Transcript Pediatric HIV Care & Treatment in Uganda

Module I: Essential Background
for Paediatric HIV Counselling
In this module, we will discuss:
Unit 1: Child Growth and Development
Unit 2: Skills for Counselling Children
Unit 3: Disclosure
Unit 4: Overview of the Counselling Process
Unit 5: Ethical and Legal Issues in Counselling
Children
Module I: Essential Background
Unit 1: Child Growth and
Development
By the end of this unit, trainees should be able to:
•Discuss stages of child growth and development
•Explain methods to assess developmental delays
•Recognize different developmental milestones
Why is Development Assessment and
Monitoring Important in Children?
• “Development” refers to maturing of the brain and
central nervous system
• Delayed development or loss of milestones may be
the first sign of HIV infection for infants and children
• Knowing development stage can help guide
counselling (e.g. when to disclose HIV status)
Understanding normal development helps us to
identify abnormal development
Child Development Domains
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Physical (motor skills)
Cognitive (reasoning)
Emotional (temperament)
Social skills
Sexual/Gender
6 Stages of Development
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Infancy (birth to 12 months)
Toddler (12-24 months)
Early Childhood (2-5 years)
Mid-childhood (6-9 yrs)
Early adolescence (10-13 yrs)
Adolescence (14-18 yrs)
Activity:
Characteristics of Developmental Stages
Infancy (birth to 12 mo)
• Physical development
– Very rapid development, can move hands, feet, head
– After birth, needs to be held, cuddled, stimulated
• Cognitive development
– Learns about language from hearing people talk, becomes
interested when it involves them
• Emotional/Social development
– Responds to a warm, loving environment
• Sex/Gender development
– Not aware of sex/gender in his/her life
Toddler (12-24 mo)
• Physical development
– Child becomes mobile and new opportunities for
exploration and exercise open up
• Cognitive development
– Rapid brain development, ability to talk and remember
– Understands symbols, imitates, imagines and pretends.
• Emotional/Social development
– Feel uneasy when separated from loved ones. Prefer to do
things on their own– setting the stage for conflict
• Sex/Gender development
– Describes him/herself and others as a boy or girl
Early Childhood (2-5 years)
• Physical development
– Gains muscle coordination, can dress/feed self
– Starts to throw, catch and run. Enjoy pens, pencils, paints
• Cognitive development
– Able to understand complex ideas such as time, letters, counting
– Begins to speak and understand
• Emotional/Social development
– Starts to display range of emotions, including anger, jealousy
– Imitates others, seeks attention– play becomes more inventive
• Sex/Gender development
– Curious about body parts, examine their own bodies and those
of their peers when adults are not around
Mid-childhood (6-9 yrs)
• Physical development
– Growth slows, motor skills improve, lots of energy
• Cognitive development
– Longer attention spans, likes complex challenges, learning,
discovering for themselves, masters skills through practice
• Emotional/Social development
– Form close same-sex friendships, guided by behaviour and
beliefs of peer group, likes to be acknowledged
• Sex/Gender development
– Increased self-awareness about anatomical differences,
curiosity about sexual activities
Early Adolescence (10-13 yrs)
• Physical development
– Rapid growth– may feel awkward and lack coordination.
Signs of puberty begin, hormonal changes start.
• Cognitive development
– Develop abstract thinking skills; begin to think about future
life roles and able to postpone gratification
• Emotional/Social development
– Increasingly self-conscious about their bodies and how they
look. Strong desire to conform to peer group
• Sex/Gender development
– Sex organs assume adult form; maturity may be early or late
Adolescence (14-18 yrs)
• Physical
– Development into final stages of adulthood.
• Cognitive development
– Think like adults, may try risky behaviours, mood swings
– Rewards are so pleasurable, may ignore consequences
• Emotional/Social development
– Mood swings common; heavily influenced by peers
– Quest for identity and same-sex friendships are important
• Sex/Gender development
– Many begin romantic/sexual relationships
How Can We Assess Development?
• To do proper developmental assessment, refer
to the developmental stages and reflect on
what occurs at each stage.
• At each opportunity, ASSESS:
– Cognitive, motor, language, and social skills
– Discuss the infant’s milestones with the caregiver
– Verify appropriate development for age
– Use a developmental check list or observe the
infant during the examination
How Can We Assess Development?
