Module 10

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

Explain the meaning of disclosure

Describe the benefits of disclosure
Describe barriers and fears to disclosure
Explain ways of addressing the barriers and fears
Discuss reasons and considerations for HIV Disclosure to
Adolescents

Module 10 4
 Introduction

• Disclosure of HIV sero-status to children and

adolescents is a sensitive issue.
• Children want to learn their HIV status from their
parent/caregiver.
• Adolescents may want to hear their HIV status
from a health worker
• Disclosing HIV test results to children and
adolescents can lead to many positive outcomes
for them

Module 10 5
 Brainstorm (5 min)

What is meant by disclosure?

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

• Disclosure may also involve the sharing of

caregiver’s & other family members’ 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

• Processing of Feedback (15 mins)

Module 10 8
 Benefits of Disclosure (1)

• Allows children and adolescents to cope better with HIV

• Increases self esteem & confidence among children &
adolescents
• Helps children and adolescents adhere to treatment
• Helps adolescents make informed safe-sex decisions
when contemplating sexual intercourse with a partner
• Children/adolescents & caregivers psychologically adjust
to living with HIV/AIDS

Module 10 9
 Benefits of Disclosure (2)

• Works towards reducing stigma, discrimination, and

misconceptions/myths regarding HIV/AIDS
• Family-centered disclosure builds trust in relationships and
improves healthy communication between parents & children

NB. children who are disclosed to tend to adhere better to

treatment

Module 10 10
By: Luciano Felix, Brazil. Module 10 11
 Brain storm (5mins)

What are the disadvantages of non-disclosure

among children and adolescents

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)

• Get to know their HIV status from wrong sources.

• Loss of confidence and trust in parents
• Poor child parent relationship and communication
• Confusion due to unclear messages
• Lack of care
• Anxiety due to fear of involuntary disclosure

Module 10 14
 Barriers to disclosure
Group Activity (30 min)

Discuss barriers to disclosure in each of the following

categories:
• Health providers
• Parent / Caregiver
• Community and environment
• The child

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

Many adolescents living with HIV struggle with disclosure of their

HIV status, in part because they are frequently left on their own to
navigate the complexities of living with HIV as a young person

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)

It’s too painful to face my little girl and

start discussing HIV (28 yr old Mother on
disclosing to her 10 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

• Parents - because they can distort or support

information given by health care providers
• Trusted extended family members
• Health care provider for emotional support and
clarification on information given.

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.

• Enlist the support of parents and care takers for

disclosure

• Work hand in hand with care takers not in

isolation to disclose to children

Module 10 29
 Unit 2
The Process Of Disclosure

Module 10 30
 Unit 2: Learning objectives

Describe the factors to consider when developing a Disclosure

Plan
Describe the process/steps of disclosure

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)

• Experience sharing on the disclosure approaches and

process

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
child (use various age-appropriate
techniques/mediums)
• Create a sense of safety for the
child
• Involve the parent(s)/caregivers
• Address fears of loss and
abandonment
• Always provide information to
the child in an age-appropriate
manner
• Directly address silence/secrecy
• Encourage openness in the
disclosure/treatment process
• Explain why counseling is so
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)

• Disclosure process may take time & occur after several

sessions
• Explore what the child & caregivers know about HIV, then move
from the “known to the unknown”
• May need to address barriers (stigma, cultural beliefs, fears
etc.) to disclosure
• Caregivers need to be equipped with disclosure skills.

Module 10 39
 Before Disclosure (2)

• Assure the caregiver of shared confidentiality

• Assure caregivers that the disclosure process has multiple
benefits & that the child should understand his/her current
status
• Assure child and caregivers that you will be available to work
with them as a team for ongoing support
• When ready, always encourage parents/caregivers to initiate
the process of disclosure with their child.

Module 10 40
 During disclosure (1)

• Assess the child’ or adolescent’s knowledge

• Find out whether child knows why he/she comes
to the clinic.
• Find out what he/she was told
• Find out who the adolescent wants to disclose to

Module 10 41
 During Disclosure (2)

• Be ready to deal with denial, distortion, fear, outbursts, pain and

tears from the child and caregivers; allow clients to move
through this process at their own pace
• Allow children and caregivers to share feelings openly; provide
them with a safe place to cry & express bottled up emotions
• Encourage the expression of difficult feelings (bitterness, grief,
pain)

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)

• Assess emergent psychological symptoms regularly, particularly

during and post-disclosure process

• Offer your continued support and availability; discuss the importance

of having continued counseling sessions on a regular basis

• Predict and plan for difficult situations involving the post-disclosure

period
Module 10 45
 Post disclosure (2)

• Identify children/caregivers who may need intensive & ongoing

therapy & mental health services
• Identify support & treatment services as referral options for
children & caregivers: psychiatric services, group therapy, social
worker, spiritual intervention & other supports (e.g. food and
clothing)

Module 10 46
Disclosure Role play (1 hour)

• Below 5 years
• 5 – 10 years
• Adolescents

Module 10 47
 Post disclosure (3)

• Continuous support from qualified healthcare personnel; able

to use family-centered approach
• Strong treatment alliance/relationship between healthcare
personnel & children/families
• Encourages involvement in support groups (reduces stigma
and victimization)

Module 10 48
 Post disclosure (4)

• Address the child/adolescent’s self-perception/esteem & their

outlook on life
• Encourage child/adolescent to draw on inner-strength and
support from his/her caregivers/community/ friends to help
bring about change in self-perception & outlook on life
• Explore talents in children like song, dance, and drama which
can be tapped into to enhance the child’s self esteem.
• Give child current information on HIV treatment in a manner
which he/she can understand & use.

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

• Encourage child/adolescent to always ask questions and

discuss his/her concerns/fears

• Explore the child/adolescent’s hopes, ambitions and plans for

the future using questions addressing wishes

Module 10 50
 Unit 4
Follow up support -
Facilitating resilience and
coping mechanisms
Module 10 51
 Brainstorm (5mins)

• What tangible type of support can be provided to

children/adolescents after disclosure?

Module 10 52
 Support to the
child/adolescent (1)

• Encourage interaction with

others
• Refer/Link the child/adolescent
to support groups
• Support positive living
• Share experiences/testimonies

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