Disclosure of HIV to Perinatally Infected Children and Adolescents

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Disclosure of HIV to Perinatally Infected
Children and Adolescents
HIV CLINICAL RESOURCE www.hivguidelines.orgOf
fice of the Medical Director NYS DOH AIDS
Institute in collaboration with the Johns Hopkins
University Division of Infectious Diseases

• HIV Clinical Guidelines from the New York
  State Department of Health AIDS Institute
• November 2009

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• Disclosure of HIV status is not a one-time event,
  but rather a process, involving ongoing
  discussions about the disease as the child
  matures cognitively, emotionally, and sexually.

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Why is HIV Disclosure Important?

• May increase a childs willingness to adhere to
  treatment regimen
• Helps children understand the illness
• Avoids an accidental disclosure from occurring
  (e.g., child overhears caregiver discussing it)
• May decrease behavior problems by decreasing
  stress
• May improve social functioning and school
  performance by decreasing stress

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How does disclosure promote a positive adjustment
to living with HIV infection?

• Provides developmentally appropriate and truthful
  explanations of the disease
• Validates the childs concerns
• Clarifies misconceptions
• Provides ongoing support

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When Should the Disclosure Process Begin?

• Discussions between the clinical team and
  caregivers should begin early in the patients
  childhood
• The American Academy of Pediatrics (AAP)
  encourages disclosure of HIV infection status to
  school-aged children
• Whenever possible, disclosure should occur when
  child is clinically and emotionally stable and
  caregiver is ready

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Timing of Disclosure

• Will depend on
• Caregivers acknowledgment of disease and
  readiness to disclose
• Childs cognitive skills and emotional maturity
  (including ability to maintain confidentiality)
• Disclosure process should not be rushed, but
  timing of disclosure becomes more pressing as
  child nears adolescence.

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Collaborating With Families to Develop a
Disclosure Plan
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• Assess, early in the patients childhood, the
  readiness of caregivers to disclose HIV diagnosis
  to child
• Work with caregivers to develop a disclosure plan
  that meets the individualized needs of the family
  and child

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Discuss the following with caregivers on an
ongoing basis

• Caregivers concerns about disclosure
• The importance of ongoing communication with
  child regarding health issues
• Benefits and risks of disclosing the diagnosis of
  HIV infection to child
• Potential harm that can result from long-term
  nondisclosure

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Common Reasons Why Caregivers are Reluctant to
Disclose HIV to Children

• Fear that child will inappropriately disclose HIV
  status
• Fear of stigma, rejection, and loss of support by
  family/community
• Desire to protect child from worrying about
  future
• Possibility that the burden of learning of HIV
  status will lead to depression or other mental
  health issues
• Feelings of guilt and shame may prevent
  HIV-infected caregivers from disclosing their own
  infection to their child
• Caregivers may have adopted child and not yet
  disclosed adoptive status

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What to do when caregivers are reluctant to
disclose?

• Respect caregivers reasons for fearing or
  resisting disclosure and attempt to understand
  the factors associated with the reluctance
• Validation of caregivers concerns can foster a
  partnership and prevent the development of an
  adversarial relationship between the members of
  the healthcare team and caregivers
• Collaborate with caregivers to develop a plan
  that addresses individual concerns
• Referrals for counseling may be necessary

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Strategies to Facilitate Caregiver Readiness to
Disclose HIV Diagnosis to Their Children
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Individualizing the Disclosure Plan
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Factors to Consider When Developing an
Individualized Disclosure Plan

• Childs age, cognitive ability, and developmental
  understanding of illness and mortality
• What child has already been told and what child
  already knows about medications or doctor visits
• Clinical status of child
• Other disclosures that may need to be made (e.g.,
  adoptive status, paternity issues, or parental
  HIV diagnosis)

Referral to a mental health professional should
be considered when disclosing both adoptive
status and HIV status
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Factors to consider, continued

