Managing Cerebral Palsy: Focusing on the Caregiver

Titi TadeChief Medical Social Worker, LUTHA presentation given at Benolas 2nd National Cerebral Palsy Family ForumManaging Cerebral Palsy: Focusing on the Caregiver02-Aug-2014IntroductionChildren play a big part in marriages: every couple look forward to children to complete the familyCouples 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.

02-Aug-20142IntroductionThey will initially turn to Health Care Providers for Medical Care and SupportBut 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 childAcceptance is the key!

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Family02-Aug-20144The familyTwo 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+(sociologyThe family is homeHome is where human needs are met such as Food, housing, warmth, love, safety and securityHome is where basic social skills are learned such as greeting, smiling etc

Remember the family is the primary agent of socialization02-Aug-2014The role of the familyThe family should provide:InclusionRespectAccessibility Equal opportunity for all children including the child with CPThe Family plays an invaluable role in providing stability and support for a childCaring for a child with CP is a lifelong commitment of love that should include all members of the family

02-Aug-2014The role of the Family cont.Provide a safe and secure environment for the child to grow in without fearProvide home based care such as e.g. Physical therapy, speech therapyTeach the child adequate and appropriate social interaction Provide enabling environment for positive adjustment of siblings

Providing emotional supportAdvocacyInformation DisseminationSupport Groups

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Psychosocial stressors for family Financial implicationsLack of social supportStigma/DiscriminationInadequate counselling to prepare themStrain on family relationshipsPoor 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 needsProvide 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 etcCreation of Support groupsIncreased education of caregivers via health programmes geared towards them.

02-Aug-2014The Role of the Society Provide easy accessibility in buildings and general physical environment Provide easy access and Safe transportationLaws and Bills to reduce Stigma, discrimination, abuse, neglect, and violations of rights

02-Aug-2014Care of the CarerCaregiving can be overwhelmingIt can affect the health, relationships, and state of mind of caregivers.If the caregiver doesnt speak out, no help will comeIf the caregiver doesnt share responsibility with others, they will burn outWe need to support our carers: financially, physically, spiritually etcIt is important that caregivers should care for themselves as well.

02-Aug-2014On a final noteThe family is the societyYour child can only reflect what it is givenSo the society is a reflection of you and your family

You must be the change you wish to see in the world.

--------- Mahatma Gandhi

02-Aug-2014THANK YOU!!!

ReferencesChallenges in Social Development of young Children - Sean Brotherson, Ph.D., Family Science Specialist, NDSU Extension ServiceMizrahi .T, Davis. L.E (2008), Encyclopedia of Social Work- 20th Edition, NASW Press, Oxford University Press.

Images:https://www.facebook.com/thebenolainitiative/photos_streamhttp://stopgapblog.blogspot.com/p/community-ramp-project.htmlhttp://www.entireprojects.co.uk/portfolios/healthcare/http://en.wikipedia.org/wiki/File:Scales_Of_Justice.svg

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