• Ask the caregiver:
– What is your child able
to do now?
– How do you compare
the development of
this child with your
other children?
– At what age did your
child first
smile/crawl/walk/talk?
Developmental Red Flags!
AGE
WARNING SIGNS
6 weeks
No eye contact, no smile, poor suck, floppy /
excessive head lag
6 months
Cannot reach for objects with both hands,
floppy, no response to sound, poor social
response to people
9 months
Unable to sit unsupported , no clear hand
preference, can not make a fist, persistence of
primitive reflexes
1 year
Unable to bear weight on legs
18 months
Not walking, no pincer grip, not able to form
single words with meaning
What Age is Each Infant?
A- sits without support
B- just started
walking
C- crawling
D- can lift chest off
the table
Growth Monitoring
• Growth can be the most sensitive clinical
indication of HIV infection in an infant
– Exposed infants are at high risk for poor growth
– Failure to thrive affects as many as 50% of HIVinfected infants and children
– HIV infected infants who are failing to thrive have
a significantly increased risk of mortality
– Using Growth Curves is an easy and systematic
way to follow changes in growth over time for an
individual
Growth Curve
REVIEW
Child Growth and Development
What are the 5 domains of child
development?
What are the 6 stages of growth and
development?
What questions can a counsellor ask to
assess development?
What are 3 red flags that counsellors
should watch for in infants?
Module I: Essential Background
Unit 2: Skills for Counselling Children
By the end of this unit, participants should be able to:
•Describe attributes of an effective paediatric counsellor
•Discuss methods of communicating with children
•Identify job aids to support communication with children
What are the Goals of Child
Counselling?
• Counselling helps children and caregivers to:
– understand/clarify their views
– reach goals through well informed choices
• Counselling should enable the child to:
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express thoughts, emotions, and behaviours
feel good about themselves
accept their limitations and strengths
change behaviour
minimize negative consequences
adapt to the external environment. (e.g. home, school,
families etc.)
What are the Qualities of an Effective
Child Counsellor?
What works?
What doesn’t work
• Get down to the child’s
eye level
• Speak softly, smile
• Be honest
• Identify & respect emotions
(i.e. crying/anger is OK)
• Give the child choices
• Talk about things that
interest the child
• Respect their privacy!
• Don’t say ‘be a big boy’
• Don’t make the child feel
like a ‘baby’
• Don’t pity the child
• Don’t compare the child to
others
Counsellor Roles
• The counsellor should be like a __________.
– Parent
– Teacher
– Aunt or uncle
– Peer
– Any other role you can think of?
Counsellor Roles:
Transference
• NONE of the roles are fit for counsellors!
• If a counsellor finds themselves behaving like
a parent, teacher, aunt, uncle, peer…
TIME TO VISIT OUR SUPERVISORS!
And discuss
Transference
Counter-transference
For Effective Communication
LISTEN
with your:
EYES
EARS
HEART
Effective Communication
Share your good practices:
• How are you an active listener?
• How do you show interest in the caregiver?
• How do you build confidence in the caregiver to
continue to engage with you?
• How do you recognize or praise the caregiver?
• How do you give practical suggestions?
• How do you address the caregivers questions and
concerns?
Effective Communication–
Counselling Multiple Clients
• Caregivers, Children and Adolescents each
have different needs for the session
• Throughout the course, the different needs of
each of these groups will be addressed.
• At times, there may be a need to speak to the
caregiver or child alone
Effective Communication–
Counselling Multiple Clients
• When you separate the caregiver and the child
during the session, this is called the Vacation
Technique
– When managed well, this is a key strategy for
meeting each client’s individual needs
– Helps to ensure that each client’s needs are met
– Allows for appropriate decision making
Job Aid Demonstration:
Communicating with Caregivers
• For caregivers of
children who are HIV+
or at risk
• Guide on a range of
issues from testing,
treatment, adherence,
addressing stigma,
healthy living
practices, adolescents
Techniques to Support Expression
• Empty chair: imagining that an absent person
is involved in the session
• Enactment: client(s) asked to show/act what
happens if a problem arises
• Commenting: Sensing client(s) mood/ reaction
to issues. Process feelings and reactions seen.
