Chapter 1: Introduction
According to the Centers for Disease Control and Prevention, in 2015, 1.2% of the United States population was reported as having active epilepsy (National Center for Chronic Disease Prevention and Health Promotion, 2018). This percentage corresponds to approximately 3.4 million people with epilepsy nationwide. The state of California has the highest number of reported cases of epilepsy in the nation with 427,700 cases in 2015 with approximately 59,000 cases involving children ages 0-17 (Zack & Kobau, 2017). Epilepsy is a common neurological disorder, also known as seizure disorder, and is characterized by recurrent seizures which are not always easily controlled by medication. There are various types of seizures that affect children with epilepsy with symptoms varying from convulsions and losing consciousness to rapid blinking and staring into space (National Center for Chronic Disease Prevention and Health Promotion, 2018). Children diagnosed with epilepsy may suffer from one or more types of seizures with variations in frequency, severity, and symptoms (Zack & Kobau, 2017).
The impact of childhood epilepsy is complex and extensive. It is typically unpredictable, dangerous, and often affects a client’s mental health due to social exclusion and stigmatization from society and peers. Previous research has shown that children with chronic health conditions including epilepsy are at increased risk for poor educational and vocational outcomes which can have an impact on future occupational performance (Maslow, Haydon, McRee, Ford, & Halpern, 2011). This, in combination with the stigma that many people with epilepsy endure, may ultimately impact the variety of occupations this population participates in.
Current research on epilepsy has identified the multi-faceted nature in which an epilepsy diagnosis impacts the person inclusively. Extensive research has reported that the crucial determinant in increasing overall well-being is becoming seizure-free (Birbeck, Hays, Cui, & Vickrey, 2002). However, that is not a goal that everyone can easily attain which generates the need to study alternative environments more critically in order to help promote health and wellness for this population. The purpose of this study is to explore the effects of a structured home-school environment on adolescents diagnosed with epilepsy on their academic achievement, social relationships and overall quality of life.
Several research questions were investigated throughout this study. First, what differences are there in academic achievement for adolescents with epilepsy in a structured homeschool learning environment in comparison to public schooling? Second, how are social relationships fostered in a structured homeschool environment for adolescents diagnosed with epilepsy? Is there a difference in number of social relationship contacts and the strength of those relationships between these adolescents in comparison to a public school setting? Lastly, is the quality of life for adolescents with epilepsy better for those in a structured homeschool environment versus a public school learning environment?
This study is significantly important because of the bearing that academic and social domains have on present and future occupational engagement and the overall effect that an epilepsy diagnosis carries affecting one’s quality of life. In order to promote occupational engagement, an analysis of how the environment may be limiting the variety of occupations students with epilepsy participate in is necessary. In addition, taking into consideration the role the environment plays will help these students to build a successful foundation early in life in order to prevent possible occupational deprivation in the future. The profession of occupational therapy is uniquely positioned to address the prevention of occupational deprivation due to academic, psychosocial, and cognitive barriers through use of a variety of assessments. One of these assessments, the Canadian Occupational Performance Measure, seeks to address the occupational difficulties that children with epilepsy and their families face giving both the child and their families an opportunity to communicate which occupations are most important to them to help guide intervention (Fayed & Kerr, 2009). In this way, occupational therapists will be able to make a difference in how children interact and engage in occupations that may have been restricted previously and thus promote future success in occupational engagement.
This study defines the population with epilepsy as being diagnosed by a doctor, currently prescribed and taking anti-epileptic drugs, and reporting seizure frequency as at least four times in the last six months. Participants will be organized by seizure type but this study will not exclude any particular types of seizures. For the purpose of this research study, academic achievement can be defined similarly to the educational bodies of literature using the state standardized assessment by grade level for each participant and comparing those scores to the participant’s measured IQ level using the full Wechsler Intelligence Scale for Children and Adults (Wechsler, 1958; Wechsler, 2003). Social relationships will be measured by the frequency of social contacts daily, weekly and monthly reported by the participants and their family members. Additionally, data will be collected on the strength of these social relationships through use of a self-reported questionnaire given to the participant and their social contacts. Lastly, the quality of life of the participants will be measured through the Youth Quality of Life Instrument assessing four domains including sense of self, social relationships, environment, and general quality of life (Salum, Patrick, Isolan, Manfro, & Fleck, 2012; Edwards, Huebner, Connell, & Patrick, 2002).
