Distinct
Disadvantage
Professor Lorraine Sherr, UCL London
CARE & Save the Children Vienna July2010
Evidence summary report
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Background
Review of Care
Systematic review of Cognitive development
Systematic review of evaluations for OVC
Systematic review of ECD evaluations
Trajectory of shocks
Implications for policy and programmes
Cognitive effects
Children
• HIV Positive
children
• HIV affected
children
• Control children
Issues
• Under 8 age group
• Measures
Children
HIV +ve
HIV –ve
Non exposed
HIV –ve (exposed)
Treated
No ART to mother
Or child
Affected
+ve in family
Sick or well
Art to mother
Or child
+ve in community
Not treated
HIV+ve father
Non affected
HIV tested
HIV established
During pregnancy
HIV established
Pre conception
Feeding (breast/bottle)
What do we know about
HIV and brain?
• Over 60% adults cognitive effects
(Fisher-Smith 2005)
• Before treatment almost all
developed some brain pathology
(Navia 2005)
• Cognitive effects even for those on
treatment (Simioni 2009)
Grading system for HAND
(HIV Associated Neurocognitive Disorder)
•
Asymptomatic neurocognitive impairment (ANI)
–
–
•
HIV-associated mild neurocognitive disorder (MND)
–
–
•
Performance at least 1 SD below the mean of demographically adjusted
normative scores in at least two cognitive areas (attention-information
processing, language, abstraction-executive, complex perceptual motor skills,
memory, including learning and recall, simple motor skills or sensory perceptual
abilities).
Asymptomatic
Performance of at least 1 SD below demographically corrected norms on tests of
at least two different cognitive domains
Interferes, at least mildly, with activities of daily living
HIV-associated dementia (HAD)
–
–
Performance at least 2 SD below demographically corrected normative means in
at least two different cognitive areas
Marked difficulty in ADLs due to the cognitive impairment
???????Children????????
Search databases
1493
Duplicates between
databases
73
Total
1420
No abstract 3
Excluded because not peerreviewed article: 394
• review: 277
• book/book review: 96
•DA: 21
Excluded because did not meet
inclusion criteria: 970
• not human subjects: 2
• non-HIV: 118
• non developmental: 92
•Topic irrelevant 754
•Other – no under 8years, no
cognitive measures 9
Included from follow up of
references, citations 15
Number of
relevant
studies:
63
Geographic distribution of
studies
11%
3%
7%
11%
68%
North America
Africa
Europe
South America
Asia
Findings
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•
•
Twenty six studies on children
under 8 years (mostly infants) remainder included children
under 8 within a range of ages
Some only have biological
outcomes (scan)
Of 56 with data, majority
(51/56 91.1%) recorded cognitive
deficits for children with HIV
infection.
9%
91%
Cognitive Delay
No Cognitive delay
HIV Affected children
Abubakar 2009 Kenya
0.4
0.2
0
-0.2
-0.4
-0.6
-0.8
-1
Psychomotor*
HIV+ve 31
Locomotor*
Exposed 17
Eye Hand*
Control 319
Isaranurug (2009)
Orphans, 3 groups, HIV positive, HIV negative, Unknown (not tested)
Orphan definition in complete (maternal paternal or both).
163
162
161
HIV+ve
HIV-ve
Untested*
160
159
158
157
Thai Mental Health
Methodological problem – untested group drawn from same
orphan pool – highly likely to be exposed to HIV.
Pollack et al 1996
Multiple measures taken over 24 months – 12 month data plotted here. Mental data accurate
(given in text) Motor data read from graph (poor graph, may be slightly inaccurate).
Significance of three way tests on both – but focus is on differences between HIV+ve and
the rest. HIV exposed compared to Control differes, but unclear if significant effect.
Both significant and significant group effect, no breakdown given of where the significance
lay.
120
100
80
HIV+ve n=22
HIV exposed n=42
Control n=27
60
40
20
0
Bayley Mental Dev
Motor Development
Drotar 1997
Significance between HIV positive and other two groups (exposed and control
did not differ). Sig motor and mental differences on Bayley – no differences on
Fagan.
