There are different theories regarding when CP occurs. Epidemiologically, the United States and Sweden assert that events associated with birth, delivery, and the postnatal period up to the first 30 days of life are causes of congenital CP. Australia delineates age 5 as the limit for congenital CP (Scherzer, 2001). Events that occur after those ages result in a CP-like syndrome with a different cause but similar manifestations and treatment needs. Congenital anomalies, chromosomal abnormalities, and metabolic syndromes also can cause a CP-like syndrome. The exact cause of CP is not known for most children.
It is postulated that prenatal factors play an important role and these prenatal factors cause premature births. Children with CP are more likely to be the product of difficult deliveries caused by prenatal brain abnormalities (Pellegrino, 1997). Infants who are diagnosed with CP are divided into two populations, preterm infants and those born at term or near term (Nelson & Grether, 1999). Naturally occurring twins and higher multiple birth children have a higher risk of CP than children who are products of single gestations. This is because more twins are born prematurely than single births.
The increased survival of premature infants and the rise in multiple births due to reproductive technology has increased the risk of CP in the population. While the prevalence of cases of CP has remained the same, the proportion of cases of CP caused by prematurity has increased 40-50% since the 1970s (Nelson & Grether, 1999). Symptomology Cerebral palsy can usually be detected in the first 12 to 18 months of life. It is often first identified when children fail to reach their motor milestones and show abnormalities in motor development (Rosenbaum, 2003).
Symptoms appearing after age two—usually caused by some type of neurological event (i. e. , a head injury)—may mimic cerebral palsy but cannot have that diagnosis. The condition is characterized by an inability to fully control motor function, muscle control, and coordination (Carlson, 2005). Depending on the exact location of the brain damage, patients may experience muscle tightness or spasm during involuntary movement, dyskinesia during voluntary movement, issues related to gait and mobility, abnormal sensation and perception, and/or impairment of sight, hearing or speech ( Lepage et al.
, 1998). Cerebral palsy can affect one or more limbs; monoplegia (one limb involved), hemiplegia (one arm and one leg involved) or tetraplegia (one arm and both legs involved) are most common (Carlson, 2005). Most sources agree that cerebral palsy is a broad umbrella term; inclusion/exclusion criteria for diagnosis are not well standardized (Krageloh-Mann, 2005). Cerebral palsy can be defined based on physical/behavioral function, neurological ability or/and brain structure (Krageloh-Mann, 2005). Additionally, brain incidents must be non-progressive (Badawi et al.
, 1998). Several conditions may be included or excluded in the category of cerebral palsy, depending on specifics of the diagnosis; these include hypotonia, genetic syndromes, metabolic disorders, and syndromes with vascular defects (Badawi et al. , 1998). Clinical Manifestations Since cerebral palsy is a changing disorder, some limitations may not be evident early in life, making definite diagnosis in early infancy and toddlerhood difficult. Delay or failure to meet developmental milestones often indicates cerebral palsy.
The evaluation of a child with cerebral palsy is an ongoing process and should be part of continuing care as the child grows from infancy to adolescence (King et al. , 1997). Caring for a child who is chronically ill and disabled due to CP adds to the tasks and challenges of parenthood (Nelson & Grether, 1999). While CP is a non-progressive permanent impairment of cerebral function, complications of the disease can lead to deterioration in function and medical status. Usually the symptoms relate to abnormal muscle control.
Children with CP require assistance with activities of daily living and are at risk for hazards of immobility. Severe spastic quadriplegia, the most severe form of CP, affects all four extremities. Musculo-skeletal conditions such as spasticity, contractures, and dislocations require medications, splints, and bracing. Modalities of treatment for spasticity to relax affected muscles include muscle cord lengthening, surgical placement of a Baclofen pump into the spinal canal, and/or Botulinum toxin A injections into the muscle.
Scoliosis can be progressive leading to impaired respiratory function, difficulty with positioning, and sometimes requiring vertebral Harrington rod placement surgery (Jackson & Saunders, 1993). Multiple handicaps frequently are present in children with cerebral palsy. Convulsive disorders are common, along with nearsightedness, strabismus, hearing deficits, speech disorders, psychological dysfunction, and behavioral disorders of organic origin (Jackson & Saunders, 1993).
