1. Caroline Kuo, Lucie Cluver, Marisa Casale, Tyler Lane, Lebo Sello AIDS 2012, Washington DC

2. HIV and AIDS in South Africa Source: http://www.unaids.org/globalreport/HIV_prevalence_map.htm http://www.unaids.org/globalreport http://www.unaids.org/en/regionscountries/countries/southafrica/ South Africa 310,000 AIDS deaths 17.2% of global total 5.6 million living with HIV 16.8% of global total 1.9 million children orphaned by AIDS 13.0% of global total

3. What do we know about caregivers of AIDS-orphaned children? Caregiver type: extended family, primarily women Child placement: decisions to care influenced by children’s traits (gender, age), economic challenges Care challenges: poverty, nutrition, children’s educational and other needs Health: chronic illness, grief, stress, depression, anxiety, PTSD Sources: Kuo, C. et al., 2009, 2010, 2012; Ice, G. et al., 2012; Govender, K. et al., 2012; Boon et al., 2010

4. Young Carers KwaZulu Natal Study Objectives Child and caregiver outcomes i.e., mental health, chronic illness, HIV/AIDS-ill, sexual risk behaviour Relationship between caregiver and child health outcomes i.e., caregiver and child mental health outcomes; caregiver illness and child outcomes Role of family factors in child risk behaviours i.e., parenting behaviours

5. Methods Sites: Lamontville and Manguzi Sampling: stratified random sampling of census size enumeration areas with door-to-door household sampling using GIS Participants: N= 5238 (2600 matched child-caregiver pairs) Children aged 10-17, Caregivers aged 18+ Ethical Approval: University of Oxford and KwaZulu Natal, South African Departments of Health and Education Measures: CESD, Beck Anxiety Index, Verbal autopsy

6. Collaborative research Young Carers Project Universities: Oxford, Brown, UKZN National Department of Education National Department of Heath National Department of Social Development National Department of Agriculture, Forestry and Fisheries National Action Committee for Children Affected by HIV and AIDS Tholulwazi NGO Teen Advisory Group & PLWHA

7. All photos used with consent

8. Who are participants? C AREGIVERS C HILDREN Age44 (Range 18-92, SD=13)13 (Range 10-17, SD=2) Education82% did not finish high school 18% high school diploma or higher Mean education: 6 th grade Gender88% female 11% male 54% female 46% male Ethnicity99% African/Black Language96% isiZulu

9. Children and/or caregivers affected by HIV and AIDS

11. Caregiver mental health Depression: 35.6% clinically significant symptoms for depression Anxiety: 49.5% clinically significant symptoms for anxiety  Depression and/or Anxiety: 56.8%

12. Caregivers of children orphaned by AIDS have worse mental health Chi square level of significance at p<0.01*, p<0.001***

13. Among caregivers of children orphaned by AIDS, HIV/AIDS-ill caregivers have worse mental health Chi square level of significance at p<0.001***

14. Familial HIV or AIDS increases risk for caregiver’s poor mental health Chi square level of significance at p<0.001***

15. Relationship between Familial HIV/AIDS and caregiver mental health remains Relative Risk for Caregiver Depression and/or Anxiety (95% CI) Household with HIV/AIDS-ill caregiver and child(ren) orphaned by AIDS 4.26 (1.42-12.76) Household socioeconomic status0.71 (0.55-0.93) Caregiver age1.41 (1.09-1.81) Caregiver gender1.69 (1.17-2.42) Caregiver education0.51 (0.40-0.66) Child age1.47 (1.07-2.04) Child gender1.14 (0.90-1.44) Child education0.94 (0.87-1.00) Statistically significant associations are shown in bold

16. Stigma a risk factor for mental health of HIV/AIDS-ill caregivers of orphaned children Relative Risk for Caregiver Depression and/or Anxiety (95% CI) Household with HIV/AIDS-ill caregiver and child(ren) orphaned by AIDS 3.43 (1.13-10.38) Household socioeconomic status0.84 (0.64-1.11) Caregiver age1.40 (1.08-1.81) Caregiver gender1.69 (1.16-2.44) Caregiver education0.50 (0.39-0.65) Child age1.46 (1.05-2.04) Child gender1.13 (0.89-1.44) Child education0.94 (0.88-1.01) Caregiver stigma2.44 (1.86-3.18) Statistically significant associations are shown in bold

17. Food security a protective factor for mental health of HIV/AIDS-ill caregivers Relative Risk for Caregiver Depression and/or Anxiety (95% CI) Household with HIV/AIDS-ill caregiver and child(ren) orphaned by AIDS 3.41 (1.13-10.36) Household socioeconomic status0.85 (0.64-1.12) Caregiver age1.40 (1.08-1.81) Caregiver gender1.68 (1.16-2.43) Caregiver education0.51 (0.40-0.66) Child age1.44 (1.03-2.00) Child gender1.13 (0.89-1.44) Child education0.94 (0.88-1.01) Caregiver stigma2.35 (1.79-3.08) Household food insecurity1.46 (1.05-2.03) Statistically significant associations are shown in bold

18. Conclusions Caregivers of children orphaned by AIDS at high risk for psychological distress  This risk increases if these caregivers are living with HIV or AIDS Risk and protective factors for psychological distress among HIV/AIDS-ill caregivers Stigma a risk factor Food security a protective factor  Interventions needed to address psychological distress, and may need to be paired with community interventions (to address stigma) and structural interventions (to address food insecurity)

19. Acknowledgments Additional generous support from: NIMH T32 (PI: Brown) Alcohol Research Center on HIV CFAR Tufts/Brown/Lifespan