• Externalizing: Separating the problem from the
person– used to normalize situations which the
client(s) think are abnormal
Effective Communication–Children
Children’s natural language is play
• More than just recreation
• Children make sense of experiences
through play
• Play is vital to healthy development
• Play allows the child to explore and
“master” their world
Video: Counselling Skills
Select tools appropriate for the child’s
age and level of development.
Discussion:
• What counselling skills do you see in the video?
• How did the counsellor use drawing as a tool to
facilitate communication with the child?
• Many clinics do not have toys like those seen
here– what can be used at your facility?
Effective Communication—Children
Environment
• Child-friendly décor
• Small chair
• Colourful pictures
• Private room without
distractions-- helps child
to feel secure
Focus on Play
• Books and stories
• Drawing
• Role Playing (puppets)
• Song, dance, drama
• Imaginary Journeys
• Storytelling
• Letter writing
Barriers to Communicating
with Children
• Failure to communicate directly
– assumption that parents/guardians will handle
communication with the child
• Assuming that the child is too small to
understand what is happening
• Not sharing information freely
– assumption that certain information might harm
the child or that the child is too weak to hear it
Encourage the Child
to Tell His/Her Story
• Offer drawing materials and other media
• Allow children to express worries and anxieties
through play, drawing, songs, etc
• Ask the child, “Do you have any stories to share
with me?”
• If the child is reluctant, offer your own story to
start the conversation
What examples of storytelling do you remember
from the video we watched earlier?
Understanding the Child’s Problems
• Identify past experiences and behaviours
which had negative consequences
• Child is helped to explore and weigh options
for change
– advantages/disadvantages of available choices
– weighs risks, gains, losses, costs, consequences
• Child is helped to rehearse and experiment
change through counselling
• Play can help to identify barriers
Job Aid Demonstration:
Communication with Children
• An illustrated story
about a girl who
struggles with illness
• Addresses issues of
stigma, adherence,
caregiver/child
relationship
• For children aged 5-12
years
Communicating with Adolescents
• It is important that adolescents be consulted
in all treatment decisions
• Communication can be challenging– the
adolescent is undergoing rapid physical,
psychological and social changes
• Talk to them directly and ask about concerns
related to health, social issues, how well they
understand the choices to be made, who they
want to involve in decision making.
Activity: Communicating with
Adolescents
• Group 1 and 2: Suggest a few tips to use
during the first visit with an adolescent and
their family.
• Group 3 and 4: What changes could you make
in your clinic to make it "adolescent friendly?”
• Group 5 and 6: What items are critical to ask
in the psychosocial history of a 16-year-old
adolescent?
1st Visit with
Adolescent and Family
• Assuring confidentiality
• Involving the family unless there are particular
contraindications
• Using good listening techniques
• Being aware of the hidden agenda
• Including a psychosocial history
• Making sure the adolescent understands the
diagnosis and treatment plan.
Adolescent-Friendly Clinic
• Having appropriate materials in the waiting
room and offices for teens
• Setting up special times for teens to come to
the clinic
• Making sure the exam table does not face the
door and have privacy curtains available
• Allowing more time for the first visit
• Discussing with the adolescent his/her
preference for involving parents/caretakers.
Psychosocial History, 16-yr-old
• Home situation, school issues, activities
• Substance use including alcohol, cigarettes
and other drug use
• Sexuality issues including relationships, types
of sexual activity, sexual orientation,
contraception, STIs.
• Sexual or physical abuse particularly in teens
with higher risk profile or problems
What is Critical in
Communicating with Adolescents?
• Being non-judgmental
• Not commanding and prescriptive
• Open for discussion– not imposing
adult values
• Focused on person sitting in front
of you– never compare children
• Avoid making empty promises
• Free from blame and avoid
interrupting the adolescent
Job Aid Introduction:
Communicating with Adolescents
• Written by HIV+ youth
• Guide for adolescents,
caregivers and those
working with HIV+
youth
• Helps the reader
understand challenges
and positive responses
to life as an HIV+ teen
Video and Discussion
“LIVING WITH SLIM”
• How did watching this video make you feel?
• What issues were these children facing?
• How can we support the children as they face
significant challenges in their lives?
REVIEW
Skills for Counselling Children
What are the attributes of an effective
paediatric counsellor?
How can counsellors use crayons, figures and
puppets to facilitate communication with
children during a counselling session?
What are 3 job aids that can be used to
facilitate communication when counselling
children?
Homework: GREAT NEWS!
