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

Chapter 1: 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.

Chapter 2: Literature Review

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.

Chapter 3: Methodology

Research Design

This is a cross-sectional study that intends to assess the current needs of patients with cerebral palsy in addition to their care givers. This study intends to provide information about these needs in this moment in time, in a manner that allows researchers to gain a more comprehensive understanding of the needs of their patients in addition to interventions that could be utilized to mend gaps in knowledge. In order to assess whether patients with cerebral palsy in addition to their caregivers have an understanding of this disorder, they will be issued a survey to assess their physiological and social knowledge of the disease. This will allow researchers to understand the baseline knowledge of members of this population. Furthermore, it will be designed to assess the levels of anxiety of the patients and caregivers in the form of an interview. This aspect of the project will be primarily quantitative, as it intends to predict a connection about a lack of knowledge concerning cerebral palsy and an increased incidence of disease related anxiety. This initial survey is based on the generated literature review, which is used to indicate general needs of the population that will then receive a refined understanding upon completion of the first phase of this trial.

While the first phase of this study is observational, as it attempts to study the characteristics of the patients and caregivers that define their mental health status, this preliminary information will be utilized to generate an experimental investigation. In this aspect, the implementation of educational programs focused on individual counseling will be one intervention method, while implementation of support groups will be utilized as a second experimental intervention. Some participants will be randomized to receiving both of these interventions. The evaluation of this study will be quantitative and qualitative in nature. It is valuable to gain an understanding of whether overall knowledge of cerebral palsy has increased as a consequence of these interventions, in addition to general patient and caregiver feedback as it pertains to their mental health needs.

Participants

 A total of 40 patients were recruited to the study; 20 patients and their respective caregiver. All participants and caregivers are affiliated with the local clinic. Patients were enrolled based on the recommendation of the doctor and therefore represent a convenience sample. 50% of the caregivers are male and the remaining 50% are female, while 50% of the patients are male and 50% of the patients are female. 25% of all participants are African American, 25% are Hispanic, and 50% are white. These participant demographics are reflective of the population in which the clinic is located. All participants were approached by the researcher for involvement in the study, and informed consent was provided. Details of the study were provided in a manner that all participants were able to comprehend, and they were informed that they would be able to withdraw from the study at any time. Furthermore, they were told that their participation would entitle them to free therapy, which incentive their participation. Out of the 105 pairs of people (patient and their corresponding caregiver) that were approached to participate in the study, only 20 pairs enrolled indicating that the response rate was 19%. Since all aspects of the study were conducted at the clinic following the patient’s regular appointments, the return rate for participants was 100% throughout the 6 month trial period.

All participants acted as their own controls. Randomization was utilized to separate the participants into experimental groups. The three experimental groups included individualized counseling, group therapy, and a mixture of the two techniques. Only the patients were randomized, as the caregiver would be assigned to the same intervention, even though the care would be provided separately for these two categories of participant. As a result, 7 patients and 7 caregivers were randomized to the one on one education program. 7 patients and 7 caregivers were randomized to the group therapy program. Last, 6 patients and 6 caregivers were randomized to the combination therapy program. All participants were provided with experimental results at the end of the program so that they would be able to more effectively control their anxiety and mental health in the time going forward. In addition, they were provided with resources that they could continue to use following the completion of the study in order to ensure that their improved health would have a lasting effect.

Data Collection Methods

 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.

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. 20 patients and 20 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. This exam was graded on a scale of 100 and patients and caregivers who scored at least 70% on this information test were considered to have “passing” knowledge of cerebral palsy, while those with lower scores were said to have a “failing” knowledge of the disorder. Patients are caregivers who were able to score more than 80% on the exam were said to have comprehensive knowledge of the disorder. All examinations were then followed up with a mental health evaluation and assessment of anxiety. To protect participant identity, these scores were associated with a code for each participants, and the scores of both the test and the anxiety were linked together by using this number. All studies were conducted in compliance with HIPAA.

