Transcript Document

Panel on Disclosure of HIV
Serostatus
Ana Garcia, PhD, LCSW
Gwendolyn Scott, MD
Ann Usitalo, PhD, MPH
Disclosure of Financial Relationships
The speakers have no significant financial
relationships with commercial entities to
disclose.
This speakers will not discuss off-label use
or an investigational product during the
program.
This slide set has been peer-reviewed to ensure that there are no
conflicts of interest represented in the presentation.
ISSUES, STRATEGIES, PROCESSES
Introduction
• Communication of personal information
about one person to another
– To reveal
– To expose
• Complex, multilayered process
• Personal decision
• Power and control
– Empowerment
Disclosure occurs in context of
• Relationships
• Social and cultural norms
• Communication skills
• Psychosocial variables
• Legal, ethical and moral issues
Disclosure to HIV+ Children
 Ongoing discussion as child matures
cognitively, emotionally, sexually
 Helps child understand disease
 Avoids accidental disclosure
 May decrease behavior problems
by decreasing stress
 Validates concerns and clarifies misconceptions
 Establishes basis for honesty in important
relationships
 American Academy of Pediatrics encourages
disclosure to school-aged children
Gerson, et al., 2001; NY State Department of Health AIDS Institute, 2009; Weiner, Mellins,
Marhefka & Battles, 2007;
Caregiver Concerns
 Child will inappropriately disclose
 Stigma, rejection, loss of support
 Desire to protect child from worrying
 Fear that knowledge of status will lead
to mental health and behavioral problems
 Feelings of guilt and shame
 Uncertainty about what to tell child
 Fear of child’s anger or blame
 Non-disclosure of adoption or relationship
status
NY State Department of Health AIDS Institute, 2009
Guidelines for Disclosure
• Begin discussion early in childhood
• Timing depends on caregiver readiness &
child’s cognitive skills and maturity
• Discuss risks and benefits
• Address caregiver concerns
• Collaborate in development of plan
• Respect caregiver’s reasons for resisting
• Refer for counseling if necessary
NY State Department of Health AIDS Institute, 2009
Strategies to Facilitate Disclosure
• Child too young or emotionally immature to
understand
– Increase information gradually, from “medications that keep you
healthy” to discussions of immune system
• Child will disclose to others
– Assess cognitive and emotional ability to understand confidentiality
– Identify people child can talk to
– Promote intra-family communication
• Child will have difficult reaction
– Assess child’s emotional and behavioral functioning
– Offer support before and after disclosure
NY State Department of Health AIDS Institute, 2009
Strategies to Facilitate Disclosure
• Parent feels guilty
– Counseling to alleviate guilt
– Encourage parent in affirming
and helpful role
• Concern that child will ask about sexual
behavior or drug use
– Help caregiver decide how to answer questions
– Use role-playing to prepare caregiver
• Caregivers disagree about disclosure
– Assess individual concerns
– Develop plan acceptable to both
NY State Department of Health AIDS Institute, 2009
General Principles of Disclosure
 Consider
 Caregiver’s thoughts & feelings, cultural influences,
family/social circumstances, the child (!), effect on
other siblings and family members, types of support
available
 Use developmentally appropriate language
 Keep disclosure separate from birthdays and other
important events
 Share diagnosis quickly; do not delay or stall
 Promote sharing of feelings but ACCEPT silence
 Allow child to ask questions at disclosure and later
 Provide educational materials
 Revisit the issue later but do not force
NY State Department of Health AIDS Institute, 2009
Disclosure to HIV+ Adolescents
•
•
•
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AAP advocates full disclosure
Assume responsibility for health
May increase adherence
Affects treatment
– Medication management
– Sexuality and risk reduction
• Prevents unknowingly exposing others
• Research indicates positive outcomes
– Decreased anxiety
– Increased intention to self-disclose to sexual
partners
Case Study I
 12 yo female
 Outgoing, no significant cognitive or behavioral
issues
 Both parents HIV+
 Issues with adherence
 Reasons for not disclosing
 “ We’ll tell her when she is in her 20’s
…don’t want to spoil her childhood”
 “Don’t want her to ask about
our past”
 “She’s doing so well”
 No plan to disclose
Adolescent Support Group
(with Silang DeFour)
Disclosure to HIV- Children
• Rates of parental disclosure vary widely
– Mean ≈ 40 % in US across studies
≈ BUT, 60% children aware of parental status
• Disclosure age-related but varies widely
– 7-10 average age
– Rates increase with age
• HIV- siblings of HIV+ children and adolescents
– Who should know?
