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Cerebral palsy : Perceptions Survey report

Presentation Bird Eye view

Background Study Objectives How we did it Summary findings

Actionable areas ? ……..

ce·re·bral pal·sy ˌserəbrəl ˈpôlzē/ 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.

definition

To understand and highlight perceptions and issues surrounding the lives of children with Cerebral Palsy and their caregivers

Research Objectives

This study ( by Breakthrough Consulting, in partnership with Orion Foundation) was motivated by the twin aspect of increasing prevalence

• f 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

Location : Nairobi >>> South C, Kangemi, Donholm, Buru Buru, Ruiru, Mathare, Umoja

Quantitative study sample

Respondents: Parents, mainly mothers of children with CP (purposive sampling); Non CP general population (randomly sampled) household interviews

Sample: 109 /100

In-depth Interviews (IDIs) & Ethno: Diaries for Parents/caregivers

Qualitative study sample

Respondents: Doctors; Therapist; Teachers; Parents ; APDK ; Parents

Sample: 14

Demographics

AGE (IN YEARS)

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

7 in 10 of cerebral palsy cases sampled were below 12 years old.

Awareness levels

87% 82% 77% 69% 59% 54% 52% 36% 30% 30% Blindness Deafness Dumb Physically challenged Mentally challenged Cerebral Palsy Albinism Spinal Injuries Down Syndrome Autism

General awareness of disabilities from random sample

While 9 out of 10 people are aware

• f blindness, only 1 in 2 are

aware of cerebral palsy

4 of 10 people are completely unaware of

any special school admitting cerebral palsy kids

Do you know any CP special schools ?

“I was as aw awar are of

• f sp

spec ecial ial sc scho hools

• ls but

but the they wer ere a bit bit far ar aw away

• ay. So

So we we had had to to reloc elocate te fr from

• m

whe here we we wer ere to to a plac place near near the the sc scho hool

• l.”

Parent of a child with cerebral palsy

Awareness of special schools that can admit cerebral palsy kids

Awareness of cerebral palsy rehab/therapy centres

“I don’t know !” Slightl Slightly mor more th than an ha half lf of

• f the

the rese esear arch sa sample mple resp espon

• ndents

nts wer ere not not aw awar are of

• f any

ny ce cerebral al pa palsy lsy reh ehabilita bilitation tion

• r
• r the

therapy ce cente nters in in Nair Nairob

• bi

Why the journey is

83%

• f

parents/caregive rs surveyed cited the lack of ramps in schools

• r 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

“……the private hospitals charge up to

3000/= per session and

in most cases, kids require therapy thrice a week” Doctor

“I take her for therapy sessions thrice a week and each time I am charged Kshs.500 at a government hospital” parent

• f a child with

cerebral palsy

Medical costs

0%

“There is is no

no med

edical ical insu insuran ance ce tha that inc inclu lude des ce cerebr bral pa palsy lsy con

• nditi

dition

• n;

we we wer ere rejec ejected ted by by so so many many co companies

• mpanies. Until

Until we we land landed ed on

• n one
• ne whic

hich almos almost ter termina minated ed the the co contr ntrac act un until til we we too

• ok the

them to to co cour urt, t, so so the they co cover ered ed us us by by for

• rce

ce so sort of

• f.” Parent of a child with cerebral

palsy

65%

Number Number of

• f

mother mothers as as the the main main car caregiv giver ers taking taking car care

• f
• f all

all the the the the bills bills

67%

Percentage

• f

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

Close to half of all of marriages have been affected negatively as a result of the presence of a child with cerebral palsy

“My husband was not buying anything for my child with cp and when I insisted he left the house to stay with another woman.” Parent of a child with CP

94% of respondents felt

the government was NOT doing

enough to help children living with CP

Challenges in schools

Facilities Few & Unsuitable Cost High Teachers Very Few trained Education system Unequal

Challenges in hospitals

“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

Misdiagnosis Negligence Insufficient trained staff High Cost Few facilities, long queues

Challenges in public places

“People always stare at my child when we are out in public places, it breaks my heart because instead of smiling at us they just stare.” Parent

STIGMA

The greatest challenges public places are stigma from general public and lack of facilities that are suited for people with disabilities. In few

• ccasions, persons with disability get

manhandled

Activities of daily life among the upper middle class

Week day

Week end

the challenges

• Washing, dressing, toileting, feeding & helping

• House helps and most family members are

• Limited travelling

Typical day among the lower income segments

Week day Weekend

8am, the kid wakes up at , is fed at intervals

• f about 3 hours; morning therapy, playing

with kids from neighborhood, outings are mainly to visit relatives.

Major challenges

• Washing, dressing, toileting, feeding, carrying

them on their back to school & to therapy, rejection/ stigmatization by neighbors/ general public

• No house helps and most family members are

hesitant to assist

• Limited travelling
• Require close watch always

Actionable areas

Build awareness of CP among the general public as well as provide information about support for the parents/caregivers

• 1. Awareness & Knowledge

• 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

• ther

necessary facilities that make their lives better

• 6. Capacity Building/Training

Continuous training for specific sectors involved e.g. Govt institutions; CBOs that reach the wider communities

The end.