• YOU have been invited for a 2-minute meeting
with the President!
• This is a key opportunity to encourage him to
increase funding for paediatric HIV.
– What is the impact of paediatric HIV on children,
caregivers and society?
– How can paediatric testing, treatment and care
programmes make a difference?
Recap: GREAT NEWS!
• YOU have been invited for a 2-minute meeting
with the President!
• This is a key opportunity to encourage him to
increase funding for paediatric HIV.
– What is the impact of paediatric HIV on children,
caregivers and society?
– How can paediatric testing, treatment and care
programmes make a difference?
Module I: Essential Background
Unit 3: Disclosure
By the end of this unit, participants should be able to:
•Discuss the benefits of disclosure
•Identify the barriers to disclosure their clients may face
•Explain how to assist clients through the disclosure process
Discussion: Disclosure
• When we talk about
“disclosure”, what do
we mean?
• Why is disclosure
important:
– For the child?
– For the caregiver?
– For the community?
What is the Right Age for Disclosure?
• Discussions about
disclosure may start as
early as 5 years, but it
needs to take place in a
culturally-sensitive
manner with the
consent of the caregiver.
• Disclosure should be
complete by age 10.
Benefits of Disclosure
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Allows children to cope better with HIV
Increase self esteem for children & adolescents
Helps children adhere to treatment
Children & caregivers psychologically adjust to living
with HIV and AIDS
• Helps reduce stigma & discrimination
• Family-centred disclosure builds trust
Disclosure is a complex issue—
we will discuss it more throughout the week
Discussion: Disclosure
What are the reasons that
parents/guardians may fear to tell their
children that they are infected with
HIV?
How to Deal with Barriers
• Thoughts, feelings, self-perception, fears related
to their HIV status need to be addressed.
• Assess child’s knowledge regarding HIV; correct
misconceptions & provide current information.
• Address parent/caregivers’ perceptions,
thoughts, feelings, fears regarding HIV;
particularly related to their family/community
system.
Who Should be Involved in the
Disclosure Process?
PARENT/GUARDIAN
(CARE GIVER)
Paediatric Health Care
Worker
CHILD
Preparing for Disclosure
• Gather a thorough history– take time to get to
know the child
• Assess current state of child and caregiver
• Understand both the child and caregiver’s
perspectives about being HIV infected
• Assess current family/social/community
support system
Preparing for Disclosure
• Assess barriers & reasons for delayed
disclosure
• Assure caregiver of shared confidentiality
• Remind the caregiver of the benefits of
disclosure
• Always encourage caregivers to initiate
the process of disclosure with their child.
During Disclosure
• Assess the child’s knowledge
– Find out if child knows why she comes to the clinic
– Find out what he/she was told about her illness
• Allow for free expression of feelings
– denial, distortion, fear, outbursts, pain & tears
– allow clients to move through at their own pace
– provide them with a safe place to cry
– Encourage the expression of difficult feelings
(bitterness, grief & pain)
Post-Disclosure
• Discuss pain and distress after disclosure
(otherwise pain may become internalized)
• Assess psychological symptoms regularly
• Offer continued support and availability;
discuss importance of continued counselling
• Predict and plan for difficult situations
involving the post-disclosure period
• Refer appropriately
Support for the Caregiver
• Encourage sharing their
worries/concerns with a close
friend
• Give hope, build self esteem
• Offer on-going counselling
support
• Encourage joining a support
group
Alija Video Clip
Video Debrief:
– How does the counsellor in this clip encourage the
caregiver’s involvement?
– What were the caregiver’s fears about disclosing
to the child?
– Why did Alija feel confused about his HIV status?
– Who should be involved in the disclosure process
for children and why?
– How does the counsellor use the pen/paper to
encourage Alija to express himself? Does it work?
Flipchart—
Components of Pages
Flipchart—
Components of Pages
Flipchart—
Components of Pages
Flipchart—
Components of Pages
Disclosure Role Play
Form groups of 3 (triads) and assign roles as the
counsellor, the child and the caregiver
Scenario:
• Edward is 9 years old and has had HIV since birth. He
is asking questions about his status. His caregiver
(Janet) does not believe it is a good idea to disclose
to him.
How could you use Lukia’s Story, the flipchart
or some of the techniques that we have
discussed during your role play?
REVIEW
Disclosure
What are the benefits of disclosure?
