Chapter 20 - Everyday life and social consequences of cerebral palsy
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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The challenge of comprehensive care for patients with cerebral palsy
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2020, Journal of Pediatric NursingCitation Excerpt :Resilience correlates with caregiver burden and quality of life in certain aspects, but the primary interaction was between caregiver burden and quality of life. Caregiver burden in a pediatric rehabilitation setting is researched within the context of neuromuscular diseases, such as Duchenne muscular dystrophy, CP, and spina bifida (Cavalari et al., 2017; Landfeldt, Edstrom, Buccella, Kirschner, & Lochmuller, 2018; Uldall, 2013). However, resilience among caregivers, if and how it influences caregiver burden, and how it is affected, is a field that has not been thoroughly studied.
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