Accelerometer and Survey Assessed Physical Activity in Children With Epilepsy: A Case-Controlled Study.

PURPOSE: Anecdotal evidence suggests that children with epilepsy (CWE) are limited in the frequency of their daily physical activity (PA). However, there is limited research utilizing device-based measures of PA. We compared levels of PA and sedentary behavior in CWE (11-15 y) and age- and gender-matched healthy controls. METHOD: Participants (n = 60 CWE [25 males, 35 females] and n = 49 controls [25 males, 24 females]) wore a Actigraph accelerometer (GT3X or GT3X+) for 7 consecutive days during waking hours and self-reported their PA and sedentary behaviors. CWE were compared with control children on time spent in different intensities of PA and on self-reported PA and sedentary behavior. Factors associated with PA were analyzed using linear regression. RESULTS: CWE spent less time in accelerometer assessed light (189.15 vs 215.01 min/d, P < .05) and vigorous PA (35.14 vs 44.28 min/d, P < .05) on weekdays compared with controls. There were no significant differences between CWE and control participants in accelerometer assessed time spent sedentary or time spent in PA on weekends. Among CWE, older children engaged in more reported sedentary behavior and younger children spent more time in most domains of PA (P < .05). Furthermore, CWE reported less PA than controls (P = .006). Sixteen percent of controls met World Health Organization PA guidelines compared with 10% of CWE. There was a positive relationship between accelerometer assessed PA and quality of life for CWE. CONCLUSION: CWE spent less time in light and moderate to vigorous PA on weekdays. Further research is needed to understand reasons for these differences.

Knowledge about, and attitudes towards epilepsy among school staff: A UK-based survey.

OBJECTIVE: To survey attitudes towards, and knowledge about, epilepsy among school staff in a defined geographical region in the United Kingdom. METHODS: School staff (n = 160) from 18 schools (56% of eligible schools) where children with epilepsy were currently attending were surveyed. Surveys were developed in collaboration with educational professionals. Questions focussed on attitudes towards, and knowledge about, epilepsy. Factors associated with attitudes and knowledge were analyzed using multivariable logistic regression. RESULTS: The majority of staff expressed positive attitudes towards the inclusion of children with epilepsy in school, although for most questions there was a significant minority who expressed less positive views. Only 30% of staff agreed that they would feel confident managing a child having a seizure whilst 42% of all staff would be concerned if they had to administer emergency medication. Regarding knowledge, half (50%) of respondents correctly indicated that a child who has a seizure should not always leave the classroom, whilst 54% knew that an ambulance should not always be called every time a child has a seizure. Regarding seizure semiology, almost all respondents (96%) answered 'yes' when asked if seizures could involve convulsions/limb jerking or whole-body convulsions. The vast majority (94%) also identified that seizures could involve 'staring blankly into space'. From a list of eight medical/neurodevelopmental conditions, epilepsy was the condition staff ranked of most concern. Factors independently associated with more positive attitudes and better knowledge included working in a special school as opposed to a mainstream school, having previously witnessed a seizure, and having been in receipt of training on epilepsy (all p < 0.05). Most respondents expressed a desire for more training on seizure management and on the learning and behavioral aspects of epilepsy. CONCLUSION: Whilst attitudes toward children with epilepsy are largely positive, epilepsy was the condition staff were most concerned about. Additionally, attitudes towards seizure management and administration of emergency medication in school are less positive, and knowledge of correct actions in the event of seizures in the classroom is deficient in nearly half of respondents. More positive attitudes and better knowledge were associated with previous experience of witnessing seizures, working in special schools, and having received epilepsy training. School staff in UK schools are likely to benefit from access to training on epilepsy in order to improve attitudes and increase knowledge and confidence towards supporting a child with epilepsy in their classroom.

Perceived impact of epilepsy on sleep: Views of children with epilepsy, parents and school staff.

