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10/12/2009 1

AI DS Orphans and Vulnerable Children in South Africa:

I ntergenerational Health Risks

Don Operario Department of Community Health Brown University

Research Collaborators

Oxford University Oxford University

– Lucie Cluver, Caroline Kuo, Tyler Lane

University of Cape Town

– Lauren Wild

University of KwaZulu-Natal University of KwaZulu Natal

– Alan Whiteside, Tim Quinlan

University of the Witwatersrand

– Mosa Moshabela

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Support From

 ESRC (UK)  ESRC (UK)  NIH (USA)  John Fell Fund (UK)  Leverhulme Trust (UK)

HEARD/DfID (SA UK)

 HEARD/DfID (SA-UK)

Estimated number of children under 18

• rphaned by AIDS in sub-Saharan Africa (1990–2007)

12

Millions

4 6 8 10 12

6.2

Source: UNAIDS/WHO, 2008

1990 2006 2003 2005 1995 2000 2004 2002 2 2007

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Orphans in South Africa

HI V+ people AI DS- h d AI DS- h d 2008

• rphaned

children 2008

• rphaned

children 2020 Worldwide 33 million 15 million 20 million South Africa 5.7 million 1.4 million 2.3 million

UNAIDS (2008), UNAIDS (2006), UNAIDS/WHO (2007), Dorrington et al (2005).

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Debates regarding OVCs

 How to define Orphans and Vulnerable  How to define Orphans and Vulnerable

Children

 Whether OVCs show greater risk

• utcomes

 How to intervene at population level;

How to intervene at population level; what to intervene upon

 Targeting without stigmatizing

Orphan Definition

“An orphan is defined as a child under An orphan is defined as a child under the age of 18 who has had at least

• ne parent die. A child whose mother

has died is known as a maternal

• rphan; a child whose father has died

i l h hild h h is a paternal orphan. A child who has lost both parents is a double orphan.”

UNAIDS (2002). ‘Children on the Brink’

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Study 1: I s orphanhood associated with HI V Risk among young people in South Africa?

Study 1: SA National Study 1: SA National Household Survey (2003) Household Survey (2003)

 Prevalence parental death

Prevalence parental death (

11 904 15 ( 11 904 15 24 ) 24 )

 Prevalence parental death

Prevalence parental death (n= 11,904 15

(n= 11,904 15-24 yr) 24 yr)

– Any orphanhood: 27% Any orphanhood: 27% – Maternal orphans: 8% Maternal orphans: 8% – Paternal orphans: 23% Paternal orphans: 23% – Double orphans: 3% Double orphans: 3%

Operario et al. (2007). Operario et al. (2007). JAIDS JAIDS

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Orphanhood and HI V risk

Weighted %

• Unadj. OR

Adj OR (95% g j (95% CI ) j ( CI )

HIV Positive Orphan Non-orphan 12.3 8.5 1.49 (1.32-169) 1.09 (1.05-1.36) Ever had vaginal intercourse Orphan Non-orphan 72.7 61 7 1.65 (1.51-1.79) 1.21 (1.09-1.34) Non orphan 61.7 Unprotected intercourse, last episode Orphan Non-orphan 49.3 44.3 1.22 (1.11-1.35) 1.11 (1.00-1.22)

Operario et al. (2007). Operario et al. (2007). JAIDS JAIDS

Orphanhood and Education

Overall 39%, Did NOT complete compulsory primary Overall 39%, Did NOT complete compulsory primary d ti h d l d ti h d l

FEMALES MALES

• Unadj. OR

(95% CI ) Adj OR (95% CI )

• Unadj. OR

(95% CI ) Adj OR (95% CI )

Maternal Orphan 1.52 (1 15 2 01) 1.42 (1 03 1 97) 1.13 (0 84 1 52) 0.92 (0 67 1 27)

education on schedule education on schedule

(1.15-2.01) (1.03-1.97) (0.84-1.52) (0.67-1.27) Paternal Orphan 1.52 (1.28-1.80) 1.34 (1.11-1.61) 1.23 (1.04-1.46) 1.10 (0.92-1.32)

Operario et al. (2008). Operario et al. (2008). JRA JRA

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Study 2: I s AI DS orphanhood I s AI DS orphanhood associated with mental health problems among young people in South Africa? Africa?

