AIDS Orphans and Vulnerable Children in South Africa: Intergenerational Health Risks

1. AIDS Orphans and Vulnerable Children in South Africa: Intergenerational Health Risks Don Operario Department of Community Health Brown University

2. Research Collaborators Oxford University • Lucie Cluver, Caroline Kuo, Tyler Lane University of Cape Town • Lauren Wild University of KwaZulu-Natal • Alan Whiteside, Tim Quinlan University of the Witwatersrand • Mosa Moshabela

3. Support From • ESRC (UK) • NIH (USA) • John Fell Fund (UK) • Leverhulme Trust (UK) • HEARD/DfID (SA-UK)

4. Estimated number of children under 18 orphaned by AIDS in sub-Saharan Africa (1990–2007) 12 Millions 10 8 6 4 2 0 2007 1990 1995 2000 2002 2003 2004 2005 2006 Source: UNAIDS/WHO, 2008 6.2

5. Orphans in South Africa UNAIDS (2008), UNAIDS (2006), UNAIDS/WHO (2007), Dorrington et al (2005).

7. Debates regarding OVCs • How to define Orphans and Vulnerable Children • Whether OVCs show greater risk outcomes • How to intervene at population level; what to intervene upon • Targeting without stigmatizing

8. Orphan Definition “An orphan is defined as a child under the age of 18 who has had at least one parent die. A child whose mother has died is known as a maternal orphan; a child whose father has died is a paternal orphan. A child who has lost both parents is a double orphan.” UNAIDS (2002). ‘Children on the Brink’

9. Study 1:Is orphanhood associated with HIV Risk among young people in South Africa?

10. Study 1: SA National Household Survey (2003) • Prevalence parental death (n=11,904 15-24 yr) • Any orphanhood: 27% • Maternal orphans: 8% • Paternal orphans: 23% • Double orphans: 3% Operario et al. (2007). JAIDS

11. Orphanhood and HIV risk Operario et al. (2007). JAIDS

12. Orphanhood and Education Overall 39%, Did NOT complete compulsory primary education on schedule Operario et al. (2008). JRA

13. Study 2:Is AIDS orphanhood associated with mental health problems among young people in South Africa?

14. Study 2: Cape Flats Orphan Study (2005-6) • n=1,025 • 10 – 19 years old • 3 groups: • Children orphaned by AIDS • Children orphaned by non-AIDS causes • Non-orphaned children

18. Determining Cause of Parental Death • AIDS death • “Verbal Autopsy” method: Weight loss, diarrhea, chronic fever + OI symptom • Hosegood et al., (2004). AIDS • Non-AIDS deaths • Vehicle accidents, homocide, suicide, other illness • Could not determine • Declined to answer, witchcraft, tuberculosis w/o other indicators (n=81)

19. http://www.who.int/whosis/mort/verbal_autopsy_standards1.pdf Cluver et al. (2008). JCPP

20. Outcomes Measures • Depression (CDI-short form) • Anxiety (CMAS-R) • Peer problems (SDQ) • Post-traumatic stress (Child PTSD checklist) • Delinquency (CBCL) • Conduct Problems (SDQ)

21. AIDS-orphans have more problems Multivariate associations between orphanhood by AIDS, orphanhood by other causes, and psychological outcomes, controlling for sociodemographic cofactors Cluver et al. (2008). JCPP * Denotes significance at the 0.05 level ** Denotes significance at the .001 level 1 Adjusted model controls for age, gender 2 Adjusted model controls for age, gender, informal dwelling 3 Adjusted model controls for age, household size, >2 moves between homes 4 Adjusted model controls for age, gender, household size, >2 moves between homes 5 Adjusted model controls for age, gender, informal dwelling, migration, >2 moves between homes 6 Adjusted model controls for age, gender, migration

22. Proportion in clinical range for psychological disorder AIDS-orphaned children: 2x depression 5x post-traumatic stress 7x peer problems

23. What accounts for associations between AIDS orphanhood and mental health outcomes?

24. Does poverty mediate the association b/w orphanhood and mental health?

25. Poverty Indicators

26. AIDS orphanhood AIDS orphanhood AIDS orphanhood AIDS orphanhood AIDS orphanhood Depression Post-traumatic stress Peer problems Delinquency Conduct problems Direct Associations