Forty percent of children with CP have strabismus and 50% have mental retardation (Pellegrino, 1997). Most children with severe CP are non-verbal. CP affects the muscles of the tongue and mouth. Swallowing problems are associated with gastro-esophageal reflux, aspiration pneumonia, and failure to thrive. This may necessitate gastrostomy feeding and associated surgery (Pellegrino, 1997). Children with CP may have difficulty regulating emotions. Behavioral disorders range from Attention Deficit Hyperactivity Disorder (ADHD) to self-injurious behaviors.
CP is associated with seizures in approximately 50% of all affected children (Koman et al. , 2004). Some children with CP have reactive airway disease and difficulty managing oral secretions, necessitating nebulization treatments and tracheostomies (Pellegrino, 1997). Therapeutic Interventions Cerebral palsy is not curable and most treatments are life-long. Treatment modalities include therapy, surgery, medication, and braces/assistive devices. Rosenbaum (2003) reported the following about its treatment:
The goals of management should be to use appropriate combinations of interventions (including developmental, physical, medical, surgical, chemical, and technical modalities) to promote function, to prevent secondary impairments and, above all, to increase a child’s developmental capabilities. Many of the conventional approaches used in developmental treatment more or less target the primary impairments that underlie the functional challenges faced by children with cerebral palsy (p. 973). Physical and occupational therapy are two successful treatment modalities that can be ongoing throughout the lifetime.
They involve repetition and practice to encourage the learned use of using the affected limb(s); this may result in significant increase in function (Charles & Gordon, 2005). Therapeutic intervention can be continuous or performed at intervals as symptoms change, and may be acute, last for long periods of time or be ongoing. Surgical treatment is indicated when reconstruction is necessary, when the extremity has limited motion or function, when activities of daily living are limited or when self-esteem, stemming from altered cosmetic appearance, is impacted (Carlson, 2005).
Surgical intervention is acute and generally performed when symptoms change or when a new procedure is available; this can occur at any point during the lifespan. Living with and parenting a child who has severe manifestations of CP are burdensome to caregivers (Jackson & Saunders, 1993). As children with CP physically mature and grow, they continue to require the same level of physical care they required as young children. Physical care includes activities such as transferring, lifting and positioning.
This becomes increasingly difficult for caregivers as the child physically matures, gains weight, and grows longer. These children require 24-hour-a-day care for the rest of their lives (Jackson & Saunders, 1993). The children often outlive their family caregivers (Nelson & Grether, 1999). The goals of treatment of cerebral palsied individuals are designed to maintain mobility, maximize joint range of motion, optimal muscle control and balance, and the ability to communicate and perform activities of daily living (Jackson & Saunders, 1993).
Traditional rehabilitative techniques include physiotherapy, occupational and speech therapy, orthotics, device-assisted modalities, pharmacological intervention and orthopedic and neurological procedures, which are the mainstay of treatment strategies (Koman et al. , 2004). While these strategies focus on the physical aspects of rehabilitation, the psychological needs of the disabled have not received the same level of attention. More recently, psychological intervention has gained importance as an aspect of rehabilitation efforts in the chronically disabled.
A team approach is the most effective form of intervention (Jackson & Saunders, 1993). Nurses, orthopedic surgeons, physical and occupational therapists, language specialists, education specialists, psychologists, social workers, and behavior technologists may all work in a collaborative effort focused on maximizing abilities. Psychological response to physical disability may manifest in a variety of symptoms. While not all-inclusive, symptoms include depression, disturbances in body-image, self-confidence, self-concept, self-esteem, and perceived ability to perform tasks of daily living (i.
e. , self-efficacy) (Jackson & Saunders, 1993). Quality of Life and Cerebral Palsy Research currently available in the literature does not estimate the average number of school days missed annually by children with cerebral palsy; however, it does indicate that missed days are primarily due to exacerbation of existing motor limitations, pain, and physician visits/medical procedures (Heward, 2006). Financial expense is an area of concern for the families of these children; ultimately, it is an issue for the individuals themselves as they move into adulthood.
