN ZIMBABWE WITH HIV (CLHIV) IN ZIMBABWE WITH HIV (CLHIV) IN ZIMBABWE WITH HIV (CLHIV) IN ZIMBABWE

December 3rd 2009

Dr Ima P. ChimaTechnical Advisor

Elizabeth Glaser Pediatric AIDS Foundation (EGPAF), South Africa

SAHARA CONFERENCE 2009

ACKNOWLEDGEMENTSACKNOWLEDGEMENTSACKNOWLEDGEMENTSACKNOWLEDGEMENTSI 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.

2

ACKNOWLEDGEMENTSACKNOWLEDGEMENTSACKNOWLEDGEMENTSACKNOWLEDGEMENTS

Organisations: MOHCW, Zimbabwe

EGPAF, Zimbabwe

Donors:

3

BACKGROUNDBACKGROUNDBACKGROUNDBACKGROUND

• 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

4

BACKGROUNDBACKGROUNDBACKGROUNDBACKGROUND

• 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

5

METHODOLOGYMETHODOLOGYMETHODOLOGYMETHODOLOGY

• 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).

6

METHODOLOGYMETHODOLOGYMETHODOLOGYMETHODOLOGY

• Several questions asked but focus

on:

– Experiences with family, friends and in

community

– Stigma and discrimination –

household, friends and community

level

– Confidentiality and consent

7

RESULTSRESULTSRESULTSRESULTS

• 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.

8

RESULTSRESULTSRESULTSRESULTS

• 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

9

RESULTSRESULTSRESULTSRESULTS

• 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 .

10

RECOMMENDATIONSRECOMMENDATIONSRECOMMENDATIONSRECOMMENDATIONS

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

11

CONCLUSIONCONCLUSIONCONCLUSIONCONCLUSION

• 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.

12

THANK YOUTHANK YOUTHANK YOUTHANK YOU

13