The Quality of Life of Children With Cerebral Palsy, Essay Example

Introduction

Cerebral palsy (CP) is a movement disorder that is characterized by difficulty in movement. Furthermore, it is one of the most common impairments present among children, with an incidence of 2.8 per 1,000 live births (Arora et al, 2014). Manifestation of the disorder is linked to brain damage that occurs during pregnancy or following the birth. While the cause is unknown, increased risk is related to infections during pregnancy, premature birth, and exposure to environmental toxins (Ribeiro, 2011). However, a small number of afflicted individuals have a genetic predisposition for the disease. Diagnosis is typically made based on observations regarding the child’s development and specific motor problems present (Kent, 2013). After careful observation, medical professionals can more adequately define the relationship between brain trauma and the physical manifestation of symptoms. Individuals with still muscles are diagnosed with spastic cerebral palsy, individuals with poor coordination have ataxic cerebral palsy, and individuals with writing movements have athetoid cerebral palsy (MacGregor et al, 2007).

Despite the particular symptoms that individuals have, it is important to consider that the level of brain damage these individuals experienced during pregnancy or after birth can contribute to the disease’s severity. Cerebral palsy is particularly damaging to young children because the disorder has a physical manifestation that causes them to stand out from their peers. Therefore, many argue that the quality of life for children with cerebral palsy is somewhat diminished (Arnaud et al, 2008). While there are many support services available for children with this illness in schools, parents have reported that their children often have a challenging time making new friends due to a general lack of understanding of CP. In schools, students with cerebral palsy are often accompanied by paraprofessionals to ensure that they are able to safely travel between classes in addition to accomplishing their written school work. Each child with cerebral palsy has his or her own unique needs, and it is the responsibility of their school to ensure that these needs are met. However, many school districts are not aware of how to properly provide support to these individuals and many more do not have resources available that would help them with this process. (Parkes et al, 2009)

It is evident that any diminished quality of life for children with cerebral palsy is due to a lack of understanding of this disorder and the special needs of children who have it. A reduced quality of life is not always associated to the level of impairment that children exhibit. Therefore, it is important to consider that their poor quality of life is more related to negative self-perception that is reinforced by societal beliefs. In addition, low quality of life is also associated with the pain that these individuals can feel as a consequence of their disability. Many children with this disease seek physical therapy and other forms of medical treatment in order to alleviate these pains, which have been found to generally be effective (Mulligan and Shelley, 2003). While pain is correlated with the degree of impairment for these children, both they and their parents report that their primary concern is their mental well-being. (Goodman, 2001)

It is the responsibility of nurses and other medical professionals to ensure that the unique needs of patients with cerebral palsy are being met. In many instances, this involves determining whether they are mentally healthy as well as physical (Kent, 2013). While many studies have been done that help mental health professionals gain a comprehensive understanding of the factors that pertain to the diminished quality of life of individuals with cerebral palsy as it pertains to the physical pain they experience, there is little information available concerning the relationship between their mental health and quality of life (Goodman, 2001; Mulligan and Shelley, 2003). It is therefore necessary to generate a comprehensive understanding of the societal factors that contribute to a low quality of life for individuals with cerebral palsy. Since much of their mistreatment begins among their peers in the classroom, it is beneficial to determine the societal driving factors that result in the negative behaviors of their classmates (Palmer and Hoon, 2011). This information could then be used to determine how these external factors could be shaped in a manner that helps to promote the psychological well-being of children with cerebral palsy.

An additional issue that arises regarding the care of children with cerebral palsy is that in many instances, the adult care givers of these children often have mental health problems as well (Ribeiro et al, 2011). It was found that these situations arise primarily from the stress that parents deal with in order to help support their children. When their children’s classmates are mean to them, it impacts them personally. However, this impairs the ability of these parents to serve as adequate support systems to help their children through these troubled times. Therefore, it is beneficial for medical professionals to provide caregivers of children with cerebral palsy with assistance as well (My Child, 2015). In addition to giving these individuals information regarding the health state of their children and how they can provide them with care for their physical pain, nurses and other professionals can give these parents information on how to help their children cope with their anxieties as well (Arnaud et al, 2008). It is expected that if the mental anxieties of the afflicted children improve, the mental health of the caregiver will improve as well, which will cause a positive feedback system.

