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A pilot study to assess a teaching intervention to improve sleep-wake disturbances in parents of children diagnosed with epilepsy.

ABSTRACT

Aims: The aim of this study was to assess the impact of screening and teaching interventions for sleep-wake disturbances in parents of childhood patients with epilepsy. Methods: This was a prospective, descriptive study using convenience sampling. After informed consent was obtained from eligible parents who agreed to participate, study questionnaires were administered. All parents were provided with an individualized teaching intervention. Study tools were readministered 8-12 weeks later to evaluate if the individualized teaching intervention altered or improved sleep-wake disturbances. Results: The f value for the paired f test of the Epworth Sleepiness Scale prescore and postscore was 0.000 with a two-tailed probability value of 1.000, and the f value for the paired f test of the Pittsburgh Sleep Quality Index prescore and postscore was 0.713 with a two-tailed probability value of .492, indicating no significant difference between pre and post Epworth Sleepiness Scale or Pittsburgh Sleep Quality Index scores. Conclusions: A sleep hygiene teaching intervention for parents of children with epilepsy was not effective in this setting of an inner-city epilepsy monitoring unit in changing postintervention scores on measures of both nighttime sleep quality and daytime sleepiness. These results must be interpreted with caution secondary to the small number included in the initial phase of this study. A larger number of participants will be needed to verify these findings. If the results remain consistent with a larger number, studies evaluating variables of cause may be helpful to determine more effective interventions.

Keywords: parental sleep, pediatric epilepsy, SUDEP

Background

According to the Centers for Disease Control (CDC), 467,711 (0.5%--1%) children aged 0-17 years have epilepsy (Child and Adolescent Health Measurement Initiative, 2007). The physiological and psychological impact of sleep-wake disturbances in children with epilepsy has been well studied and documented (Batista & Nunes, 2007; Holley et al., 2014; Rodriguez, 2007; Stores, 2013; Stores, Wiggs, & Campling, 1998; Wirrell, Blackman, Barlow, Mah, & Hamiwka, 2005; Wirrell & Turner, 2001). The impact of a child's epilepsy and the sequelae of the disease on their parents/caregivers, particularly related to sleep-wake disturbances, has also been studied, but there are limited data published regarding this topic.

The need for assessment of sleep even among the healthy adult population is significant. Among a population-based study of adults, the prevalence of insufficient sleep was 20.4%. Furthermore, 44% continued to have insufficient sleep 9 years later. Although insufficient sleep is not always equitable with poor sleep quality, it does make sense that those with poor sleep quality experience insufficient sleep. Where one third of this sleep insufficiency was attributed to genetic factors, two thirds of it was not (Hublin, Kaprio, Partinen, & Koskenvuo, 2001).

Altered sleep quality (caused by either sleep hygiene alteration or from a sleep disorder) can cause both acute and chronic physical and cognitive longterm deficits to the human body, reducing the ability of the parent to provide the highest quality of care to their child. Sleep disturbances are also associated with physical problems including the impairment of metabolic dysfunction (Lam & Ip, 2010; Spiegel, Leproult, & Van Cauter, 1999), immune response (Dinges et al., 1994; Spiegel, Sheridan, & Van Cauter, 2002), and cardiovascular function (Chandola, Feme, Perski, Akbaraly, & Marmot, 2010; Kripke, Garfinkel, Wingard, Klauber, & Marler, 2002). The additive physical ailments coupled with the provision of constant care to an epileptic child have the potential to create a never ending cycle of poor sleep quality and deteriorating health. In addition, Van Dongen, Maislin, Mullington, and Dinges (2003) showed that cognitive performance after chronic restriction of 4-6 hours of sleep per night over 14 consecutive days produced cognitive performance deficits equivalent of up to two nights of total sleep deprivation. Consequently, this moderate amount of sleep restriction may have serious waking neurobehavioral impairments. Borbely's two-process model of sleep-wake regulation (Borbely, 1982) helps explain the resulting increased sleepiness and reduced attention, cognitive speed, response time, short-term memory, and ability to leam (Durmer & Dinges, 2005) when the homeostatic drive is increased because of either acute or chronic sleep alterations. This two-process model of sleep regulation (Borbely, 1982) is helpful in understanding the basic physiology of sleep because the model shows the physiological relationship between process S and process C, which describe the two major phases of sleep (non-rapid eye movement and rapid eye movement). Process S is the homeostatic process and is considered the basic mechanism of sleep regulation. While awake, process S increases, increasing the need for sleep. While asleep, process S decreases, decreasing the need for sleep. Accordingly, if a deficiency of sleep occurs, there is a compensatory rise in process S, driving the body to increase the duration and intensity of the next sleep cycle. The circadian process is represented by process C. The circadian process is the "body clock" that determines the propensity of the need for more or less sleep and is independent of prior sleep duration and intensity. The mechanism that aids the body in remaining asleep is controlled by process C. If the counterbalance of process S and process C is upset, the amount of sleep needed, when the sleep occurs, and the ability to stay awake may be detrimentally effected. The basic knowledge of this process and relationships are essential in the understanding of the underlying concept of this research.

