Patterns of Disclosure in HIV Infected Women Detected During Pregnancy and its Implications on Exper

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Patterns of Disclosure in HIV Infected Women
Detected During Pregnancy and its Implications
on Experiences of Stigma

• Smita Apte, Sanjeevani Kulkarni, Vinay Kulkarni,
• Ritu Parchure, Shriniwas Darak, Vijaya Jori
• PRAYAS Health Group,
• Pune, India

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Disclosure

• To know and to reveal
• Can generate compassion or discrimination
• Crucial with respect to stigmatized issues as can
  affect treatment and support seeking
• HIV, unfortunately, is still a highly stigmatized
  disease

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Disclosure

• To display or not to display to tell or not to
  tell to let on or not to let on to lie or not
  to lie and in each case to whom, how, when and
  where.
• - (Goffman, 1963)

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Disclosure of HIV status

• Multiple variables that influence the process
• Circumstances at the time of diagnosis
• Time since diagnosis
• Societal stigma fear and experiences
• Access to information and care support
• Gender

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Vulnerability of Women to HIV/AIDS

• Biological vulnerability
• Secondary social status
• Lack of negotiation power
• Economic and social dependency
• Abuse
• Violence
• Trafficking

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Circumstances at the time of Diagnosis
Women
Men

• Symptoms
• Partner tested Positive
• Pre-operative
• Pre-employment
• Voluntary testing

• Partner tested positive
• ANC check-up
• Pre-operative

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HIV testing during pregnancy

• Done without consent and counseling in most of
  the women
• Immediate issues related to pregnancy to be taken
  care of
• Has both short and long term implications
• In Indian context lot of information management
  may be required as both in-laws and natal family
  are involved in care and support
• Disclosure of status is critical for accessing
  care

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• The present paper discusses different patterns of
  disclosure in HIV infected women detected during
  pregnancy and its consequences on experiences of
  stigma
• It is based on retrospective analysis of data
  generated during implementation of PMTCT program
  of PRAYAS in private health care sector in
  Maharashtra

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BackgroundPrayas PMTCT program

• Being implemented since 2002
• Around 1,00,000 pregnant women from urban and
  rural areas counseled
• Provided services to 870 HIV infected pregnant
  women
• Two groups of women were seen
• HIV infection detected in women at the program
  sites (Received Pre and post-test Counseling)
• HIV infected women referred from outside for care
  (Tested without counseling)

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Data Collection

• Demographic, quantitative as well as qualitative
  data recorded at each visit
• Information related to disclosure documented in
  the form of a new tool called disclosure graph

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Disclosure Graph

• Information regarding flow of disclosure - who
  disclosed to whom and when - is recorded in the
  form of a flow diagram
• This tool (Disclosure Graph) was developed at
  PRAYAS during a previous study on stigma

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Methods

• For the present study data of 202 women detected
  in current pregnancy were analyzed
• Out of 202,
• 86 received pre test counseling
• 116 were referred and did not receive pre test
  counseling
• The two groups were compared for
• Disclosure patterns
• Consequences in terms of treatment uptake,
  adherence to protocols and experiences of
  supportive and stigmatizing reactions

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Profile of the respondents

• All women were living as married
• Majority were housewives.
• In both the groups 86 couples were concordant

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Note In both groups number of people knowing
the diagnosis in the beginning could be more than
one .

• Majority (98) who received pre test counseling
  were the first ones to be disclosed about their
  status.
• In other group mostly it was husband and other
  family members who were first to know of her
  status. The disclosure was mostly without her
  consent.

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Total number of people knowing about her status
(Till the time of possible follow up in the
project)
This small difference actually translates
into much larger lack of control over disclosure.
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FLOW OF INFORMATION
Pre test counseling received
Pre test counseling not received
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Consequences

• In laws were the major source of stigma in both
  the groups

My in laws have disowned me, they asked me to
stay at my natal place. My husband got remarried.
He never came to see me / our baby even once.
They (in laws) dont allow me to do any work at
home. I am treated like an untouchable. They
dont take care of my diet, my health.
My sister in law has kept all his (husbands)
things separate. She has made a separate
arrangement for him to sleep.
They say (in laws) I deceived him (husband).
And so they will not take any responsibility
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Consequences
Natal family was very supportive in almost all
the cases
Its because of my parents that my child could be
saved from the infection. My in laws have
disowned me for no fault of mine.
My mother takes great care so as I take medicines
on time. She is the one who accompanies me to
hospital every time.
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Consequences

• There was no significant difference in treatment
  uptake and adherence to protocols

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Disclosure by health care providers

• In the group which did not receive pre test
  counseling, in 35 cases, the doctor had
  disclosed womans status to someone else without
  her knowledge
• In both groups there were incidents where
  uncontrolled disclosure was done by nurses and
  ward boys and other paramedics
• Especially observed around the time of delivery
  as personnel present may not be previously
  involved in care
• Often led to adverse outcomes such as further
  spread of information about her status, stigma
  from relatives, avoidance of further follow up at
  the same set up.

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Discussion

• Access to pre test counseling was an important
  variable which determined better control over
  disclosure pattern
• Less control over disclosure led to more number
  of disclosures especially among in laws
• Stigmatizing experiences were mainly from in laws
• Reduced control increases the vulnerability to
  stigma and discrimination.
• This adversely impacts treatment seeking
• Health care providers play an important role in
  determining the control over disclosure
• Higher risk of uncontrolled disclosures by health
  care providers in hospital settings especially
  during labor and in peri-natal period

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Recommendations

• Access to pre test counseling needs to be
  universalized
• Need for continuing training and sensitization of
  health care providers involved in care of HIV
  infected patients with specific reference to
  disclosure of the HIV status
• Need for cross cultural studies as present
  observations are from an Indian setting and a
  specific cultural context

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• Jonathan Mann identified stigma as the third
  epidemic following the hidden, yet accelerating
  spread of HIV infection and the visible rise in
  AIDS cases. He recognized that stigma,
  discrimination, blame, and denial were
  potentially the most difficult aspects of
  HIV/AIDS to address.
• (42nd Session of the UN General Assembly, 1987)

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Thank you!