Presentation_Perez Building Partnerships to Provide Nurturing Care
1. Empowering Health Workers and
Caregivers to Deliver Therapeutic
ECD Care at Home
Renee Perez, Early Childhood Development and Disability Specialist
2. Quick Quiz
90% of brain development
happens before
A. Age 5
B. Age 16
C. Age 21
A human brain has the greatest
density of brain cells
connectors (synapses) at
A. Age 3
B. Age 9
C. Age 21
3. Survive & Thrive
• The under-five mortality rate
has fallen by more than half
since 1990
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• The global burden of disability
has not improved
significantly.
• Total number of children with
developmental disabilities
under 5 years was 53 million
in 1990 compared with 52.9
million in 2016. Lancet, 2018
United Nations Inter-agency Group for Child Mortality Estimation
(UN IGME) 2018
4. Global Need
• Insufficient global
commitment to children
with disabilities surviving
childhood
• Services often nonexistent
or piecemeal; do not
address full set of needs of
young children with
disabilities and their
families. 4
Guyana TES Training
Credit: MCSP
9. The Nurturing Care Framework
The health sector is uniquely
positioned to spearhead multi-
sectoral collaborations that
support families and reach very
young children.
10. Therapeutic Early Stimulation
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Social
Emotional
• Combines what we know about
brain science with evidenced-
based practices from pediatric
therapies.
• Adds a boost of therapy to high-
quality interactions
11. End User: Parents/Caregivers
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• Practice high dosage and frequency at
home.
• Combine services for children and
support for families for greatest impact.
• Introduce highly visual, simple to follow
activities.
• Ensure psychosocial well-being of
parents.
13. Therapies: Occupational Therapy
13
• Goal: Participate in everyday
activities.
• Proprioception (body
awareness) and vestibular
(movement) processing
• Develop tactile perception
and auditory discrimination.
14. Therapies: Physical Therapy
14
• Goal: Reduce pain, restore
function, and prevent further
disability.
• Stretching, massages, and
other exercises increase
motor function.
• Encourage overall physical
and motor development.
19. Increased Risk of Stress and Depression
19
Parents of children diagnosed
with disabilities often
experience poorer psychological
well being and elevated levels
of stress
Sources of Distress:
• learning of the child’s disability
• addressing child’s medical or therapeutic
needs
• restricted social or employment opportunities
• financial burden due to specialized therapies
or care
• stigma or changes in relationships with family
or friends
• feeling isolated and without adequate
supports
Source: Experiences Impacting the Quality of Life of Mothers of Children With Autism and Intellectual
Disability
20. Common Reactions to Stress
20
• Physical (e.g. muscular aches,
tiredness, nausea, fast heartbeat,
sleep disturbances)
• Mental (e.g. difficulties concentrating,
mental avoidance)
• Emotional (e.g. anxiety, sadness,
guilt, anger, shame)
• Spiritual (e.g. life seems pointless)
• Behavioral (e.g. alcohol abuse,
avoidance of activities)
• Interpersonal (e.g. being withdrawn)
21. Maternal Depression Can Undermine the Development of
Young Children
21Source: Harvard Center for the Developing Child.
• Disruptions to brain architecture
and stress response system
• Lower cognitive, emotional and
behavioral scores
• Increased risk for later mental
health problems
22. Psychosocial Support Groups
22
What is psychosocial support?
• Psychological needs: internal, emotional, and thought
processes, feelings, and reactions.
• Social needs: relationships, family, community
networks, social values, and cultural practices.
23. Preparing Support Group Facilitators
• Training Learning Approach
• Experiential training takes
participants through each of the
12 sessions in the PSS Manual
• Most sessions have art-based
prompts to spur conversation
• Open forums/guest speakers
• Manual Content
• What is stress?
• Techniques to manage stress
• Why support groups are
important/what is psychosocial
support?
• How to create support groups
• Step-by-step session delivery
guide
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24. Psychosocial Support Group Sessions
Theme Session Prompt
Making connections
Session 1: Introductions
Draw something you are
grateful for
Session 2: Love
Draw someone who is
important to you
Session 3: Open forum
Caregivers talk about their
challenges and successes
Receiving help and
helping others
Session 4: Support to cope
with stress (Guest Speaker)
Invite a counselor to talk
about how to recognize
stress, manage stress and
what external support is
available
At the end of the session,
gather feedback from the
group and make
adjustments.
Session 5: My support
network
Draw the people you can
count on for help
Session 6: Helping others
Draw something you did to
help someone
Theme Session Prompt
Exploring how we feel
Session 7: Open Forum
Caregivers talk about their
challenges and successes.
Session 8: Feelings pie chart
Explore how you feel through
colors.