After this baseline data was collected, both the patients and caregivers were randomized to the three experimental groups. Members of the first experimental group were provided with a personalized education program pertaining to the causes and care of patients with cerebral palsy. These sessions focused on one on one discussion facilitating an exchange of knowledge and breaking myths related to the disorder. In these sessions, all counselors were certified nursing professionals. The second experimental group, the group therapy session, was also led by nursing professionals and were conducted in a manner that reflects interventions that psychologists and trained professionals would utilize in the mental health industry. All groups, including the third experimental group that received a combination of these therapy methods, were provided with a post-test to determine the impact of the training on their knowledge regarding cerebral palsy. Furthermore, during these sessions, the counselors were required to note progress that was observed among any of the participants. As a consequence, both qualitative and quantitative data were considered during the analysis.

Data Analysis

A student’s t-test was performed in order to determine whether there was a variation between the baseline knowledge score for participants in compared to their knowledge increase that was supported by the post-test. This analysis was completed individually for the patients and the caregivers, although a test indicating a general change in knowledge among all participants was conducted as well. Furthermore, in addition to conducting a comparative analysis that determined a knowledge increase of all participants, this analysis was also stratified according to the particular intervention method experienced. A statistically significant difference was considered to be present if the p-value was found to be less than 0.05. Following the analysis of the test scores, the score that all participants received during the pre-test was correlated with their score on the mental health assessment to determine whether there is a relationship between low amount of knowledge of cerebral palsy and mental health problems. Descriptive statistics were also used to determine the general trend of all retrieved data. A focus was placed on the average difference between pre-test and post-test scores for both groups.

During the counseling sessions, counselors were asked to record the progress of their clients. In particular, they were asked to provide a general understanding of whether they believe that their client is improving with regards to their knowledge of cerebral palsy, whether they believe that their client knows enough to ask relevant questions or to be able to conduct research on their own, and whether they will be likely to continue receiving counseling follow the completion of the trial.

Reliability and Validity

The particular assessment utilized in this study has a high level of reliability because the same test is being used to assess patients both prior to receiving the intervention and after following it. As a consequence, there are little factors that are present to confound the researchers understanding of the progress that has been made among the study participants. This is therefore classified as test-retest reliability, and this type of assessment could be used to continue to assess the knowledge gains of the participants over a long period of time. Furthermore, inter-rater reliability is relevant as well because in each situation, the counselors and researchers have been told to follow the same procedures in their analysis of the clients in addition to the information that should be provided to the participants during the therapy session.

Until future testing is done, the results of this project can be only considered internally valid. Since a small sample size was used and all participants were selected non-randomly from a single clinic, it is only reasonable to conclude that the results drawn from this study would be true from the other members of the clinic. However, since the patient population is representative of the overall population demographically, it is possible that these results can hold true within the local population from which the participant pool was drawn. In order to determine whether these results are externally valid, it would be necessary to randomly draw patients from a larger pool of individuals to determine whether the observations of the study hold true for individuals that are members of the state and national populations in general.

Limitations

 A major limitation of the study is that since it is a cross-sectional examination of the patient and caregiver population tied to cerebral palsy, it is unable to determine the long term effects of the program’s implementation. Instead, this program assesses the short term educational benefits on the participant population. While it is possible that this program creates long lasting impacts on the mental health patterns of the participants, this understanding is out of the project’s scope due to the particular study design selected. A longitudinal study could be created to resolve this problem if it is deemed that the results of this study are worth examining further.

An additional limitation of this study is the small sample size utilized. Meaningful, externally valid studies attempt to conduct a power calculation in order to determine what size participant population is needed to conclusively confirm the statistical validity of the results. However, since this project is on a small scale and the resources were not available to recruit a large number of patients, this project can be considered to serve as a pilot study for future investigations of this problem. A power calculation was ignored because only a small number of patients with cerebral palsy were present at the partnered clinic. Therefore, the number of recruited individuals was largely based on the patient population at the clinic who would agree to participate in such as study. As noted, there were 105 patient and caregiver pairs at the clinic, but only 20 pairs agreed to participate. This indicates that to even achieve an ideal study power, it is necessary to recruit a larger number of participants than needed for the study itself, because it is expected that only a small number of those approached will agree to participate.