Chapter 2: Literature Review
Although the customary goal prioritized in research for managing epilepsy focuses almost exclusively on seizure control and minimal side effects from medications, there are many other factors that impact the well-being of a child with epilepsy and their families. The topic of this literature review explores the effects that epilepsy has on children in the academic and social domains including overall quality of life. The literature will be broken down by subtopic and will discuss how epilepsy affects academic achievement, socialization, and quality of life, and how homeschooling may benefit the population of students with epilepsy. The discussion of these subtopics aid in supporting the need for the present research study which considers how a structured homeschool learning environment may be more favorable for students diagnosed with epilepsy.
Theoretical Framework for Study
The theoretical framework that informs this study is the PEOP model due to the interaction of the person, environment, occupation and performance (Cole & Tufano, 2008, p. 127). Similarly, this research study will explore how these four components interact resulting in lower levels of occupational performance for students diagnosed with epilepsy utilizing a cohort study design. Bodies of literature that will be addressed within this literature review include academic and psychosocial studies, and a variety of comparison studies related to children with epilepsy.
Many research studies over the years have come to the conclusion that children with epilepsy struggle academically (Braakman et al., 2012; Drewel, Bell, & Austin, 2009; Mitchell, Chavez, Lee, & Guzman, 1991). Although several studies have been criticized for recruiting participants with epilepsy that are also below average intelligence, potentially impacting the results for academic achievement, there are also many studies that eliminated the confounding variable excluding participants with global cognitive deficits and comorbidities (Fastenau, Shen, Dunn, & Austin, 2008; McNelis, Johnson, Huberty, & Austin, 2005; Reilly et al., 2014). These studies showed that while there were slight differences in the data for academic achievement, the results were very insignificant in comparison and still yielded significant evidence that children with an epilepsy diagnosis perform at lower levels of academic achievement than others their age and grade level.
Among the several studies that did exclude participants with global cognitive deficits (below average IQ) and comorbidities, research indicated that children with epilepsy achieve lower scores in mathematics, reading, and written language subtests including spelling (Braakman et al., 2012; Drewel et al., 2009; Jackson et al., 2013; Mitchell et al., 1991; Shoenfeld et al., 1999; Williams & Sharp, 1996). Another study indicated that children with epilepsy had significantly lower achievement scores in reading and mathematics subscales than children with chronic asthma (Austin, Huberty, Huster, & Dunn, 1999). This same study also found that children with epilepsy continue to perform significantly worse over time even when their condition improves. This distinguishes that the academic difficulties that participants with epilepsy undergo are specific to epilepsy and not simply the result of living with a chronic condition and that the risk to academic achievement is long-term. This information illustrates the critical importance in finding alternative ways to help these children succeed academically. The risk of low academic achievement is one that can impact social outcomes and employment as children with epilepsy enter into adulthood leading to potential occupational deprivation and a lack of engagement in meaningful occupations. Proactive methods for addressing academic difficulties with this population are not well-addressed throughout the literature, and are exactly what this population needs in order to prevent potential academic difficulties precluding this population from performing at their highest capacity.
Academic achievement and attention.
Among the difficulties that children with epilepsy face in the academic domain, children with epilepsy are also more likely to have significant deficits in attention (Semrud-Clikeman & Wical, 1999; Williams et al., 2001). In one study, attentional difficulties included problems staying focused and the child being unable to respond consistently (Semrud-Clikeman & Wical, 1999). In a traditional school setting, these difficulties can severely impact a student’s academic performance and in a classroom with 30 other students, a child may be more likely to fly under the radar for a prolonged period of time before a teacher notices these deficits. Although the study by Semrud-Clikeman and Wical (1999) included students concurrently diagnosed with attention deficit hyperactivity disorder (ADHD), their findings remained stable even when children diagnosed with ADHD were excluded from the study. This indicates that the strong association between an epilepsy diagnosis and deficits in attention is not due to any underlying attentional deficit disorder, but is specific to the epilepsy condition. This was found to be the case regardless of seizure type suggesting that the difficulties in attention may be due to a more general neurological element of the epilepsy disorder as a whole. This finding has strong clinical significance for occupational therapists evaluating and determining interventions for their clients with epilepsy who may similarly have obscured deficits with attention that go unnoticed.
An important relationship between auditory attention skills and academic achievement was also found through the use of the Number Letter Memory Subtest that is an assessment highly sensitive to inattentiveness (Williams et al., 2001). “A more generalized pattern of inattention, regardless of seizure type, may reduce the ability to attend to auditory information within the environment, resulting in decreased achievement” (Williams et al., 2001, p. 221-222). This relationship is critical to our understanding of the academic difficulties this population struggles with especially if their attentional difficulties are not severe enough to receive a diagnosis of ADHD. The need for more research and interventions to help promote academic success in this population is clear, but the direction of these interventions should also take into consideration the effect on attention, specifically auditory attention. Homeschooling is an intervention that can potentially impact a child’s academic performance but also may provide a learning environment that is more conducive to students with difficulties in maintaining attention. Having far fewer distractions in a homeschool environment and the flexibility for the student to work on their own schedule takes into consideration this element of attention and the difficulties affecting this population.
Furthermore, it was found that attention skills were more predictive of academic performance than other variables such as memory, epilepsy variables, socioeconomic status or self-esteem (Williams et al., 2001). However, there has been limited research that addresses interventions with the epilepsy population that focus on this aspect of attention and its connection to academic underachievement. This proposed study will do just that by investigating an alternative learning environment such as homeschooling that is unique and individualized to the student taking into consideration the complexity of effects of an epilepsy diagnosis including underlying difficulties in attention.
Effects on the Social Domain
In addition to the physical hazards that pose as a critical burden for those diagnosed with epilepsy, there is also the strain of social exclusion due to the negative attitudes held by teachers, peers and other members of society. Furthermore, one must take into consideration the social stigma that is often associated with epilepsy that can also have an impact on a student. This includes societal beliefs that people with epilepsy are unable to attain certain things due to their diagnosis such as attend school, marry, have kids, drive a car, or find employment (Austin, Shafer, & Deering, 2002).
Although the research for understanding the social stigma in relation to epilepsy is limited due to the complexity of the concept and possibly the lack of quantitative instruments that can directly measure social stigma, the studies that do exist demonstrate significant gaps in society’s knowledge of epilepsy and many misconceptions of what epilepsy is and how it affects those who are diagnosed (Ali, Tomek, & Lisk, 2014; Austin et al., 2002; Bishop & Boag, 2006; Savarese, Carpinelli, D’Elia, & Coppola, 2015). Among many of these studies, it was found that many people lacked the knowledge of what to do if someone had a seizure and also held inaccurate beliefs that epilepsy might be contagious or considered a mental illness (Ali et al., 2014; Austin et al., 2002; Savarese et al., 2015). Furthermore, teachers perceived students with epilepsy as unlike other students with only 25% of the sample of middle and high school teachers claiming that students with epilepsy would not be marginalized by other students (Savarese et al., 2015).
This illustrates that as children age, the stigma of an epilepsy diagnosis also becomes more burdensome. Teachers without proper expertise and knowledge to support a student with epilepsy will continue to contribute to the vicious cycle that promotes social stigma causing students with epilepsy to suffer without access to an academic learning environment that promotes their success. These misconstrued beliefs by the teachers may also subconsciously impact the quality of the support they provide to students with epilepsy in comparison to other students.
Although in one study related to social stigma, students with epilepsy reported that they didn’t feel that they were socially stigmatized, more than 50% of the sample reported that they keep their epilepsy a secret and 70% reported that they rarely or never talk to others about their epilepsy (Westbrook, Bauman, & Shinnar, 1992). Therefore, the lack of student scores indicating experiences of social stigma could potentially be due to a majority of the sample not disclosing their diagnosis in the first place. In another study, 70% of the sample of students responded that if they had a friend diagnosed with epilepsy they would want their friend to tell them; however the majority of this same sample reported that if they were diagnosed with epilepsy they would not tell their friends about their condition (Austin et al., 2002). These findings illustrate a strong indication of perceived negative consequences for being open about an epilepsy diagnosis. The study also indicated that respondents felt that an epilepsy diagnosis was more likely to make someone unpopular and more likely to be bullied (Austin, et al., 2002). This paints a clear picture of how typical students perceive those with an epilepsy diagnosis and indicates that the social environment for those with a chronic condition such as epilepsy has a variety of negative consequences. With a condition that is not always easily concealed, alternative environments such as homeschooling may provide a more positive social environment that will help foster this population’s self-esteem to negate the social stigma that continues to be prevalent in our society.
The above research relates to this proposed study because if students with epilepsy are encompassed in an environment that doesn’t fully understand their diagnosis and limitations and if a disclosure of their diagnosis elicits negative social consequences, students with epilepsy will continue to have difficulties with making social connections and fostering healthy relationships. Furthermore, the trend in research that teachers specifically continue to lack knowledge about the condition of epilepsy is worrisome (Bishop & Boag, 2006). Teacher attitudes and beliefs can directly impact the self-esteem and social connectedness of a student with epilepsy. Over time, these ensuing beliefs may impact the child’s engagement in occupations due to the development of poor self-esteem that may lead to occupational deprivation in the present and future and potentially a lower quality of life.
Quality of Life
The quality of life for people with epilepsy is dependent on a variety of variables. One of these variables includes the potential for becoming seizure-free which has had a majority of researchers’ support. Several studies throughout the literature indicated that the most significant levels of improvement in health-related quality of life measures wasn’t seizure frequency or severity but was seizure freedom (Birbeck et al., 2002; Leidy, Elixhauser, Vickrey, Means, & Willian, 1999; Stavem, Loge, & Kaasa, 2000). But then, what about those who are unable to attain seizure freedom despite their best efforts? This leads to the necessary critical analysis of quality of life and other potential factors that play a role in life satisfaction to provide these additional strategies to those with an epilepsy diagnosis to help improve their quality of life while living with this chronic condition.
Quality of life and comorbidities.
Another variable that has been commonly found in the research regarding quality of life is the potential for comorbidities. The populations of people with epilepsy are no different than other populations with chronic conditions and are more likely to suffer from more than one illness at the same time. The most prevalent of these comorbid conditions that people with epilepsy suffer from is anxiety and depression (Jacoby, Snape, Lane, & Baker, 2015; Leidy et al., 1999; Pulsipher, Seidenberg, Jones, & Hermann, 2006; Strine et al., 2005; Téllez-Zenteno, Matijevic, & Wiebe, 2005). One research study reported that an increase in the number of comorbid conditions was associated with lower levels of quality of life (Pulsipher et al., 2006). Although some of these conditions may be due to environmental or genetic predispositions, anxiety and depression can also be induced as a side effect from anti-epileptic medications making those with an epilepsy diagnosis even more likely to suffer from multiple diagnoses (Baker, Jacoby, Buck, Stalgis, & Monnet, 1997). Additionally, anxiety or depression may also stem from the social stigma and worry a student experiences about having a seizure in class. They may experience feelings of depression if their condition limits them from participating in activities that they enjoy or previously enjoyed. Homeschooling may be one way we can adapt the environment to limit the social anxiety of having a seizure in front of a large audience, limit the magnitude of anxiety someone with epilepsy may experience, and therefore increase the student’s overall quality of life.
In another study it was found that trait anxiety, defined as “stable individual differences in anxiety proneness,” was a significant contributor to quality of life (Jacoby et al., 2015, p. 151). This was also corroborated by Spielberger, Gorsuch, and Lushene (1970) who additionally reported that higher levels of trait anxiety is associated with self-reported difficulties in almost every facet of life including social and intimate relationships, health and well-being, future planning, and work adjustments. Although few studies have been done that specifically address the impact of anxiety on quality of life, the study conducted by Jacoby et al. (2015) included a very large sample size and utilized a large sample for the control group as well which adds to the reliability of the study. This has important clinical implications because it shows that professionals can help the client with epilepsy with their quality of life by beginning with addressing the trait anxiety they may be experiencing. Adaptations to the environment may be a helpful way to eliminate some of this anxiety which is why it is important to conduct the research to find out if a homeschooling environment may be a more holistic option to improve the lives of those with epilepsy.
The impact of sleep on quality of life.
A third variable that has been on the radar of several researchers although has not been researched extensively is that of sleeping difficulties and how lack of sleep may impact quality of life. It was found that the groups of people with epilepsy reported both an increase in nighttime sleep difficulties and also daytime sleepiness in comparison to controls attributed to anxiety (Jacoby et al., 2015). This is clinically important because of the extensive research that has associated sleep problems with academic difficulties and now we are being made aware of potential problems with quality of life. If students with epilepsy are having sleep difficulties it may be affecting multiple facets of their lives contributing to lower levels of quality of life. This information lends itself to discovering possible flexible schedules that can accommodate these sleeping difficulties, of which homeschooling may just be the answer.
Over the last several decades, the population of students entering into a homeschooled environment has become more prevalent due to familial beliefs, religious convictions, and dissatisfaction with the public school system (Mayberry & Knowles, 1989). Although there has long been a debate comparing student achievement scores from those who are homeschooled and those attending public school, in general, several studies indicate that academic achievements of students who are homeschooled exceed those of their peers attending traditional schools (Martin-Chang, Gould, & Meuse, 2011; Ray, 2010; Rudner, 1999). However, many of these studies have flaws in their methodology including not randomizing their samples, not differentiating between two distinct divisions of homeschooling (structured and unstructured), and mistakenly comparing two different school structures without critically analyzing the difference in educational goals both structures may set out to achieve.
A structured homeschool environment is similar to the traditional schooling method in that teaching and learning takes place according to a defined curriculum (Martin-Chang et al., 2011; Neuman & Guterman, 2016). Unstructured homeschooling, on the other hand, also known as unschooling, is a more independent learning process aimed to be completely child-directed with little to no external obligations placed on the learning process (Martin-Chang et al., 2011; Neuman & Guterman, 2016). The study conducted by Martin-Chang et al. (2011) was one of very few studies that differentiated between the structured and unstructured homeschooling options in order to address some of the methodological flaws in previous studies. This study found that children who were homeschooled in a structured environment outperformed both children in traditional schools and children in an unstructured homeschool environment. Interestingly, children who were homeschooled in an unstructured environment were not only outperformed by the structured division of homeschooling, but also the children in the traditional school environment (Martin-Chang et al., 2011). This illustrates that students without a diagnosis that are homeschooled within a structured environment can achieve academic success at the same level or higher than their peers attending traditional schooling, but the samples did not include students with chronic conditions. Research needs to be conducted to investigate whether this finding may also be generalizable to a population of students with a chronic condition such as epilepsy. Specifically, it will be important to distinguish if the population of students with epilepsy have better academic outcomes in a structured homeschool environment in comparison to their own performance in a traditional school environment, which is what this proposed study will help to determine.
Another reason parents often make the decision to homeschool their children is in order to provide a more flexible learning environment with individualized attention for their children with special needs (Duvall, Delquadri, & Ward, 2004; Duvall, Ward, Delquadri, & Greenwood, 1997). One research study reported that a group of homeschooled students with learning disabilities made more progress in reading, math and spelling than the control group comprised of students with learning disabilities attending public school (Duvall et al., 1997). These are the same subjects that children with epilepsy are struggling with in the traditional public school classroom mentioned in the previous section. While the limitations in this study involve a very small sample size which limits the generalizability of the findings, it makes a strong argument for producing research using the population of children with epilepsy. The age of the population in this study included elementary school and junior high school aged participants, which also begs the question if the findings may be similar for those at the high school level which is the specific population this proposed study intends to use.
Homeschooling and socialization.
Another factor that both proponents and opponents of homeschooling deem important in regards to homeschooling are the students’ opportunities for socialization and whether or not they still develop the social skills necessary to be a productive member of society. Those who oppose homeschooling argue that the homeschooling environment limits opportunities for children to socialize and may leave them feeling more isolated than they would if they were attending traditional school (cite). On the contrary, many homeschooled students when asked identified mostly positive experiences related to homeschooling (Montgomery, 1989; Mullins, 1992). For example, in the study conducted by Montgomery (1989) only two students out of 87 in the sample mentioned a disadvantage of homeschooling as having “fewer friends.” This was among a list of 242 experiences of homeschooling mentioned by the students of which only 3 experiences stated were deemed negative. Another study found that the slightly decreased frequency of social contacts made in a one month period by homeschoolers was not statistically significant when compared to students in traditional schools (Catham-Carpenter, 1994). Although home schooled students had fewer social contacts with peers than those attending traditional school, this is most likely due to the convenience of attending a traditional school with many opportunities for peer contact and may be different had the study been conducted during the summer months.
While there has been a moderate amount of research done on the effects of homeschooling, there has not been any research done on homeschooling with the population of children with epilepsy. Due to the multitude of advantages that have been addressed in many of these research studies, many of them align greatly with the needs of this population. Addressing these needs will give students a better chance to succeed potentially preventing future occupational deprivation that can occur without a strong educational foundation.
The research has been extensive in terms of how an epilepsy diagnosis may impact children, both academically and socially. It is apparent that these two domains are intricately linked to the overall quality of life of this population. Students with epilepsy struggle with low academic achievement that doesn’t improve even if their condition improves, social stigma that creates a learning environment that promotes anxiety and worry of being accepted, and the medication they take to control their seizures often have side effects that predispose them to comorbid conditions such as anxiety or depression that decrease their life satisfaction and overall quality of life. Without further research, this population will continue to struggle through adolescence. The profession of occupational therapy can address and analyze the context and the environment to make a difference in the success of this population in order to maximize their occupational engagement now and in the future. This proposed study will contribute to existing literature and help explore a potential solution to help this population succeed and provide encouragement for them to be productive members of society that engage in meaningful occupations every day.
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