JLICA Group 1

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JLICA Group 1

• Through the looking glass an analysis of HIV
  AIDS strategies from a family perspective
• Prof Lorraine Sherr, UCL, London
• Co-chair LG1

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• JLICA Goals
• Protect and fulfill the rights of children
  affected by HIV/AIDS by mobilizing the evidence
  base and producing actionable recommendations for
  policy and practice.
• Assemble, analyse and interpret evidence to
  address implementation gaps to ensure universal
  access to health, education ad social protection

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Objectives

• Expand space for new thinking
• Mobilize and generate evidence
• Facilitate linkages
• Advance action

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Vast area
Policies that hinder What is the knowledge
base How does it inform us

• Medical
• Economic
• Policy
• Gender
• Family

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Set out

• Area
• What was done
• What was found

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HIV prevention in pregnancy

• Conception rather than from birth.
• Maternal (and paternal) physical and mental
  health contribute greatly to the family in which
  the child is born, and to the integrity of the
  caregiving environment.
• HIV prevention in pregnancy benefits children.
• Sustaining intact families benefits children.
• Parents, grandparents, siblings and extended
  family are a rich resource for the new infant.

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HIV testing - Looked at

• Quality of testing
• Limited concepts around PMTCT
• Testing offered to women only
• Male/couple testing
• Uptake
• Results return

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HIV testing found

• Family approach suggest couple testing/ father
  inclusion - rare
• Family approach sees sex during pregnancy (repeat
  testing rare)
• Quality VCT generally poor
• Menu driven, lay provided counselling

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Prevention interventions in pregnancy (MTCT)

• Family approach suggest wide reach
• UNAIDS data shows low reach
• 9 2004,
• 34 2007
• FAILED X

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Antiretroviral treatment looked at

• Uptake of ART in pregnancy (WHO data)
• Resistance
• Family approach treat the mother

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Antiretroviral treatment found

• 9 2004, increased to 34 still low.
• Must be lower for all positive women
• Treat to prevent transmission to child, not to
  keep mother alive
• MTCT as a family approach proven efficacy
• Barriers reach, stigma, breast feeding,
  feedback of infant outcome results
• Nvp Resistance 25, ZDv 3TC tail reduces -
  Arrive 08 meta-analysis 36 to 4.5
• Infant resistance - insufficiently studied
• Use of monotherapy resistance potential

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Viral rebound after suppression to lt 400 copies/mL
Percent
All 307 / 1433 (21) Naive 132 / 1024
(13) Nucleoside experienced 175 / 409 (43)
Nucleoside experienced
Naive
0 1 2 3 4 5
Years from viral load lt 400 copies/mL
Censor if rebound due to stopping therapy (from
Phillips et al AIDS)
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Feeding looked at

• Breast feeding
• Formula feeding
• Mixed feeding exclusive feeding
• Interventions

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Feeding - found

• Overall, breast feeding adds a 5-20 risk of HIV
  infection to the infant
• Interventions - treatment of the mother to reduce
  infectivity, heat treatment of expressed breast
  milk and early weaning

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Family care

• The narrow focus of the PMTCT programme addresses
  the singular issue of prevention of
  mother-to-child infection, but does not direct
  itself to the broader family issue of prevention
  and healthy productive developmental
  environments.
• The approach, albeit highly effective, is based
  on an individualistic medical model of care
• 12 years since ACTG076 medical model needs to
  provide for a bigger picture model

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Family approaches to child care.

• Literature on child development (in the presence
  of HIV directly and indirectly)
• Child development areas such as
• Treatment of HIV positive children
• Policy around orphan definitions and problems
  that may arise
• Institutionalised care and child development
• Mobility, separation and child development
• Schooling and child development
• Nutrition, HIV and child development
• Bereavement
• Cognitive development and HIV
• Parental mental state
• Other family members

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Treatment and HIV positive children

• 13 Africa high prevalence countries, 293
  400 children are estimated to be in need of
  antiretroviral treatment.
• Roll out to children low, late and left out
• Quality of treatment
• Unique adherence issues (Reddi 2008)
• Literature review only 1 rct on child adherence

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Orphan definitions

• Images are often negative
• Pull at the heartstrings
• Evoke pity and fear hordes of orphans

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From all Orphans studied, 12 on average area
double orphans. (Belsey data LG1)
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Orphan definition

• Systematic review of all studies gathered
  medline/ psychlit/IAS/pubmed, Soc Sci index
  n383 (only 18 published control group)
• Majority (n273, 71.3) did not differentiate or
  clearly define orphan.
• Those that did, used a variety of definitions,
• one or both parents died n64, 16.7
• both parents died n13 (3.4),
• mother died n23, (6.0)
• father died (n3, (.8)
• or multiple definitions used within the study
  (including death of primary caregiver), n7,
  1.9).
• Few gave the age ranges included to clarify the
  aspect of child. Of those that did, under 19
  years and under 15 years were reported
• Few differentiated HIV status of the child
• Systematic review of positive and negative
  effects (Sherr et al AIDSCare 2008)

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Results Systematic Search

• Journals 360 orphan and AIDS keyword
• 198 relevant to orphans,
• 142 providing data
• Toronto 10,126 studies in total
  344 orphan keyword
• 166 relevant orphan data
• Bangkok 8057 studies in total
• 298 children keyword
• 75 relevant orphan data
• 383 studies coded in total
• 17 with control groups included in detailed
  analysis

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Results 1. Orphan Definitions
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Psychological Outcomes