Sleep disturbances, which may include sleep deprivation, sleep fragmentation, and sleep pattern disruptions, can lead to dire consequences. The significant increase in risk of mortality, heart attacks, vehicular accidents, performance errors, and industrial engineering disasters is widely recognized sequelae of sleep disturbances disruptions (Akerstedt & Haraldsson, 2001; Mitler et al., 1988). Although the ramifications of sleep disturbances on society as a whole are grave, the effects of disturbed sleep on the family unit may be devastating. Any alteration in either a parent or child's sleep will have negative reciprocal effects. More specifically, disrupted sleep in a child will have a deleterious impact on parental sleep, adversely influencing the caregiver's daytime function and performance (Meltzer & Montgomery-Downs, 2011). This relationship between sleep disturbances in children and the consequent sleep disturbances in parents is exacerbated when the child has a chronic illness. It not only adversely affects the daytime physical function and performance in the parent but also directly affects their social and emotional function as well, unequivocally influencing the interaction and relationship with the child (Meltzer & Mindell, 2006; Moore, David, Murray, Child, & Arkwright, 2006; Yilmaz et al., 2008). This can lead to the potential for further disrupted sleep in the child, creating a vicious cycle of sleep deprivation in the family. According to Meltzer and Mindell (2006, p. 1754), "it is essential to monitor the sleep, health, and well-being of caregivers of patients with chronic health conditions." Viewed in combination with clinical practice expertise and the potential for catastrophic consequences on a community level and serious negative impact on families, there is persuasive evidence that warrants further investigation and identification of valid and reliable screening and interventional methods. The purpose of this pilot study was to determine if the use of screening tools, in combination with an individualized educational intervention, would improve sleep-wake disturbances among parents with children diagnosed with epilepsy.

Literature Review

A systematic review of the current literature was conducted to identify relevant information related to seizure activity and its relationship to the sleep-wake state and sleep quality in parents of children with epilepsy and risk of death or serious injury from a seizure during sleep.

There is a recognized relationship between the sleep--wake state, the time of day, and seizure occurrence (Kothare & Zarowski, 2011). A review of sleep, epilepsy, and electroencephalographic (EEG) findings in infancy and childhood (Donat & Wright, 1989) concluded that the transition from the sleep to wake or wake to sleep state is the most common period for a lowered seizure threshold in most of the major epileptic syndromes in infants and children, and more recent studies have also reinforced that wakefulness and sleep are more important predictors of seizure timing than day or night (Kaleyias et al., 2011; Loddenkemper et al., 2011; Loddenkemper, Wyllie, & Hirsch, 2012; Ramgopal, Shah, et al., 2012; Ramgopal, Vendrame, et al., 2012; Zarowski et al., 2011). With the advent of extended video EEG monitoring and the increased knowledge of seizure identification by parents, the ability to track seizure occurrence and severity is improving. As more information is acquired, the association between seizure type, occurrence, and severity and circadian rhythm is being closely evaluated.

Epilepsy is considered a relatively common disorder of childhood (Shinnar & Pellock, 2002), and there is ample documentation regarding the parental perception regarding the risk of mortality during an acute seizure event, with many parents believing that their child was either dying or likely to die (Balslev, 1991; Baumer, David, Valentine, Roberts, & Hughes, 1981; Parmar, Sahu, & Bavdekar, 2001). This frightening appearance, in addition to inaccurate information in regard to sudden death in epilepsy (SUDEP), may lead parents to avoid leaving their child unattended, especially at night, although the real risk of sudden death is quite low. According to several population-based studies, the risk of SUDEP in children is approximately 1 in 10,000 patient years (Callenbach et al., 2001; Camfield, Camfield, & Veugelers, 2002; Donner, Smith, & Snead, 2001; Harvey, Nolan, & Carlin, 1993; Nickels, Grossardt, & Wirrell, 2012), although one study identified that 30% of deaths in children with epilepsy were attributable to SUDEP (Sillanpaa & Shinnar, 2010). Although the cause of SUDEP is not clearly defined, asystole and respiratory arrest are the primary suspects. Because the causes of epilepsy in children differ from those in adults, risk factors for SUDEP must be considered independently and occur most in pediatric patients with generalized tonic-clonic seizures, a high seizure frequency, lack of 5-year terminal remission, remote symptomatic epilepsy, presentation of status epilepticus at initial diagnosis, and a neurologic deficit (Callenbach et al., 2001; Donner et al., 2001; Harvey et al., 1993; Nickels et al., 2012; Sillanpaa & Shinnar, 2010). Langan, Nashef, and Sander (2005) also found that a history of generalized tonic-clonic seizures in the 3 months before a SUDEP death increased the risk, but most importantly, the study showed that nighttime supervision by an individual who shared the bedroom or when devices such as audio monitors were utilized helped to protect against this risk.