Overall, increasing the psychological well-being of children with cerebral palsy is important because this will help contribute to their overall recovery (Parkes et al, 2009). Cerebral palsy is becoming more common and it is therefore becoming more necessary to determine effective ways to provide parents and caregivers with information that will help them support the needs of their child. While basic medical knowledge is helpful to suit this purpose, parents need to learn to recognize the causes of their child’s mental health state and to address these issues with them in order to maintain their self-esteem. On a societal level, it is beneficial for medical professionals to create education programs that will help children gain an understanding of cerebral palsy and to promote the acceptance of afflicted children into society (Karande et al, 2008). Overall, this is expected to confer benefit to both children with cerebral palsy and the school environment as a whole, as it will ensure that schools are made to be a safe haven for all.

This study will be conducted by completing a literature review that will assess the needs of children with cerebral palsy in the population. It will aim to determine whether an increased understanding of cerebral palsy in addition to the implementation of support programs will diminish anxiety and increase the self-confidence of both CP patients and caregivers. It will then summarize actions that have been taken to help members of these populations, drawing from resolutions that have been utilized to help children cope with other disabilities. Next, the value of support groups in helping both patients with cerebral palsy and their family members cope with the detriments of this disorder. Finally, an education program will be proposed that will help foster the acceptance of children with cerebral palsy and other physical evident disabilities in schools. It is expected that this will help create a positive learning environment for all children and increase the mental health and therefore quality of life of children with cerebral palsy. Furthermore, the quality of life of caregivers is expected to increase as well. This study will use a combination of quantitative and qualitative approaches.

Cerebral Palsy and Mental Health 

Cerebral palsy is a disease that results from physical trauma to the brain, which is the part of the brain that is responsible for voluntary movement. Regardless of the severity of the trauma and physical symptoms, the primary factors that diminish the quality of life patients pertain to the physical pain they experience due to hindered or abnormal movements in addition to mental pain (Arnaud et al, 2008). The IQ and gross motor function of individuals with cerebral palsy is independent of quality of life. In fact, children with less impairment have reported to have a lower quality of life as it pertains to emotions, self-esteem, and school environment. However, this study was conducted using parent reporting in a manner that indicated that stressed parents were more likely to report a low quality of life for their child. This demonstrates that parents and caregivers of children with cerebral palsy are likely to exhibit a poor quality of life for different reasons. Children with cerebral palsy are subject to mental and physical pain, while parents and caregivers and subject to stress and anxiety related to the care and well-being of the child. As a consequence, it is important to provide both the child and the caregiver with needed support. (Hoon and Tolley , 2013)

There is reason to believe that the mental health of the caregiver can impact the health of the child that they care for. Ultimately, children are able to sense their caregiver’s tendency to become stressed about their state of health, which makes them feel guilty. This is detrimental because the disease state is not the fault of the child (Guillamón et al, 2013). Therefore, it is beneficial for the caregiver to seek help of others in their situation to form a supports system. The mental health of caregivers for children with cerebral palsy has been found to be directly correlated to the coping mechanism that parents use. As a consequence, it is beneficial for medical professionals to promote the use of support groups and establishing support systems in order to cope with the stress related to caregiving. (Parkes et al, 2009)

Treating Mental Health Disorders in Children with Cerebral Palsy

Mental health screening procedures have been used to determine the severity of symptoms related to mental health disorders in children with cerebral palsy. While the screening methods are beneficial to determine if a problem may be present, they are not significant in detecting the severity of the problem. Furthermore, these methods are unable to provide afflicted individuals or their doctors with a comprehensive understanding of how these problems could be treated, as they are primarily societal in nature. (Goodman, 2001)

One in two children with cerebral palsy have been diagnosed with a mental disorder, demonstrating the significant impact that the disease has on the mental health of afflicted individuals. Many clinicians focus on providing preventative treatment due to the high risk of developing mental disorders that is associated with the illness. These therapy programs often involve therapy sessions that help children with cerebral palsy develop a sense of self-esteem (Parkes et al, 2009). While it is not as ideal to provide these therapy services after mental health problems have become a concern, counseling remains a viable option. In some instances, children with severe symptoms are provided with antidepressants and other forms of medication. In these instances, children with cerebral palsy are treated similarly to other children that exhibit depression symptoms. However, this may not be sufficient because the depression symptoms of children with cerebral palsy are rooted in a deeper cause. (Anttila H, et al, 2008) Group therapy is proposed as a reasonable method for treating both patients with CP and their caregivers. This creates a sense of community and support that help both types of individual through their recovery.