140
120
100
80
HIV+ve 79
Exposed 241
Control 116
60
40
20
0
Bayley Motor
Bayley
23months
Mental 24
months
Fagan info
processing
12/12
By 12 months, 30% of HIV-infected infants had motor abnormalities and 26%
mental abnormalities, compared with 11% and 6% among seroreverters, and
5% and 6% among seronegative infants (P.0001)
Van Rie 2009
71% of HIV+ve on treatment.
120
100
80
60
40
20
0
Cognitive baseline
HIV+ve 35
Cognitive 12mo
Exposed 35
Motor 12/12
Control 90
Bruck et al 2001 Brazil
100
90
80
70
60
50
40
30
20
10
0
CAT/CL1-3*
Cat/CL14-24* CAT/CL24-36*
HIV+ve 43
Exposed 40
DDST Fail*
Control 67
Sig - +ve, ns exposed vs control. Denver Development Scale (DDST)
mean calculated (4 age groups). No control data given in paper.
Puthanakit et al (2010)
Thailand
100
90
80
70
60
50
40
30
20
10
0
IQ*
IQ>90 *
HIV+ve 39
Exposed 40
Lower grade *
Control 42
ART treatment did not improve cognitive performance for HIV+ve group
over time.
Sanmaneechai et al 2005
20
18
16
14
12
10
8
6
4
2
0
Behaviour problems
No HIV+ve
Cognitive below average
Exposed n=35
Control n=35
Lindsey cohort 1
120
100
80
60
40
20
0
Bayley Mental
HIV+ve 54
Bayley Motor
Exposed 221
Lindsey examining Maternal
ART exposure
120
100
80
60
40
20
0
Bayley Mental
HIV+ve maternal ART
HIV-ve Maternal ART
Bayley Motor
HIV+ve no maternal ART
HIV-ve No maternal ART
Taha et al 2000 Malawi
n=3532
16
14
12
10
HIV+ve n=387
Exposed n=1247
Control n=319
8
6
4
2
0
Developmental delay
OVERALL
Mortality
60
50
40
30
20
10
0
Shapiro
Botswana
Brahmblatt
Uganda
HIV+ve
Chilongozi
Malaawi
Exposed
Control
Sutcliffe
Zambia
Cognitive Development i
Bruck 6/12
Boivin Global nv
Van Rie Motor
Van Rie Cog
Van Rie Base
Put IQ>90
Puthanakit IQ
Pollack Motor
Pollack Mental
0
20
40
60
Exposed
80
100
Control
120
140
Cognitive development ii
Taha Dev Delay
San Cog < av
Sanmaneechai
Beh
Msellati Lang
0
5
10
Exposed
15
Control
20
25
Evidence is showing us..
• Cognitive problems HIV positive children
• Special educational needs
• Problems for HIV affected children
• Explanations – Virus – Environment -Both?
Fundamental importance of
Care
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Especially true for young children
(See Pat Engle’s review)
Focus on the under 8 age group
Continuum of caretaking causality
Key driver – early need, quality of
subsequent care
Disruptions in Care
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Mental and physical effects of HIV in carers
Carer illness
Carer death
Child caring for ill parent
Child caring for other children
Care arrangements
– Importance of Families
• Alternative care arrangements
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–
Fathers
Grandparents
Kin
Parental death (Orphanhood)
Institutionalised care
Infected carer
• Effects on child development, child care and child
outcome (positive and negative)
• HIV positive enhances paediatric adherence
• Well documented physical effects of HIV
• Well documented mental health effects of HIV
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Depression 46%
Anxiety 16%,
Post traumatic stress disorder
Suicidality (31% Sherr et al 2009)
• Effects of these on parenting??
• HIV field Understudied
Non HIV
•
Parents Mental Health state
affects child development
– Downey et al review mental
health affects child development
– Maternal depression
– Paternal depression
– Eating disorders
– Psychosis (Schizophrenia)
•
Child illness affects parental
state
– Post traumatic stress disorder
(22% parents of chronically ill
children, 4 fold elevation).
