Tracking HIV Positive Children in India Through Family Case Management

Use of Family Case Management Approach to Track Children infected with HIV across HIV Cascade – Balasahyoga

experience, India

S. BalarajuDirector, NATURE

Context

India• Low HIV prevalence; concentrated epidemic setting• 0.34% HIV prevalence with an estimated 2.31m

PLHIV (HSS 2007) • 3.5% of PLHIV (80,000) constitute the age-group <15

years (HSS 2007)• 0.49% prevalence among ANC attendees (NACO, 2009-

10)

Andhra Pradesh

• One of the 6 high HIV prevalence states (2nd highest after Manipur)

• 0.5 million PLHIV (HSS 2007) constituting 22% of HIV burden of India

• 1.22% prevalence among ANC attendees (pregnant women)

• 150,000 affected children (Program Data)• Low awareness levels on HIV / AIDS among general

population (13.7% women and 32% men – NFHS-3)• All districts in the state categorized as “high

prevalent” districts with ANC prevalence of >1%

Issues

• Issues affecting access to care and support for HIV affected children

– HIV care focused on adults with Pre ART introduced in 2006 and early infant diagnosis (EID) as late as 2010

– Facilities do not treat ‘Family’ as a unit resulting in low identification of infected children and partners

– Low knowledge on existing HIV care, treatment and support services among families

– Absence of continuum-of-care approach and lack of follow-up resulting in high drop-out from care and treatment services

– Delayed HIV testing and identification leading to high mortality rates among children (Of the total children dead in Balsahyoga families, only 37% were tested whereas 87% children had mothers who were HIV Positive) (BSY Program data)

The Project - Balasahyoga

• CIFF and EJAF funded; five-year project (2007-2012)

• Largest and most comprehensive intervention for children affected by HIV in the country

• Saturated coverage in both rural and urban settings – target to reach 68,000 children across 11 of the 23

districts of Andhra Pradesh

• Focuses on “Children” within a “Family” setting– keep parents alive and free from ill health for

children to thrive– educate parents infected by HIV on early HIV testing

of children and early initiation of treatment– Child-friendly messaging to support disclosure, HIV

testing and treatment adherence

• Works at both community and facility levels – two-way referral system– community interventions focus on “demand

generation”– facility interventions focus on “improving access and

quality of HIV services”

• Recognizes that needs of children go beyond health - minimum package of services defined across five domains

Children and

families infected

& affected

by HIV/AIDS

Psychosocial

Nutriti

on

Education

Hea

lth To improve the

quality of life of children and their families infected and affected by HIV/AIDS

IMPACT: Decreased mortality of children living with HIV/AIDS

Decreased morbidity among children and parents living with HIV/AIDS

Decreased number of children orphaned by HIV/AIDS Decreased number of children infected by HIV

Safe

ty n

et

The Approach

• Family Case Management – >600 FCM and Community Volunteers

hired and trained constituting FCM teams– Each FCM team assigned 100-125

households for regular home visits – Family case files created for every

registered family to monitor services– Prioritized regular home visits, referrals

and linkages

• Data sharing– MoU signed with NACO early identification– Second consent form introduced for

addressing confidentiality

• Prioritization tools for HIV testing and treatment

• Facility strengthening– Refurbishment – patient flow

management, child play– Data entry and cleaning– Child counseling – Growth monitoring and nutrition

supplementation– LFU tracking – Strengthening Supply Chain

• Key stakeholder participation – Local government engagement by various

departments

Child-play area created at the ART center

FCM on a home visit HIV testing prioritization tool for children

Growth monitoring at the ART center

Minimizing Loss to Follow Up Using HIV Testing & Treatment Cascade

Minimizing Loss to Follow Up - Children (0-14 Years) Testing and Treatment Cascade

Four-fold > in children registration due to data sharing with facilities and visits to families

Ten-fold > eligible children tested usage of testing algorithm, home visits and counseling to

overcome stigma

Four-fold > in early

identification of infected children

43% > in children

registered for ART from 52%

to 95%19 % > In

retention on ART to 98% from 79%

Minimizing Loss to Follow Up – Adults Testing and Treatment Cascade

14,08311,830

10,5589,151

2,314 1,388 1,081

25,592

21,62719,846

15,829

7,370

3,757 3,269

47,744

38,568

35,737

28,780

20,158

8,770 8,245

67,280

53,765

50,287

38,964

33,076

15,28814,967

74,958

58,970

55,702

41,380

37,927

18,260 17,935

0

10,000

20,000

30,000

40,000

50,000

60,000

70,000

80,000

Adults Registered Eligible for Testing Adults Tested Adults Positive Registered for ART Ever on ART Currently on ART

Year 1

Year 2

Year 3

Year 4

Year 5

20% > in retention on ART

from 78% to 98%

counselling

Four-fold in registrations

4% > In testing from 89% to 93%

67% > In registration for ART

from 25% to 92% due to Home Visits and follow up with

individual and facilities

Lessons Learned

• The HIV Testing and Treatment Algorithm was an useful tool for assessing eligibility of children for HIV testing and treatment services.

• Family Case Management Approach with individual and family counseling at home; accompanied referrals to hospitals and tracking children across HIV testing and treatment services was crucial.

• Travel reimbursement for those who could not afford travel cost to HIV testing or ART treatment facility.

• Provision of supplementary nutrition at ART center was an added incentive for adherence to ART treatment.

• Data sharing arrangement was important strategy for minimizing loss to follow up (LFU) as facility-based cases were tracked in communities through the FCM and Community Volunteers.

Transition and Sustainability of Balasahyoga - NATURE experience

• Active Community Advisory Boards (CABs) and PLHIV Support Groups • Established Linkages with various Line Departments to continue support to

the PLHA’s Families / Children• Strengthen Integrated Child Protection Scheme (ICPS) and Juvenile Justice

Act / RTE Act, Structures - Child Welfare Committee, DLSA, District Child Protection Unit (DCPU), linkage with Childline-1098, Orphan Homes, etc.

• Strengthening of Civil Society Organization and District Level Child Rights Networks

• Children Club Federations / Consultations for Micro Level Advocacy• Providing Technical Assistance to Regional PLHIV Networks • Promotion and Strengthening of Community Level Peer Education for Drug

Adherence and Referral Services• Local Level integration with National Rural Health Mission (NRHM), DHS /

DAPCU and Integrated Child Development Scheme through Community level Outreach Workers (ASHA, ANM and Anganwadi Worker)

Photogallery of BALASAHYOGA

Line Departments & Community Level Sensitization Meetings

Gatherings of Children groups

Thank You