HIV Disclosure

Original slides by Ms. Yuitiang Durier and Prof. Kulkanya Chokephaibulkit, MD

Division of Pediatrics Infectious Diseases, Department of Medicine
Faculty of Medicine Siriraj Hospital, Mahidol University, Bangkok, Thailand
 Outline
• HIV disclosure to children and adolescents
− Expected benefits
− Four steps of disclosure model
− Case study
• HIV disclosure to adults
− Expected benefits
− Managing new diagnoses
− Aims of counselling in HIV
Disclosure in Children and
Adolescents
American Academy of Pediatrics
Recommendations,1999
• Families should be counseled regarding
disclosure to children about HIV
• This should take place periodically throughout
treatment
• The timing and format of disclosure shall be
appropriate to the individual patient
• Disclosure should be encouraged to take place
school-aged children
Disclosure in Bangkok, Thailand
• 80% of children >7 years had not been told
about their HIV diagnosis
• Main reasons for not disclosing:
− The child was too young
− Concern for causing psychological harm
− Worried the child could not keep a secret
− Guilt / fear of being hated by the child
• 70% of caregivers who had not yet
disclosed said they had wanted to, but were
still reluctant

Boon-yasidhi V., et.al, Journal of the Medical Association of Thailand.

 Expected Benefits of Disclosure
Children
• Can take better care of themselves when they know
• Improve adherence to medications
• Increases self-esteem, builds trust
• Facilitates more truthful and easier communications
with their caregivers
• May be more willing to ask for help with
education/school and social support needs

Source: Pediatric HIV Disclosure Manual, Thailand MOPH-US CDC Collaboration, 2010.
 Expected Benefits of Disclosure
Family / caregiver
• Improves healthy communication with child
• Pushes more honest psychological adjustments
to living with HIV/AIDS
• Can openly work towards reducing
misconceptions about HIV/AIDS, address
discrimination

Source: Pediatric HIV Disclosure Manual, Thailand MOPH-US CDC Collaboration, 2010.
Factors Involved in Disclosure
Healthcare
Caregiver
Provider

Child

School / Community
 Development of Pediatric HIV
Disclosure Model in Thailand
Why was there a need?
• Increasing number of perinatally HIV infected
children were surviving into adolescence
• As children age, HIV disclosure has become a
critical clinical issue
• Disclosure is a difficult process for which
providers and families need formal guidance
- Caregivers and children need support, while providers
have limited experience with disclosure
 Circumstances where Disclosure
Should be Considered
• When children begin to suspect their diagnosis
– History of poor health, questions about medicines
• When children unintentionally learn about their HIV
status and were unprepared
– Address anger, distrust, misconceptions
• Children do not want to take medication anymore
• Adolescents become interested in relationships
+/- sex
• Caregivers’ preference – stressful to keep the
secret
Source: Pediatric HIV Disclosure Manual , Thailand MOPH-US CDC Collaboration, 2010.
 The Disclosure Model in Thailand
Step 1: Identify children who meet program criteria
and propose disclosure counseling to caregivers
Re-assess within 6
months
Meet program criteria Don’t meet program
criteria

Step 2: Assess the readiness of caregivers and children

and prepare them for disclosure

Re-assess within 6
months
Caregivers/Children Caregivers/Children
ready not ready Group activity and
education

Caregivers disclose the diagnosis to

the children themselves
Step 3: Disclose to children their HIV status
in a counseling session

Step 4: Monitor and evaluate

 The Disclosure Model
Step 1: Identify children who meet program criteria and
propose disclosure counseling to caregivers
Re-assess within 6
months
Meet program Don’t meet program
criteria criteria

Objectives:
Step 2: Assess the readiness of caretakers and
• children
To identify children
and prepare who meet
them for disclosure program criteria
Child:HIV status not yet disclosed, age ≥7 years
Re-assess
Not severely developmentally disabled, within
psychotic,
6 months
suicidal or with acute medical conditions
Caretakers/Children Caretakers/Children
Caregiver: Without severe medical or psychiatric conditions
ready not ready Group activity and
• To offer the disclosure counseling services to education
caregivers
Caretakers disclose the diagnosis to
the children themselves
Step 3: Disclose to children their
HIV status in a counseling session

Step 4: Monitor and evaluate

 The Disclosure Model
Step 1: Identify children who meet program criteria
and propose disclosure counseling to caregivers
Re-assess within 6
months
Meet program Don’t meet program
criteria criteria