Study 2: Cape Flats Study 2: Cape Flats Orphan Study (2005 Orphan Study (2005-

• 6)

6)

 n= 1 025

n= 1 025

 n= 1,025

n= 1,025

 10

10 – – 19 years old 19 years old 3 groups: 3 groups:

 3 groups:

3 groups:

– Children orphaned by AIDS Children orphaned by AIDS – Children orphaned by non Children orphaned by non-

• AIDS causes

AIDS causes – Non Non-

• orphaned children
• rphaned children

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Determining Cause of Parental Death

 AIDS 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 illness

 Could not determine

– Declined to answer, witchcraft, tuberculosis w/o

• ther indicators (n= 81)

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AI DS Orphans n= 425 Other Orphans n= 241 Non Orphans n= 278

Age (M,SD)+ 13.7 (2.5) 13.4 (2.4) 13.0 (2.0) Female (%) 50.6 43.2 46.4 Xhosa (%) 98 1 96 7 96 4

http://www.who.int/whosis/mort/verbal_autopsy_standards1.pdf

Xhosa (%) 98.1 96.7 96.4 Informal dwelling (%)+ 43.0 43.0 29.1 Moved bw 2+ homes (%) 66.4 69.3 71.6 Loss of mother (% )+ 58.6 28.2

• Loss of father (%)+

66 1 83 0

• Loss of father (%)

66.1 83.0

• Loss both parents

(%)+ 24.9 12.4

• Age first

bereavement (M,SD)+ 10.1 (3.8) 7.8 (4.6)

Cluver et al. (2008). Cluver et al. (2008). JCPP JCPP

Outcomes Measures

 Depression (CDI-short form)  Depression (CDI-short form)  Anxiety (CMAS-R)  Peer problems (SDQ)  Post-traumatic stress (Child PTSD

checklist) checklist)

 Delinquency (CBCL)  Conduct Problems (SDQ)

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Multivariate associations between orphanhood by AIDS, orphanhood by other causes, and psychological outcomes, controlling for sociodemographic cofactors

AIDS AIDS-

• orphans have more problems
• rphans have more problems

Depression(1) Anxiety(2) Peer Problems(3) PTSD(4) Delinquency(5) Conduct Problems(6)

Unadjuste d Model Adjuste d Model Unadjuste d Model Adjuste d Model Unadjuste d Model Adjuste d Model Unadjuste d Model Adjuste d Model Unadjuste d Model Adjuste d Model Unadjuste d Model Adjuste d Model AIDS- Orphanhood

.200** .179** .097* .069 .290** .261** .299** .267** .144** .124** .142** .130**

Other-

• rphanhood

.035 .029

• .008
• .022

.055 .040 .087* .073

• .002
• .011

.015 .009 R-Square .032 .052 .008 .026 .068 .090 .067 .090 .019 .048 .016 .036 R-Square change .023 .022 .026 .027 .035 .023 F-change 7.64** 6.28** 8.22** 6.56** 6.43** 7.40** * 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

Cluver et al. (2008). Cluver et al. (2008). JCPP JCPP

Proportion in clinical range for Proportion in clinical range for psychological disorder psychological disorder

AIDS-orphaned children: 2x depression 5x post-traumatic stress 7x peer problems

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What accounts for What accounts for associations between AI DS orphanhood and mental health outcomes?

Does poverty mediate the association b/w

• rphanhood and
• rphanhood and

mental health?

