Tackling the legacy of loss: Impacts of HIV/AIDS on children in South Africa. Dr. Lucie Cluver Oxford University & University of Cape Town

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1 Tackling the legacy of loss: Impacts of HIV/AIDS on children in South Africa Dr. Lucie Cluver Oxford University & University of Cape Town

2 Collaborative research: Science to inform Policy Collaborative OVC research programme USAID Universities: Oxford, UCT, UKZN, Wits NACCA

3 Linked longitudinal studies, : n=8000 children Orphan resilience study ( ) 2005: N=1021 (aged 10-18) 2009: 71.5% follow-up 3 provinces South Africa National Young Carers study ( ) Main study: N=6002 (age: 10-17) pilot: 850 children, 6 randomly-selected sites >30% prevalence, 3 provinces Urban/rural, 1 year follow-up Stratified random sampling of census enumeration or tribal areas 2500 matched child-caregiver pairs Measures and analysis Standardised scales Multivariate logistic regression, log-linear models, structural equation models, all controlling for socio-demographics

4 Impacts of parental AIDS

5 I don t concentrate in school. I am worried about my mother. She looks like she is going to die like my father (Boy, 12, rural) Cluver, L. & Gardner, F. (2007) AIDS Care 19(3)

6 AIDS-orphanhood: more psychological problems Non-orphaned Other-orphaned AIDS-orphaned Depression Post-traumatic stress Peer Problems Delinquency Conduct Problems Cluver, L, Gardner, F & Operario, D (2007) Journal of Child Psychiatry & Psychology 48(8)

7 Longitudinal evidence: AIDS-orphaned getting worse, faster 6.5 Anxiety score change over 4 years p<.006 ns ns Non-orphaned Other-orphaned AIDS-orphaned Cluver, L, Orkin, M, Boyes, M & Gardner, F (2011) Journal of Child Psychiatry and Psychology.

8 AIDS-sick caregivers: Similar impact to AIDS-orphanhood 35 % children with clinical-level disorder Anxiety Depression Neither AIDS-orphaned AIDS-sick carer Dual-affected Cluver, L, Orkin, M, Boyes, M & Gardner, F (2012). Journal of Pediatric Psychology.

9 I don t know what is happening in my life because when my mother is sick, I don t go to school. I have to look after her and my little brothers and sisters. (Boy, 17, urban) Cluver, L, Operario, D, Lane, T, Kganakga, M (2012). Journal of Adolescent Research.

10 Familial AIDS predicts child educational difficulties % of children Healthy home Other-sick home AIDS-sick home Missing/dropped out Hungry at school Unable to concentrate Cluver, L, Operario, D, Lane, T, Kganakga, M (2012). Journal of Adolescent Research

11 Child risks and service access 7 % Probability of child pulmonary TB TB-testing amongst symptomatic children never tested 75% sputum test 25% 0 Neither Careigver AIDS Bodily fluid exposure Both

12 Parental HIV/AIDS predicts some child sexual risks 12 % children reporting sexual risk Transactional sex Sex drunk or on drugs Pregnant (girls) 2 0 Healthy caregiver AIDS-orphaned or AIDS-sick caregiver AIDS dual-affected

13 Parental HIV/AIDS predicts food insecurity % children with insufficient food >2 days in past week healthy caregiver other-orphan other-sick caregiver AIDS-orphan AIDS-sick caregiver AIDS-dual affected

14 Parental HIV/AIDS predicts child stigmatization % children reporting stigmatization healthy caregiver other orphan other-sick caregiver AIDS-orphan AIDS-sick caregiver AIDS dualaffected

15 Cumulative risks: food security and stigma % Children with clinical-level psychological disorder No hunger, no stigma Hunger, no stigma Stigma, no hunger Stigma, hunger Cluver, L & Orkin, M (2009). Social Science and Medicine.

16 Parental AIDS predicts child abuse (OR1.8 CI ) 25 % children reporting abuse Physical abuse Emotional abuse Domestic violence Sexual abuse 5 0 Healthy carer AIDS-orphaned AIDS-sick carer Cluver, L (2011). Nature,

17 Compound effects of abuse & parental AIDS on child risk of transactional sexual exploitation 57% Cluver, L, Orkin, M, Boyes et al, (2011). JAIDS 13% 7% 1% Healthy family AIDS-sick parent Abused & hungry AIDS-sick AIDS-sick parentparent, abused, hungry

18 Understanding pathways to risk

19 Intergenerational risk for HIV-infection Poverty Stigma Psychological distress Abuse AIDSorphan AIDSsick parent Sexual health risks

