HIV CLINICAL RESOURCE • www.hivguidelines.org
Office of the Medical Director NYS DOH AIDS Institute in collaboration
with the Johns Hopkins University Division of Infectious Diseases
Disclosure of HIV to Perinatally
Infected Children and
Adolescents
HIV Clinical Guidelines from the
New York State Department of Health
AIDS Institute
November 2009
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.
www.hivguidelines.org
Why is HIV Disclosure Important?
• May increase a child’s 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
www.hivguidelines.org
How does disclosure promote a positive
adjustment to living with HIV infection?
• Provides developmentally appropriate and
truthful explanations of the disease
• Validates the child’s concerns
• Clarifies misconceptions
• Provides ongoing support
www.hivguidelines.org
When Should the Disclosure
Process Begin?
• Discussions between the clinical team and
caregivers should begin early in the
patient’s 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
www.hivguidelines.org
Timing of Disclosure
Will depend on:
• Caregiver’s acknowledgment of disease and
readiness to disclose
• Child’s 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.
www.hivguidelines.org
Collaborating With Families to
Develop a Disclosure Plan
• Assess, early in the patient’s 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
www.hivguidelines.org
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 longterm nondisclosure
www.hivguidelines.org
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 HIVinfected caregivers from disclosing their own infection
to their child
• Caregivers may have adopted child and not yet
disclosed adoptive status
www.hivguidelines.org
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
www.hivguidelines.org
Strategies to Facilitate Caregiver
Readiness to Disclose HIV Diagnosis to
Their Children
Caregiver Fear
Strategy to Overcome
Child is too young or
emotionally immature to
understand disclosure
issues
Partial disclosure: Tell child that
medications help keep him/her
as healthy as possible. Then, as
part of disclosure plan, more
information is given, little by
little, as the child matures.
Introduce the idea of an immune
system, or a part of the body that
fights infections.
www.hivguidelines.org
Caregiver
Fear
Strategy to Overcome
Child will not
understand
when not to
disclose
•Assess child’s cognitive and
emotional ability to understand and
maintain confidentiality and
discuss assessment with caregiver
•Offer to create a “contract” that
outlines who the child can tell and
who the child cannot tell
www.hivguidelines.org
Caregiver Fear
Strategy to Overcome
Child’s reaction will be very
difficult
Assure the caregiver that the
team will provide support for
the family and child before,
during, and after disclosure,
including mental health
assessment and treatment if
necessary
www.hivguidelines.org
Caregiver Fear
Strategy to Overcome
Biological parent
feels guilty for
transmitting HIV
infection
•Counsel to help alleviate
guilt
•Engage parent in an
affirming and helpful role
with child to promote
empowerment
•Refer for mental health
treatment if necessary
www.hivguidelines.org
Caregiver Fear
Strategy to Overcome
Caregiver is worried
about questions that
child may ask about
caregiver’s sexual
behaviors or drug use
•Use role playing to
prepare caregivers to
answer embarrassing or
painful questions
• Help caregiver decide
how to answer questions
that may be asked
www.hivguidelines.org
Reason for
Reluctance
Caregivers
disagree about
disclosing to child
Strategy to Overcome
Foster parent and
foster agency
disagree about
disclosure
Arrange for discussion among
foster parents, foster agency,
and clinical team
Assess each person’s
concerns and work together to
develop a plan. Provide
mental health/social work
support if necessary
www.hivguidelines.org
Individualizing the Disclosure
Plan
Factors to Consider When Developing
an Individualized Disclosure Plan
• Child’s 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
www.hivguidelines.org
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)
www.hivguidelines.org
Preparing for the Disclosure
Discussion
Aspects to Discuss with Caregivers
• Importance of using developmentally
appropriate words and language
• Assessment of child’s coping skills, school
functioning, and family support
• General principles of disclosing HIV status
www.hivguidelines.org
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
www.hivguidelines.org
Pre-disclosure Assessment
Assess the following prior to disclosure:
• The child’s school functioning
• Family and peer relationships and support
• Interests and activities
• Mood and behavior
www.hivguidelines.org
Considerations for HIV
Disclosure to Adolescents
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.”
www.hivguidelines.org
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
www.hivguidelines.org
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
www.hivguidelines.org
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 adolescent’s
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
www.hivguidelines.org
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
www.hivguidelines.org
Post-Disclosure Assessments
Key Point:
Disclosure is a process that does not
end with telling an HIV-infected child
the name of their illness or diagnosis
www.hivguidelines.org
How is the child coping?
• After the HIV diagnosis has been disclosed, follow-up
calls or visits should be made to assess the child’s
understanding of the illness and emotional and
psychological adjustment
• At every visit after disclosure, assess child/adolescent’s
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
www.hivguidelines.org
Additional Support and Referrals
• Additional support may be needed for
children who demonstrate significant postdisclosure 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
www.hivguidelines.org
Online Disclosure Resources
Resource for caregivers:
• www.thewellproject.org/en_US/Womens_Center/HIV_and_Di
sclosure.jsp
Resources for both caregivers and adolescents:
• http://aidsinfonet.org/fact_sheets/view/204?lang=eng
• www.myhivlife.com
Books about HIV that can be ordered for children:
• www.kidstalkaids.org/program/index.html
www.hivguidelines.org