• Caregivers thoughts about disclosure
• Cultural influences
• Family/social circumstances
• Anticipated response of child when learning
  diagnosis
• Effect on HIV-infected and non-infected siblings
• Types of support available to the child and
  family once disclosure occurs (e.g., counseling,
  peer support groups)

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Preparing for the Disclosure Discussion
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Aspects to Discuss with Caregivers

• Importance of using developmentally appropriate
  words and language
• Assessment of childs coping skills, school
  functioning, and family support
• General principles of disclosing HIV status

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General Principles for Disclosing HIV Status

• Date of disclosure should not coincide with other
  events such as birthdays, holidays, graduation,
  etc.
• Use clear and developmentally appropriate
  explanations of the disease/diagnosis
• Share the diagnosis quickly, do not delay or
  stall
• Promote sharing of feelings, but also accept
  silence
• Always allow the child to ask questions
• Give developmentally appropriate educational
  materials
• Both the healthcare team and caregivers should be
  involved throughout the process

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Pre-disclosure Assessment

• Assess the following prior to disclosure
• The childs school functioning
• Family and peer relationships and support
• Interests and activities
• Mood and behavior

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Considerations for HIV Disclosure to Adolescents
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AAP recommends that adolescents know their HIV
status

• They should be fully informed to appreciate
  consequences for many aspects of their health,
  including sexual behavior. Adolescents also
  should be informed of their HIV status to make
  appropriate decisions about treatment and
  participation in clinical treatment trials.
  Physicians should also encourage adolescents to
  involve their parents in their care.

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Reasons why adolescents should know their HIV
status

• Provides an opportunity to assume responsibility
  for their own healthcare and well-being
• May increase adherence
• May prevent sexually active adolescents from
  unknowingly exposing others to HIV

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Reasons why adolescents should know, continued

• May affect how clinician counsels about sexuality
  and risk-reduction
• Builds a trusting therapeutic relationship
  between clinician and patient
• Helps develop self-management skills, in
  preparation for eventual transition to adult care

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Adolescents and Disclosure

• Strive to ensure that adolescents are fully
  informed of their HIV status in a reasonable time
  frame
• Caregivers who object to disclosing an
  adolescents HIV diagnosis should receive
  intensive support and services from the clinical
  team to address their concerns
• Assess what adolescent already knows about their
  health/illness to guide future discussions
• Provide opportunities for adolescent to discuss
  healthcare issues with clinical team independent
  of caregiver

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As part of disclosure discussions, discuss the
following with adolescents

• Help adolescents identify a supportive person to
  whom they can safely and comfortably discuss
  HIV-related issues
• Address false or negative ideas that the
  adolescent may have about issues such as
  transmission, treatment, life expectancy, or
  reproductive options
• Counsel about sexuality and risk-reduction

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Post-Disclosure Assessments
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• Key Point
• Disclosure is a process that does not end with
  telling an HIV-infected child the name of their
  illness or diagnosis

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How is the child coping?

• After the HIV diagnosis has been disclosed,
  follow-up calls or visits should be made to
  assess the childs understanding of the illness
  and emotional and psychological adjustment
• At every visit after disclosure, assess
  child/adolescents emotional well-being and
  functioning in the following areas
• School functioning
• Family and peer relationships and support
• Interests and activities
• Mood and behavior
• Work closely with caregivers to monitor for
  changes in functioning that may signify poor
  adjustment

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Additional Support and Referrals

• Additional support may be needed for children who
  demonstrate significant post-disclosure changes
  in behavior
• Patients and families who have a difficult
  adjustment to HIV disclosure without progress
  over time should be referred for mental health
  services and additional support

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Online Disclosure Resources

• Resource for caregivers
• www.thewellproject.org/en_US/Womens_Center/HIV_and
  _Disclosure.jsp
• Resources for both caregivers and adolescents
• http//aidsinfonet.org/fact_sheets/view/204?lange
  ng
• www.myhivlife.com
• Books about HIV that can be ordered for children
• www.kidstalkaids.org/program/index.html