Working with Children Affected by AIDS : Experience and Lessons
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Transcript of Working with Children Affected by AIDS : Experience and Lessons
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Working with Children Affected by AIDS : Experience and Lessons
Presentation at the
USAID/FHI Implementing Partners’ Workshop
on OVC and HIV/AIDS
Dr. Balwant Singh
India HIV/AIDS Alliance17th February 2004
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• Worked with NGO/CBO partners in over 40 developing countries of Africa, Latin America, Asia and Eastern Europe since inception in 1993.
• Supported over 1000 NGOs and community groups to implement over 1500 prevention, care and impact-mitigation projects.
• An international development NGO focused specifically on HIV/AIDS, and serves as a Collaborating Centre of the Joint United Nations AIDS Programme (UNAIDS).
International HIV/AIDS Alliance
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India HIV/AIDS AllianceStrategic Goals
• To improve coverage of effective community focused
AIDS efforts in India
• To strengthen leadership and capacity of civil society
to respond to AIDS in India
• To improve institutional, organisational and policy
environment for community AIDS responses in India
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India HIV/AIDS Alliance• Supporting HIV/AIDS programmes in India since 1997
• Established as Country Office of the International HIV/AIDS Alliance in 1999
• Implementing integrated and comprehensive HIV/AIDS programmes:– mobilising communities in the provision of focussed prevention with key
populations– home and community based care and support for People living with HIV/AIDS,
families and children affected by AIDS
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Home & Community BasedCare and Support Programmes
• Supporting 40 NGOs in Tamil Nadu, Andhra Pradesh & Delhi since 2001.
• Reaches 150 communities in 13 Districts in TN; 5 coastal districts in AP; and, urban and sub-urban areas in Delhi.
• Reaches more than 5800 PLHA, approx. 8500 children affected by AIDS (CAA) and approx. 9000 family members affected by AIDS.
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• Psycho-social support to PLHA, and Children & Psycho-social support to PLHA, and Children & Families affected by AIDSFamilies affected by AIDS
• Home visits & “hands-on care” programme for PLHA, Home visits & “hands-on care” programme for PLHA, CAA & Families affected by AIDSCAA & Families affected by AIDS
• Livelihood supportLivelihood support
• Nutritional education & supportNutritional education & support
• Educational & other support for CAA & OVCEducational & other support for CAA & OVC
• Medical careMedical care
• Emergency supportEmergency support
Support Services Provided
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Programme Strategies
• Addressing issues relevant to CAA & other vulnerable
children through ‘home & community based model’
• Ensuring involvement of children at all levels -
participatory community assessment, participatory
community review and programme design
• Child-centred programming – direct involvement
• Strong referrals and service linkages for improving access
to services & addressing stigma and discrimination
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Participatory Community Review with Children
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Programme Innovations• Programming:
– Strategic planning and participatory community assessments and reviews with children
– Lead Partner model for technical support, capacity building, monitoring and scale up
– Integrated programmes reaching out to PLHA, CAA & affected families, and addressing prevention, care and impact mitigation on the HIV/AIDS continuum
• Integration: – Engaging community development NGOs– Involving youth groups/National Service Scheme volunteers
in care and support in AP– Involving Self-Help Groups of women for supporting children
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A Family Tree Drawn bya PLHA parent and child
Source: VMM/World Bank Study on CAA in AP, 2003
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Programme Innovations (cont’d)• Community Models:
– Community fostering - coastal Andhra Pradesh & Tamil Nadu
– Community resource mobilisation – Tamil Nadu & Andhra Pradesh
– Children’s support groups - AP
– Child-centred counselling - Delhi
• Policy and advocacy work with the Education Department and media on CAA issues - AP
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Issues and Challenges• Child-centred approaches and programming: NGO
capacity• Institutional Care vs Community Care• Predominance of emphasis on prevention• Psychosocial support needs of children• VCT for Children: Informed Consent, especially for
children orphaned by AIDS & street children• Confidentiality: Status of children• ART & Children- Access, affordability, community
preparedness & technical capacity• Education: Sex, sexuality & sexual health
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Voices of Children*• "My father, mother and my brother require medicines. The
school is far from the house. Moreover when there is work, my parents send me to the work. I like studying, but now I am used to the work and I am not preferring to continue studies.”
• "We clear the debts of the family by working on daily wage basis. Though we are interested in studying it is not possible, as we have to work and earn.“
* PCA done in Coastal AP by NGOs in Coastal AP
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Voices of Children* (cont’d)
• “ We do not have food to eat or money to get medicines for my sick mother”
• “I do not want to join in the hostel. I want to live only with my parents”
• “My mother wants me to go to school regularly. You are providing us school fees. Why do you not (sensitise) my friends and teachers?”
* PCA done in Coastal AP by NGOs in Coastal AP
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CAA/OVC study in AP*:Key Findings
• 37% of the 1,977 CAA interviewed had lost
both parents; 18% had lost their mother; and,
18% their father
• CAA who are not orphans - 59% both parents +ve
• 15% dropped out of school & 11% started
working to support their family
* Study conducted by Vasavya Mahila Mandali on the Care and support projects in Coastal AP, on behalf of World Bank in 2003.
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Lessons• An integrated approach helps to respond to diverse care and
support needs of PLHA, children & affected families in locally appropriate & cost effective ways
• Capacity building of NGO staff & volunteers is important to have ethically appropriate & value-based interventions for care and support especially of children affected by AIDS
• Mainstreaming care and support needs of PLHA, CAA & families helps to overcome prevailing stigma & discrimination
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Lessons (cont’d)
• Important to differentiate and address the specific needs of CAA
from those of adults with HIV/AIDS or affected by AIDS
• Children require psychological, social & emotional support in
addition to having their basic needs met - such support is most
effective when provided in environments they are familiar with
and where their relatives and friends live
• Children too can and should participate, and take decisions on
matters affecting their lives!
• Involvement of PLHA & Children affected by AIDS is essential
for successful interventions and programmes
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Working with OVC/Children:Key Principles & Values
• Respect and protect confidentiality• Children have their ‘likes’ & ‘dislikes’ and so need to be
understood• Equal treatment and non-discrimination• Children have their own curiosities and aspirations, and need
inspiration & guidance• Children’s self-esteem is very important and fragile – they need
care & nurturing• Children have emotional needs which need to be understood
and met• Children have rights and these need to be upheld
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India HIV/AIDS AllianceOVC Priorities for 2004 & beyond
• Develop & strengthen child-centred programme framework incorporating rights-based approaches and participatory methodologies
• Skills building for our Lead Partners and implementing NGOs – Child rights & rights-based approaches– Child-centred programming– Participatory methodologies for involving children– Psychosocial support for CAA and other vulnerable children
• Child-centred policy review with our Lead Partner in Delhi• Fostering integration and community ownership• Promote sustainability by further enhancing linkages with
Government and other service providers
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Next Steps• Establish an OVC/Children & HIV/AIDS Forum as an outcome
of this workshop– Promote children’s involvement as central element– Agree agenda and priorities with children– Monitor progress with children
• Identify & document good practice in OVC work and disseminate widely through networks of NGOs, CBOs & community groups
• Foster collaboration amongst NGOs/CBOs working on HIV/AIDS and those working with children and on children’s issues
• Promote children’s involvement in all OVC programmes e.g. assessment, planning, review, peer education, volunteering, etc.