1 Importance of Caregiver Training and Education in a Chinese OrphanageApril Chu and Connie Liu Pacific University School of Occupational Therapy CONNIE

2 Overview China adventuresLiterature on children with disabilities in orphanages China project CONNIE

3 China Adventures Presented to MOT program Visited hospitalsFuling Social Welfare Institute Olivia’s Place Clinical reasoning workshop CONNIE Sandra (OT) and Chris (Special Education); Tara and Kate (OHSU) Presentation - community in orphanages Hospitals - variety of hospitals; how OT/therapy is like in hospitals Describe the resources for rehab FSWI Inventory; fixed and built walkers, wheelchairs; feeding education; positioning; play Clinical reasoning Three days for current therapists and physicians

4 Development of Children with Disabilities in OrphanagesLimited opportunities for movement Lack of care and education Increased physical, cognitive and social impairments Longer stays in orphanages CONNIE Placement Over 153 million orphans around the world Approximately 600,000 in China 98% have a disability Natural disasters; armed conflicts; disabilities; democratic policies Children without disabilities more likely to be adopted Longer stay in orphanages causes more detriments Limited opportunities for movement Cribs, chairs, awkward positions Detriments Likely see different caregiver Different caregivers - first 2 years of life Inconsistency of care Lack of training Negative health issues; decreased quality of care Lack of education to care for children with disabilities Negative effects Physically, cognitively, socially Stigmas associated with disability Impact on self-esteem, confidence, loneliness

5 Development of Children & Adolescents with Disabilities in OrphanagesCognitive development 1, 2, 5 increased inattention and overactivity sensory processing disorder Caregivers’ impact on emotional needs 3, 6, 8, 10, 14, 22, 23 comfortable and trust the caregiver physical comfort social-emotional support distant relationships Adolescents 6-to-18 years 11, 19 emotional, social, attention, behavioral life skills attachment mental health barriers 4 low expectations lack of knowledge lack of skills APRIL Mental health Higher levels of depression and loneliness Caregiver’s perspective - comfortable and trust Physical comfort cuddling and holding Social-emotional support interactions with caregivers; motivate interactions with environment Distant relationships emotional stress of caregivers; ratio of caregiver-children; burnout; dissatisfaction

6 Interventions for Children with Disabilities in OrphanagesInterventions in orphanages structural changes and staff training 2, 7, 10, 14, 18, 20 quality of care relationships with the child attitude of caregiver adolescent transitioning 4, 15, 21 activities of daily living and instrumental activities of daily living skills participation in real life tasks social supports Difficulties for intervention 2, 4, 10, 13, 20 economic location rooted beliefs of children with disabilities sustainability of interventions lack of knowledge for adolescent transitioning APRIL Structural changes and training Improvement of development and care given Sensitive, responsive, respectful interactions Increase quality of care; relationship of child; social behaviors and attitudes; caregiver satisfaction Development Decrease language and cognitive development gap Increase social-emotional abilities Decreased anxiety and depression/withdrawal Peer relationships - communication and social skills Adolescent training Increase development and gain life skills Find appropriate resources; gain knowledge; self-advocate Social supports Positive relationship with caregiver Increase coping skills, social interaction, problem solve, assertiveness Adolescents Lack of knowledge - vocational training, education, and self-advocacy skills Fewer opportunities - peer interactions; age appropriate developmental stages; identity and sexuality issues

7 Chinese Culture and DisabilityImportance on family grandparents are typically caregivers Negative perception of disability 12 punishment for parental sins; unbalanced diet; emotional disturbance shameful and kept from society stigmas vary type of disability; socioeconomic status; region of living (rural vs. city) physical disability vs. psychiatric disability 9 Lack of access to healthcare and education 10 CONNIE Parents work and grandparents take care of children Personal experience Physical disability seen more positively Lack of access to healthcare: Geographic location Financial reasons Culturally-chinese medicine vs. western medicine

