HIV/AIDS & Maternal , Newborn, Child and Adolescent Health Departments WHO, Geneva Rachel Baggaley Jane Ferguson Al

1. HIV/AIDS & Maternal, Newborn, Child and Adolescent HealthDepartments WHO, Geneva Rachel Baggaley Jane Ferguson Alice Armstrong Amolo Okero Wale Ajose Kathleen Fox Kate Noto

2. Journey of life for children with HIV – from diagnosis to adulthood Knowing and sharing your status

3. WHO – Knowing and sharing your status Knowing and sharing HIV status – issues for children and adolescents Why HTC services need to be expanded for children and adolescents • Infants – great progress in PMTCT, less infants with HIV but… • many mothers are unable to or do not access PMTCT • EID often poor – many infants slip through the net • 1– >5% transmission still occurs • Children – many missed • 'Slow progressors' • Nosocomial transmission and traditional practices • Adolescents – poorly served by current efforts • Horizontal transmission (esp. girls, early marriage, coerced sex, age-disparate sex) • Vulnerable adolescents, street children, young sex workers, drug users, and MSM • HTC issues to address • How to deliver acceptable services • How to increase uptake in HTC • Disclosure to child or adolescent • Disclosure by adolescent to others • Consent – parental vs. self • Linking to prevention and care

4. HTC – adolescents experiences & views What do adolescents think • Associated with being bad • Rejection, shame, gossip • Unfriendly, judgmental health workers • Inconvenient times and locations • Parental consent to test a barrier What do adolescents want • Enabling environment – role models, media messages to encourage testing • Health worker 'respect' friendly, supportive, understanding, away from health centers • Ability to self-consent • Listen to their voices

5. HTC issues for children and adolescents • Where to deliver? • Clinics • Home • Schools • Outreach Factors which increase uptake • Routine testing / PITC (USA, Zambia) ↑ • Home based VCT (Zambia, Uganda) ↑ • Rapid testing (USAx3, England) ↑ • Education (USAx2, Australia) ? • Social Networking (USA, Australia) ↑ • Provider factors • Computerized testing prompts (USA) ↑ • Adolescent-friendly health services (Uganda & South Africa) ↑ • Outreach with "Motivational Interviewing" (USA) ↑ • (Incentives)

6. WHO - Knowing and sharing your status Disclosure of HIV status • In many settings disclosure to children is late and unplanned • Increasedavailability of ARThighlights need for HTC and re-examination of process of disclosure • Increased identification of ‘slow paediatric progressors’ • Increasing numbers of children on ART surviving into adolescence • Disclosureto childrenoften delayed because of: • parents/health workers fears about child reaction • parents worried children/adolescents will disclose to others • lack of guidance for & training of health workers • perceived & actual community stigma • parental guilt • Disclosure of parents status to childrenoften delayed because of: • parents/health work Most adolescents state they 'wished they had known earlier'

7. WHO - Knowing and sharing your status WHO guidelines on disclosure • Available evidence indicated positive outcomes for an HIV infected child that has been disclosed to: • better adherence to medicines • less self-reported psychological distress • reduced mortalityrisk • Disclosure leads to better communication and extended discussion in the family

8. WHO - Knowing and sharing your status WHO guidelines on disclosure • Children of school age should be told their HIV statusyounger children should be told in a manner that accommodates their cognitive skills & emotional maturity • Children of school age should be told the HIV status of their parents/carers:younger children should be told in a manner that accommodates their cognitive skills & emotional maturity • Disclosure to children is a process not an event • Decision on who does the disclosure should be guided by the intent to improve/promote the child’s welfare &minimise risk to their well-being, & quality of the relationship between child & parent/caregiver • Other factors in communities need to be addressed in parallel… stigma & discrimination access to paediatric care & treatment

9. WHO - Knowing and sharing your status Key issues on disclosure for adolescents • Adolescents should make their own decisions about disclosure • Onward disclosure should not happen until the adolescent is ready • Inform adolescents of rights & responsibilities re disclosure especially in education, workplace & sexual relationships • Being an adolescent with HIV can be isolating → having someone to share status often beneficial • Encourage support from someone they trust • Support them in deciding who to tell & how • Support & shared experiences with other adolescents with HIV can be beneficial • Be aware: placing too much emphasis on disclosing, especially to parents or sexual partners , could discourage adolescents from engaging with services.

10. WHO - Knowing and sharing your status Consent to HIV testing A review of national policies of 42/53 African countries

11. WHO - Knowing and sharing your status Consent issues • Most countries reviewed had no formal policy • Where they do the majority require parental consent <18yrs • Lack of consistency in age of consent for sexual activity, medical procedures & HIV testing • Many countries have 'exceptions' – counsellor discretion, pregnant, married, parents themselves. 'at risk of contracting HIV', head of a household, street children, sex workers, etc. • Even where policiesdoexist, health workers have to make difficult judgements regarding eligibility to consent & worry about legal consequences • Where countries (Uganda, Lesotho, South Africa) & US states (Connecticut and New Jersey) have lowered consent – ↑testing with no significant adverse outcomes

12. Next steps • Outcomes following HTC for adolescents – systematic review underway • Outcomes following disclosure by adolescents – systematic review underway • Attitudes to HTC – adolescent FGDs – Zimbabwe, South Africa, Philippines; ongoing…Central Asia and Eastern Europe • Attitudes to provision of HTC to adolescents – health workers/counsellors FGDs – Zimbabwe, South Africa, Philippines; ongoing…Central Asia and Eastern Europe • Guidance on Adolescent HIV care (incl. retention and adherence) • Including adolescent attitudes to HIV care • Any case studies or unpublished data available for sharing – please send to Rachel Baggaley baggaleyr@who.int or Kathleen Fox foxk@who.int • Any adolescents or networks able to support/pilot test adolescent survey – please email Kathleen Fox foxk@who.int