Epilepsy People inclusion Overcoming Workplaces European maRginalization

The EpilepsyPower project aimed to improve the inclusion of people with epilepsy (PwE) in the work system by raising awareness among university students and organisations supporting PwE in the employment process. A main objective was to spread a culture and practice of implementing inclusion systems for PwE, based on increasing knowledge and reducing the stigma that affects PwE. PwE have higher rates of unemployment and underemployment. In addition, PwE often have greater difficulties in keeping their jobs. Half of people with epilepsy do not disclose their condition to potential employers when applying for a job. Many employers refuse to hire people with epilepsy, mistakenly believing that they are more prone to accidents and absenteeism. Almost half of people with epilepsy (PwE) report feeling stigmatised and marginalised. Work and social exclusion are the main determinants of reduced quality of life and mood disorders in people with epilepsy. Employment restrictions imposed on PWEs are in most cases unfair and based on prejudice and stereotypes. Counseling desks (mentoring programs and tutoring in HEI organizations) and training programs as the 14 EpilepsyPower learning modules are fundamental for the the overall workforce.

To address these issues for PwE, the project had two specific objectives: 1) to raise awareness of epilepsy among students and entrepreneurs in order to combat superstition, stigma and prejudice about PwE and to ensure a safe and comfortable working environment; 2) to improve their professional skills and awareness of self-assessment of individual medical risk in order to focus their job search on the most appropriate choice. A fundamental research analisis was made to better define at national level what and how do organisations can develop and implement strategies, policies, practices and initiatives to make their workplaces inclusive for PwE. Also was identifies how do organizations deal with the phenomenon of inclusion of PwE and als the degree level of social inclusion approaches of organizations perceived by PwE using technology. An Operational Framework and Learning Methodology Report was implemented according to two specific learning pathways, one for the following target groups: 1) PwE 2) HEI’s staff and end-users: professors, university staff, placement officers, students, entrepreneurs/managers attending MBA/Executive courses, people employed in organizations, recruiters, HR experts and recruitment agencies.

