HIV Disclosure: A Protocol to Facilitate HIV Disclosure of Infected Children and Youth

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HIV Disclosure A Protocol to Facilitate HIV
Disclosure of Infected Children and Youth

• Jennifer Lewis, Psy.D, Nessa Obten, MSW,
• Lisa Orban, Ph.D, and Susan Abramowitz, Ph.D
• NYU School of Medicine/Lower New York Consortium
• The Ryan White CARE Act Training and Technical
  Assistance Grantee Meeting 2006
• 9th Annual Clinical Update
• August 28 31, 2006, Washington, DC

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Presentation Overview

• Introduction
• Overview of Disclosure Issues
• Formation of a Disclosure Program
• Disclosure Committees Goals
• Proposed Disclosure Model
• Case Illustration
• Summary
• Future Directions
• Questions and Answers

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Disclosure Issues

• American Academy of Pediatrics (1999) recommends
  caregivers begin discussing their childrens HIV
  status when they are school aged (e.g., ages 6
  -12 years)
• Empirical research indicates that parents are
  often reluctant to discuss disclosure to their
  children and youth, until adolescence, or in some
  cases, not at all (Abadia-Barrero Larusso,
  2006, Nostlinger, et al., 2004)

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Delayed Disclosure of HIV Status

• Related to
• Non-adherence of medications
• Postponement of discussions regarding secondary
  risk
• Increases in mental health morbidity

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Undisclosed Youth

• Present a serious public health concern
• Sexual risk or re-infection
• Psychological problems
• (e.g., anxiety something is wrong, but I do not
  know what, depression)
• Behavioral problems
• (e.g., acting out, and difficult peer
  relationships)
• Limited access to treatment interventions

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Challenges Caregivers Face

• Psychological stress
• Stressed family dynamics
• Caregiver and provider conflicts
• Stigmatism
• Guilt
• Social rejection
• Need to protect the youth

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Advantages of Disclosure for Youth

• Improved academic performance
• Enhanced self-concept and social functioning
• Adherence to treatment regimens
• Better psychosocial adjustment (e.g., decreased
  anxiety, depression, and school-related issues)
• Safer sexual practices
• (Blasini, 2004, Abadia-Barrero Larusso, 2006)

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Impetus for the Disclosure Committee

• Recruitment of a youth specific clinical trial
  indicated that a substantial number of clients
  were ineligible to participate because of non-
  disclosure

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Formation of Disclosure Committee

• Why are we meeting?
• What is the need?
• Are we trying to completely change the way we
  have handled this in the past?
• Are there enough undisclosed patients in clinic
  to make this effort worthwhile?
• Can we utilize a model to assist with this
  endeavor?
• Is this going to be research?

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Committees Goals

• Re-visit how the team is working to help families
  with disclosure
• Collect data on the number of undisclosed
  children
• Review the literature
• Integrate a Disclosure Readiness Model (DRM)
• Develop strategies for improving work with
  patients and their families

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Committees Objectives

• Identify family needs on a case-by-case basis
• Determine stage of readiness to meet caregiver
  where they are
• Utilize DRM to move caregivers to next stage of
  readiness
• Tailor intervention to level of readiness

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Disclosure Readiness Model (DRM)

• Based on the stages of change (SOC) model
  (Prochaska and DiClemente,1984, 1986 1992)
• Developed in response to
• Delayed disclosure in the Pediatric Infectious
  Diseases Program
• Psychological and secondary risk factors of HIV
  youth
• An Assessment Tool to assist caregivers and
  providers in determining disclosure readiness
• A theoretical guide to allow the provider to
  tailor the intervention to facilitate disclosure

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DRM Goals

• To enhance caregiver awareness and facilitate
  ability to disclose within the family
• To reduce secondary risk factors in youth

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DRM Objectives

• To use stage specific problem-solving strategies
  to promote change
• To assist providers in assessing family
  appropriateness and readiness for disclosure
• To identify child/youth, caregivers and family
  variables

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DRM Levels of Assessment

• Developmental level/cognitive abilities within
  expected range?
• Will disclosure impact their emotional state?

• Have they disclosed their own status? To whom?
• Are supports/ resources available?
• Is health deteriorating and/or affecting ability
  to parent?
• Will disclosure impact their pre- existing
  diagnosis?

• Open vs. closed communication?
• How are secrets/personal information perceived
  within the culture?
• Do issues such as transportation, childcare or
  health affect adherence to care?