Poverty AIDS Orphanhood Mental Health

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Poverty I ndicators

Lack of: AIDS-

• rphaned

Other-

• rphaned

Non-

• rphaned

p

• rphaned
• rphaned
• rphaned

food 35% 22% 9% <.001 education 6% 3% 2% <.001 employment 50% 40% 23% < 001 employment 50% 40% 23% <.001 social welfare 54% 40% 23% <.001

Direct Associations

AIDS orphanhood Depression p AIDS orphanhood AIDS orphanhood Depression Post-traumatic stress Peer problems AIDS orphanhood AIDS orphanhood Delinquency Conduct problems

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Poverty Eliminates Associations

AIDS orphanhood Depression p AIDS orphanhood AIDS orphanhood Depression Post-traumatic stress Peer problems AIDS orphanhood AIDS orphanhood Delinquency Conduct problems

Cluver et al. (2008). Cluver et al. (2008). AIDS Care AIDS Care

Does stigma mediate the association b/w

• rphanhood and
• rphanhood and

mental health?

Stigma AIDS Orphanhood Mental Health

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Stigma I ndicators

Family- AIDS- Other- Non- p Family related stigma AIDS

• rphaned

Other

• rphaned

Non

• rphaned

p

Teased 35% 21% 8% <.001 Treated badly 38% 19% 6% < 001 Treated badly 38% 19% 6% <.001 Gossiping 48% 22% 13% <.001

Stigma Eliminates Associations

AIDS orphanhood Depression p AIDS orphanhood AIDS orphanhood Depression Post-traumatic stress Peer problems AIDS orphanhood AIDS orphanhood Delinquency Conduct problems

Cluver et al. (2009). Cluver et al. (2009). JAH JAH

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Does caregiving mediate the association b/w

• rphanhood and
• rphanhood and

mental health?

Caregiving AIDS Orphanhood Mental Health

Caregiving I ndicators

AIDS- Other- Non- p AIDS

• rphaned

Other

• rphaned

Non

• rphaned

p

Caregiver sickness 14% 7% 4% <.001 >3 hrs housework/day 25% 15% 14% <.001

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Caregiving Eliminates Associations

AIDS orphanhood Depression p AIDS orphanhood AIDS orphanhood Depression Post-traumatic stress Peer problems AIDS orphanhood AIDS orphanhood Delinquency Conduct problems

Cluver et al. (2008). Cluver et al. (2008). VCYS VCYS

Cumulative Effects of Hunger and Cumulative Effects of Hunger and Stigma on Internalizing Stigma on Internalizing

83.2

90

33.5 53.3

30 40 50 60 70 80

age with internalising disorder

No hunger, no stigma Hunger, no stigma Stigma, no hunger Stigma, hunger

18.8

10 20

Percenta

Series1 18.8 33.5 53.3 83.2 No hunger, no stigma Hunger, no stigma Stigma, no hunger Stigma, hunger

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Study 3: What are challenges associated with caregiving for AI DS orphaned children?

Study 3: Caregiving for AI DS orphaned children

Phase 1: Qualitative (2006) 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). Kuo & Operario. (2009). VCYS VCYS

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Keep children in community

The community will look at these children with distrust and ask why they left the community… So while these orphanages y p g may be able to provide these children with food, clothes, and education, these

• rphanes do not enable children to integrate

into their commuities.

• NGO representative

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C i d Caregiver Burden: Economic and psychosocial stress

“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

• ver 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

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

il Family I mpact: Disagreement of Caregiving and Financial Arrangements

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“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 – NGO represenative “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” for the grant and get something - Caregiver

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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 huge challenge to combine these children and treat them as your own. - Caregiver

Barriers to Accessing Support Grants

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“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 “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

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Phase 2: Caregivers’ Quantitative Survey (2008)

 N= 1084 carers  N= 1084 carers  3 groups

– Caring for AIDS orphaned child – Caring for other orphaned child – Caring for child whose parents living



Measures incl:

G l H lth (SF 35) – General Health (SF-35) – Depression (CES-D – Anxiety (Kess-10) – Post-traumatic stress (LEC, HTC) – Alcohol use (AUDIT) – Economic and social support

Description of Sample

 Gender:

Gender:

– Male: 13% – Female: 87%

 Age: M= 39 years (range 18-90)  All African/Black  Language: 98% isiZulu  Highest Level Educ:  Highest Level Educ:

– None: 5.6% – Primary: 27.3% – Secondary: 65.6% – Tertiary: 2.6%

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Psychological Outcomes

 69 5% Moderate to High Anxiety  69.5% Moderate to High Anxiety  31.5% Depression  41.5% Hazardous or harmful drinking

Higher Depression among AI DS orphan caregivers

% CES D % CES-D depression

Caregivers of AIDS orphans 79.2% Caregivers of 46 6% Caregivers of non orphans 46.6%

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Study 4: What are the experiences of children living with AI DS unwell parents?

Orphanhood Orphanhood as a process as a process

Parental illness Parental death Caregiving experience p

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Study 4: Young Carers Study 4: Young Carers (2008) (2008)

 Structured qualitative interviews of

Structured qualitative interviews of

 Structured qualitative interviews of

Structured qualitative interviews of children with parents living with HIV children with parents living with HIV-

• related illness in Western Cape

related illness in Western Cape

 10

10 – – 19 years old 19 years old

 N= 480

N= 480 N 480 N 480

Youth Advisory Group

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‘I help my mother when she is very

• sick. I take her to the clinic in a

wheelbarrow I bring her a glass of

• wheelbarrow. I bring her a glass of

water when she cannot get out of bed’ Boy, 12, Khayelitsha

‘This is me at home. I do the washing for the family. I cook food in the evening after school. I remember when g my mother has to take her medication and I make sure that she takes it every day’ Girl, 14, Guguletu

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Before I go to sleep I have to put nappies on her. When I get up in the morning I have to change her nappies. Girl 12 Paarl Girl, 12, Paarl.

Summary

 Study 1: Higher rates of HIV risk  Study 1: Higher rates of HIV risk,

educational shortfalls among orphans

 Study 2: Higher rates of mental health

problems among AIDS orphans

 Study 3: Challenges among caregivers

Study 3: Challenges among caregivers

 Study 4: Challenges among children

with AIDS unwell parents

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Current Directions

 Data analysis  Data analysis

– Caregivers Quantitative Survey – Young Carers Qualitative Interview

 Longitudinal Survey of Children

Orphaned by AIDS or Living with p y g AIDS-unwell parents

poverty peer influences Sexual Risk Behavior Alcohol Use Parent sick:

• AIDS

parental monitoring stigma/ discrimination access services f Drug Use Mental Health Education AIDS

• other illness

Orphanhood:

• AIDS
• other illness
• single/double

Non-affected

A B

welfare support

c

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Longitudinal Study of Orphans and Vulnerable Children

Children Orphaned by AIDS Children w/ Parent Non- AIDS Children w/ Parent AIDS unwell Children w/ Parent Non- AIDS Children w/ Parent AIDS unwell Children Orphaned by AIDS

Ongoing Challenges Ongoing Challenges

• Measurement, e.g., standardized

g questionnaires, determining cause of death

• Ethics, research with children and families
• Referrals to psychological and social services
• Child-friendly research
• Hard-to reach groups: CHHS, streetkids

Hard to reach groups: CHHS, streetkids

• Practical challenges: staff danger, field staff

supervision, recruitment

• Working with the community: planning,

capacity-building, feedback

• Government

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Gaps and future research Gaps and future research

Structural Community-Level Intervention studies



Cash transfers (‘Going to Scale’ – Richter, Aber & Allen)



Family-focused interventions



Schools as nodes of support

New areas of concern



Peri-natally infected on ARV surviving into adolescence