aids 2012 - turning the tide together transitioning care, support, and treatment services for alhiv:...
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AIDS 2012 - Turning the Tide Together
Transitioning care, support, and treatment
services for ALHIV: Evidence on Transition
Melissa SharerAIDSTAR-One
An estimated 2 million adolescents aged 10 - 19 were living with HIV in 2009, 65% of
them adolescent girls
UNICEF-2012
Progress strong, the future is hopeful.
Perinatally infected:• Fast Progressors-64% median
survival 6-7 months• Slow Progressors-36% median
survival age 16 WITHOUT treatment
• Those on trx are also expected to live longer
2.7 Million
Estimates on ALHIV in SSA
1.2 MillionYouth 15-24 Living with HIV
Adolescents 10-19 Living with HIV
Vertically Infected
Behaviorally Infected
?
Sources: UA & OIC - 2011 UNICEF-2012
Perinatally vs. Behaviorally
Perinatally Infected Behaviorally InfectedAdvanced stages of HIV Earlier stages of HIV More OI’s Fewer OIsMore complex ART regimens Less likely to need ART and less resistance
More obstacles for self-management Less likely to experience obstacles
More physical/developmental delays Less likely to have physical/developmental delays
Higher risks of complications during pregnancy and more SRH fears
Lower number of complications during pregnancy
Higher mortality rates Long-term chronic disease outlookMay not know HIV status though may have been in treatment
May experience more adherence challenges
More likely to have experienced multiples losses related to HIV (parents, siblings, etc.)
More likely to have denial and fear of HIV
More secrecy regarding disclosure More likely to be misinformed on HIVMore likely to have support from family/caregiver and health provider
More likely to lack familial, clinical, and social supports
Care and Support Needs
Perinatally Infected Behaviorally Infected HIV Negative Adolescents
Access to HIV testing and counseling
All All All
Access to SRH All All All
Disclosure (self & others)
All All None
Psycho-social support All All All
Stigma (self & others) All All Some
HIV prevention All All All
Access to HIV care All Some Some
Access to prevention to mother to child transmission (PMTCT)
All All All
Access to ART All Some None
Adherence All Some None
Transition of HIV care All All None
However NEEDS are similar
• Barrier: Stigma • Barrier: Grief, loss, and bereavement • Barrier: Beneficial Disclosure (WHO 2011)• Barrier: SRH• Barrier: Substance Use (?)• Barrier: Mental Health and Neurocognitive (?)• Barrier: Family care models• Barrier: Providers sensitive to family and youth• Barrier: Focus on self management throughout
Transition must address:
Adolescence a time of physical and mental transition
• May have no physical move, but mentally adolescent is a time of great growth and change
• “a multifaceted, active process that attends to the medical, psychological, and educational or vocational needs of adolescents as they move from the child focused to the adult focused health care ”
-(Reiss and Gibson 2002, pg 1309)
• Counseling and Testing
• Family/caregiver COUNSELING and TESTING and PICT is a key way to catch this group earlier.
However key concerns remain….consent, counseling, and confidentiality.
Barrier: Knowing your status!
Reaching Adolescents through Testing
Age of Consent for testing without parental consent:
Uganda - 12 years
South Africa – 12 yearsRwanda – 15 years
Zimbabwe – 16 yearsMalawi – 16 years
Namibia – 18 yearsMozambique – 18
Tanzania - 18Botswana – 18 years
Current: WHO Developing Guidance now to help improve diagnosis and timely initiation into care and treatment for adolescents living with HIV.
How: The Evidence
• Botswana Baylor: – Clinic opened in 2003 <30 adolescents, now >600. – Holistic service model – No RCT, but expert opinion and scale up in Zambia, Uganda, Kenya,
Swazi, Lesotho. • SA Collaborative HIV adolescent MH program (CHAMP)
– Multi-country model that builds social networks and peer support to strengthen autonomy.
– RCT showing strengthened protective factors associated with less-risky behaviors for adolescents (Bell 2008).
• Zimbabwe Zvandiri Program: – Bidirectional linkages community and clinics. – No RCT but expert opinion and SADC best practice
Zimbabwe Zvandiri ProgrammeCommunity care and support for HIV-positive children and adolescentsClinical care: Diagnosis Monitoring Management of
opportunistic infections Counseling ART Prevention of mother-to-
child transmission
Community care: Support groups: psychosocial support, counseling, positive
living education, nutrition, gardens, treatment literacy Community outreach: psychosocial support, counseling,
home-based care, positive living education, child tracing, treatment literacy, caregiver training, adolescent sexual and reproductive health
Adherence supporters: psychosocial support, counseling, home-based care, positive living education, child tracing, treatment literacy
Support and training center: psychosocial support; counseling; home-based care; positive living education; adolescent-led psychosocial support training; adolescent-led information, education, and communication materials; recreation activities; skills training; education and medical assistance
MOHCW City Health Private Clinics
Zvandiri Community Care and Support Model
So….
• How to minimize barriers?
• How to move towards self-management?
• How to identify and integrate a service package into standard care?
PEPFAR’s Response via Africa Bureau
– POLICY: Technical Brief- Broad overview of care for adolescents while transitioning
• July 2012– PRACTICE: A Transition Toolkit: Focus on
increasing QoC and holistic care for ALHIV • Forthcoming via Pilot in Kenya, Zambia,
Mozambique– SOUTH TO SOUTH SHARING: Workshop to
share country experience, to have youth participation/leadership, to finalize TB & TK
• February 2012
Phase one: The provider begins to discuss the transition process with the client and caregiver using the Comprehensive Transition Checklist to review the self-care progress of the adolescent.
Phase two: The client and caregiver meet with the provider and discuss the Comprehensive Transition Checklist within the context of improving self-care, medication independence, and adherence, etc.
Phase three: The client has the first checkup without the caregiver at the clinic. The provider and client use the Comprehensive Transition Checklist to review self-care goals that include medication independence, adherence, etc.
Phase four: Constant communication and regular follow-up with community care providers that include psychosocial support, mental health, sexual and reproductive health services, disclosure, etc.
Transition Model of Care(adapted from Movin’ Out Model, Maturo et al., 2011)
Comprehensive Transition Checklist
Comprehensive transition checklist Expected age range
Discussed (√)
Goal for completio
n
Goal completed? (Y/N)
If goal not completed,
new goal date
Goal completed
? (Y/N)Notes
Interact directly with the health care team and ask questions. Below 11
Identify symptoms of grief, and has identified person who they can speak with when grieving. Below 11
Verbalize the names and dosages of medications. 11–14
Explain sexually transmitted infections, including transmission and prevention. 11–14
Explain implications of HIV diagnosis on pregnancy. 11–14
Take medication independently and is adherent to medications. 15–24
Independently makes appointments. 15–24
HOPE going forward into transition….
“Start by doing what's necessary; then do what's possible; and suddenly you are doing the impossible.”
-St Francis of Assissi