To disclose or not to disclose

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To disclose or not to disclose?

• The interaction between disclosure of HIV status,
  adherence and treatment outcome

Ursula Krumbach Malabika Sarker Florian
Neuhann
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Driving forces
Public health
Individual rights

• Jonathan MannThe right of the individual and
  public health must be protected

To disclose or not to disclose?
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Literature Review Study questions

• What is known about patterns of disclosure of HIV
  sero-status in HIV positive heterosexual
  individuals?
• Does disclosure influence adherence to ART?
• Does disclosure influence treatment outcome of
  ART?

To disclose or not to disclose?
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Characteristics of reviewed studies
Total 72 HICs 45 LICs 27

• focussing on heterosexual transmission
• excluding pediatric, PMTCT, MSM (gt50) and
  PEP studies
• 40 Quantitative Studies, 32 Qualitative Studies
• through June 2007 , gt 30 published before
  2001
• 4 studies excluded after Quality Assessment

To disclose or not to disclose?
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Geographical origin of studies
Europe 7
India 2
USA 35
Latin America 3
Thailand 4
South Africa 6
Subsaharan Africa 11
To disclose or not to disclose?
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Disclose to whom, when and why? (1)

• Rates of disclosure to at least one person
  higher in LICs (70-92) compared to HICs (44-67)
• predominantly to the spouse in both settings
  (60-86),
• less frequent to other partners (50 in LICs,
  25 in HICs)
• more frequent to a member of the immediate family
  in HICs ( 70-94 vs 31- 78 in LICs )
• even wider ranges for other groups (e.g.
  colleagues at work)

To disclose or not to disclose?
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Disclose to whom, when and why? (2)

• Cumulative over time
• Timing poorly studied - frequently within the
  first month after diagnosis
• LICs Secure support for oneself and the
  children, prepare family for disease and death
• HICsStress relief , catharsis

To disclose or not to disclose?
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Reasons for Non-Disclosure

• HICs
• Fear of stigma, discrimination, violence
• Fear of suspicion, jealousy of the partner,
  lacking desired sexual encounters
• Partners capacity to cope
• Denial of financial or sick care support
• Loss of privacy

• LICs
• Fear of stigma, rejection, abandonment, isolation
  and violence
• Breach of confidentiality
• Concern about future childbearing
• Disclosure not perceived as being helpful

To disclose or not to disclose?
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Disclosure and Adherence

• No clear picture emerges from the studies
• Some studies suggest that disclosing supports
  adherence, others fail to show a relation
• Disclosure was associated with keeping medical
  appointments
• Involuntary or uncontrolled disclosure was
  associated with poorer adherence in 1 study
  (Peretti-Watel et al , 2006)

To disclose or not to disclose?
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Disclosure and treatment outcome

• 3 studies - all US
• 1 supported positive effect
• Malcolm et al 2004excellent adherers, open
  about status, lower VL
• Other 2 no association found
• Under-studied area

To disclose or not to disclose?
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The complex interrelation of disclosure
adherence and ART
Non-disclosure(concealment)
disclosure
Therapeutic effect
Adverse effect
Adherence
Non - Adherence
Adapted from Klitzman et al 2004
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Conclusions

• Disclosure as a process is
• Highly variable
• Selective
• Time dependent
• Contextual with major differences between HICs
  and LICs
• Disclosure has the potential to
• create social support
• lead to better adherence
• cause negative social consequences
• impede adherence

To disclose or not to disclose?
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To disclose or not to disclose?Recommendations

• Avoid mandatory /close to mandatory policies
• Leave the decision to the client
• Accompany the client in the process
• Create an environment that allows enables
  clients programs to use the potential
  benefits of disclosure

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Thank you