While traditional studies have not been conducted to determine the value of support groups to individuals living with cerebral palsy in addition to their caregivers, there are many resources available for patients and parents who wish to be provided with additional support and knowledge. There are many local groups and national charity organizations that could be consulted for this purpose (My Child, 2015). Furthermore, it is important to consider that medical health professionals can be used as a valuable reference throughout this process. On a case by case basis, many people have reported that community support groups have improved their self-esteem and provided them with friends that they could count on during difficult times (Diamond and Armento, 2010). It would therefore be beneficial to determine the value of support groups and group therapy on a larger scale and it pertains to the treatment of the mental health problems of individuals with cerebral palsy and their caregivers.

Educational Programs

Involving parents with educational films has helped them increase their understanding of cerebral palsy. This technique could be used by medical professionals to help parents gain an enhanced understanding of the causes of this disorder in addition to ways that they could better support the health of their child. Disease management is directly correlated to the ability of the parent or caregiver to understand and provide proper care to the afflicted child. Studies have shown that despite that the parent typically acts as the primary caretaker for their child, many parents are not aware of even the most basic facts pertaining to the disease (Arora et al, 2014). Therefore, it is important for nurses to gain a greater awareness of this problem. In order to determine how to effectively support the knowledge of parents, it would be valuable for nurses to provide patients with a comprehensive survey to assess their understanding. This information could then be used to create a personalized education program that will help supplement necessary knowledge.

Very few studies have been conducted to identify whether creating a personalized education program is a reasonable resolution to this problem. In one case, several parents of children with cerebral palsy were interviewed to determine their understanding of the disease. Some parents were randomized to a structured education program to provide them with information about cerebral palsy. It was found that even though parental knowledge of the disorder is inadequate, a single session could be used to effectively enhance parental knowledge of the disease (Karande et al, 2008). This method could be replicated to bring knowledge of the disease to students in the classroom as well.

Summary

The available research indicates that there is a clear need to determine the factors that influence mental health problems in children with cerebral palsy to form. While there is a clear link between disease and social factors, it is necessary for medical professionals to help both patients with cerebral palsy and their caregivers to harness the available resources to support the recovery process. Professionals can help these individuals by providing them with comprehensive knowledge of the disease, which will help caregivers gain a greater understanding of how they can help resolve the problems that their children are experiencing. Furthermore, it will provide patients with an increased ability to help resolve their own troubles or to locate children experiencing the same issues that they can connect with and form a reasonable resolution together. Ultimately, it is necessary for researchers to learn more about the relationship between cerebral palsy and the quality of life of patients as it relates to mental health because many individuals with this disorder report that the societal impacts of having the illness compromise their ability to live normal lives. Therefore, medical professionals can help intervene with these problems by bringing more awareness to the public.

Literature Review

A literature review was conducted to assess the needs of individuals with cerebral palsy and their caregivers. A collection of online databases featuring peer-reviewed journals, books, and non for profit websites were accessed for this purpose. Key words included “cerebral palsy”, “mental health”, “caregiver”, “support group”, “quality”, and “quality of life”. These search terms provided a small amount of information that was summarized in Chapter 2. The lack of available information on this topic indicates a need to determine a more comprehensive understanding of how to treat the mental health problems of individuals with cerebral palsy and their caregivers.

Survey

To determine the baseline knowledge of the illness that children with cerebral palsy and their caregiver’s exhibit, they were provided with a survey that asks them to answer basic questions about the disease. 50 patients and 50 caregivers were recruited from the local clinic for this purpose. The survey included information pertaining to how the disease begins, whether it is genetic, and how treatment should be provided. After this baseline data was collected, both the patients and caregivers were randomized to either the control group or experimental group. Members of the experimental group were provided with a personalized education program pertaining to the causes and care of patients with cerebral palsy. Both the control and experimental groups were provided with a post-test to determine the impact of the training on their knowledge regarding cerebral palsy. A student’s t-test was performed in order to determine whether there was a variation between the scores of these two groups. A statistically significant difference was considered to be present if the p-value was found to be less than 0.05.

References

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