Chapter 20 - Everyday life and social consequences of cerebral palsy

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Abstract

The disclosure of diagnosis for a child with cerebral palsy (CP) is a highly stressful experience to the parents. The experience can be alleviated by clarity, empathy, and an emphasis on the child's resources and abilities. Despite chronic stress many families function well and manage to strengthen the child and family's resources through spousal and family support, maintenance of hope for further development, and active care taking. The caregiver burden can be divided into an objective burden (socio-structural constraints) and a subjective burden (emotional distress). The subjective burden of care seems less important, as illustrated by the quote: “We are tired, not sad.”

Quality of life is similar in 8- to 12-year-old European children with CP and controls, whereas participation in daily life was lower for children with CP. Participation varies significantly among countries implying that some countries can improve in this area. In a study from Denmark only 29% of adults with CP were employed (versus 88% of controls), 25% were cohabitating, and 20% had children. These long-term achievements could be predicted from development quotient, CP type, and motor impairment at age 5. The goal of habilitation is integration into society, which is not achieved for the majority.

Section snippets

The diagnosis

The disclosure of the diagnosis is the first step into a new life for the parents of a child with cerebral palsy. It is a stressful situation for the parents as well as the clinician and a situation the parents will remember for the rest of their lives. Unfortunately, studies show that only 50% of the parents are satisfied with the way they received the information. The problematic factors consist of: (a) delayed and insufficient information, (b) difficulties in understanding the information,

Child's perspective

For decades, cerebral palsy has been defined and diagnosed on the basis of specific motor impairment and the main goal of therapeutic efforts has been to minimize these movement limitations. Recently the definition of CP has been revised: “…disorders of development and movement and posture causing limitation … often accompanied by disabilities of sensation, perception, cognition, communication and behaviour problems …” (Anonymous, 2007). This change follows the concepts of WHO's international

Psychological problems

Mental health problems in the general child population are seen in an estimated 10% of children over 5 years of age. It is well known that an increased proportion is seen in children with brain injury, explained by a direct link between the brain and behavior. Negative social experiences like feeling excluded and being bullied might, however, contribute to emotional and behavioral maladjustment.

In 8- to 12-year-old European children with CP it was found that a quarter had significant

Education, employment, and social integration as adults

According to a survey across Europe a little more than half of children with CP are in mainstream schooling between 8 and 12 years of age (see Table 20.4) (Dickinson et al., 2007). Data for a representative cohort on education in adulthood have only been published by the Danish Cerebral Palsy Register (Michelsen et al., 2005): just 33% of adults with CP versus 77% of controls had continued in education beyond lower secondary school. Predictors of receiving special school education (no

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