Getting more children into Care in South Africa

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Getting more children into Care in South Africa

• August 3rd, 2008
• EGPAF Satellite Session
• XVII International AIDS Conference
• Mexico City, Mexico
• Dr. Tshiwela P. Neluheni
• Country Director
• EGPAF South Africa

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Background information
In a population of about 48 million, over 5.7
million are infected with HIV. It is also
estimated that 240,000 children are living with
HIV. As of 30th June 2008, approximately 500,000
people were on ART in the public and private
sector, about 9 are children. As of 31st March
2008, EGPAF/SA programs had 79,804 adults and
children ever enrolled into care with 7,991 (10)
being children below 15. Of those ever enrolled
into care, over 48,417 had begun ART. Of those on
ART, 5,401 (11) were children below 15. The
Foundation supports the Dept. of Health in 4 out
of the countrys 9 provinces - 28 ART initiation
sites with 75 feeder primary health care clinics,
and a total of 126 PMTCT sites.
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Geographic areas of support
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PMTCT Cumulative Percentages and Totals as of
Mar 08
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Main discussion points

• Available resources
• Areas of development
• Why is the identification of HIV-infected infants
  and children poor?
• What worked?
• Recommendations

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Available resources

• SA is a middle income country. Over 95 of the
  health budget is from the national treasury and
  over 1.4 billion USD allocated to CCMT in the
  current fiscal year
• Free ARVs available in the public sector
  including pediatric suspensions since 2004 and
  AZT/NVP and HAART for PMTCT since February 2008
• 1 ART initiation site per district (100
  coverage) and 1 ART initiation site per
  sub-district (87 coverage)
• National pediatric treatment guidelines available
  and reviewed periodically with the most recent
  edition being printed
• Treatment for opportunistic infections available
  (e.g. cotrimoxazole) and prophylaxis for all HIV
  exposed infants from 4 - 6 weeks
• Free laboratory testing (i.e. PCR at 6 weeks,
  Rapid HIV, HIV Elisa, CD4 count and viral load)

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Available resources

• 6-12 months formula supply AFASS determined
• Highly qualified and committed clinicians
• Pediatric HIV and AIDS training offered for
  undergraduate medical training/clinical rotation
  and at postgraduate level of education
• Supportive Social Welfare System (i.e.
  foster-care, care dependency and disability
  grants). Home Affairs Department service points
  at health establishments (i.e. birth
  registration, grants, etc.)
• Community support structures/services exist
• Support from PEPFAR partners including EGPAF

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Areas of development

• PMTCT
• Pregnant women presenting late for 1st ANC visit
• Fragmented services such as ANC at PHC, delivery
  and ART at hospital, etc.
• Ineffective referral of HIV-positive pregnant
  women/infants to care and treatment services, no
  follow-up on referral outcome
• Pregnancy and HIV (e.g. looks well whilst
  pregnant but deteriorates postpartum)
• Poor follow-up of HIV exposed infants or
  mother/infant pair
• Mixed feeding
• ART services originally designed for adults
• ART initiation gap PCR done at 6 weeks
• ART service points not baby-friendly
• Adolescent-friendly services gap
• Didactic training not translating to quality
  clinical practice
• Limited supportive supervision, on-site coaching
  and mentoring
• Shortage of staff for a variety of reasons

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Areas of development

• Weak health management information systems (HMIS)
• Staff shortage and ME skills limitation
• Data quality issues
• Vertical programs vertical reporting
• Poor linkages between service points within
  health facilities
• PMTCT , CT, EPI, IMCI, etc.
• Community awareness-raising on pediatric care and
  treatment is suboptimal
• Little pediatric focus in existing mass media
  campaigns
• Limited pediatric (PLHIV) advocates (e.g. Xolani
  Nkosi-Johnson)
• Poor linkages between health facility and
  community-based services
• Poor referral between health facilities and
  community-based support services (e.g. OVC,
  home-based care, support groups)
• Mixed messages from traditional vs. scientific
  practitioners

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Why is the identification of HIV-infected infants
and children poor?