Step 2: Assess the readiness of caregivers and

children and prepare them for disclosure

Re-assess within
6 months
Objectives:
Caretakers/Children Caretakers/Children
ready
• To assess caregivers’ fears and concerns Group activity and
not ready
education
• To assess caregivers’ knowledge/attitude about HIV
• To explore caregivers’ and child’s readiness
• To help caregivers withCaretakers disclose the diagnosis to
disclosure-related
the children themselves
decision-
making
Step 3: Disclose to children their
HIV •status
Toinprepare the
a counseling caregivers to communicate with the child
session

Step 4: Monitor and evaluate

 The Disclosure Model
Step 1: Identify children who meet program criteria and
propose disclosure counseling to caregivers
Re-assess within 6
months
Objectives:
Meet program Don’t meet program
• criteria
Assess the child’s knowledge
criteria about his/her illness
• Disclose HIV status and provide HIV-related health education
Step 2: Assess the readiness of caretakers and
• Allow the
children andchild tothem
prepare express feelings and ask questions
for disclosure

• Encourage communication between the child and caregiver

Re-assess within
• Provide support and make follow-up6 months
appointment
Caretakers/Children Caretakers/Children
ready not ready Group activity and
education

Caretakers disclose the diagnosis to

the children themselves
Step 3: Disclose to children their HIV status
in a counseling session

Step 4: Monitor and evaluate

 The Disclosure Model
Step 1: Identify children who meet program criteria and
propose disclosure counseling to caregivers
Re-assess within 6
months
Meet program Don’t meet program
criteria criteria

Step 2: Assess the readiness of caretakers and

children and prepare them for disclosure
Objectives:
• Assess the impact of disclosure Re-assess within 6
months
• Assess the child’s understanding about his/her
Caretakers/Children Caretakers/Children
diagnosis
ready not ready Group activity and
• Continue to support the child and caregiver in the post-
education
disclosure period
Caretakers disclose the diagnosis to
the children themselves
Step 3: Disclose to children their
HIV status in a counseling session

Step 4: Monitor and evaluate

 Phases of Disclosure (1)
• Partial disclosure
− Giving information about the illness and disease
without telling them that they have “HIV/AIDS”
− Need in situations when the child/family are not
ready for full disclosure
− The goal is to let the children know that they
have a type of chronic illness and require life-
long treatment with good adherence to stay
healthy

Source: Pediatric HIV Disclosure Manual, Thailand MOPH-US CDC Collaboration, 2010
 Phases of Disclosure (2)
• Full disclosure
− Giving information about his/her HIV status,
information about what it means to have HIV, the
future prognosis, plans for treatment
− Allow for open discussion about the child’s
questions and concerns

Source: Pediatric HIV Disclosure Manual, Thailand MOPH-US CDC Collaboration, 2010
 A Study on
Development of a Diagnosis Disclosure Model for
Perinatally HIV-infected children in Thailand

• Disclosure was done for 186 children

• Mean age at disclosure was 11.7 years
• Pre-disclosure:
− Most caregivers had discussed the illness with their
child without disclosing the HIV diagnosis
− 18% of caregivers thought that their child might have
already known their HIV status, but had not discussed
this with their child

Boon-yasidhi V. et.al., AIDS Care - Psychological and Socio-Medical Aspects of AIDS/HIV, 2012.
 Child’s Reports of Changes in Behaviors
Better
at 2 Months Post-Disclosure Unchanged
Worse
100%

80%
57
77 68

60%

40%
56
43
44
20%

5 5 6
0%
Adherence Paying Attention in Obedience to
Class Cargivers

Boon-yasidhi V. et.al., AIDS Care - Psychological and Socio-Medical Aspects of AIDS/HIV, 2012.
 Child’s Reports of Changes in Emotions
at 2 Months Post-Disclosure Less
Unchanged
More
100%

44 48 43
80%

60%

40%
67 60 63

20%

12 14 11
0%
Irritable Fear/Anxeity Shame about Illness

Boon-yasidhi V. et.al., AIDS Care - Psychological and Socio-Medical Aspects of AIDS/HIV, 2012.
 Caregivers’ Reports of their Own Changes
at 2 Months Post-Disclosure Better
Unchanged
Worse
100%