OBJECTIVE: To gain an understanding of the views of school-aged children with epilepsy, their parents, and school staff regarding the impact of epilepsy on sleep. METHODS: As part of the What I Need in School (WINS) study, school-aged children (n = 18) with 'active epilepsy' (taking Anti-Seizure Medications, ASMs, for epilepsy), their parents (n = 68) and school staff (n = 56) were interviewed or completed bespoke questionnaires. Questions focussed on the potential impact of epilepsy on the child's sleep or tiredness in school and the potential impact of sleep/tiredness on learning and behavior. RESULTS: Fifty-six percent of children believed that epilepsy affects their sleep while 65% of parents believed that their child had more difficulties with sleep than other children of their age. Seventy-eight percent of parents believed that their child's difficulties were due to epilepsy and 95% believed that their child's difficulties impacted their learning and behavior. Fifty-four percent of school staff believed that the child with epilepsy they supported was more tired/fatigued than their peers, and 86% of school staff believed that the child's increased tiredness affected their learning/behavior. Parents of children with intellectual disabilitiy were significantly more likely to indicate that they felt that their child had more sleep difficulties than other children (p = 0.016). Regarding the impact on their sleep, participating children felt that epilepsy contributed to difficulties in falling and staying asleep and daytime tiredness. Their parents reported a range of potential sleep difficulties and potential impacts on the child's learning and behavior. Parental reported difficulties included daytime tiredness, difficulty falling and staying asleep, and the impact of nocturnal seizures. In terms of impact, parents felt that sleep difficulties impacted negatively cognition and emotional-behavioral functioning. Additionally, parents reported that ASMs and medication for ADHD can contribute to sleep difficulties. School staff felt that many of the children appeared tired/fatigued during the day and this could lead to less engagement with classroom activities, impact attention and processing speed negatively, and contribute to behavioral and emotional difficulties. CONCLUSION: The majority of children and parents who responded believed that epilepsy affects the child's sleep. Most parents and school staff also believed that the child's sleep difficulties/excess tiredness were due to the child's epilepsy and that the difficulties significantly impacted the child's learning and behavior. There is a need to better understand the role epilepsy plays in sleep difficulties and associated learning and behavioral impairments. There is also a need to develop interventions to reduce the subsequent impact on child learning and behavior.

Impact of epilepsy on learning and behaviour and needed supports: Views of children, parents and school staff.

BACKGROUND: There is limited data on the views of young people with epilepsy, their parents and school staff regarding the impact of epilepsy on learning and behaviour in school. The purpose of the study was to gain an understanding of the impact of epilepsy on learning and behaviour and needed supports according to children with epilepsy, their parents and supporting school staff. METHODS: School-aged children (n = 20) with 'active epilepsy' (taking anti-seizure Medications (ASMs) for epilepsy), their parents (n = 68) and school staff (n = 56) were interviewed or completed surveys. The quantitative data was analysed using descriptive statistics and responses were compared for children attending mainstream and special schools using chi-square analyses. The answers to open questions were answered using thematic analyses. RESULTS: The majority (53%) of children with epilepsy felt that epilepsy affected their learning including aspects such as memory, attention and concentration but also physical and emotional wellbeing including increased tiredness and lowered self-confidence. In addition, children brought up possible negative aspects of taking ASMs including increased irritability and emotional reactivity. The children also mentioned that epilepsy in school was associated with stigma and restrictions. The majority (85%) of parents agreed that epilepsy affects the child's learning/behaviour while more staff agreed that epilepsy affects learning (61%) than behaviour (45%). Most parents agreed that that their child's school provided the appropriate resources to support their child's learning (79%) and 72% agreed that they were satisfied overall with the support their child received at school. However, parents of children attending special schools were more likely to agree that the child's school provided appropriate resources to support their child's learning (p = 0.034) and be satisfied with the support their child received in school (p = 0.02), than parents of children attending mainstream schools. With respect to current or desired supports, analysis of the children's responses indicated that they want access to supportive environments outside the classroom, accommodations in tests/exams and increased support from trusted adults. Parent responses included approaches that promote child wellbeing, environmental accommodations, a high ratio of adult support and a consideration of the child's communication needs. Staff views regarding optimal strategies included a high level of adult support for the child, environmental accommodations, use of multimodal learning, adapting communication and approaches that promote psychological wellbeing. CONCLUSIONS: The majority of children perceived that epilepsy affected their learning and behaviour in school including leading to specific learning difficulties, but also negative impacts on emotional and physical wellbeing. Levels of parental satisfaction with supports were significantly higher in special schools compared with mainstream schools. Children, parents and staff highlighted a number of supports which they felt can support the child with epilepsy's learning but also emotional wellbeing.

Inclusion and participation of children with epilepsy in schools: Views of young people, school staff and parents.