The recognition of the potential for sleep disturbances in parents of children with epilepsy is relatively recent. Balslev (1991) first noted that 60% of parents considered their sleep "restless" in a follow-up investigation of parental reactions to a child's first febrile seizure, but it was not until Williams et al. (2000) followed with a cohort trial of a group of 179 parents of epileptic children and a group of 155 parents of diabetic children that documented comparative changes in sleeping arrangements in these families. In this study, the sleeping arrangements of both groups was compared by demographics, medical condition, and sleeping arrangements. The parents of children with epilepsy were found to be more likely to worry about the occurrence of nighttime seizures more than parents of children with diabetes worried about their nighttime glycemic control. In addition, in those parents with epileptic children who showed less independent sleeping arrangements (either sleeping in the parents' room or sleeping in the parents' bed), the prime reason given was because of the fear of seizures, although the clinical severity of the seizures did not directly correlate with the children who moved to more dependent sleeping arrangements. Although not statistically significant, a clinically significant finding was that parents who perceived their children's seizures to be under better control were less likely to move toward less independent sleeping arrangements. Significantly, children with epilepsy were three times more likely to move to less independent sleeping arrangements than the children with diabetes. The age of the child and the duration of their epilepsy were not found to be statistically or clinically significant to the problem. The researchers hypothesize that the frightening appearance of seizures may worsen parental anxiety and increase parents' perceptions of the child's vulnerability during a seizure. Recommendations include consideration of nocturnal monitoring devices, increased parental education regarding seizure risks, and referral to parental support groups.

In a study that utilized a sample of 31 parents of children experiencing their first febrile seizure of childhood (Wirrell & Turner, 2001), parents were asked to compare the 2 weeks before the seizure with the 2 weeks after the seizure. Measures of co-sleeping, parental sleep problems, parental fatigue, and perception of the child's vulnerability were all increased to the level of statistical significance, although it must be noted that there were multiple limitations of this research protocol. In another study that utilized a convenience sample of 50 parents of children with epilepsy (Cottrell & Khan, 2005; Wirrell & Turner, 2001), sleep patterns were evaluated descriptively, and the relationship between parental sleep problems and parental adjustment was evaluated. Multiple measures were used including the Beck Depression Inventory, the Dyadic Adjustment Scale, the Pittsburgh Sleep Quality Index (PSQI), and the RAND Health Survey. Findings indicated that parents of children with epilepsy have fewer hours of sleep and more interrupted sleep. Importantly, the study was able to strongly relate parental sleep disruption and poor parental social, emotional, and physical function. Recommendations include endorsements for clinical interventions that educate, prevent, and intervene in mothers of children in epilepsy, with the goal of improving their own healthcare, the child's healthcare, and public health issues as a whole. The study also advised that larger, more methodological rigorous research should be performed. Shaki, Goldbart, Daniel, Fraser, and Shorer (2011) were able to support these overall findings when they evaluated sleep disturbances in a cohort of parents of epileptic children against a cohort of parents of nonepileptic children. Each group of parents was administered the PSQI, a subjective self-administered questionnaire that measures nighttime sleep quality, that reflected the month before participation in the study. Severe disturbances in sleep duration and sleep quality were noted in mothers of children with epilepsy. These sleep disturbances were not dependent or correlated with the severity of the epilepsy or the time since the last seizure and were more significant in the mothers' than on the fathers' sleep. The findings strongly support screening all parents of children with epilepsy for tactics to improve sleep disturbances, providing individualized teaching interventions that include awareness of nighttime seizure risk, general information regarding proper sleep hygiene, and recommendations and targeted strategies specific to the child's seizure disorder.

In a case-controlled study, Larson et al. (2012) studied 105 families with children with epilepsy who were controlled against 79 families with children without epilepsy. Written questionnaires regarding seizure history, child and parental sleep, and household sleeping arrangements were utilized as well as the Children's Sleep Habit Questionnaire, the PSQI, and the Iowa Fatigue Scale. Significant findings included that households with children with epilepsy had an increased rate of parent and child room sharing and co-sleeping as compared with the control group. Children with epilepsy had greater sleep disturbances, and parents of children with epilepsy had greater sleep dysfunction and fatigue. The severity of the epilepsy correlated with the degree of both the child's and the parent's sleep dysfunction and the parental fatigue. Parental sleep problems were worse when the child had nighttime seizures, and 44% of the parents reported feeling rested either rarely or never, and 62% of the parents described reduced sleep quality and/or quantity with co-sleeping. The authors recommend heightened vigilance to the problem of sleep in not only the child with epilepsy but also the household. The findings confirm the necessity for the development of nighttime seizure monitoring technology and improved seizure treatments.

Setting and Methods

The purpose of this study was to assess the impact of screening and teaching interventions for sleep-wake disturbances in parents of childhood epilepsy treatments. This was an interventional, prospective pilot study using a convenience sample of 12 parents (aged 18 years and above) of pediatric patients who had been admitted for Phase I monitoring into an inpatient pediatric epilepsy monitoring unit (EMU) for extended video EEG. Inclusion criteria were as follows: (a) identified self as child's primary caregiver, (b) were able to read and understand English, and (c) were able to give consent according to institutional guidelines. Approval as an expedited study was granted through two institutional review boards.