According to figures published by the National Institute of Neurological Disorders and Stroke (NINDS) in 2006, the average lifetime cost for a person with cerebral palsy is $921,000. This figure does not include out-of-pocket expenses including adaptive equipment or housing modifications. As most ailments associated with cerebral palsy are not life-threatening, lifetime disease management is of concern. Quality of life and happiness over the lifespan, like finance, are facets of life that require thought, planning, and special attention.
Intuitively, it seems that quality of life and health-related quality of life are important variables to assess in children with cerebral palsy. Children with cerebral palsy report lower quality of life scores than healthy children across most dimensions and these scores do not appear to improve over time (Vargus-Adams, 2006). This makes sense when considering that increased physical deterioration and decreased social support would occur as the child ages into adulthood.
Yet, physical and emotional changes most often occur at key points in development when psychosocial support and intervention would be most important and make the greatest impact (Varni et al. , 2005). Pirpiris (2006) found that physical function is not correlated with psychological well-being. Observations of children with mild cerebral palsy demonstrated that this had a greater effect on their psychological well-being than could have been predicted by functional analysis. Vargus-Adams (2006) reported slightly different results: that psychosocial domains were less severely impacted than physical domains.
According to parental reports, children with cerebral palsy have reduced quality of life and the degree of impact is related to the severity of the condition. Schenker, Coster, and Parush (2005) concur that participation in activities increases as motor disability decreases, ha the vastness of difference that can occur in the symptomology of children with cerebral palsy, it is important to remember that true physical disability may or may not be different than the disability perceived by the child.
The significance of this relates to identifying methods and types of potential interventions if true disability and perceived disability have similar psychosocial implications. Children and adolescents are likely to mirror back perceptions of confidence and competence (Nabors & Lehmkuhl, 2006). King et al. (1997) reported that adolescents perceived being believed in, believing in oneself, and being accepted by others as the most important factors related to success and happiness in life. Adults need to appreciate the importance of positive attitude (both their own and that of the child) and the availability of support.
According to research performed by Vargus (in Varni et al. , 2005), “while parents tend to be good representatives for children in assessing physical ability, they score significantly lower when asked to assess a child’s emotional or psychological functioning” (p. 294). The argument, therefore, builds that physical disability is only one facet impacting the decrease of optimal health for a child with cerebral palsy. Similarly, educational initiatives need to be directed not only at children with cerebral palsy, but at those around them as well and to target the multiple facets of cerebral palsy.
Reduction in quality of life may be largely impacted by real or perceived functional disability. Often, in an attempt to help a child, adults (and even other children) will try to be of assistance in any way possible. This can lead the child to a state of learned nonuse of the affected arm and hand. Children and adolescents with cerebral palsy may not be given adequate opportunities for assisting with day-to-day chores and activities or made to feel that physical or psychosocial supportive assistance is available without any attached stigma (Palisano, Copeland, & Galuppi, 2007).
Knowledge of self is only one piece of the puzzle for helping children with cerebral palsy. Research conducted by Nabors and Lehmkuhl (2006) demonstrated that healthy adolescents’ and adults’ knowledge and understanding of cerebral palsy are impacted by stereotypes and the physical characteristics a child with cerebral palsy displays. This leads to an important point: in some circumstances, although it will not be possible to change some physical attributes or behaviors that cause discomfort in social situations, changing cognitive perceptions can be as important.
If physical ability cannot to be changed, altering the child’s self-perception of the situation may work towards improving it (King et al. , 1997); this, however, is not easy. While young children are often resilient to taunting or discrimination from other children and adults, older children may begin to resent their impediments and draw more into themselves, making changing self-perception more difficult. Cognitive and behavioral therapy often aims to change internal cues; yet, only education may change the perceptions and notions that other people may have in a social situation.
This may have an impact on a child’s willingness to participate in activities, as well as a child’s perceptions of inability and his or her self-esteem; in turn, it can and lead to a significantly decreased quality of life and happiness over time. Warschausky et al. (2003) demonstrate that children with cerebral palsy have difficulty beginning social interactions and joining peer activities because of negative self-perceptions or self-imposed limitations.
