Presentation_Perez - Building Partnerships to provide nurturing care
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CORE Group Global Health Practitioner Conference 2019
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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 3 • 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
- 6. Congenital Zika SyndromeAnomalies • Congenital microcephaly (+-) • Intracranial calcifications • Cerebral atrophy • Abnormal cortical formation (polymicrogyria, lissencephaly) • Corpus callosum abnormalities • Fetal brain disruption sequence (collapsed skull, prominent occiput, scalp folds) Consequences • Congenital contractures (e.g., clubfoot, arthrogryposis, and/or congenital hip dysplasia) • Congenital deafness • Problems with swallowing • Convulsions • Extreme irritability • Vision problems
- 7. ECD Zika Presence • Barbados • El Salvador • Guyana • Grenada • St. Lucia • Trinidad and Tobago 7
- 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 10 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 11 • 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.
- 12. Congenital Zika Syndrome and Development Guyana TES Training Credit: MCSP
- 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.
- 15. Therapies: Speech/Language Therapy 15 • Goal: Improve communication and swallowing. • Pre-intentional behavior to intentional communication
- 16. Therapies: Orientation and Mobility 16 • Goal: Safe and independent travel • Body awareness, directions, environmental sounds, mobility skills
- 17. Activity Format 17 Social Emotional • Highly visual • Simple language • Common household items • Easily integrate into daily activities Motor
- 18. Materials 18
- 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 23
- 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. 24
- 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. facebook.com/MCSPglobal twitter.com/MCSPglobal
Notes de l'éditeur
- -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
- Baker‐Ericzén, Brookman‐Frazee, & Stahmer, 2005; Tomanik, Harris, & Hawkins, 2004). Bailey, Golden, Roberts, & Ford, 2007; Emerson, 2007).
- 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