Académique Documents
Professionnel Documents
Culture Documents
Disclosure of
HIV status in
Children and
Adolescents
Module 10 1
Module Objectives
❖Explain disclosure of HIV status in children and
adolescents.
❖Explain the process of disclosure to children
❖Describe post disclosure support for children
❖Describe follow up support, facilitating resilience
and coping after disclosure of HIV test results.
❖Demonstrate knowledge and skills of disclosure
of HIV status in children and adolescents
Module 10 2
Unit 1
Introduction to Disclosure
of HIV Status in Children and
Adolescents
Module 10 3
Unit 1: Learning Objectives
Module 10 4
Introduction
Module 10 5
Brainstorm (5 min)
Module 10 6
Disclosure of HIV status to
Children and Adolescents
• Disclosure is the process of informing a child or
adolescent of her/his HIV status
Module 10 7
Benefits of Disclosure Buzz Groups
(15 min)
• In 4 buzz groups ask participants to discuss the benefits of
disclosure for the: (5 mins)
1. Child/ Adolescent
2. Parent/Caregiver,
3. Health Worker and
4. Community
Module 10 8
Benefits of Disclosure (1)
Module 10 9
Benefits of Disclosure (2)
Module 10 10
By: Luciano Felix, Brazil. Module 10 11
Brain storm (5mins)
Module 10 12
Disadvantages of Non Disclosure (1)
• Lack of social support
• The experience of rejection
• Depression
• Develop self stigma for looking sick
• Develop inappropriate actions e.g. refuse to take
drugs
• Burden of carrying a secret
Module 10 13
Disadvantages of Non Disclosure (2)
Module 10 14
Barriers to disclosure
Group Activity (30 min)
Module 10 15
Barriers to Disclosure
• Health care provider: lack of skills, hesitant to
address disclosure & challenge secrecy
• Caregiver: fear of isolation, belief that child is too
sick/weak/young/small to receive the necessary
information
• Possible language barriers
• Social-cultural: stigma, discrimination, taboos and
religion
• Individual: self blame, anxiety, cognitive capacity &
developmental stage, too sick
Module 10 16
HIV Status Disclosure Among
Adolescents
Module 10 17
Reasons for HIV Status Disclosure
Among Adolescents
• Provides them with opportunity to make informed decisions
about their own health care and well being
• May improve adherence
• May prevent sexually active adolescents from unknowingly
exposing others to HIV
• Guides Health workers on counselling and communicating
about sexuality and risk reduction
• Facilitates and helps development of self management skills in
preparation for eventual transition to adult care
Module 10 18
Considerations for HIV Status
Disclosure Among Adolescents (1)
• Work towards ensuring 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 to
address their concerns
• Assess what the adolescent already knows about their
health/illness to guide future discussions
Module 10 19
Considerations for HIV Status
Disclosure Among Adolescents (2)
• Provide opportunities for adolescent to discuss healthcare
issues with health worker independent of caregiver
• 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
Module 10 20
Reasons Parent/Guardian fears to
Disclose
• Self-blame/guilt
• Concern about breach of confidentiality
• Do not want to “hurt” the child
• Concern about children’s reactions e.g. suicidal
tendencies etc.
Module 10 21
“Telling my son about my infection
and his HIV status is like stripping
naked in front of him and letting him
know about my sexual life” (38 yr old
Mum on Disclosing to her 11 yr son)
“If my husband doesn’t know “There is no value added in
about my status, How do I disclosing to my daughter her
begin telling my son” (36 yr old status, Let her continue having a
Mum about disclosing to her 12 yr normal childhood” 37 yr Mum on
old, who is living with a step father)
disclosing to her 11 yr old daughter)
Module 10 22
Brainstorm (5mins)
How can you deal with disclosure barriers
and fears?
Module 10 23
How to Deal with Barriers and Fears
• Build skills for healthcare providers & carers
• Health care provider thoughts, feelings, self-perception, fears
related to their HIV status need to be addressed
• Assess child/ adolescent’s knowledge regarding HIV; correct
misconceptions & provide current information
• Address parent/caregivers’ perceptions, thoughts, feelings,
fears regarding HIV; particularly related to their
family/community systems
Module 10 24
VIDEO CLIP : ALIJA
(Video Processing: 20 min)
Processing Guideline
• Identify the gaps in the disclosure process that caused Alija to
doubt his sero status
• Who should be involved in the disclosure process for children
and why?
• What role should health care providers play in the disclosure
process?
• What lessons have you learnt from the video clip?
Module 10 25
Video Clip: Gaps in the Disclosure
Process
• The family (biological parents and the step
mother) were not involved the disclosure
process.