• Suboptimal provider initiated testing and
  counseling (PITC) and clinical staging at various
  entry points
• PCR testing limitations, especially at PHC level
• Long TAT - 3 weeks (plasma) to 3 months (DBS)
• Skills limitations PCR testing
  technique/methods
• No results available because of loss of
  specimens, poor data capturing, etc.
• Ineffective referral of HIV infected infants and
  children to care and treatment with the referral
  outcome often unknown
• HIV positive mothers not bringing their infants
  and children for treatment services due to
• Stigma and discrimination
• Denial, guilt, fear, cost, trans-border migration
• Non-disclosure of HIV status to partners, family,
  and children
• Cultural beliefs (e.g. use of traditional
  medicines, ARVs do not work/kill)

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Why is the identification of HIV-infected infants
and children poor?

• Poor integration of pediatric HIV services at
  various service points
• IMCI, EPI, TB vertical HIV programs
• Children assumed to be TB contacts thus no VCT
  offered
• Poor attitudes, ignorance and lack of ownership
  some health care workers at other service points
  have the HIV is not our problem mindset
• Lack of knowledge which results in a lack of
  confidence in managing pediatric HIV and AIDS
• HIV testing policies and patients rights
• Parents can refuse testing on behalf of the child
• Constitutional right to confidentiality
  (non-disclosure)
• Child Health Act - confusion around HIV-testing
  consent
• Child-headed households, Orphans and Vulnerable
  Children (OVC)

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What worked?

• PITC in pediatric wards
• PN and counselors ward rounds
• Elisa, awaiting CD4 count viral load results
• Post-test counseling, treatment literacy
• On HAART
• Adherence counseling
• HAART initiated in the ward
• Follow-up clinic visits
• Growth monitoring, adherence counseling
• PCR testing day 40 infants tested per day
• PN, counselor and parents responsibilities made
  clear

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What worked?

• Use of enrolled nurses/nursing assistants for
  counseling and testing in the PMTCT setting
• Retired nurses willing to take or accustomed to
  extra shifts weekend duty
• Outcome - 30 increase in PCR testing in 6
  months
• Public holidays

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What worked?

• Community engagement in awareness-raising efforts
  around pediatric care and treatment
• Community leaders, retired nurses, private
  doctors
• Present success stories, before and after
  pictures
• Traditional practitioners participation in Clinic
  Health Committees
• Support groups for moms and children, as well as
  support groups for caregivers
• Sharing of experiences and challenges
• Education on treatment literacy
• Counseling on adherence, bereavement, etc.
• Life skills including sex education
• Memory boxes with family trees, pictures,
  favorite items, etc.
• World AIDS Day Picnic at the Botanical Gardens

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Children Support Groups

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Recommendations

• Optimize PMTCT efforts, address PCR testing
  limitations, provide infant feeding counseling
  and support
• Promote PITC, and train health care professionals
  at all entry points on early infant diagnosis
  (EID) and clinical staging in infant and children
• Provision of adequate administrative staff in
  order to allow for the utilization of clinicians
  for clinical care
• Integration of pediatric care and treatment at
  PHC level with nurses managing stable pediatric
  patients
• Standardization of mother/infant pair follow-up
• Strengthen the family centered approach
• Revive Clinic Health Committee and have pediatric
  representation
• Build strong local pediatric HIV research
  capacity

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Recommendations

• Explore more effective awareness raising
  approaches with a pediatric HIV focus
• Mass media campaigns, cell phone technology,
  school based programs, sports clubs, etc.
• Strengthen linkages with community based
  organizations, educate them on pediatric CT
  services available
• Explore the full potential of the Program Officer
  Linkages position
• Strengthen the link between health facilities and
  community based services/organizations
• Strengthen the link between service points within
  health facilities e.g. PMTCT, CT, TB, IMCI, EPI,
  etc.
• Establish strategic partnerships with
  organizations that have complementary
  competencies
• Continue to make concerted efforts with respect
  to conventional and traditional medicine
  integration
• Create pediatric HIV-wise pediatric AIDS-free
  communities

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Acknowledgements

• Department of Health, South Africa
• National Office
• Provincial Offices - Kwazulu-Natal, Free State,
  Gauteng and North West
• All clients served through the Elizabeth Glaser
  Pediatric AIDS Foundation supported programs
• This work was made possible through support
  provided by the U.S. Centers for Disease Control
  and Prevention (CDC) and the Presidents
  Emergency Plan for AIDS Relief (PEPFAR), as part
  of the Elizabeth Glaser Pediatric AIDS
  Foundation's International Family AIDS
  Initiatives (Project HEART/Cooperative
  Agreement No. U62/CCU123451).
• The opinions expressed herein are those of the
  author and do not necessarily reflect the views
  of CDC or the South Africa Department of Health.

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