Cerebral palsy : Perceptions Survey report
Presentation Bird Eye view Summary findings How we did it Background Study Objectives Actionable areas ? ……..
definition ce·re·bral pal·sy ˌ ser ə br ə l ˈ pôlz ē / noun a condition marked by impaired muscle coordination (spastic paralysis) and/or other disabilities, typically caused by damage to the brain before or at birth.
Research Objectives To understand and highlight perceptions and issues surrounding the lives of children with Cerebral Palsy and their caregivers
This study ( by Breakthrough Consulting, in partnership with Orion Foundation) was motivated by the twin aspect of increasing prevalence of cerebral palsy in Kenya unfortunately being coupled with increased stigmatization among children with disabilities and their families denying them basics of health care, education, socialization and recognition
Quantitative study sample Location : Nairobi >>> South C, Kangemi, Donholm, Buru Buru, Ruiru, Mathare, Umoja Respondents: Parents, mainly mothers of children with CP (purposive sampling) ; Non CP general population (randomly sampled) household interviews Sample: 109 /100
Qualitative study sample In-depth Interviews (IDIs) & Ethno: Diaries for Parents/caregivers Respondents: Doctors; Therapist; Teachers; Parents ; APDK ; Parents Sample: 14
Demographics AGE (IN YEARS) 38% 40% 35% 30% 27% 25% 20% 16% 15% 11% 10% 6% 3% 5% 0% 18-24 25-29 30-34 35-39 40-44 45+ 4 in 10 of caregivers/ parents sampled ( 38%) were aged 25-29 – suggesting cerebral palsy kids were mainly first births
Demographics Age of the child with CP Below one Year 1 -5 Years 6-12 Years Teenage / Adult 43% 31% 14% 12% Total 7 in 10 of cerebral palsy cases sampled were below 12 years old.
Awareness levels General awareness of disabilities from random sample Blindness 87% Deafness 82% While 9 out of 10 people are aware Dumb 77% Physically challenged 69% of blindness, only 1 in 2 are Mentally challenged 59% Cerebral Palsy 54% Albinism 52% aware of cerebral palsy Spinal Injuries 36% Down Syndrome 30% Autism 30%
Awareness of special schools that can admit cerebral palsy kids “I was as aw awar are of of sp spec ecial ial scho sc hools ols but but the they wer ere Do you know any CP special schools ? a bit bit far ar aw away ay. So So we we had to had to reloc elocate te fr from om Don't Know 38% whe here we we wer ere to to a Thika schools 21% St peter special place near plac near the the sc scho hool ol. ” 17% school Sos special Parent of a child with cerebral 13% schools palsy KISE 4% St lucy 4% 4 of 10 people are completely unaware of St mary 4% any special school admitting cerebral palsy kids
Awareness of cerebral palsy rehab/therapy centres Don't Know 54% Mathare hospital 38% Kayole hospital 8% Kenyatta hospital 4% Mama lucy hospital 4% “I don’t know !” Slightl Slightly mor more th than an ha half lf of of the the rese esear arch sa sample mple resp espon ondents nts wer ere not not aw awar are of of any ny ce cerebral al pa palsy lsy reh ehabilita bilitation tion or or the therapy ce cente nters in in Nair Nairob obi
Why the journey is
83% of parents/caregive rs surveyed cited the lack of ramps in schools or public places affecting movement for children with CP
“ We lack sufficient facilities generally for people with disabilities. Special facilities are not available in schools despite the affirmative action taken by government. Information is also not available. ” Key Informant
98% Number of respondents who felt that the public transport does not cater for children and people with disabilities including cerebral palsy
Medical costs “I take her for therapy sessions “…… the private thrice a week and hospitals charge up to each time I am 3000/= per session and charged Kshs.500 in most cases, kids at a government hospital” parent require therapy thrice of a child with a week” Doctor cerebral palsy
0% is no no med “There is edical ical insu insuran ance ce tha that inc inclu lude des ce cerebr bral pa palsy lsy con onditi dition on; we we wer ere rejec ejected ted by by so so many many co companies mpanies. Until Until we we land landed ed on on one one whic hich almos almost ter termina minated ed the the co contr ntrac act un until til we we too ook the them to to co cour urt, t, so so the they co cover ered ed us us by by for orce ce so sort of of. ” Parent of a child with cerebral palsy
