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Disclosure of HIV to Perinatally Infected Children and Adolescents

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HIV Clinical Guidelines from the New York State Department of Health AIDS Institute ... about the disease as the child matures cognitively, emotionally, and sexually. ... – PowerPoint PPT presentation

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Title: Disclosure of HIV to Perinatally Infected Children and Adolescents


1
Disclosure of HIV to Perinatally Infected
Children and Adolescents
HIV CLINICAL RESOURCE www.hivguidelines.org Of
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

2
  • 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.

3
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

4
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

5
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

6
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.

7
Collaborating With Families to Develop a
Disclosure Plan
8
  • 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

9
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

10
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

11
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

12
Strategies to Facilitate Caregiver Readiness to
Disclose HIV Diagnosis to Their Children
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18
Individualizing the Disclosure Plan
19
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
20
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)

21
Preparing for the Disclosure Discussion
22
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

23
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

24
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

25
Considerations for HIV Disclosure to Adolescents
26
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.

27
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

28
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

29
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

30
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

31
Post-Disclosure Assessments
32
  • Key Point
  • Disclosure is a process that does not end with
    telling an HIV-infected child the name of their
    illness or diagnosis

33
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

34
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

35
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
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