27. AIDS orphanhood AIDS orphanhood AIDS orphanhood AIDS orphanhood AIDS orphanhood Depression Post-traumatic stress Peer problems Delinquency Conduct problems Poverty Eliminates Associations Cluver et al. (2008). AIDS Care

28. Does stigma mediate the association b/w orphanhood and mental health?

29. Stigma Indicators

30. AIDS orphanhood AIDS orphanhood AIDS orphanhood AIDS orphanhood AIDS orphanhood Depression Post-traumatic stress Peer problems Delinquency Conduct problems Stigma Eliminates Associations Cluver et al. (2009). JAH

31. Does caregiving mediate the association b/w orphanhood and mental health?

32. Caregiving Indicators

33. AIDS orphanhood AIDS orphanhood AIDS orphanhood AIDS orphanhood AIDS orphanhood Depression Post-traumatic stress Peer problems Delinquency Conduct problems Caregiving Eliminates Associations Cluver et al. (2008). VCYS

34. Cumulative Effects of Hunger and Stigma on Internalizing

35. Study 3:What are challenges associated with caregiving for AIDS orphaned children?

36. Study 3: Caregiving for AIDS orphaned children Phase 1: Qualitative (2006) • Focus groups outside Durban, KwaZulu-Natal • n=84 adults providing care for one or more AIDS-orphaned children • FGs in urban, per-urban and rural communities • Zulu facilitator • Indepth interviews with NGO/CBO staff • n=14 staff members representing 9 NGO/CBOs • All spoke English Kuo & Operario. (2009). VCYS

37. Keep children in community

38. The community will look at these children with distrust and ask why they left the community… So while these orphanages may be able to provide these children with food, clothes, and education, these orphanes do not enable children to integrate into their commuities. -NGO representative

39. Caregiver Burden:Economic and psychosocial stress

40. “Now families are bigger on the grandchildren side because a lot of people are dying and leaving kids behind. This makes it difficult for the family because grandparents are over 60 and cannot find employment. So families are now made of many older and younger people and there are a lot more in them in one house” – Caregiver

41. “The network of support is becoming smaller socially and economically because so many relatives die.” – NGO representative

42. Family Impact:Disagreement of Caregiving and Financial Arrangements

43. “The epidemic has changed the family because the people who remain with the children bear such a big burden on their shoulder. One has not to spend more on unnecessary things because people are at home with orphans. Also the attitude has changed. People normally shared their salaries, but now the needs have changed” – NGO represenative

44. “When family members die, some family do not care about the children but do care about the certificates because this is a source of income. The family members negotiate who gets the certificate. Poverty has created a situation where people tend to be greedy in a way because they know they will get something, that they can apply for the grant and get something” - Caregiver

45. Maybe you have four children of your own and four more are coming to your family. It is a huge challenge to combine these children and treat them as your own. - Caregiver

46. Barriers to Accessing Support Grants

47. “There is a huge backlog. Sometimes as much as 3 years where people have applied and are still waiting to get the grant. You wonder what happens to a child whose parent has died last week – do they have to wait 3 to 4 years to get the grant?” – NGO representative

48. “Procedural processes are a problem. It is problematic to get birth and death certificates which are hard to get from Home Affairs. Some of the required information cannot be obtained.” – NGO representative

49. Phase 2: Caregivers’ Quantitative Survey (2008) • N=1084 carers • 3 groups • Caring for AIDS orphaned child • Caring for other orphaned child • Caring for child whose parents living • Measures incl: • General Health (SF-35) • Depression (CES-D • Anxiety (Kess-10) • Post-traumatic stress (LEC, HTC) • Alcohol use (AUDIT) • Economic and social support

50. Description of Sample • Gender: • Male: 13% • Female: 87% • Age: M=39 years (range 18-90) • All African/Black • Language: 98% isiZulu • Highest Level Educ: • None: 5.6% • Primary: 27.3% • Secondary: 65.6% • Tertiary: 2.6%