9 Fuling Social Welfare InstituteMission: provide the best care for the children living at the orphanage ensure children who are eligible for adoption are adopted and those who are not are appropriately cared for Vision: children with disabilities are perceived as having the capacity to function in society Approximately 60 children living at the orphanage ages of 10 days to 18 years old Located on top of hill outside the city Common conditions: Autism spectrum disorder Cerebral palsy Cleft palate Intellectual impairment & Down’s syndrome CONNIE Use of translators FKI is the overarching organization for the orphanage, Fuling Social Welfare Institute

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13 Benefits of Improving Caregiver Education on Quality of Care for AdolescentsPerform self-care activities independently as possible Mobility through the community Identify necessary community resources Increase self-esteem and decrease distress Coping skills for life events Problem solving and life skills Increase communication and social skills (positive peer relationships) APRIL Increase self-esteem to better cope with life events problem solving, communication skills

15 Overview of DisabilityWhat is disability disability is found all over the world environmental impacts Disability in China views improved over the years attentional and emotional needs What children with disabilities are able to do live fulfilling and meaningful lives CONNIE What is disability Environmental - safe and clean water, food, Disability in China Improved over years Attention to emotional needs Lack of resources and education - negative effect on education, physical, cognitive, social development Engage in everyday activities; sports; education; have job

17 Hygiene Personal Hygiene Dressing/Clothing laundry Hand and Foot careTeeth Brushing Bedding Care CONNIE How often Importance How to perform care Personal hygiene Bathing Girls menstrual period Washing hair Dressing Clothing for weather Diaper changing Hand and foot care Nail care Fungal infection (athlete’s foot) Handwashing

21 Equipment Managing Equipment Child Safety with Equipment/Tools/ToysCleaning Equipment/Tools/Toys APRIL Managing equipment Check once a month Notify supervisor Safety Age appropriate Broken toys Cleaning How often How to

22 Cribs Crib Measurement Crib MaintenanceWhen to Transition Out of a Crib Crib Safety Placing Baby in Crib Sudden Infant Death Syndrome Checklist for Cribs APRIL Crib measurement Bars width of soda can Rails Maintenance Wash sheets Wipe down cribs Transition 2 years or inches Safety No clutter Properly built Stable No cords, ropes, ties Placement One baby per crib On back; facing up SIDS Leading cause of death under 1 year How it can happen Old Cribs New Cribs

23 Checklists Cribs Feeding Handling and Positioning HygieneManaging Equipment Play CONNIE Checklist for caregivers for different areas mentioned in the Caregivers Manual and Resource Guide. There are daily and monthly checklists for different areas provided in the manual

24 Grading Rubric Feeding Handling and Positioning DressingHand and Foot Care Handwashing Teeth Brushing Bedding CONNIE Created for manager of orphanage staff to keep track of skills of caregivers. Will be used monthly and give a better idea of areas to review

25 Future of the Project Carry-over at the orphanagecompetency checks: surveys filled out by the caregivers and FKI board members videos and pictures of the caregivers performing skills video conferences Potential Training Topics family wound care for the children community resources for adolescents integrating into the community strategies to increase independent living and life skills for adolescents CONNIE Impact of caregiver training Impact on development and quality of life of children with disabilities Community transition for adolescents Acquire basic skills for independence Occupational therapy aids Independence, physical, social-emotional, cognitive ability to participate in meaningful occupations Role in caregiver training and education for increased quality of care Ensure follow-up Used in orphanages throughout China

26 Conclusion Overcome cultural stigmas against children with disabilities Understand the negative impact of children with disabilities being raised in an orphanage Enhance common knowledge about caring for children with disabilities Promoting independence and self-sufficiency of children with disabilities Caregiver’s Manual and Resource Guide will educate existing caregivers with clear examples, pictures, and instructions in caring for children with disabilities APRIL

27 THANK YOU Sandra Rogers and Christine Macfarlane Pacific UniversityFuling Kids International and Fuling Social Welfare Institute Family Friends CONNIE

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29 Questions?