Disclosure

1
Disclosure
2
Why?

• Disclosure assumed to be a proxy measure for
  stigma with inverse relationship
• Stigma high, disclosure will be low
• Used previously in absence of more direct stigma
  measures
• Important because it is the direct connection
  between stigma and prevention, access to services
• Fear of stigma impedes sharing test results,
  practicing prevention, accessing services

3
Challenges

• Few people know their status
• Debate whether ethical to ask general population
  about actual disclosure
• Attitudinal questions difficult to interpret

4
Standard Response

• Hypothetical and general disclosure questions
• If you had HIV, would you disclose your status?
  (to anyone)
• Questions about attitudes towards disclosure
• Should a person living with HIV keep their status
  secret, or should this information be available
  to the community

5
What We Found
6
Willingness to Disclose
7
Actual Disclosure
8
Limited Nature of Disclosure

• Disclosure is limited to 1 or 2 people
• Partner (n66)
• Sibling (n178)
• Mother (n178)
• Disclosure takes time
• Partner mean 2 yrs 11 mos
• Sibling mean 2 yrs 6 mos
• Mother mean 1 yr 10 mos
• Children mean 3 yrs 10 mos
• Public mean 4 yrs 2 mos

9
General Attitudinal Questions

• Usual interpretation If stigma is high,
  respondents will say positive status should not
  be disclosed
• We asked a why question and found interpretation
  is problematic
• Majority said status should be open (yet
  perceived stigma is high) so that
• Community can protect itself
• PLHA should be an example and teach others

10
Conclusions

• Hypothetical (willingness to disclose) questions
  not effective
• low variability
• Attitude questions difficult to interpret
• Positive and negative answers can both reflect
  stigma
• Actual personal disclosure is preferable (if
  acceptable to measure)
• BUT need to know who and how long and the
  outcome of that disclosure-safe, supportive
  response?
• Do not recommend disclosure as a proxy measure
  for stigma measure stigma directly