20 Pathways of risk for AIDS-affected children Poverty Stigma Psych. distress Abuse.72 AIDSorphan AIDSsick parent SEXUAL HEALTH RISKS mean χ 2 (679) Bollen-Stine mean χ 2 /df RMSEA SRMR CFI TLI p=

21 Pathways of risk for AIDS-affected children Poverty Stigma Psych. distress Abuse.72 AIDSorphan AIDSsick parent SEXUAL HEALTH RISKS mean χ 2 (679) Bollen-Stine mean χ 2 /df RMSEA SRMR CFI TLI p=

22 Pathways of risk for AIDS-affected children Poverty Stigma Psych. distress Abuse.72 AIDSorphan AIDSsick parent SEXUAL HEALTH RISKS mean χ 2 (679) Bollen-Stine mean χ 2 /df RMSEA SRMR CFI TLI p=

23 Pathways of risk for AIDS-affected children Poverty Stigma Psych. distress Abuse.72 AIDSorphan AIDSsick parent SEXUAL HEALTH RISKS mean χ 2 (679) Bollen-Stine mean χ 2 /df RMSEA SRMR CFI TLI p=

24 Pathways of risk for AIDS-affected children Poverty Stigma Psych. distress Abuse.72 AIDSorphan AIDSsick parent SEXUAL HEALTH RISKS mean χ 2 (679) Bollen-Stine mean χ 2 /df RMSEA SRMR CFI TLI p=

25 Pathways of risk for AIDS-affected children Poverty Stigma Psych. distress Abuse.72 AIDSorphan AIDSsick parent SEXUAL HEALTH RISKS mean χ 2 (679) Bollen-Stine mean χ 2 /df RMSEA SRMR CFI TLI p=

26 What can we do?

27 Identifying and changing pathways of risk AIDSorphan Unable to afford fees or uniform Education risks.06 Poverty.29 Stigma Parental disability Abuse.90 Psychological distress Pregnancy AIDSsick parent Community Violence.17 Sexual health risks

28 How may interventions help? Transactional sex and older sexual partners Cash transfers School meals Free schooling Don t need a sugar daddy to pay for food Don t need a sugar daddy to pay school fees Reduced risk transactional sex/older partner Consistentsocial protection used as these are risks that develop over time

29 Transactional sex by child-focused grant 10 Past-year % incidence of transactional sex by (girls 13-17) Maintained grant over time No grant over time

30 Transactional sex by free school access 5 Past-year % incidence of transactional sex (girls 13-17) maintained free schooling over time no free schooling over time

31 School dropout by child-focused grant 10 Past-year % incidence of school dropout (girls) maintained child-focused grant over time no child-focused grant over time

32 Failed grade by free schooling 56 Lifetime % prevalence of failed grade (boys) maintained free schooling over time no free schooling over time

33 Delinquency scores by school assistance (meals, free uniforms etc.) 4 Mean delinquency score (boys) maintained school assistance over time no school assistance over time

34 What can this tell us for programming? Children in AIDS-affected families at higher risk for HIVinfection, educational, physical and psychological problems. Reducing sexual risk for AIDS-affected children needs social protection not only behavioural interventions Interactive model of risk shows modifiable pathways from familial AIDS to child risks. Reducing extreme poverty, abuse, stigma andpsychological distress could interrupt these risk pathways Social protection programmes can reduce risks for vulnerable children.

35 Cluver, L (2011) Children of the AIDS pandemic. Nature, Boyes, M. E. & Cluver, L. (2012). Performance of the Revised Children's Manifest Anxiety Scale in a sample of children and adolescents from poor urban communities in Cape Town. European Journal of Psychological Assessment Cluver, L, Orkin, M, Boyes, M & Gardner, F (2012) AIDS-orphanhood and caregiver HIV/AIDS sickness status: effects on psychological symptoms in South African youth Journal of Pediatric Psychology. Boyes, M, Mason, S, & Cluver, L (2012). Validation of a brief stigma-byassociation scale for use with HIV/AIDS-affected youth in South Africa. AIDS Care. Cluver, L, Orkin, M, Boyes, M & Gardner, F (2012) Persisting mental health problems among AIDS-orphaned children in South Africa. Journal of Child Psychiatry and Psychology. Cluver, L, Orkin, M, Boyes, M, Gardner, F, & Meinck, (2011) Transactional Sex amongst AIDS-orphaned and AIDS-Affected Adolescents Predicted by Abuse and Extreme Poverty. JAIDS Cluver, L, Operario, D, Lane, T, Kganakga, M (2012). Educational shortfalls among Young Carers in the South African AIDS Epidemic. Journal of Adolescent Research. Kuo, C, Operario, D & Cluver. L (in press) Depression amongst carers of AIDS-orphaned and other children in Umlazi Township, South Africa. Global Public Health. Boyes, M. E., Cluver, L., & Gardner F. (in press). The Child PTSD Checklist in a South African sample: Reliability, convergent validity, and an examination of PTSD symptom structure. Plos One. Knerr, W, Gardner, F & Cluver, L (in press). Reducing harsh and abusive parenting and increasing positive parenting in low-and middle-income countries: a systematic review. Prevention Science. Operario, D, Underhill, K, Chuong, C, Cluver, L. (2011) HIV infection and sexual risk behaviouramong youth who have experienced orphanhood: systematic review and meta-analysis. Journal of the International AIDS Society, 14, 25. Cluver, L, Bowes, L & Gardner, F (2010) Risk and protective factors for bullying victimisation amongst AIDS-affected and vulnerable children in South Africa. Child Abuse and Neglect Cluver, L & Orkin, M (2009) Stigma, bullying, poverty and AIDSorphanhood: Interactions mediating psychological problems for children in South Africa. Social Science and Medicine. Cluver, L, Finch, D & Seedat, S (2009) Predictors of post-traumatic stress symptomology amongst AIDS-orphaned children. Journal of Traumatic Stress, 22 (2) Cluver, L, Gardner, F & Operario, D (2009). Effects of poverty on the psychological health of AIDS-orphaned children. AIDS Care 21 (6) Cluver, L, Gardner, F & Operario, D (2008) Effects of stigma on the mental health of adolescents orphaned by AIDS. Journal of Adolescent Health 42 (4) Cluver, L, Gardner, F & Operario, D (2007). Psychological distress amongst AIDS-orphaned children in urban South Africa Journal of Child Psychiatry & Psychology & Allied Disciplines 48(8) Cluver, L & Operario(2008) Review: Intergenerational linkages of AIDS: Vulnerability of orphaned children for HIV infection. Institute of Development Studies Bulletin, 39(5) Cluver, L & Gardner, F (2007) The Mental Health of Children orphaned by AIDS: A review of International and South African Research. Journal of Child and Adolescent Mental Health 19(1) 1-17 Cluver, L. & Gardner, F. (2007) Risk and protective factors for well-being of children orphaned by AIDS in Cape Town, South Africa: a qualitative study of children s views AIDS Care 19(3) Cluver, L. & Gardner, F. (2006) Psychological well-being of children orphaned by AIDS in Cape Town, South Africa Annals of General Psychiatry. 5, 8. BioMed Press. Cluver, L, Gardner, F & Operario, D (2009). Effects of caregiving on psychological distress amongst AIDS-orphaned children in South Africa. Vulnerable Children and Youth Studies Richter, L, Stein, A and Cluver, L (2009) Infants and young children affected by AIDS. HIV/AIDS in South Africa 25 years on: Psychosocial perspectives. EdsRohleder, P, Swartz, L, Kalichman, S, Simbayi, L. Springer Press. Operario, D, Cluver, L, Pettifor, A, MacPhail, C and Rees, H (2008) Orphanhood and Completion of Compulsory School Education Among Young People in South Africa. Journal of Research on Adolescence18(1), Operario, D, Pettifor, A, Cluver, L, MacPhail, C and Rees, H (2007), Prevalence of Parental Death among young people in South Africa and Risk for HIV Infection: Results from a National Representative Sample. JAIDS. 44, Cluver, L, Orkin, M., Boyes, M. E., Madisha, L., and Baban, R. (in press). Child development in sub-saharan Africa: Identifying challenges and planning solutions. In M. Tomlinson, C. Hanlon, L. Swartz, P. Cooper, and A. Sameroff(Eds). Infant and child development in Africa: Perspectives from the continent. City Cluver, L, Kganakga, M, Boyes, M (in press) Children affected by HIV/AIDS: Psychsocial Interventions for School-Aged Children. Eds Sherr, L, Heyman, J, Kidman, R. Children Affected by AIDS: Moving from Research to Action. Oxford University Press.

36 Thank you. The Economic & Social Research Council HEARD, University of KwaZulu-Natal National Department of Social Development The National Research Foundation The Nuffield Foundation The Claude Leon Foundation The John Fell Fund

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38 I m not the only one going through this. There are many other kids in the same situation. I would like to say to them that they mustn t give up. They must just accept it and at the end of the day believe that they will succeed at something. They mustn t give up. TAG team member, 14 yrs.