• 74 concepts derived and clustered into 9 themes
• Trauma, Stress, Grief
• Stigma, Discrimination
• Internalising Externalising problems
• Lack of basic needs food, shelter, education
• Abuse sexual, physical, emotional
• Developmental issues
• Lack of nurture and support
• Taking responsibility of adults
• Lack of rights

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Systematic Review Findings

• Overall, consistently reported negative effects.
• 188/383 - negative psychological effects (49)
• Caution in interpretation
• - Many measures employed,
• - Not all generated negative findings
• - Orphan groups further compounded by HIV
  - HIV invariably not measured nor controlled
  for)
• - Lack of standardised measures
• - Lack of standardised definitions and
  inclusion paternal/maternal orphans in
  studies
• - Variance in cut off ages (15 19 yrs common)
• - No data from any study could be verified
  adequately against another
• More data is needed with adequate controls and
  definitions

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Institutionalised care

• Good evidence that institutions are not good for
  child development (range of studies, situations
  and outcomes)
• Review of the general literature
• Reversible
• Policy implications for family based provision

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Mobility, separation

• No policy on separation
• Review of studies
• Separations common
• Should be minimised and included in policy
• Keeping families intact whatever and whoever
  remain

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Schooling and child development

• Systematic review of the literature
• 15 key controlled studies identified (tabulated)
• 13/15 identified a negative effect of orphanhood
  on at least one aspect of schooling.
• Control and comparison groups vary
• HIV status of child issue
• Poverty is an overriding issue.
• Age appears to be a factor, but may be mediated
  by age cut off for free school provision
  and
  age-related caring duties
  within a household.
• Gender of the child as well as
  the
  gender of the adult nb

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Nutrition and child development

• General overview
• Systematic review of nutrition
  and HIV and Children studies
• 14 identified with control groups and empirical
  data. (tabulated)
• 10 studies recorded no nutritional effects in
  comparison to control groups,
• 4 studies noted effects.
• Most of the studies (12/14) did not control for
  child HIV status, let alone parental HIV status.
  
• Nutrition important, studies needed.

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Bereavement

• Review of the general literature
• Systematic review of HIV, Children and
  bereavement
• 16 studies identified
• A complete lack of consistency of measurement,
  let alone standardized methodology in recording
  data and defining populations
• Qualitative coding for themes and measures used

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Effects of parental death
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• Protective Factors
• Competent remaining caregiver
• Higher SES
• Peer acceptance
• Opportunity to talk openly about the deceased
• Strong parent-child relationships
• Stability of family circumstances
• Availability of social support
• Secondary education
• Attending school
• Access to medical care

• Risk Factors
• Residential and caregiver instability
• Remaining parental psychological morbidity
• Traumatic parental death
• Poor family relationships
• Poor family communication
• Negative influence from role models
• Stressful life events
• Low self esteem
• Fear of abandonment
• Stigma
• Poverty
• Multiple bereavement
• Family conflict
• Lack of medical care

Conclusion-. Very little work directly on
bereavement - paucity of detailed understanding
of the mental health ramifications and needs in
this area, despite the high profile presence of
AIDS related bereavement for young children.
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Cognitive development

• Systematic review
• 54 studies identified
• Include children with HIV, at least one
  systematic measure of cognitive functioning,
  report on place of study, sample size, age and
  outcome measures

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CONTROL GROUPS USED
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Findings

• 13 (24) had no control groups
• 3 studies found no effect of HIV on cognitive
  outcomes. 4 mixed effects (some negative and some
  positive). The remaining (81) all show
  detrimental effect of HIV on outcome measures,
  whatever they were.
• Systematic review of all measures
• Limitations and critique, vast age ranges,
  different control groups (seroreverters). Small
  samples abound.

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Does it matter?

• Llorente (03 USA) Bayley score predictive of
  death.
• Mialky (01) 24 not appropriate grade, 53
  special services in school.
• Stow et al (05 USA, n940) 58 social and school
  problem.

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Parental mood

• Depression (maternal and paternal) shown to
  affect child development
• Limited literature
• Depression linked to HIV (diagnosis and illness)
• Depression linked to pregnancy
• Area of need for literature and evidence base

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Family approach WHO fits in the picture??

• Fathers They matter
• Studies concentrate on dead
  fathers

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Grandparents

• Literature search generated 75 papers, of which
  36 were relevant.
• 22 of these provided quantitative data, and 14
  qualitative descriptions.
• Siblings, extended family
• Lack of systematic literature

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Gender considerations in programmes

• Gender concerns that permeate much of the
  thinking on children and families, but which may
  not be highlighted sufficiently in an AIDS
  response
• Global statistics not aggregated by gender
• All previous systematic reviews were re-evaluated
  according to gender

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Taste of gender findings

• Global statistics not gathered by gender
• Data often gathered but not analysed
• Risk infection girls 1.51
• C Section girls 21
• Resistance boys 71
• Cognitive performance no gender effects in 2
  studies which report and analyse
• etc..

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Voice and views of children

• Often not what we expect

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Need mechanisms to listen and respond
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False belief that we protect children by wrapping
them in bubble wrap, do not study them, do not
generate evidence based policies.
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How Good is the Evidence?

• Generally weak
• Population (OVC etc) poorly defined
• Lack of scientific studies control groups,
  measurement, statistical analysis
• Little systematic research in many areas,
  especially evaluated interventions
• But good evidence not heeded
• Targeting orphans, child-heads, skip generations,
  institutional care