65% Number Number of of mother mothers as as the the main main caregiv car giver ers taking taking car care of of all all the the the the bills bills
67% Percentage of caregivers who either had to quit work or make adjustments on their day job to attend to their child living with cerebral palsy “When my child was diagnosed with CP, had to quit my well paying job to concentrate on bringing him up.” parent of a CP child
Impact on marriage 53% 32% 12% 3% Did not Change Badly affected Kind of Strained Improved “My husband was not buying Close to half of all of anything for my child with cp and when I insisted he left the marriages have been house to stay with another affected negatively as a woman.” Parent of a child with result of the presence of a CP child with cerebral palsy
94% of respondents felt the government was NOT doing enough to help children living with CP
Challenges in schools Facilities Few & Unsuitable Cost Teachers High Very Few trained Education system Unequal
Challenges in hospitals Misdiagnosis Negligence Insufficient trained staff High Cost Few facilities, long queues “ Kenyan hospitals have insufficient facilities, just look at Mama Lucy hospital, therapy is done in a container outside a very small space and it’s just one therapy that lasts 10 minutes. ” Key Informant
Challenges in public places STIGMA “People always The greatest challenges public places stare at my child are stigma from general public and when we are out in lack of facilities that are suited for public places, it people with disabilities. In few breaks my heart occasions, persons with disability get because instead of manhandled smiling at us they just stare. ” Parent
Activities of daily life among the upper middle class Week day 8am – 1pm; 5:45am- wakeup 1 -3pm: Therapy 8 – 9:30pm: Therapy 4:30 – 7pm: Bathing, classroom time, preparing sessions, dinner, take sessions and snacking, relaxing, work, short for school – resting / sleeping. night pills and bed watch TV, play with breaks & lunch bathing, dressing time therapy balls, & breakfast Week end the challenges 7- 10am, wake up, cleaning up & breakfast • Washing, dressing, toileting, feeding & helping 10am -1pm Therapy, playing & snacking to board & alight from the bus rejection/ 2 -5pm - Lunch, attending functions, shopping & church stigmatization by neighbors/ general public • House helps and most family members are Evening, freshening up, watching TV, takes dinner, and go to hesitant to assist bed • Limited travelling
Typical day among the lower income segments Week day Wakes at 7:00 am, 8am: Therapy session at School 9am-3pm, porridge 4 – 7pm, feeding the prepares him/ her for home and the mother break at 9:30am, Play time child and playing time. school (bathing, dressing takes the kid to school at 9:30 – 11:30, Lunch at 1:30 7- 8pm, homework. 9pm and breakfast), 9am. and sleeping 1:30 – 3pm . bed time Major challenges Weekend • Washing, dressing, toileting, feeding, carrying 8am, the kid wakes up at , is fed at intervals them on their back to school & to therapy, rejection/ stigmatization by neighbors/ general of about 3 hours; morning therapy, playing public with kids from neighborhood, outings are • No house helps and most family members are hesitant to assist mainly to visit relatives. • Limited travelling • Require close watch always Photo source: B eam & Raymond
Actionable areas
1. Awareness & Knowledge Build awareness of CP among the general public as well as provide information about support for the parents/caregivers
2. Education : Lobby government to increase affordable special schools with adequate facilities & trained teachers
3. Medical Care Re-look at the costs of medical care and consider offering subsidies for children with CP
4.Insurance: Lobby for insurance to cover cerebral palsy
5. Government policy : Push the government to implement policies that ensure that the needs of people with disabilities are catered for in key departments such as infrastructure, public transport and other necessary facilities that make their lives better
Continuous 6. Capacity Building/Training training for specific sectors involved e.g. Govt institutions; CBOs that reach the wider communities
The end.
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