OBJECTIVE: To gain an understanding of the views of children with epilepsy, their parents and staff regarding inclusion and participation of children with epilepsy in school. METHODS: During the study period, 136 children with 'active' epilepsy (taking anti-seizure Medications (ASMs) for epilepsy), were identified in the study area and of these 68 (50% of those eligible) families agreed to participate. Children (n = 20) with 'active epilepsy' their parents (n = 68) and staff (n = 56) were interviewed or completed surveys. The quantitative data were analysed using descriptive statistics and chi-square analyses. The answers to open questions were analysed using thematic analyses. RESULTS: Staff in mainstream schools were more concerned about the child's attendance than staff in special schools (p = 0.008).Parents and school staff cited a number of negative aspects of the child's attendance difficulties including social-emotional and academic aspects. The majority of parents and staff felt that young people with epilepsy were included in school to the same extent as peers. Parents were however, significantly less likely than staff to agree that children were included in all playground activities (p = 0.045). Parents of children in special schools were more likely to agree that their child was included in school than parents of children attending mainstream schools (p = 0.041). Thematic analysis revealed that parents felt that their child could be excluded in school due to staff decisions, child's own choice and peer led exclusion. The majority of children (64%) and parents (56%) agreed that the child with epilepsy was restricted from doing things their peers could do because of their epilepsy. While more than half of children with epilepsy (63%) reported that they had been bullied, most did not attribute this bullying to having epilepsy. Parents were more likely to agree that their child was bullied because of their epilepsy (p = 0.035) and non-epilepsy reasons than staff (p<0.001). Parents of children with epilepsy attending mainstream schools were more likely to agree that their child was bullied because of their epilepsy (p = 0.017) and non-epilepsy reasons (p = 0.026), compared to parents of children with epilepsy attending special schools. CONCLUSIONS: School attendance difficulties for children with epilepsy can contribute to academic and social-emotional difficulties. Most parents and teachers feel that children with epilepsy are included in classroom activities to the same extent as peers. Children with epilepsy and their parents believe that they are more restricted in non-classroom activities compared with their peers. Difficulties with participation, friendships and bullying for children with epilepsy may be due to presence of other conditions as opposed to epilepsy per se. There is a need to increase understanding of the wide ranging impact of epilepsy on school life in order to enhance attendance and inclusion and to reduce bullying.

Epilepsy in schools: Views on educational and therapeutic provision, understanding of epilepsy and seizure management.

OBJECTIVE: To gain an understanding of the views of young people with epilepsy, their parents and school staff regarding educational and therapeutic provision, understanding of epilepsy and seizure management in schools. METHODS: School-aged children (n = 20) with 'active epilepsy' (taking Anti-Seizure Medications (ASMs) for epilepsy), their parents (n = 68), and school staff (n = 56) were interviewed or completed bespoke questionnaires. In addition, all participating children underwent psychological assessment including measures of behavior and cognition. RESULTS: Only 15% of participating children had received psychological support despite 60% scoring within the at-risk range on a measure of behavioral and emotional difficulties. More than half of the responding children reported that some of their teachers and friends did not know that they had epilepsy. A significant minority of parents (32%) did not feel that the child's transition from preschool to primary, or primary to secondary school was managed well. Knowledge of the child's epilepsy was felt to be significantly better in special schools than mainstream schools according to both parents and school staff. Staff in special schools perceived they were more knowledgeable about the child's ASMs and changes to ASMs than staff in mainstream schools. Staff in special schools were significantly more likely to have received training on general aspects of epilepsy, seizure management, and impacts on learning and/or behavior. Parental interviews indicated difficulties accessing educational and therapeutic supports. Parents often felt that they had to drive the process to gain supports themselves. They also reported limited professional support, and inadequate communication between themselves and the school and school staff and medical/therapeutic professionals regarding their child's needs. Parents would like more school staff to recognize the impacts of epilepsy on learning and behavior and to support their child more holistically. Many parents wanted more resources for assessment and therapeutic provision in relation to their child's learning, behavior, and emotions. CONCLUSION: Knowledge of epilepsy is felt by parents and staff to be significantly better in special schools compared with mainstream schools. Parents highlighted the need for increased knowledge of the impacts of epilepsy on learning and behavior and perceived a need for more resources for assessment of these difficulties.

The perceived impact of COVID-19 and associated restrictions on young people with epilepsy in the UK: Young people and caregiver survey.

PURPOSE: To garner the views of young people with epilepsy and caregivers regarding the impact of COVID-19 and subsequent restrictions in the UK. MEHODS: An online survey was used to explore the views of young people with epilepsy (n = 71) and caregivers (n = 130) in June 2020. It included questions on the impact of the pandemic and associated restrictions on the child's epilepsy and on child and parental wellbeing. RESULTS: One in three young people and 29 % of caregivers reported that the young person's seizures had increased during the pandemic (only 10 % of young people and 8% of caregivers reported a decrease). Half of young people reported that they were more reluctant to go to hospital. Thirty-one percent of young people and 20 % of parents reported difficulties getting epilepsy medication whilst a significant minority of young people (18 %) and caregivers (25 %) reported that the young person had investigations/assessments cancelled by their hospital. The majority of young people reported their sleep (72 %), mood (64 %) and levels of physical activity (53 %) had deteriorated. Caregivers experienced increases in stress (55 %) and anxiety (52 %). Epilepsy nurses were seen as the most helpful support CONCLUSIONS: Results indicate that the pandemic and associated restrictions have had a negative impact on young people with epilepsy. Perceived increases in seizures, reluctance to go to hospital and cancelled investigations are likely to impact on epilepsy management. The wider psychosocial impact is also likely to be significant with increases in child and caregiver mental health problems in an already vulnerable group.