A final limitation of the study is that there are many different therapy options available that could have been applied as interventions in this situation, but the small nature of the study required that only two be selected. It is likely that the type of intervention selected has an impact on patient and caregiver progress, but this evaluation was outside of the scope of this study. Intervention methods were selected based on literature support, which was somewhat detrimental because little research has been conducted on the mental health patterns of patients with cerebral palsy and their caregivers. Therefore, this study was conducted as a pilot to provide researchers with preliminary information necessary that would help guide them through future research on the topic.

Chapter 4: Research Findings 

The Relationship between Test Scores and Mental Health

The results of the study indicates that there is a relationship between test scores and mental health. It was found that the caregivers and patients who received a “failing” score on the pre-test were more likely to have experienced mental health problems. While the individuals with low “passing” scores were determined to have some anxiety, those will high passing scores above 80% reported little to no mental health distress. These findings indicate that there is a relationship between knowledge of cerebral palsy and mental health status. Those with a greater knowledge of the disorder were less likely to experience mental health problems, indicating that providing these individuals with intervention programs could potentially alleviate these mental health problems.

The Relationship between Intervention Programs and a Knowledge Increase

Overall, it was found that the provision of any of the interventions helped increase the knowledge of the study participants. It was found that the patients with cerebral palsy tended to have a greater knowledge of the disorder compared to their caregivers. The average score difference between the pre-test and post-test improved the most for the participants that were involved in both intervention methods, and it appears that there was an additive effect related to this improvement. There was an approximately equal score increase among participants that participated in the one on one training compared to the group therapy. However, the counselors of the participants that participated in the group therapy reported that they believed the group discussion participated in a more significant generation of self-esteem compared to the individual counseling. This demonstrates that group support is an important factor in helping both patients and caregivers.

Chapter 5: Discussion

Overall, this study indicates that providing individuals with cerebral palsy and their caregivers with knowledge programs related to the disorder are beneficial in increasing their knowledge. This is an important understanding because even though this was conducted in a formal format within the context of this study, it indicates the impact that nurses and other professionals can have on the well-being of both patients and their caregivers. As a consequence, it is important for medical professionals to provide these individuals with information that will allow them to gain a greater understanding of this order, in addition to any information that may help improve patient care. Furthermore, they should create an environment that promotes their patients and the caregivers to ask questions. This study indicated that the transmission of information is a valuable one, and there is no real need to restrict the transfer of information to a particular counseling scenario. While increasing the amount therapy received was shown to ultimately be the most effective in improving patient knowledge, one on one counseling also improved knowledge and this is the scenario that nurses and other medical professionals can mimic the most easily.

Furthermore this data provides researchers with a valuable insight into the connection between knowledge and mental health problems. Individuals who know less about the disorder appear to feel powerless to treat it or cope with it, which leads to stress and anxiety. When this stress and anxiety is prolonged for a period of time, it can lower the self-esteem and confidence of both patients with cerebral palsy and their caregivers. An increased knowledge of the disorder provides both individuals with an increased understanding of how they can directly intervene with their own well-being and to work towards improving their situation. This knowledge has the ability to provide participants with a sense of control that is beneficial in helping individuals that are impacted by cerebral palsy to improve their mindset and lifestyle. In some cases, this knowledge is practical knowledge. In the context of the study, many participants reported benefit from becoming involved in a peer group to discuss cerebral palsy and the problems that they face as a result. This is a form of support that many participants were not aware of prior to participating in the study, and many of the individuals randomized to this intervention indicated that they would like to continue participation in a support group into the near future.

Conclusion

While not much is known about the relationship between knowledge of cerebral palsy and the mental health of patients and their caregivers, this study indicates that there is in fact a connection between the two variables. Overall, an increase in knowledge of the disorder is related to a decrease in anxiety. Furthermore, education programs of any type can be used to increase the knowledge of cerebral palsy patients and their caregivers. The results of this study indicates that there is a need to further examine this relationship further, as gaining a relevant understanding will help health care professionals better understand the needs of their patients in addition to procedures that could be used in particular situations to address these needs. The health care professional is able to play a supportive role in enhancing the mental health of his or her patients by providing them with information about the disorder and recommending relevant education methods. It is the practitioner’s responsibility to ensure that these educational needs are being met, as this will consistently improve the quality of care that the patients are receiving.

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