80% 40 38
46

60%

40%
66 62
57

20%

0% 1 2 2
Relationship with the Feeling Happy Confidence in Caring the
Child Child
Boon-yasidhi V. et.al., AIDS Care - Psychological and Socio-Medical Aspects of AIDS/HIV, 2012.
 Case study
“Thandar” is the mother of “Long-long”, a 11-year-
old boy who has HIV. His father died while his
mother was pregnant.
Long-long is healthy, talkative, and generally a
happy child. However, when he upset with
something, he will keep silent and does not share
his feelings.
They are living with the family of Thandar’s sister.
Thandar is the main person to take care of Long-
long – she gives him his medicines and takes him
to the clinic.
Long-long has begun complaining about taking his
medicines. He has been told that he needs to take
them because he has an allergic disease.
Long-long was watching a TV show about
HIV/AIDS, and saw that the HIV medicines were
the same colors as the ones he is taking. He told
his mother that he was afraid that he had the same
disease as what he saw on TV.
Thandar wants to tell him the truth but she does not
know how to do it. She is worried about the impact
of telling her son about his diagnosis.
Please answer the following questions:
• What are Thandar’s concerns?
• Do you think the child is ready for
disclosure? Why or why not?
• Do you think the mother is ready to
disclose to Long-long? Why or why not?
• How would you help Thandar and
Long-long prepare for disclosure?
HIV Disclosure for Adults
Principles of Disclosure for Adults
• Focus on the individual patient’s needs and
social circumstances
– Family and friends may not have prior experience
with HIV or accurate knowledge about transmission
risks
– Potential for self-imposed isolation
– Provider/clinic/peer counseling critical to filling in
knowledge gaps and providing support
• Greater importance of personal choice
– High risk of negative consequences due to stigma
and discrimination on employment, living situation
 Aims of HIV and Disclsoure
Counseling
• Address HIV knowledge gaps
– Basic HIV and treatment education
• Encourage positive prevention
– Help them to define high-risk behaviors
– Discuss options for risk-reduction
– Support the individual to achieve and sustain behavior
change
 Psychosocial support needs
• Being diagnosed with HIV can create negative
emotions including anger, denial, depression,
anxiety, shock, and fear of death
• Provide progressively more detailed HIV
information as patients are ready to receive
advice
• They may need help to communicate with
partners, family
 Benefits of Disclosure (1)
• Disclosure to patients helps them to develop a
better understanding of their HIV disease, and
enables them to access essential services that
help protect their own health as well as avoid
infecting others
• Disclosure to others is associated with better
treatment adherence, both as a result of not
having to hide medications and through
reduction of isolation and secrecy
WHO, HIV and Adolescent s: Guidance for HIV Testing and Counselling and Care for adolescents living
with HIV, 2013.
 Benefits of Disclosure (2)
• Disclosure to sexual partners can
faciliate more open negotiation of condom
use and partner HIV testing, both can
prevent further transmission of HIV

WHO, HIV and Adolescent s: Guidance for HIV Testing and Counselling and Care for adolescents living
with HIV, 2013.
 Managing New Diagnoses
WHO has defined five key components that must
be respected and adhered to by all HIV testing and
counseling services
• Consent
• Confidentiality
• Counseling
• Correct test results
• Connection/linkage to prevention, care and
treatment
 After Testing
• Negative test result
– Discuss prevention
– Discuss partner testing and concerns for
HIV risk
• Positive test result
– Provide support and link to care
– Discuss prevention
– Discuss partner testing and disclosure
 Disclosure: Sexual partners
• Sharing one’s HIV status should be a personal
choice
• Some countries have laws requiring patients to
disclose to partners, but this may not be enforced
• Methods of disclosure will vary by context and
relationship
– Some may prefer to inform others with the help of a
third party, such as a doctor or trained counselor
• UNAIDS and WHO encourage “ethical partner
counselling”
– Based on the informed consent of the patient
Disclosure: Family members, children
• Disclosure can create opportunities for more
open discussion and promote acceptance
• Decisions to disclose to children depend on their
age/maturity and the immediate need in the
family to faciliate clinical support
– E.g., helping with transportation, hospitalization,
medicines
• UNAIDS and WHO encourage “beneficial
disclosure” that gives individuals control over if,
how and when to tell others about their HIV-
positive status
 Summary
Children and Adolescents
• Caregivers should be
encouraged to begin the
disclosure process in early
school-age children
− Multiple counselling
interactions
− Collaborative effort
Adults
• Disclosure helps protect
patients own health,
improve adherence and
avoid infection of others
• Healthcare providers can
support them with
information and
encouragement
• Partner and family
counselling should be done
with the informed consent of
the patient
Thank You