Initial participant contact occurred through an introductory visit detailing study eligibility, purpose, and plan during the child's EMU evaluation. Informed consent was obtained from eligible parents who agreed to participate in the study by the study author. For baseline information, participants were given three questionnaires. To assess participants' sleep-wake disturbance, the Epworth Sleepiness Scale (ESS) and PSQI questionnaires were used. Assessment of the parents' perceived seizure severity in their child and the relationship to the presence or absence of a parental sleep--wake disturbance was obtained using the Parent Perception of Childhood Epilepsy (PPCE) questionnaire. Demographic and descriptive data were collected to determine if specific factors were related to sleep-wake disturbances in participants. These included age, gender, race/ethnicity, household income, age of child with epilepsy, number of children in the household, and sleeping arrangements (based on the last 2 months) regarding where the child sleeps and where the parent sleeps.

The ESS (Johns, 1992) was utilized to screen for daytime sleepiness. A cutoff score of 10 or greater was used to define significant daytime sleepiness. The ESS is an eight-item self-administered questionnaire utilized to measure daytime sleepiness in adults. It rates the probability of falling asleep on a scale from 0 to 3 in eight different situations. A total score of 0-9 is normal, whereas a score of 10 or greater indicates significant sleep dysfunction. It takes approximately 5 minutes to answer. The ESS has been validated in obstructive sleep apnea through the measurement of excessive daytime sleepiness. Test-to-test reliability was shown to be high in both a group with no sleep disturbances who was tested and then retested at a later date and also a group with obstructive sleep apnea syndrome who was tested at baseline and then retested after an intervention with continuous positive airway pressure with a correlation score of r = .82. Internal consistency of the items in the questionnaire was high with a Cronbach's alpha of .8 (Johns, 1992).

The PSQI (Buysse, Reynolds, Monk, Berman, & Kupfer, 1989) was utilzed to screen for nighttime sleep quality as affected by behavioral and medical conditions. The PSQI is a self-administered sleep questionnaire that is designed to measure sleep quality in clinical populations. Specifically, participants self-rate sleep quality and disturbances over a 1-month period. It consists of 19 questions in seven categories. Seven major components are measured: (a) subjective sleep quality, (b) sleep latency, (c) sleep duration, (d) habitual sleep efficiency, (e) sleep disturbances, (f) use of sleep medication, and (g) daytime dysfunction. These component scores are added together to produce a global score. Total scoring ranges between 0 and 21, with 0 indicative of no difficulty with sleeping and 21 indicative of severe difficulties in all areas. Group comparison of healthy and depressed patients showed a high degree of internal consistency measured at .83, and overall reliability was measured at .85 for global PSQI. The ability of the tool to consistently discriminate between healthy and depressed patients supports its validity. Specifically, psychometric evaluation of the PSQI in a population of patients supports internal consistency, reliability, and construct validity with a Cronbach's alpha of .80 across groups. A score of 5 or greater yields a diagnostic sensitivity of 89.6% and specificity of 86.5%, distinguishing between good and poor sleepers (Buysse et al., 1989). A cuttoff score of 5 or greater was used to define poor nighttime sleep quality.

The PPCE (Ryan, Speechley, Levin, & Stewart, 2003) was administered to all study participants at baseline to assess the parent's perception of the severity of the seizures and impact of the epilepsy on the family to help in determining the relationship between the presence of a sleep-wake disturbance and the parent's perception of the severity of the child's childhood epilepsy. This salient portion of this questionnaire was created as an adaption of previous instruments (Carpay et al., 1996; Jacoby, 1995a, 1995b) because there were no validated instruments available that examined perceptions of parents in regard to their children's seizures. Questions were developed based on review of literature, discussion with topic experts, and interviews with parents of children with epilepsy. Content and face validity was assessed by expert and parent critique and revised accordingly. Seventy-six questions included medical aspects of seizures (42 questions) regarding type, frequency, severity, unpredictability, control, side effects, and concerns regarding antiepileptic medications and comorbid health conditions and day-to-day aspects of seizures (34 questions) including changes in behavior, worry regarding limitations, effect on relationships, activity restrictions, school coping and absenteeism, effects on the child and family function, and healthcare support. Kappa values of test-retest reliability were 0.67 for the seven medical variables, 0.69 for the 12 day-to-day variables, and 0.63 for the variable concerning the overall impact of the seizures on the child and on the family. Intraclass correlation coefficients were -.73 to + 1.00 for all continuous variables, indicating good preliminary evidence of reliability (Ryan et al., 2003). Questions were evaluated independently and assessed with sleep indication scores for correlations.

Appropriate permissions were obtained to utilize the tools. The study author administered and/or provided appropriate directions for self-administration for each questionnaire. All study data were entered into the prepared database by the study author, and quality improvement was performed on all of the data at routine intervals.

Once baseline data were collected, participants were provided with an individualized teaching intervention, even if there were no active sleep-wake disturbances identified on the screening tools. These interventions included (a) targeted instruction regarding the occurrence and pattern of seizures in sleep because it pertained to their child's seizure diagnosis (seizure type and semiology and risk for SUDEP) and (b) instructions for sleep hygiene measures, which took into account the current sleep habits and parental social support. Examples of this instruction included recommendations for independent or co-sleeping (i.e., separate or individual rooms or sleeping surfaces), the use of assistive technology (i.e., video and audio monitors or seizure monitoring devices), and sleep hygiene measures (i.e., establishing a good nighttime routine, use of the bedroom for sleep and intimacy only, limiting caffeine after noon, etc.; see Figure 1). For example, recommendations for a parent with an 8-year-old with a generalized seizure disorder who has experienced multiple prolonged nighttime seizures with associated respiratory disturbance would include co-sleeping in the same room on separate surfaces, whereas recommendations for a parent with an 8-year-old with a partial complex seizure disorder, with no history of secondary generalization, that occurs primarily in the daytime would include separate sleeping rooms with possible consideration for an audio monitor.

