Ongoing Information and Support Needs of Parents of Children with Epilepsy

The purpose of this research is to gain insight into the ongoing information and support needs of parents of children with epilepsy. Using descriptive content analysis of text found in twenty client case files, communication logs, and email correspondence, parents requested information and support provided by a community epilepsy agency to mitigate changes in treatment protocols, challenging child behavior, rushed healthcare provider communication, lack of access to mental health services and barriers encountered in the school system. Parents requested system navigation and school advocacy from community epilepsy agency staff intermediaries to develop rescue medication protocols and to mediate parent-school disputes. Parents requested peer mentors to reduce feelings of uncertainty, worry and social isolation. The findings from this research indicate families would benefit from coordinated care between the clinic and the community to reduce social isolation and to cope with the unpredictability, fear and lifestyle challenges inherent in childhood epilepsy

Case 10 : Moving Towards an Inclusive Society: Implementing Epilepsy Awareness Education in the Ontario Elementary School Health Curriculum

This case revolves around the stigma experienced by individuals living with epilepsy. It discusses how Martha, a strategic planner at the Epilepsy Support Centre in London, Ontario, identified the negative health and social implications that confront individuals living with epilepsy. It then sets the stage in terms of problems faced by children and adolescents with epilepsy who are living in London, Ontario, and in terms of public health issues, school boards and government, and future directions. As this is a new initiative that is designed to be introduced into the school curriculum, it is crucial to have appropriate and influential stakeholders on board to actualize this epilepsy awareness program

A live-online mindfulness-based intervention for children living with epilepsy and their families: protocol for a randomized controlled trial of Making Mindfulness Matter©.

BACKGROUND: Epilepsy extends far beyond seizures; up to 80% of children with epilepsy (CWE) may have comorbid cognitive or mental health problems, and up to 50% of parents of CWE are at risk for major depression. Past research has also shown that family environment has a greater influence on children\u27s and parents\u27 health-related quality of life (HRQOL) and mental health than epilepsy-related factors. There is a pressing need for low-cost, innovative interventions to improve HRQOL and mental health for CWE and their parents. The aim of this randomized controlled trial (RCT) is to evaluate whether an interactive online mindfulness-based intervention program, Making Mindfulness Matter (M3), can be feasibly implemented and whether it positively affects CWE\u27s and parents\u27 HRQOL and mental health (specifically, stress, behavioral, depressive, and anxiety symptoms). METHODS: This parallel RCT was planned to recruit 100 child-parent dyads to be randomized 1:1 to the 8-week intervention or waitlist control and followed over 20 weeks. The intervention, M3, will be delivered online and separately to parents and children (ages 4-10 years) in groups of 4-8 by non-clinician staff of a local community epilepsy agency. The intervention incorporates mindful awareness, social-emotional learning skills, and positive psychology. It is modeled after the validated school-based MindUP program and adapted for provision online and to include a parent component. DISCUSSION: This RCT will determine whether this online mindfulness-based intervention is feasible and effective for CWE and their parents. The proposed intervention may be an ideal vector to significantly improve HRQOL and mental health for CWE and their parents given its low cost and implementation by community epilepsy agencies. TRIAL REGISTRATION: ClinicalTrials.gov NCT04020484 . Registered on July 16, 2019

Making epilepsy a national priority in African countries

In Africa, approximately 10 million people live with epilepsy. While epilepsy can be a devastating and chronic condition, with basic treatment, more than 70% of cases can be controlled with one drug. Tragically, in Africa, epilepsy is greatly misunderstood, deeply stigmatized, severely underfunded and, most often, ignored by the healthcare system. Over 75% of people with epilepsy in Africa live in rural and semiurban areas where treatment is almost nonexistent. With the knowledge that there are affordable drugs and effective, low-cost programs, it is shocking that people with epilepsy in Africa continue to suffer

Evaluating the effect of a television public service announcement about epilepsy

Public service announcements (PSAs) are non-commercial advertisements aiming to improve knowledge, attitudes and/or behavior. No evaluations of epilepsy PSAs exist. This study sought to evaluate a televised PSA showing first aid for a seizure. A multilevel regression analysis was used to determine the effect of the PSA on epilepsy knowledge and attitudes taking into account school-level clustering as well as individual-level variables, including socioeconomic status, gender, language and familiarity with epilepsy. Of the 803 randomly selected Grade 5 (9-11 years) students, 406 (51%) had seen the epilepsy PSA. Those who saw the PSA scored significantly higher on knowledge (P \u3c 0.001) and had more positive attitudes (P \u3c 0.001) about epilepsy. Those who saw the PSA had even greater knowledge about epilepsy 1 month later, even though the PSA was no longer being televised. Having viewed, the PSA continued to be associated with higher knowledge and more positive attitudes independent of the effects of a school-based epilepsy education program. © The Author 2010. Published by Oxford University Press. All rights reserved

From global campaign to global commitment: The World Health Assembly's Resolution on epilepsy

Tuesday May 26, 2015, will be remembered as an historic day in the fight against epilepsy. On that date, the World Health Assembly approved unanimously the Resolution on the Global Burden of Epilepsy and the Need for Coordinated Action at the Country Level to Address its Health, Social and Public Knowledge Implications, which urges Member States to implement a coordinated action against epilepsy and its consequences. This event, which comes almost 20 years after the establishment of the Global Campaign against Epilepsy, is another landmark in the longstanding collaboration among the World Health Organization (WHO), the International League Against Epilepsy (ILAE), and the International Bureau for Epilepsy (IBE) in addressing the needs of people with epilepsy. It also acted as a catalyst for other professional societies, including the World Federation of Neurology (WFN), to join forces in promoting a common action against epilepsy. The Resolution did not happen by chance, but came at the end of a long journey that involved the hard and tireless work of many dedicated individuals around the globe