• Older and adult children
– Have potential to offer most support
– Anger toward person perceived to be responsible
Maternal Disclosure to Exposed but Uninfected Children
• Births to HIV+ women increasing dramatically
– 8700 in 2006
– 7 HIV+ babies born in Florida in 2010
– Others, HIV- but exposed to HIV & ART
• Potential complications
– Cardiac disease
– Hearing loss
– Attention, memory, visual spatial skills
• Ethical and legal issues
– Maternal HIV status is PHI
– “Child” awareness of potential health issues
• Initiate discussion of disclosure and potential health
issues early in pregnancy and at follow-up
Case Study II
• 14 yo male
• Exposed but uninfected
• Participates in research studying effects of in
utero exposure to HIV and ARVs
• Good student; no behavioral problems
• Mother with past history of HIV-related
health problems she explained as “heart
problems”
• Child has history of anxiety disorder, worries
about mother’s health
TRACK Program
 Intervention to assist mothers with disclosing to
children (6-12 years)
 Intervention
 3 individual sessions & phone call
 Results
 Intervention group 33% more likely to disclose
 Reported appropriate emotional tone, ability to answer
questions, helped child identify “safe” people
 Greater self-efficacy, increased communication with
children, improved emotional functioning
 Children exhibited reduced depression and anxiety,
increased happiness
Murphy, Armistead, Marelich, Payne & Herbec, 2011
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Model of HIV Disclosure and Types of Social
Relationships
Sexual Relationships
Anonymous,
casual, or short
term sexual
relationships
Beginning relationships
NOT
Disclosing
(Bairan, et al., 2006)
Long-term, noncasual,
committed
sexual
relationships
Disclosing
Casual Partners vs Long-Term Relationships
 Factors influencing disclosure




Partner type
Location of sexual encounter
HIV status of partner
Personal characteristics
 Social vs. sexual intimacy
 ≈ 50 % of HIV+ adolescents do not disclose
status
 No direct, consistent link between disclosure and
lowered sexual risk behaviors
 HIV+ adolescent females believe disclosure shifts
responsibility for prevention to partner (Marhefka, 2011)
Legal and Ethical Issues
 Florida Law
 Unlawful for HIV + person to have sexual intercourse
with another without disclosing status
 Initial offense – 3rd degree felony, > 5 years & $5,000
 Multiple violations – 1st degree felony, > 30 years & $10,000
 No systematic enforcement
 3 cases/year average in Florida from 1987-2010
 Prosecutions in same-sex cases halted
 L.A.P. vs State of Florida, 2nd District Court, Appellate Division
(62 So. 3d 693)
 “Duty to Warn”
 The Ryan White HIV/AIDS Program requires that health
departments show “good faith” efforts to notify the
marriage partner of a patient with HIV/AID
 Provider-Patient Confidentiality
Case Study III
• 21 year old female
• Several male partners
– 2-3 casual
– 1 committed
• Never explicitly disclosed
• Consistent condom use UNLESS male
refuses
• What if viral load
– Undetectable?
– >250,000?
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Discussion Questions (from UF CARES Staff)
• What do you see as greatest challenges to disclosing? (from
both patient and provider perspectives)
• What are the real consequences to a child of not knowing
their status?
• What can I say to make a parent aware of the consequences
of not disclosing?
• Do you feel we “give-in” to parents when we help them
conceal their child’s diagnosis? What if the child had cancer?
• What about concealing their exposure (if HIV-)?
• What are the legal requirements? Ethical conflicts?
• What do you do when an adolescent or adult has not
disclosed to their partner?
• Disclosure or protection, which should I focus on? Why?
• What should we really be doing to facilitate disclosure?