Questionnaires that assessed for sleep-wake disturbances (EES and PSQI) were readministered 8-12 weeks after the individualized teaching intervention. SPSS, Version 22, was utilized for data computation and analyses. Data from each of these questionnaires were analyzed using a paired t test to evaluate if intervention with screening tools and an individualized teaching intervention positively altered or improved identified sleep-wake disturbances. Crosstabs utilizing the McNemar's test were used to assess for change in pre and post ESS questionnaire significance. Demographic data were analyzed using descriptive statistics. The Mann-Whitney U statistic was utilized to assess if there was a difference in the parent's perception of the severity of their child's seizure disorder (using data from the PPCE) between those with or without parental sleep disturbance (using data from the ESS and PSQI).

Theoretical Underpinnings

Ernestine Wiedenbach's "Prescriptive Theory" as a concept of "The Helping Art of Clinical Nursing" (Wiedenbach, 1963, 1970) is described as the theoretical underpinning of this research study. The key tenets applicable to this model include the nurse's (a) philosophy, (b) purpose, (c) practice, and (d) art. The nurse's philosophy is his or her beliefs and attitudes toward the reality of life, in particular, his or her reverence for life, respect for the individual, and resolution to act on his or her personal and professional beliefs. The nurse's purpose is what he or she wants to achieve through his or her practice and encompasses all of his or her goal-directed activities that are aimed at providing for the overall good of the patient. The practice is the measurable actions performed by the nurse, which are directly influenced by his or her philosophy regarding his or her place and ability in meeting the patients' need for help. The art particularly emphasizes preventive care and focuses on understanding patient needs and concerns, developing interventions to aid the patient's ability for self-care, and directing the overall plan to improve the patient's condition. The patient is defined as any person who is receiving help or care, including any type of instruction from the nurse, and the need for help is defined by the patient as any activity that may improve their ability to cope with any situation that affects their health and wellness. It is imperative to the theory that the need for help be based on the patient's own perception of the need. The "Prescriptive Theory" is based on three factors: (a) the central factor, as recognized by the nurse; (b) the "prescription" that will fulfill the central purpose; and (c) the realities that affect the immediate circumstances of the central purpose.

Explicit to this research, the patient is identified as the parent of the child with epilepsy. The need for help will be assessed by screening for nighttime sleep quality and excessive daytime sleepiness by the PSQI (Buysse et al., 1989) and ESS (Johns, 1992), respectively, which will evaluate the presenting behaviors or symptoms and help to determine the cause of the symptoms. The patient's perceptions regarding their child's seizure severity, frequency, and pattern will be assessed through the use of the PPCE (Ryan et al., 2003), exploring the meaning of these symptoms to the patient and determining the relationship between the presence of a sleep-wake disturbance and the parent's perception of the severity of the child's childhood epilepsy. Collection and assessment of this information, viewed as a whole, will be utilized to provide the patient with an individualized teaching intervention regarding the physiological and psychological need for sleep, sleep hygiene measures, nighttime seizures specific to their child, and behaviors and goals specific to the patient's current realities, to include support and belief systems.

Results

The evaluation of the assessment and description of the change in sleep-wake disturbances among a convenience sample of 12 parents with children with epilepsy after screening and a sleep hygiene teaching intervention compared preintervention and postintervention ESS and PSQI scores utilizing the paired t test. The paired t test was utilized because the data were normally distributed. The pretest ESS mean was 10.58, and standard deviation was 3.825. The posttest ESS mean was 10.58, and standard deviation was 4.738. The pretest PSQI mean was 10.55, and standard deviation was 3.751. The posttest PSQI mean was 10.09, and standard deviation was 3.618. The t value for the paired t test of the ESS prescore and postscore was 0.000 with a two-tailed probability value of 1.000, and the t value for the paired t test of the PSQI prescore and postscore was 0.713 with a two-tailed probability value of .492. These results show no significant difference between pre and post ESS or PSQI scores, consequently indicating that the teaching intervention had no significant impact on postintervention scores of daytime sleepiness or nighttime sleep quality. Prescore and postscore were dichotomized to "yes" and "no" indicating the presence or absence of a sleep disorder (10 and above for the ESS and 5 and above for the PSQI; Buysse et al., 1989; Johns, 1992). Crosstabs utilizing the McNemar's test were used to assess for change in pre and post ESS questionnaire significance. Again, there was no significant change noted in preintervention and postintervention ESS scores with a two-sided probability value of 1.000. The dichotomized PSQI scores could not be assessed utilizing the crosstab method because of the absence of variability of the preintervention PSQI scores; all scores were dichotomized as yes, indicating the presence of poor nighttime. Whether there was a difference in the parent's perception of the severity of their child's seizure disorder between those with or without parental sleep disturbance was assessed using the Mann-Whitney U statistic. Again, cutoff scores of 5 and above (Buysse et al., 1989) and 10 and above (Johns, 1992) were utilized as positive indicators for the ESS and PSQI, respectively. The values were then categorized as positive (yes) or negative (no) for poor nighttime sleep quality and daytime sleepiness and were evaluated to assess the relationship of the perceived severity level of question A7 on the Parental Perception of Seizures Questionnaire (In your opinion, how severe is your child's epileptic seizure condition overall?). The Mann-Whitney U test showed that there was no relationship between the parent's perceptions of their child's seizure severity and parental daytime sleepiness (p = .375). Because there was no variability in the baseline PSQI scores (all parents showed poor sleep quality), it is not possible to report any type of relationship between these two variables. Results are attached in Table 1.

Descriptive statistics were utilized to assess the mean, median, mode, range, and percentage frequencies of the factors associated with sleep-wake disturbances in parents of children with epilepsy. Results are attached in Table 2. Percentage frequencies were utilized to assess questions on the PPCE questionnaire. Pertinent results are attached in Table 3.

Discussion

Although the results are clear that the provision of a teaching intervention of sleep hygiene for parents of children with epilepsy is not effective in this setting of an inner-city EMU in changing postintervention scores on measures of both nighttime sleep quality and daytime sleepiness, these results must be interpreted with caution secondary to the small number included in the initial phase of this study. Taken in perspective, however, although these results are disappointing, they are not that surprising. Seventy-five percent of the participants reported that their child experienced generalized tonic and/or clonic seizures; 25% considered the nature of these to be very severe, 33% considered the nature of these to be severe, and 16.7% considered the nature of these to be moderate. These findings would seem to support the basic premise of this study that SUDEP and its relationship to nighttime sleep would be the most major variable affecting nighttime sleep quality and subsequent daytime sleepiness. However, whereas 75% of parents considered the life-threatening nature of their child's epilepsy as a significant worry, only 25% considered it their most major worry. The overall impact of the entire experience of their child's epileptic seizures was considered extremely significant by 66.7% of the parents, and 58.3% of the children had other long-term problems or illnesses that interfered with everyday activities, pointing toward a more multifactorial nature of problems, indicating that many of the variables may be fixed or resistant to change with simple behavioral interventions.

Most concerning is that ratings of sleepiness by these impaired subjects suggested lack of personal awareness of these deficits and overestimating personal readiness, most likely explaining why sleep deprivation may be considered benign. This may help explain why, when 100% of the preintervention PSQI scores and 83% of the postintervention PSQI scores were positive for poor sleep quality, only 58% of the participants reported significant daytime sleepiness both preintervention and postintervention. This lack of personal awareness of sleep deficit may also explain why 33% of parents showed higher PSQI scores on postintervention testing as compared with baseline testing; participation in the study may have caused the participants to examine their sleep pattern and quality more closely. Unfortunately, these sleep alterations have multiple costs to society in the form of human error because of sleepiness and/or fatigue as well as increased costs of healthcare. These risks to society may be catastrophic or individual in nature but are significant in either way.

Proposed interventions for sleep deficit awareness and treatment in the general population include public education regarding the risks of inadequate sleep, proposed feedback mechanisms such as personal feedback monitors that log events associated with fatigue, the utilization of preplanned naps, and the rational use of caffeine and bright light to promote daytime alertness. As shown by this small study, it may be difficult or inappropriate to reassure parents whose children do have greater risks of nighttime seizures, especially those with generalized clonic-tonic seizures or who may have other safety concerns (fall risk, accident risk) if not directly supervised. Education alone may not be helpful because of the shown lack of personal awareness of their true level of sleepiness. Even if the parents were provided an objective measure of their level of fatigue and sleepiness, their options for around-the-clock monitoring of their child may be limited by lack of resources that would allow them to increase their quality and quantity of sleep. Cosleeping in the same room but on different bed surfaces may also be considered a potential intervention that allows the parent the ability to be present with the child in case of a seizure but not be woken by small or insignificant sleep movement of the child. Specific to this population, other innovative interventions may include the use of video monitors, audio monitors, or technologies such as bracelet or bed monitors. The utilization of respite care or seizure-alert dogs may also be reasonable considerations.

All parents with children with epilepsy in this innercity EMU setting showed scores indicative of poor sleep quality on the baseline PSQI, and 58% of those parents also showed daytime sleepiness, confirming that sleep alteration and its consequences of increased accidents and poor physical health should be a significant societal concern in this population. A larger number of participants will be needed to verily this finding as well as the finding that a simple sleep hygiene teaching intervention was not effective in improving the parental sleep quality and daytime sleepiness. If the results remain consistent with a larger number, studies evaluating variables of cause may be helpful to determine more effective interventions.

Implications for Practice

The results of this small pilot study indicate that sleep-wake disturbances are a significant problem in parents with children with epilepsy. This significant public health issue may be multifactorial in nature, and many of the variables may be fixed or resistant to change with simple behavioral interventions. Parents may show lack of personal awareness of a sleep deficit, which imposes multiple costs to society in the form of human error because of sleepiness and/or fatigue as well as increased costs of healthcare. These risks to society may be catastrophic or individual in nature but are significant in either way. Proposed interventions for sleep deficit awareness and treatment in the general population include public education regarding the risks of inadequate sleep, proposed feedback mechanisms such as personal feedback monitors that log events associated with fatigue, the utilization of preplanned naps, and the rational use of caffeine and bright light to promote daytime alertness. It may be difficult or inappropriate to reassure parents whose children do have greater risks of nighttime seizures, especially those with generalized clonic-tonic seizures or who may have other safety concerns (fall risk, accident risk) if not directly supervised. Education alone may not be helpful because of the shown lack of personal awareness of their true level of sleepiness. Other innovative interventions may include the use of video monitors, audio monitors, or technologies such as bracelet or bed monitors. The utilization of respite care or seizure-alert dogs may also be reasonable considerations. Although further studies that incorporate multiple settings and larger samples are certainly indicated to further explore this topic, the recognition and assessment of this problem should be incorporated into the standardized care plan of each child with epilepsy, and individualized and innovative techniques should be devised that meet the needs of the child with epilepsy, their parent, and the community as a whole.

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Questions or comments about this article may be directed to Davonna Ledet, DNP FNP-BC, atdledet@uthsc.edu. She is a Nurse Practitioner, Division of Pediatric Neurology, Department of Pediatrics, University of Tennessee LeBonheur Pediatric Specialists, Memphis, TN.

Christina Aplin-Kalisz, DNP FNP-BC, is a Lecturer, Department of Nursing, University of Michigan-Flint, Flint, MI.

Marilyn Filter, PhD CNM, is an Assistant Professor, Department of Nursing, University of Michigan-Flint, Flint, Ml.

Paula Dycus, CPFiQ NEA-BC DNP, is an Administrative Director of Professional Practice and Research, Department of Professional Practice & Research, LeBonheur Children's Hospital, Memphis, TN. The authors declare no conflicts of interest.

DOI: 10.1097/JNN.0000000000000179
TABLE 1. Statistical Results

                                    Standard
                            Mean    Deviation   t Value

Pretest ESS                 10.58     3.825
Posttest ESS                10.58     4.738
Pre- and post-ESS paired                         0.000
  t test
Pretest PSQI                1.55      3.751
Posttest PSQI               10.09     3.618
Pre- and post-PSQI paired                        0.713
  t test
Pre- and post-ESS change
  significance
Difference in the
  parent's perception of
  the severity of their
  child's seizure
  disorder comparing
  parents with and
  without sleep
  disturbances

                                          Crosstabs
                            Two-Tailed    Utilizing
                            Probability   McNemar's     MannValue
                               Test      Whitney U

Pretest ESS
Posttest ESS
Pre- and post-ESS paired       1.000
  t test
Pretest PSQI
Posttest PSQI
Pre- and post-PSQI paired      .492
  t test
Pre- and post-ESS change                    1.000
  significance
Difference in the                                     p = .375
  parent's perception of
  the severity of their
  child's seizure
  disorder comparing
  parents with and
  without sleep
  disturbances

Note. ESS = Epworth Sleepiness Scale; PSQI = Pittsburgh
Sleep Quality Index.

TABLE 2. Descriptive Statistics Associated With Sleep-Wake
Disturbances in Parents of Children With Epilepsy

                                Standard
                        N       Deviation          Minimum

Child age (in months)   12       60.652               26
Child age at first      12       44.568               0
  seizure (in months)
Most recent seizure     12       60.240               26
  (in months)
Parent age (in years)   12        6.621               25
Number of children in   12        1.913               1
  the household
Parent gender                     Male              Female
                        12          1                 11
Household income             $30,000-$39,999   $60,000-$69,000
                        11         27%               36%
Sleeping                     Alone in his      Alone in his
  arrangements               or her room       or her bed
Child                   12   No = 100%         No = 67%
                             In your own bed   In your own room

Parent                  12   No = 50%          No = 58%

                        N        Maximum             Mean

Child age (in months)   12         200              101.08
Child age at first      12         145              40.08
  seizure (in months)
Most recent seizure     12         198              100.83
  (in months)
Parent age (in years)   12         49               35.75
Number of children in   12          8                3.25
  the household
Parent gender
                        12
Household income             $80,000-$89,000   $100,000 or more
                        11         9%                27%
Sleeping                     Shares a bed      Shares a room
  arrangements               with a sibling    with a sibling
Child                   12   No = 100%         No = 83%
                             Share a bed       Share a room
                             with a spouse     with a spouse
Parent                  12   No = 25%          No = 75%

                        N      Median          Mode

Child age (in months)   12       87             26
Child age at first      12      20.50           18
  seizure (in months)
Most recent seizure     12       87             26
  (in months)
Parent age (in years)   12      36.50           37
Number of children in   12        3             3
  the household
Parent gender
                        12
Household income
                        11
Sleeping                     In bed with   In room with
  arrangements               parents)      parents)
Child                   12   No = 67%      No = 92%
                             In bed with   In room with
                             child         child
Parent                  12   No = 67%      No = 100%

TABLE 3. Factors Associated With Sleep-Wake Disturbances in Parents of
Children With Epilepsy

                            N

Child gender                12   * Boy (n = 4), 33.3%
                                 * Girl (n = 8), 66.7%

Is your child currently     12   * Yes (n = 12), 100%
having epileptic
seizures?