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Facilitating Readiness

• Transtheoretical Strategies with Caregivers
• Motivational Interviewing
• Problem Solving
• Building Communication Skills
• Emotional Regulation
• Coping Skills
• Didactic Approach

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Figure 1. Stages of Change Model as applied to
Disclosure Readiness
Session Task and Goals
Stages
Session tasks and goals
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DRM Intervention

• Psycho-educational groups using DRM curriculum to
  promote problem-solving skills
• Individual, interactive disclosure counseling to
  facilitate coping strategies
• Post-disclosure support groups or family therapy
  to facilitate psychological adjustment in the
  family

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Committees Findings

• Issue of targeting families with younger children
  regarding disclosure before they reach
  adolescence
• Youths cognitive and emotional development is a
  factor in their ability to comprehend the
  discussion about health
• Caregiver readiness is a pressing issue

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Committees Findings (cont.)

• Differing familial beliefs and perceptions about
  disclosure
• Assess family need
• Tailor interventions specific to each family
• Importance of consensus among providers

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Committees Suggestions

• Step 1 Identify a provider on the team who
  specializes in talking about disclosure and
  recommend that caregivers meet with them
• Step 2 Meet with child/youth for a mental health
  assessment to identify youths level of
  understanding
• Step 3 Assess caregiver level of readiness

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Committees Suggestions (cont.)

• Step 4 Introduce caregivers who have already
  disclosed, to those who are struggling with how
  and when to tell
• Step 5 Gather resources for caregivers and
  develop fact sheet on disclosure issues
• Step 6 Case conferencing with providers
  regarding families who are ready to disclose

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Committees Plan

• Disseminate findings to provider team
• Make recommendations tailored to familys
  particular needs
• Continue to engage families to begin disclosure
  awareness
• Implement pre-disclosure groups for both
  caregivers and youth using DRM curriculum
• Provide post-disclosure support groups, via
  referral to existing pre-adolescent and young
  adult groups
• Develop caregiver post-disclosure support group

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Case Illustration

• Jay is an 8 year old female of Hispanic descent
• Resides with her paternal grandparents, 12 year
  old biological brother, and foster sibs.
• Referred to psychologist by social worker for a
  mental health assessment for adjustment to
  current residence, and discussion of HIV
  diagnosis

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Case Illustration (cont.)

• Jay was seen for 5 sessions prior to moving out
  of state
• Initial session included rapport building, mental
  health assessment, and exploration of her
  understanding of her visit
• Jay believed she was taking medications for her
  health and had not been disclosed to
• Jay is bright, and recognized that another adult
  was taking the same meds as her, probably has the
  same problem as her
• Case Conference with Disclosure Committee

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Case Illustration (cont.)

• Caregiver was initially very anxious about
  disclosure (Begin Conscious Raising)
• Refused to talk about Jays medical problem
  while Jay was present
• Psycho-education was provided for caregiver
  (Role-playing/Planning)
• Collateral visits were scheduled for caregiver to
  help express her fears and concern (Anxiety
  Management/Stress Reduction)
• 4th 5th session, caregiver was ready to begin
  discussion for disclosure (Anxiety
  Management/Stress Reduction)

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Summary

• A myriad of psychological and social secondary
  risk factors have been associated with
  non-disclosure in families
• Non-disclosure can limit youths access to
  treatment options
• The DRM provides a means to assist providers and
  caregivers in broaching this difficult decision
• DRM can be implemented in either group or
  individual intervention settings

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Future Directions

• Track efficacy of DRM
• Implement a protocol for post-support groups to
  continue the on-going discussion regarding
  disclosure for youth and caregivers
• Encourage other clinic settings to consider
  implementing a model such as DRM, to facilitate
  disclosure

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Acknowledgements

• The Lower New York Consortium is funded by
  Ryan White Care Act
• Title III, Program grant no. 2H7600043-13-01
• Title IV grant, no. 5H12HA0019-12-00,
• Title IV Youth Network grant no.H12HA03805-01-00
• And
• NY State AIDS InstituteYouth Specilaized Center
  for Care and Youth Access Program grant no.
  C019100

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Questions and Answers
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Contact Information

• Jennifer Lewis, Psy.D
• Psychologist/Research Scientist
• [phone]
• jennifer.lewis_at_med.nyu.edu
• Nessa Obten, MSW
• Social Work Coordinator
• [phone]
• nessa.obten_at_med.nyu.edu
• Lisa Orban, Ph.D
• Psychologist/Research Scientist
• [phone]
• lisa.orban_at_med.nyu.edu
• Susan Abramowitz, Ph.D
• Co-Director Lower New York Consortium
• [phone]
• susan.abramowitz_at_med.nyu.edu