Disclosure of HIV to Perinatally Infected Children and Adolescents HIV Clinical Guidelines from the New York State Department of Health AIDS Institute November 2009 HIV CLINICAL RESOURCE Office of the Medical Director NYS DOH AIDS Institute in collaboration with the Johns Hopkins University Division of Infectious Diseases HIV CLINICAL RESOURCE Office of the Medical Director NYS DOH AIDS Institute in collaboration with the Johns Hopkins University Division of Infectious Diseases

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.

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

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

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

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.

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

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

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

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

Strategies to Facilitate Caregiver Readiness to Disclose HIV Diagnosis to Their Children Caregiver FearStrategy 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.

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

Caregiver FearStrategy 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

Caregiver FearStrategy 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

Caregiver FearStrategy 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

Reason for Reluctance Strategy to Overcome Caregivers disagree about disclosing to child Assess each person’s concerns and work together to develop a plan. Provide mental health/social work support if necessary Foster parent and foster agency disagree about disclosure Arrange for discussion among foster parents, foster agency, and clinical team

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

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)

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

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

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

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.”

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

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

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

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

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

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

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

Online Disclosure Resources Resource for caregivers: sclosure.jspwww.thewellproject.org/en_US/Womens_Center/HIV_and_Di sclosure.jsp Resources for both caregivers and adolescents: Books about HIV that can be ordered for children: