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Guideline Summary
Guideline Title
Disclosure of HIV to perinatally infected children and adolescents.
Bibliographic Source(s)
New York State Department of Health. Disclosure of HIV to perinatally infected children and adolescents. New York (NY): New York State Department of Health; 2009 Nov. 16 p. [14 references]
Guideline Status

This is the current release of the guideline.

Scope

Disease/Condition(s)

Human immunodeficiency virus (HIV) infection

Guideline Category
Counseling
Clinical Specialty
Allergy and Immunology
Family Practice
Infectious Diseases
Pediatrics
Psychology
Intended Users
Advanced Practice Nurses
Health Care Providers
Nurses
Physician Assistants
Physicians
Psychologists/Non-physician Behavioral Health Clinicians
Public Health Departments
Guideline Objective(s)

To provide guidelines for disclosure of human immunodeficiency virus (HIV) to perinatally infected children and adolescents

Target Population

Children and adolescents perinatally infected with human immunodeficiency virus (HIV)

Interventions and Practices Considered
  1. Assessing caregivers' readiness to disclose human immunodeficiency virus (HIV) diagnosis to their infected child
  2. Discussing with caregivers on an ongoing bases their concerns and benefits and risks of disclosing the diagnosis of HIV infection
  3. Developing an individualized disclosure plan
  4. Consultation or referral to a mental health professional if indicated
  5. Educating caregivers about using developmentally appropriate words and language
  6. Assessing child's coping skills, family support, and school/work functioning
  7. Post-disclosure assessment including adolescent's emotional well-being and functioning, mood and behavior
  8. Referring children for additional support if needed and providing ongoing support to children and their families
Major Outcomes Considered

Not stated

Methodology

Methods Used to Collect/Select the Evidence
Hand-searches of Published Literature (Primary Sources)
Hand-searches of Published Literature (Secondary Sources)
Searches of Electronic Databases
Description of Methods Used to Collect/Select the Evidence

Not stated

Number of Source Documents

Not stated

Methods Used to Assess the Quality and Strength of the Evidence
Expert Consensus (Committee)
Weighting According to a Rating Scheme (Scheme Given)
Rating Scheme for the Strength of the Evidence

Quality of Evidence for Recommendation

  1. One or more randomized trials with clinical outcomes and/or validated laboratory endpoints
  2. One or more well-designed, nonrandomized trials or observational cohort studies with long-term clinical outcomes
  3. Expert opinion
Methods Used to Analyze the Evidence
Review
Description of the Methods Used to Analyze the Evidence

Not stated

Methods Used to Formulate the Recommendations
Expert Consensus
Description of Methods Used to Formulate the Recommendations

AIDS Institute clinical guidelines are developed by distinguished committees of clinicians and others with extensive experience providing care to people with human immunodeficiency virus (HIV) infection. Committees* meet regularly to assess current recommendations and to write and update guidelines in accordance with newly emerging clinical and research developments.

The Committees* rely on evidence to the extent possible in formulating recommendations. When data from randomized clinical trials are not available, Committees rely on developing guidelines based on consensus, balancing the use of new information with sound clinical judgment that results in recommendations that are in the best interest of patients.

*Current committees include:

  • Medical Care Criteria Committee
  • Committee for the Care of Children and Adolescents with HIV Infection
  • Dental Standards of Care Committee
  • Mental Health Guidelines Committee
  • Committee for the Care of Women with HIV Infection
  • Committee for the Care of Substance Users with HIV Infection
  • Physician's Prevention Advisory Committee
  • Pharmacy Advisory Committee
Rating Scheme for the Strength of the Recommendations

Strength of Recommendation

  1. Strong recommendation for the statement
  2. Moderate recommendation for the statement
  3. Optional recommendation
Cost Analysis

A formal cost analysis was not performed and published cost analyses were not reviewed.

Method of Guideline Validation
External Peer Review
Description of Method of Guideline Validation

All guidelines developed by the Committee are externally peer reviewed by at least two experts in that particular area of patient care, which ensures depth and quality of the guidelines.

Recommendations

Major Recommendations

Definitions for the quality of the evidence (I, II, III) and strength of recommendation (A-C) are provided at the end of the "Major Recommendations" field.

Introduction

Clinicians and other members of the multidisciplinary team should collaborate with caregivers of human immunodeficiency virus (HIV)-infected children to disclose the diagnosis of HIV to the child in a developmentally appropriate manner. (AIII)

Key Point

Identification of one member of the multidisciplinary team who is trained as the "disclosure specialist" may facilitate the disclosure process. Many multidisciplinary teams include a psychologist or other mental health professional who may be uniquely suited to this role.

When Should the Disclosure Process Begin?

Ongoing dialogue between the clinical team and caregivers regarding disclosure of HIV diagnosis and health concepts should occur early in the patient's childhood. (AIII)

Key Point

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.

Collaborating with Families to Develop a Disclosure Plan

Clinicians or a member of the multidisciplinary healthcare team should:

  • Assess, early in the patient's childhood, the readiness of caregivers to disclose HIV diagnosis to their infected child (AIII)
  • Work with caregivers to develop a disclosure plan that meets the individualized needs of the family and the child (AIII)

Clinicians or a member of the multidisciplinary healthcare team should discuss the following with caregivers of HIV-infected children on an ongoing basis:

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

These discussions should be documented in the child's medical record.

When caregivers are reluctant to develop a disclosure plan, clinicians should ask about their concerns and attempt to develop a plan that addresses those concerns (see Section "Individualizing the Disclosure Plan" below). Referrals for counseling and additional assistance regarding disclosure issues may be necessary. (AIII)

Key Point

Caregivers who are HIV-infected can provide a positive model of healthy behaviors for their children by tending to their own health needs, such as medication adherence and medical appointments.

Individualizing the Disclosure Plan

Clinicians should work with caregivers to develop an individualized disclosure plan that addresses each family's unique circumstances (see Table 1 in the original guideline document). (AIII)

Disclosing Both Adoptive Status and HIV Diagnosis

Consultation with or referral to a mental health professional should be considered when working with caregivers who are disclosing both adoptive status and HIV diagnosis to the child. (BIII)

Effects of Disclosure on Siblings

Clinicians or a member of the healthcare team should collaborate with caregivers about the timing and effect of disclosure on both HIV-infected and non-HIV-infected siblings. (BIII)

Preparing for the Disclosure Discussion

Clinicians should educate caregivers about using developmentally appropriate words and language when disclosing HIV diagnosis to an infected child (see Table 2 in the original guideline document). (AIII)

Prior to disclosure, the clinician or a member of the healthcare team should assess the child's coping skills, family and peer support, school/work functioning, and interests. (AIII)

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

Considerations for Disclosure to Perinatally Infected Adolescents

Clinicians should:

  • Strive to ensure that, within a reasonable time frame, HIV-infected adolescents are fully informed of their HIV status (AIII)
  • Assess what adolescents understand about their health/illness and use that information to guide future discussions and the disclosure process (AIII)
  • Give adolescents the opportunity to discuss their health/illness and ask questions independent of caregivers (AIII)
  • Help the adolescent identify a supportive person to whom he/she can safely disclose and discuss HIV-related issues (BIII)
  • Incorporate discussions about disclosure and understanding of the illness into routine ongoing care (AIII)
  • Counsel about sexuality and risk-reduction behaviors (AIII)

Caregivers who object to disclosing an adolescent's HIV diagnosis should receive intensive support and services from the clinical team to address their concerns. (AIII)

Decisions regarding disclosure to adolescents with significant cognitive deficits need to be individualized. Specific strategies should be undertaken based on the developmental stage of the child (see Table 2 in the original guideline document). (AIII)

Post-Disclosure Assessments

The clinician or a member of the healthcare team should assess the child/adolescent's emotional well-being and functioning at every visit after disclosure of HIV diagnosis has occurred. The following areas of functioning should be assessed: (AIII)

  • School functioning
  • Family and peer relationships and support
  • Interests and activities
  • Mood and behavior

The clinician should work closely with caregivers to monitor the child for changes in functioning that may signify poor adjustment. (AIII)

Clinicians should refer children who demonstrate significant post-disclosure changes in behavior for additional support. (AIII)

The healthcare team should provide all disclosed HIV-infected children and their families with ongoing support through the adjustment of learning to live with HIV infection. (AIII)

Refer to Appendix A in the original guideline document for information on strategies to facilitate caregiver readiness to disclose.

Definitions:

Level of Evidence

  1. One or more randomized trials with clinical outcomes and/or validated laboratory endpoints
  2. One or more well-designed, nonrandomized trials or observational cohort studies with long-term clinical outcomes
  3. Expert opinion

Grade of Recommendation

  1. Strong recommendation for the statement
  2. Moderate recommendation for the statement
  3. Optional recommendation
Clinical Algorithm(s)

None provided

Evidence Supporting the Recommendations

Type of Evidence Supporting the Recommendations

The type of supporting evidence is classified for each recommendation (see "Major Recommendations").

Benefits/Harms of Implementing the Guideline Recommendations

Potential Benefits
  • Studies have shown that children who are able to discuss their illness with adults have fewer behavior problems and have improved social functioning, school performance, and adherence to medications.
  • Poor adjustment to a chronic illness can be a barrier to adherence and may cause conflict between the child, the caregiver, and the healthcare team. Developmentally appropriate and truthful explanations of the illness, validation of the child's concerns about the disease, clarifications of misconceptions, and ongoing support are the cornerstones for promoting a positive adjustment to living with human immunodeficiency virus (HIV) infection.
Potential Harms
  • Some studies have shown an increase in behavior problems and stress levels after disclosure.
  • Changes in behavior and school functioning may occur in these children and may be symptoms of depression.

Qualifying Statements

Qualifying Statements

When formulating guidelines for a disease as complex and fluid as human immunodeficiency virus/acquired immune deficiency syndrome (HIV/AIDS), it is impossible to anticipate every scenario. It is expected that in specific situations, there will be valid exceptions to the approaches offered in these guidelines and sound reason to deviate from the recommendations provided within.

Implementation of the Guideline

Description of Implementation Strategy

The AIDS Institute's Office of the Medical Director directly oversees the development, publication, dissemination and implementation of clinical practice guidelines, in collaboration with The Johns Hopkins University, Division of Infectious Diseases. These guidelines address the medical management of adults, adolescents and children with human immunodeficiency virus (HIV) infection; primary and secondary prevention in medical settings; and include informational brochures for care providers and the public.

The HIV Clinical Guidelines Program works with other programs in the AIDS Institute to promote adoption of guidelines. Clinicians, for example, are targeted through the Clinical Education Initiative (CEI) and the AIDS Education and Training Centers (AETC). The CEI provides tailored educational programming on site for health care providers on important topics in HIV care, including those addressed by the HIV Clinical Guidelines Program. The AETC provides conferences, grand rounds and other programs that cover topics contained in AIDS Institute guidelines.

Support service providers are targeted through the HIV Education and Training initiative which provides training on important HIV topics to non-physician health and human services providers. Education is carried out across the State as well as through video conferencing and audio conferencing.

The HIV Clinical Guidelines Program also works in a coordinated manner with the HIV Quality of Care Program to promote implementation of HIV guidelines in New York State. By developing quality indicators based on the guidelines, the AIDS Institute has created a mechanism for measurement of performance that allows providers and consumers to know to what extent specific guidelines have been implemented.

Finally, best practices booklets are developed through the HIV Clinical Guidelines Program. These contain practical solutions to common problems related to access, delivery or coordination of care, in an effort to ensure that HIV guidelines are implemented and that patients receive the highest level of HIV care possible.

