Managing Cerebral Palsy: Focusing on the Caregiver

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02-Aug-2014

Managing Cerebral Palsy: Focusing on the Caregiver

TitiTade

Chief Medical Social Worker, LUTH

A presentation given at

Benola’s 2 nd National Cerebral Palsy Family Forum

02-Aug-2014

Introduction

Children play a big part in marriages: every couple look forward to children to complete the family

Couples make decisions based on the belief that they will inevitably conceive and have healthy children.

When a diagnosis of cerebral palsy is made, the couple is left wondering what to do and where to seek help.

Introduction

They will initially turn to Health

Care Providers for Medical Care and Support

But the HCP can only give professional advice and counsel the rest is up to the family.

For the family to provide the necessary care for the child, they first have to accept the child

Acceptance is the key!

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Family

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The family

Remember the family is the primary agent of socialization

Two or more people who share goals and values, have long-term commitments to one another, and reside usually in the same dwelling place. http://www.thefreedictionary.com/Family+(sociology

The family is home

Home is where human needs are met such as

 Food, housing, warmth, love, safety and security

Home is where basic social skills are learned such as greeting, smiling etc

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The role of the family

The family should provide:

Inclusion

Respect

Accessibility

Equal opportunity for all children including the child with CP

The Family plays an invaluable role in providing stability and support for a child

Caring for a child with CP is a lifelong commitment of love that should include all members of the family

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The role of the Family cont.

Provide a safe and secure environment for the child to grow in without fear

Provide home based care such as e.g. Physical therapy, speech therapy

Teach the child adequate and appropriate social interaction

Provide enabling environment for positive adjustment of siblings

Providing emotional support

Advocacy

Information Dissemination

Support Groups

Psychosocial stressors for family

Financial implications

Lack of social support

 Stigma/Discrimination

Inadequate counselling to prepare them

Strain on family relationships

Poor access/

Insufficient specialist care

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The Role of the Society

Family is the Society:

Provision of affordable Special Schools to cater for special needs

Provide enabling conditions for increase number of graduates in specialist fields that can provide one on one therapy i.e. physiotherapist, speech therapist, Psychologist, play therapist, music therapist etc

Creation of Support groups

Increased education of caregivers via health programmes geared towards them.

The Role of the Society

Provide easy accessibility in buildings and general physical environment

Provide easy access and Safe transportation

Laws and Bills to reduce Stigma, discrimination, abuse, neglect, and violations of rights

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Care of the Carer

Caregiving can be overwhelming

It can affect the health, relationships, and state of mind of caregivers.

If the caregiver doesn’t speak out, no help will come

If the caregiver doesn’t share responsibility with others, they will burn out

We need to support our carers: financially, physically, spiritually etc

It is important that caregivers should care for themselves as well.

On a final note

The family is the society

Your child can only reflect what it is given

So the society is a reflection of you and your family

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THANK YOU!!!

References

1.

2.

Challenges in Social Development of young Children - Sean

Brotherson, Ph.D., Family Science Specialist, NDSU

Extension Service

Mizrahi .T, Davis. L.E (2008), Encyclopedia of Social Work-

20 th Edition, NASW Press, Oxford University Press.

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Images: https://www.facebook.com/thebenolainitiative/photos_stream http://stopgapblog.blogspot.com/p/community-ramp-project.html

http://www.entireprojects.co.uk/portfolios/healthcare/ http://en.wikipedia.org/wiki/File:Scales_Of_Justice.svg

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