At the end of the session,
gather feedback from the
group and make adjustments.
Session 9: Learning from
others (Guest Speaker)
Invite an adult with a
disability or a caregiver of an
older child with a disability to
talk about their journey.
My life
Session 10: Open Forum
Caregivers talk about their
challenges and successes.
Session 11: Tree of life Draw the tree of life.
Session 12: Caring for
ourselves
Think about how you take
care of yourself. Write down
five things that you do. Write
down five things you need to
do.
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25. For more information, please visit
www.mcsprogram.org
This presentation was made possible by the generous support of the American people through the United States Agency for
International Development (USAID), under the terms of the Cooperative Agreement AID-OAA-A-14-00028. The contents are the
responsibility of the authors and do not necessarily reflect the views of USAID or the United States Government.
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Editor's Notes
-The burden of disability is highest in low and middle income countries
Lancet: Global Research on Developmental Disabilities Collaborators Developmental disabilities among children younger than 5 years in 195 countries and territories, 1990–2016: a systematic analysis for the Global Burden of Disease Study 2016. Lancet Glob Health. 2018; (published online Aug 29.) http://dx.doi.org/10.1016/S2214-109X(18)30309-7
For these children and their families, the consequences are significant.
Developmental delays often emerge in the first year or are present at birth, and without appropriate intervention, they worsen during early childhood and remain through the course of a lifetime.
Timely intervention is critical as the first years of life are marked by a period rapid brain growth
The pathways for vision, hearing, language and cognitive function all peak in the first year of life.
By age 3, the brain has the greatest density of brain cell connectors
This is the most opportune moment for action because it is in these years that the brain is most sensitive to interventions and change
Many health service providers have the opportunity to deliver timely interventions, improving the trajectories for children with disabilities.
What do we mean by timely intervention? Intervention that begins at birth and continues throughout the first years of life into pre-primary
By the end of this program year, we will have rolled out Therapeutic Early Stimulation trainings in 6 countries
The training cascade is similar for both programs – except we directly implemented under Zika
All levels of providers can engage in this work (mention other positions titles)
Supportive supervision and mentorship is key in the success of the program as there are continual gains in knowledge
Adaptable package can be used by teachers/social welfare officers, etc.
Reminder to mentioned the G20 summit announement for increased investment to push ECD forward. This has contributed to the momentum behind the NCF.
Early stimulation is all about high quality interactions between babies and their caregivers. These interactions literally build brain architecture
TES combines what we know about early stimulation and integrates exercises from four pediatric therapies.
Caregivers learn how to interact with their young children AND do simple physical therapy exercises, or speech therapy exercises
TES is delivered as a training to different cadres who have touchpoints with parents/caregivers.
Given all the support children with disabilities require, it is essential to empower parents with tools to encourage their children’s development.
We also have a PSS training to address caregiver well-being.
In Early Childhood Development, we’re looking to encourage growth in four domains: language, motor, cognitive, and social emotional development
Children with Congenital Zika Syndrome are likely to have severe and profound delays in all of these domains
Children whose CNS are significantly impacted have very limited understand of the world. For instance, they my have no awareness of themselves as a separate entity in their environment. Everything is very confusing and upsetting because limited information is coming in, and that information is distorted and not processed in a typical manner.
The first therapy that we train on is Occupational Therapy
Close your eyes: Do you have an awareness or a sense of where your nose is?
This is a process of the nervous system where feedback between muscles, tendons, and the brain.
This is something that children with disabilities lack, but can be increased through simple exercises such as squeezes along joints
The next is physical therapy. Exercises aim to restore physical function, reduce pain, and prevent further disability.
Simple exercises here involve stretching muscles and strengthening muscles.
Speech language therapy aim to improve communication and swallowing.
Since a fully fledged system of language will likely not be possible, children learn to use signs or items around them to communicate. For instance, for a child with severe disabilities, touching a spoon could mean “I’m hungry!”
Finally we have orientation and mobility. The goal is for children to travel safely as independently as possible. If children have vision loss or hearing loss, children learn how to maximize the senses around them to understand where they are in time and space.
If you are walking on something soft, you’re probably on the grass and this is more or less safe. If you start walking and you feel it get very hard and bumpy, you are probably on a road and are unsafe.
Since this is ultimately for caregivers, activities are highly visual, use simple language, and make use of common everyday household items. They also can be easily done throughout everyday routines.
Materials required for these activities are simple and we train our participants to make sue of common household items that are around them
Studies of children of depressed mothers show patterns of brain activity (as observed on an electroencephalogram, or EEG) that are similar to those found in adults with depression.26 These patterns are more pervasive when the mother is both depressed and withdrawn from her infant27
At the end of the training, participants created action plans to develop or re-start support groups