Institute of Medicine (IOM) National Healthcare Quality Report Categories

IOM Care Need
Living with Illness
Staying Healthy
IOM Domain
Effectiveness
Patient-centeredness

Identifying Information and Availability

Bibliographic Source(s)
New York State Department of Health. Disclosure of HIV to perinatally infected children and adolescents. New York (NY): New York State Department of Health; 2009 Nov. 16 p. [14 references]
Adaptation

Not applicable: The guideline was not adapted from another source.

Date Released
2009 Nov
Guideline Developer(s)
New York State Department of Health - State/Local Government Agency [U.S.]
Source(s) of Funding

New York State Department of Health

Guideline Committee

Committee for the Care of Children and Adolescents with HIV Infection

Composition of Group That Authored the Guideline

Chair: Geoffrey A Weinberg, MD, University of Rochester School of Medicine and Dentistry, Rochester, New York

Vice-chair: Roberto Posada, MD, Mount Sinai Hospital, New York, New York

Members: Jacobo Abadi, MD, Jacobi Medical Center, Bronx, New York; Aracelis D Fernandez, MD, FAAP, Columbia University, Harlem Hospital Center, New York, New York; Marc D Foca, MD, Children's Hospital of New York, New York, New York; Mindy A Golatt, RN, MA, CPNP, MPH, Jacobi Medical Center, Bronx, New York; Alice S Myerson, CPNP, ANP, MSN, Montefiore Medical Center, Bronx, New York; Natalie M Neu, MD, Columbia University, New York, New York; Yiu Kee Warren Ng, MD, New York Presbyterian Hospital, Columbia University Medical Center, New York, New York; Joseph A Puccio, MD, FAAP, Stony Brook University Hospital, Stony Brook, New York; Michael G Rosenberg, MD, PhD, Jacobi Medical Center, Bronx, New York; Pauline A Thomas, MD, New Jersey Medical School, Newark, New Jersey; Anthony Vavasis, MD, Callen-Lorde Community Health Center, New York, New York; Barbara L Warren, BSN, MPH, PNP, New York State Department of Health AIDS Institute, Albany, New York

Adolescents with HIV-Infection Subcommittee Members: Jeffrey M Birnbaum, MD, MPH (AIDS Institute Staff Liaison), SUNY Downstate Medical Center, Brooklyn, New York; Mindy A Golatt, RN, MA, CPNP, MPH, Jacobi Medical Center, Bronx, New York; Charles J Gonzalez, MD (AIDS Institute Staff Physician), New York State Department of Health AIDS Institute, New York, New York; Alice S Myerson, CPNP, ANP, MSN, Montefiore Medical Center, Bronx, New York; Joseph A Puccio, MD, FAAP, Stony Brook University Hospital, Stony Brook, New York; Anthony Vavasis, MD, Callen-Lorde Community Health Center, New York, New York

Liaison: Vicki B Peters, MD, Liaison to the New York City Department of Health and Mental Hygiene, New York, New York

AIDS Institute Staff Liaison: Jeffrey M Birnbaum, MD, MPH, SUNY Downstate Medical Center, Brooklyn, New York

AIDS Institute Staff Physician: Charles J Gonzalez, MD, New York State Department of Health AIDS Institute, New York, New York

Principal Contributors: Alice S Myerson, CPNP, ANP, MSN, Montefiore Medical Center, Bronx; Yiu Kee Warren Ng, MD, New York Presbyterian Hospital, Columbia University Medical Center, New York

Financial Disclosures/Conflicts of Interest

Not stated

Guideline Status

This is the current release of the guideline.

Guideline Availability

Electronic copies: Available from the New York State Department of Health AIDS Institute Web site External Web Site Policy.

Availability of Companion Documents

None available

Patient Resources

None available

NGC Status

This NGC summary was completed by ECRI Institute on April 20, 2010.

Copyright Statement

This NGC summary is based on the original guideline, which is copyrighted by the guideline developer. See the New York State Department of Health AIDS Institute Web site  External Web Site Policyfor terms of use.

Disclaimer

NGC Disclaimer

The National Guideline Clearinghouse™ (NGC) does not develop, produce, approve, or endorse the guidelines represented on this site.

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