• Alija was given different messages by different
people, at different times
Module 10 26
Who Should be Involved in the Disclosure
Process for Children/Adolescents
Module 10 27
Disclosure Triangle
PARENT/GUARDIAN CHILD/
(CARE GIVER) ADOLESCENT
HEALTH CARE
WORKER
Module 10 28
Role of health care providers in
the disclosure process.
• Facilitate the process of disclosure.
Module 10 29
Unit 2
The Process Of Disclosure
Module 10 30
Unit 2: Learning objectives
Module 10 31
Factors to Consider when
Developing a Disclosure Plan (1)
• Child’s/Adolescent’s age, cognitive ability, and developmental
understanding of status and implications of results
• What child/adolescent has already been told and what
child/adolescent already knows about medications or health
facility visits
• Clinical status of child/adolescent
• Other disclosures that may need to be made (e.g. Parental
HIV diagnosis, or Adoptive Status)
Module 10 32
Factors to Consider when
Developing a Disclosure Plan
• Caregivers’ thoughts about disclosure
• Cultural influences
• Family/social circumstances
• Anticipated response of child/ adolescent when learning
diagnosis
• Effect of living with HIV and non-infected siblings
• Types of support available to the child/adolescent and
family once disclosure occurs (e.g. counseling, peer
support groups
Module 10 33
Brainstorming (5min)
Module 10 34
Disclosure Process
• Disclosure of HIV status to children and
adolescent is a process but not a one time event.
• It could be caretaker initiated, Child/adolescent or
supported by heath care provider
• The steps below provide guidance to health care
providers for effective disclosure
Module 10 35
Preparing Child/Adolescent and care givers
for disclosure (1)
• Take time just to get to know the • Always provide information to
child (use various age-appropriate the child in an age-appropriate
techniques/mediums) manner
• Create a sense of safety for the • Directly address silence/secrecy
child • Encourage openness in the
• Involve the parent(s)/caregivers disclosure/treatment process
• Address fears of loss and • Explain why counseling is so
abandonment important as a supplement to
medical treatment
Module 10 36
Preparing Child/Adolescent and care givers
for disclosure (2)
• Gather a thorough history (presenting problems, supports,
medical/family/ social/behavioral/emotional/educational/ treatment
history)
• Assess current emergent psychological/ psychosocial symptoms
(depression, anxiety, suicidal ideation)
• Understand child’s and caregivers perspectives of current
problems/child’s illness (What do you think the problem is?)
• Assess caregivers’/child’s motivation to engage in treatment
• Assess current family/social/community support system
Module 10 37
Preparing Child/Adolescent and care givers
for disclosure (3)
• Assess current barriers and reasons for delayed
disclosure (fears, stigma)
• Assess caregiver’s willingness to take central role in
treatment process
• Assess child’s/caregivers’ knowledge base of HIV/AIDS
• Explore what the child & caregivers know about HIV,
then move from the “known to the unknown”
• When ready, always encourage parents/caregivers to
initiate the process of disclosure with their
child/adolescent.
Module 10 38
Before Disclosure (1)
Module 10 39
Before Disclosure (2)
Module 10 40
During disclosure (1)
Module 10 41
During Disclosure (2)
Module 10 42
Unit 3
Post Disclosure support
Module 10 43
Unit 3: Learning Objectives
Discuss the post disclosure process
Demonstrate skills in disclosing to children and
adolescents
Module 10 44
Post disclosure (1)
• Discuss the pain and distress after disclosure (otherwise pain will
become internalized)
Module 10 46
Disclosure Role play (1 hour)
• Below 5 years
• 5 – 10 years
• Adolescents
Module 10 47
Post disclosure (3)
Module 10 48
Post disclosure (4)
Module 10 49
Post disclosure (5)
• Educate child/adolescent on: positive living e.g. personal
hygiene, sexuality, self awareness and stress management to
help child lead a healthy lifestyle
Module 10 50
Unit 4
Follow up support -
Facilitating resilience and
coping mechanisms
Module 10 51
Brainstorm (5mins)
Module 10 52
Support to the
child/adolescent (1)
Module 10 53
Support to the child/adolescent (2)
• Provide information/materials on
disclosure.
• Network with spiritual leaders
• Encourage adherence to treatment
• Continue with supportive counseling
• Encourage drama/music/dance
• Provide play therapy
• Life skills training
Module 10 54
Support to the parent/caregiver
• Encourage sharing the burden with a close friend
• Give hope and build self esteem
• Offer on-going counselling support
• Encourage to join parent/caregiver support group
Module 10 55
Module 10 56