What are some of the barriers to disclosure
with children?
What are two ways that a counsellor can
support clients to disclose to the child and/or
significant others in the family?
Module I: Essential Background
Unit 4: Overview of the
Counselling Process
By the end of this unit, participants should be able to:
•Describe the “5As” approach to counselling
•List the counselling events in HIV counselling for children
Several Types of Counselling Events
• Feeding and HIV Testing for Exposed Infants
• HIV Counselling and Testing (HCT)
• Preparing for the Start of ARVs and Supporting
Adherence
• Living with HIV (and Crisis Intevention)
5 As of Counselling
ASSESS
Who is the client
(s) (age,
developmental
level, relationship
to caregiver)?
What is child’s
HIV risk and
psycho-social
situation?
When have they
been seen
before?
Why have they
come today?
ADVISE
Provide
judgment free,
relevant, correct
and simple
information
Use language
that the client
understands
Use tools to help
you: flipchart,
Lukia Story,
caregiver
booklet,
adolescent
booklet
AGREE
Have the
client repeat
the key
information
that they
heard
Have the
client decide
on
appropriate
next steps
ASSIST
Help client plan their
next steps according to
their needs by
assisting with:
• Reduction of infant
transmission
through infant
feeding
• Reduction of
adolescent SRH
risk
• Planning for
disclosure
• Planning to abstain
How will the
session be
conducted?
• Planning for
adherence
ARRANGE
Review plans
made in the
session.
Provide client with
referrals
Arrange follow up
appointments
Remind clients to
keep appointments
Remind clients to
take all medication
given
Provide IEC
resources
Job Aid– Observation Tool
• Introducing the Counselling Observation Tool–
Application of counselling skills
REVIEW
The Counselling Process
What are the 4 counselling events that will be
discussed in this training?
What are the 5As of counselling?
What can be found on EACH page of the
flipchart?
Where is the table of contents in the flipchart?
Module I: Essential Background
Unit 5: Ethical and Legal Issues in
Counselling Children
By the end of this unit, participants should be able to:
•Explain Uganda’s HIV counselling and testing guidelines
•Discuss legal and ethical issues surrounding paediatric HIV
Discussion: Concerns
• What concerns do you have about
legal/ethical issues in counselling children?
Uganda HCT Guidelines
How much do you know about Uganda’s
counselling and testing guidelines for
children?
QUICK QUIZ
Check Your Answers
Now, read this excerpt from Uganda’s National
HCT guidelines.
– After reading, go back and correct your quiz
When Can a Counsellor Break
Confidentiality?
– Client consents in writing for the HCW to
share his/her status with other people
– If the child or adult with a disability cannot
give consent to share test results
– When ordered by a court of law
– When there is concern or evidence that a
child may harm himself or someone else
– Cases of sexual abuse when you are
obligated to report
What is Child Sexual Abuse?
• Abuse occurs when an adult forces or coerces
a child into sexual activity (touching, oralgenital contact, penetration with
fingers/object)
• Inappropriate sexual language, watching child
in a sexual way, child pornography
• Abuse between peers can occur through use
of power or coercion
• Often the abuser is someone that the child
knows
Child Sexual Abuse
• Sexual abuse is one of the most challenging
issues that we may face during counselling
• Child sexual abuse does occur in our
communities and is a serious problem
• Counsellors have an obligation to ensure the
child’s safety in cases of abuse
• Other agencies (police, psychologists) may
need to be involved, but always with the
agreement of the child and/or caregiver
REVIEW
Ethical and Legal Issues
At what age can a child agree to his/her own
test without a caregiver’s consent?
Is there a time when confidentiality can be
broken? If so, when?
What is child sexual abuse?
Key Messages from this Module
• Children grow and develop at different rates,
but understanding what is typical at a certain
age helps us communicate at the right level.
• Counselling younger children can be facilitated
through play: books, storytelling,
puppets/figures, drawing and writing.
• Counsellors play a key role in supporting
disclosure of HIV status to the child and
others.
Key Messages (2)
• Legally, any child 12 years and over can
consent to his own HIV test. A guardian does
not need to be present.
• Counsellors are required to keep
confidentiality at all times with few
exceptions.
• The counselling process includes the 5As:
assess, advise, agree, assist and arrange.
• MoH tools are an important component of
communicating with children and caregivers.