For example, less frequent sports participation by adolescents with cerebral palsy may be the result of perceived lack of opportunity for participation (Palisano et al. , 2007). The perception of this lack of opportunity to take part can also impact the child in social and school settings. The children with chronic functional limitations have more difficulty in the social and behavioral aspects of their lives than typical children (Rosenbaum, 2003). Children with cerebral palsy tend to be more withdrawn and have less social skill than their peers.
This is very problematic, because social support is critical for children with chronic illness as they reach transitions in life and work to develop a sense of self (King et al. , 2006). Developing and maintaining peer relationships can be difficult for children who may need to leave instructional activity or the classroom to take part in therapy or health care regimens (Heward, 2006). According to Warschausky et al. (2003), there are sparse findings in the literature on the social development and adjustment of children with cerebral palsy.
To date, studies in this area have demonstrated peer problems and social rejection. Children and adolescents with cerebral palsy tend to have poor social integration (Lepage et al. 1998). Results from the Lepage et al. (1998) study confirm that even children with mild hemiplegia can have a significant disruption in social integration and peer activities. Warschausky et al. (2003), also state that children with cerebral palsy exhibit difficulty initiating social interactions or entering ongoing peer activities.
Children and adolescents with cerebral palsy may be hindered in developing social, intimate, and eventually sexual relationships (Wiegerink et al. , 2006). As children age, this problem appears to worsen with social support decreasing as age increases (Wiegerink et al. , 2006). Interventions for Children with Cerebral Palsy Children with cerebral palsy need experiences and support that will allow them to grow up happier, feel better about themselves, and enjoy more success.
It is crucial that, despite their physical or cognitive limitations, children with cerebral palsy be able to attain emotional and psychological health. Parents, teachers, coaches, and other adults all play important roles in providing normalizing and gratifying opportunities for children who struggle to be competent and accepted by their peers. Keogh and Badawi (2006) state that children with cerebral palsy and their families require significant medical, educational, and social system support.
Moreover, understanding how best to intervene with children with disabilities correlates with knowing how they view themselves (King et al. , 1997). Creating and implementing interventions devised without input from the children whom they are aimed to reach would be ineffective; interventions need to incorporate the key concepts the children themselves view as being most important. Most researchers agree that a comprehensive group approach to treating a child with chronic health issues—including physician, parent, health care team, and educator involvement—leads to the most positive outcomes.
In addition, King et al. (2004) have demonstrated strong support for family-centered service in promoting the psychosocial well-being of children with cerebral palsy and their parents, and thereby increasing satisfaction with these services. Therefore, it is highly recommended that service providers assess their beliefs and behaviors toward not only treating the child, but working closely with parents, other family members, and possibly other people in the child’s life, including educators. Wright et al.
(2005) describe conductive education, a holistic educational system that takes an active approach to teaching individuals with motor disorders to become more functional in activities of daily living as well as to have educational objectives. This improves communication between family, schools, and medical teams, and lead to more optimal outcomes. While this may be the ideal, staffing issues, funding, and a lack of supporting data on the effectiveness of existing programs limit the number of such programs being implemented.
It is also important to realize that one size does not fit all; one program will not address the needs of every child with cerebral palsy. The severity of impairment and associated cognitive or behavioral impairments differ from child to child; activities and participation in programs therefore differ as well (King et al. , 2004). “Research needs to determine whether particular types of intervention models, strategies, and methods are more effective than others for children of different ages and different social skills difficulties” (King et al. , 1997, p. 48).
This is an enormous gap and will require multiple studies in multiple settings to begin to understand this intervention process. In general, patients with cerebral palsy often have difficulty with school and social integration (Lepage et al. , 1998). For example, teachers of children with hemiplegic cerebral palsy state that these children are “at high risk of rejection by peers, lack of friends, and victimization” (Rosenbaum, 2003, p. 971). Severity of disease, motor and cognitive deficits, influence and support of family members, and other factors may impact successful integration in a school setting.