Approximately how           12   * Less than one per month
frequently has your child          (n = 2), 16.7%
had epileptic seizure in         * One or more per month
the past year?                     but less than one
                                   per week (n = 1), 8.3%,
                                 * One or more per week (n = 3), 25%
                                 * One or more per day (n = 6), 50%

In your opinion, how        12   * Very severe (n = 2), 16.7%
severe is your child's           * Severe (n = 4), 33.3%
epileptic seizure                * Moderate (n = 6), 50%
condition overall?

What type of seizures       12   * Partial (n = 7), 58.3%
does your child have?            * Generalized tonic and/or
                                   clonic (n = 9), 75%
                                 * Absence (n = 9), 75%

How severe do you think     12   Myoclonic and/or atonic (n = 5),
this type of epileptic             41.7%
seizure usually is?              Partial
                                 * Very severe (n = 0), 0%
                                 * Severe (n = 0), 0%
                                 * Moderate (n = 4), 33.3%
                                 * Mild (n = 1), 8.3%
                                 * Very mild (n = 2), 16.7%
                                 * NA (n = 5), 41.7%

                            12   Generalized tonic and/or clonic
                                 * Very severe (n = 3), 25%
                                 * Severe (n = 4), 33.3%
                                 * Moderate (n = 2), 16.7%
                                 * Mild (n = 0), 0%
                                 * Very mild (n = 0), 0%
                                 * NA (n = 3), 25%
                                 Absence
                                 * Very severe (n = 0), 0%
                                 * Severe (n = 1), 8.3%
                                 * Moderate (n = 1), 8.3%
                                 * Mild (n = 4), 33.3%
                                 * Very mild (n = 2), 16.7%
                                 * NA (n = 4), 33.3%
                            12   Myotonic and/or atonic
                                 * Very severe (n = 0), 0%
                                 * Severe (n = 1), 9.1%
                                 * Moderate (n = 0), 0%
                                 * Mild (n = 3), 27.3%
                                 * Very mild (n = 0), 0%
                                 * NA (n = 7), 63.6% (continues)

How well do you think       12   * Very well controlled (n = 1), 8.3%
your child's epileptic           * Fairly well controlled (n = 4),
seizures are controlled            33.3%
by the medication they           * Not very well controlled (n = 5),
take?                              41.7%
                                 * Not at all well controlled (n = 2),
                                   16.7%

Apart from epileptic        12   * No (n = 5), 41.7%
seizures, does your child        * Yes (n = 7), 58.3%
have any other long-term
health problems or
illnesses that interfere
with everyday activities?

Has your child's overall    8    * The epileptic seizures
health been impacted more          (n = 6), 75%
by the epileptic seizures        * Not sure (n = 2), 25%
or other health problems?

In general, how would you   12   * Excellent (n = 2), 16.7%
describe your child's            * Very good (n = 4), 33.3%
health?                          * Good (n = 6), 50%

FIGURE 1 Individualized Teaching Intervention Tool

General Sleep Hygiene
Helpful Tips

Personal Habits

* Go to bed at the same time each
night and get up at the same time
each morning

* Avoid daytime napping

* Avoid caffeine, nicotine, alcohol
and spicy foods at least 4-6 hours
before bedtime

* Exercise on a regular basis, but
avoid exercise at least 2 hours
before bedtime

Your Sleeping Environment

* Make your bed and bedroom a
comfortable place to be

* Block out distracting noises and
lights

* Your bed should only be used for

* Sleep

* Sickness

* Intimacy

* All other activities should
stay outside the bedroom

Getting Ready for Bed

* Go to bed only when you feel
sleepy

* If you can't get to sleep and you
are getting frustrated, get out of
bed and engage in a relaxing
activity

* Eat a little snack before bedtime

* Try some relaxation techniques
before bed

* Don't watch the clock

* Use sunlight to set your internal
clock

* Have a bedtime routine

* Leave your worries outside of your
bedroom door

* Take a warm bath 1.5 to 2 hours
before bedtime

Talk With Your Doctor if:

* You think you may have health
problems like depression, anxiety
or stress that may be associated
with sleeping

* You think you may be taking any
medications that may be
interfering with your sleep

Sleep recommendations specific
to you and your child

* Your child has been diagnosed
with (type of seizures).

* In most cases, this type of
seizure occurs mostly (in wake,
in sleep, in transition, hours).

If during waking hours:

*

*

*

If during sleep hours:

*

*

*

This Information should reassure
you and allow you and your child
to maintain or move towards
Independent sleeping
arrangements. This means you can
both sleep In your own rooms and
In your own beds.
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Author:Ledet, Davonna; Aplin-Kalisz, Christina; Filter, Marilyn; Dycus, Paula
Publication:Journal of Neuroscience Nursing
Article Type:Report
Date:Feb 1, 2016
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