Interventions can help
• Systematic review
(Gunlicks 2008)
• Interventions to
ameliorate parental
mood can benefit child
outcomes
Caring under adversity
• Stresses of caring under adversity
have negative mental health impacts
• Good literature, eg caring and
disability
Child takes on
responsibilities as a
caregiver
Caring for ill adults
• Direct duties
– Caring for the sick
adult
– Administering
medicines
– Feeding/bathing
– Emotional support
• Indirect duties
– Taking over adult
duties
– Household chores
– Sibling care
– Income generation
– Livelihood burden
Substitute parenting
Parentification
Family care
• JLICA endorsed family approach
• Good evidence base
– Families carry the major burden
– Families are good for children
– Family interventions (such as cash
transfer) benefit child outcomes
Alternative care
arrangements
• Doring et al (Brazil) 2005 care
arrangements for children of deceased
HIV positive adults (n=1131).
– 41% resided with their mother,
– 25% with grandparents and only
– 5% in institutions.
• Families are providing the mainstay of
support for OVC children.
• HIV positivity was associated with a 4.6
fold chance of institutionalised care
Fathers
Parenting as
“woman’s
business”
Systematic review (Nattabi 2009)
identified 29 studies – 20 women, 7
couples (only 2 on men reported)
Systematic review (Sherr 2010)
– Pregnancy Intention = 1122
– + HIV
=
66
– + Father (Male)
=
28
– 13 relevant (9 quantitative, 4
qualitative)
Most data on deceased
fathers
• Death of a father has negative
effects on child outcome
• Obverse – alive fathers? Positive
effects on child outcomes
• Cherish fathers – treat their HIV,
keep them alive, keep them in the
famly
Grandparents
• Increased role of grandparents
• Traditionally involved
• Grandparent care is often
grandmother care
• Bereaved grandparents (own child
has died)
• Multiple children
• Who cares for grandparents?
Siblings
• Good evidence on
importance of sibling
relationships
• Separation of
siblings is often
noted
• Horizontal care
Damaging care
environments
Place –vs-Circumstance
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Street children
Out of school children
Abused children
Trafficked children
Refugee children
Hospitalised children
Institutionalised care
• 17 studies (Globally)
– Recent
– Control/comparison
group
– Specific cognitive
outcome
Author
N
Design
-ve
effect
Ahmad 2005
Kurdistan
142
Foster care vs orphanage
Yes
Beckett et al 2007 156
Romania
Adopted from Institutions
vs non institutions
Yes
Berrick et al 1995
USA
Bos 2010 Romania
Foster care vs institution /
group home (+6 beds)
Yes
Ever institutionalised vs
never. Random to
community vs no change
HIV+ve/HIV-ve Inst vs
family reared
Yes
52,
613
141
Dobrova Krol 2010 64
Romania
Ghera 2009
Romania
208
Yes
Randomised stay
Yes
institution, move foster, vs
never institutionalised
Miller 2005
Guatamala
USA
Nelson 2007
Bucharest
Pollack 2010
USA
Roy 2006 UK
103
Foster vs Inst (prior to USA) Yes
Yes
132
RCT inst remain or foster
care
Inst prolonged, brief vs
family
Inst vs control
Smyke 2010
169
Yes
Van der Dries
2010 China
Vorria et al
2006 Greece
92
Inst random remain, foster
vs family control
Foster care vs inst care
38
100
Yes
Yes
Yes
Adopted after 2 year inst vs Yes
family reared
Whetten et al 2,837 Inst living vs
2009 (5
community living
countries)
Wolf 1995
74
Refugee in families
Eritrea
vs orphans in
institutions
Zeanah et al 170
Remained inst vs
2009
foster care vs control
Romania
Zhao 2010
176
Care before
China
orphanage (parent,
grandparent,
relative, non relative)
No
No
Yes
Grandparent
best
X Li 2010 n=296
• Group home (30) vs institution (176)
vs kin care (90)
• Group home significantly better for
psychosocial, educational and social
outcomes.
• Questions raised about kin care,
selection (who qualifies for care)
Findings
• 15/17 negative effects,
2 do not
• Only 4/17 randomisation
(all showed negative
effects)
• 1 Group home > Inst
• HIV status of the child
may affect cognitive
outcomes
Dangers
• Orphan tourism
• Cost effective
(Richter et al 2010 in press)