Lepage et al. , (1998) indicate that teacher attitudes, lack of dialogue among school personnel, family members and the health care team, misunderstandings of the diagnosis of cerebral palsy or a combination of these factors may also negatively impact school integration. Thus, as is often the case when lack of education is present, prejudice against children with cerebral palsy may pose a significant problem. Another facet of this problem is that the characteristics and symptoms of cerebral palsy are so vast it is impossible to broadly generalize about the affected child’s school participation needs.
While one student with cerebral palsy may require few modifications in curriculum, instruction or environment, students with cerebral palsy who experience more severe limitations in movement and intellectual functioning may require a large variety of curricular and instructional modifications, adaptive equipment, and related services (Heward, 2006). Summary Children with cerebral palsy have a wide variety of specific medical, physiological, psychosocial, and academic needs.
The high prevalence of cerebral palsy and the increased life expectancy of children with cerebral palsy over the last decade have created a strong need to explore issues related to maximizing their health, psychological well-being, educational opportunities, and social services. Moreover, these issues often advance incrementally over time. Despite recommendations in the literature, no comprehensive management program exists to manage the disease, its psychosocial correlates, and other health-related implications across the stages of childhood and adolescence development.
The first step in developing such a program is to determine psychosocial needs as identified by children with cerebral palsy. In addition, given the nature of cerebral palsy and the broad spectrum of disabilities that it may cause, little is known about how children’s self-assessment of their specific symptoms and disabilities impacts their quality of life. Psychosocial needs over the course of the child/adolescent lifespan must be delineated as a first step to creating a comprehensive health management program for children with cerebral palsy.
Parents, educators and health care professionals who live and work with children with cerebral palsy have a large responsibility. It is not quite as simple as basic care or creating an educational initiative. Cerebral palsy is a complex condition incorporating physical, psychosocial, and cognitive components. The quality of life of children with cerebral palsy is a large domain, and current research has only begun to scratch the surface. It is crucial that a chronic condition does not necessarily impact quality of life; changing this perception through an educational imitative will be a huge step forward in health education.
References Badawi, N. , Watson, L. , Petterson B. , Blair, E. , Slee, J. , Haan, E. , & Stanley, F. (1998). What constitutes cerebral palsy? Developmental Medicine and Child Neurology, 40, 520-527. Bax, M. , Goldstein, M. , Rosenbaum, P. , Leviton, A. , Paneth, N. , Dan, B. , Jacobson, B. , & Damiano, D. (2005). Proposed definition and classification of cerebral palsy. Developmental Medicine and Child Neurology, 47(8), 571-576. Bobath, K. (1980). A neurophysiological basis for the treatment of cerebral palsy. Philadelphia: Lippincott. Carlson, M. G. (2005). Cerebral palsy. In D. Green, W. C. Pederson, R. N.
Hotchkiss, & S. W. Wolfe (Eds. ), Greene’s operative hand surgery (5th ed). (pp. 210-222). Philadelphia: The Curtis Center. Charles, J. , & Gordon, A. M. (2005). A critical review of constraint-induced movement therapy and forced use in children with hemiplegia. Neural Plasticity, 12, 245-261. Cerebral Palsy International Research Foundation. (2008). Press Release. Retrieved April 2009 from http://www. cpirf. org/node/322 Heward, W. L. (2006). Exceptional children. New Jersey: Pearson. Jackson, D. , & Saunders, R. B. (1993). Child health nursing: A comprehensive approach to the care of children and their families.
Philadelphia: Lippincott. Johnston, M. V. , & Hagberg, H. (2007). Sex and the pathogenesis of cerebral palsy. Developmental Medicine and Child Neurology, 49, 74-78. Krageloh-Mann, I. (2005). Cerebral palsy: Towards developmental neuroscience. Developmental Medicine and Child Neurology, 47,435. Keogh, J. , & Badawi, N. (2006). The origins of cerebral palsy. Current Opinions in Neurology, 19(2), 129-134. Koman, L. A. , Patterson-Smith, B. , & Shilt, J. S. (2004). Cerebral palsy. Lancet, 563(9421), 1619-1631 King, G. , Specht, J. A. , Schultz, I. , & Warr-Leeper, G. (1997). Social s