Regarding the main achievements at the date of January 31, 2025 we completed all the remaining activities planned for the project. In particular the PR01 “Operational framework and learning methodology” (Months M2- M15) with Lead Partner Campus Bio-Medico, was completed. In particular, the literature review, the analysis of the context that involved the target groups and the stakeholders and the knowledge pool comprising statistical reports. The activities also included 2 detailed surveys about Epilepsy Disorders aimed at identifying the degree of awareness of target groups and stakeholders of needs of people with these Disorders and the challenges that people face in making their work life and related to the inclusion improvement. The surveys in English were oriented to People with epilepsy (PwE) and Higher Education Institutions (HEI), then translated into all the languages of the project. Their development has been preceded by knowledge transfer between the partners, a deep literature review by the collection of documents, reports and research and a target groups survey in each involved country. In particular the literature review and the cross-transfer of knowledge on studies and trends relevant for the EpilepsyPOWER was arranged by: Campus Bio-Medico University, Epilepsy Alliance Europe, Luiss University and Grenoble University. The knowledge pool comprising statistical reports, latest research and scientific publications as well as on transversal skills development was collected and stored on Google Drive. Also, a detailed survey about epilepsy disorders has been prepared and distributed aimed at identifying the degree awareness of target groups and stakeholders of needs of PwE, together needs in workplaces or traditional learning environment, specific skill gaps and inclusion issues. Partners prepared a comprehensive document, aimed to increase knowledge about epilepsy and employment. For PR01 two specific surveys for each target group have been developed: higher education institutions and people with epilepsy. All Partners contributed for the development of a comprehensive structured questionnaire. The report that was generated is giving a significant contribution in terms of potential impact and transferability. The survey forms were published and made available on the project website: https://epilepsypower-project.eu/en/surveys UCBM coordinated the PR01 activities and contributed also by the realisation of a comprehensive literature review about epilepsy and employment. All partners made a review specifically of the national legislations and state of the art of the inclusion systems in companies in each involved country. For each country were also identified two specific successful inclusion cases of employment among people with epilepsy and two key performance indicators have been defined: stigma and seizure severity. PR01 Report (EpilepsyPOWER Operational Framework and Learning Methodology Report: Knowledge Transfer, Literature Review and Target Groups Survey) is freely available online via the open access website (https://epilepsypower-project.eu) for everyone to use by professors, entrepreneurs and adults employed in organizations, educators and other adult education staff, PwE, technicians, administrative staff and trainers/consultants, students, Universities and other Higher Education Institutions, etc. in all Partners countries languages. It is a downloadable detailed document divided in 10 sections: 1. Introduction; 2. Partners’ knowledge transfer; 3. Literature review; 4. Specific target group surveys; 5. State of the art of the inclusion systems in companies in each partner country; 6. Study on the recent researches and advances on the impact of epilepsy in the workplace” in each partner country; 7. Analysis of project target groups of learning features and needs; 8. Two key performance indicators (KPI); 9. Successfully inclusion cases for each partner country and 10. bibliography. During the project the Partners were also involved in disseminating the surveys for people with epilepsy, and higher education institutes. This included the creation of promotional flyers which were circulated in the involved countries. Promotional posts were also included across Partners social media channels and on the websites of all Partners. Regarding the PR02 “Integrated online platform for digital integrated learning, multilevel cooperation and resources sharing” (Months M4-M36) with Lead Partner Luiss, substituting Emcra that preferred to not cover this role.In the first months of the projects Luiss and Emcra agreed some changes regarding Emcra tasks as follow: Emcra supported Luiss (as new internal coordinator and responsible for the PR02) with suggestions for the adaptation of the platform for the Project contents management, designed and managed by the new responsible Luiss. Emcra supported CCI-Vratsa (responsible for the website) for the translation from English to German of the specific project website parts. Emcra GmbH agreed to perform the remaining PR02 tasks with the days assigned as researcher with the budget of 1.926 Euro (214 euro/day x 9 days). Emcra autonomously decided to no longer be responsible for PR02 and the 65 technician days originally allocated, with a budget of 10,530 euros (162 euros per day x 65 days), were transferred to Luiss. So the website was designed and implemented by CCI Vratsa following the suggestions given by Luiss and the other Partners. In particular more attention was given to the implementation of an accessible and inclusive website https://epilepsypower-project.eu (already available in all Partners languages and in English) and a preliminary discussion was made about the next platform to be adopted for learning modules. It has been promoted and validated by internal staff of each partner and was promoted to project stakeholders. Regarding the PR03 Collaborative labs for best practices the partners arranged specific discussions and working labs (on-site and online) involving the partners' staff with the target groups (PwE and HEI staff and end users: professors, university staff, placement officers, students, entrepreneurs/managers on MBA/Executive courses, adults employed in organisations, recruiters, HR experts and recruitment agencies) and the main stakeholders of the EpilepsyPOWER project. Participants included all key actors needed to effectively disaggregate the issue of PwE inclusion in the workplace (target groups, stakeholders, scientific community and legislators) with the aim of producing a guide with European transnational transferability. Participants assessed and discussed the needs of PwE in relation to their employability, with a particular focus on internship opportunities, safety in the workplace and communication with employers/colleagues, as identified by previous project outcomes and the labs. The innovation of these collaborative labs is based on the merging of a multidisciplinary vision to discuss the proposed topic (improving PwE work inclusion) in a comprehensive way. The developed national reports were produced and made available. They have been disseminated by the partners through their networks with the ambition to become a milestone for the European policies on PwE. These reports represent a fundamental content for academic students and MBA/Executive future courses of the university partners in order to implement a business culture of disability and inclusion in future managers and entrepreneurs. All the activities related the PR04 “Learning contents and classroom guidelines” were completed (Months M9-M34) with Lead Partner Luiss. Regarding the PR04 Learning contents and classroom guidelines: The main aim of this project result was to ensure a successful sectorial and country transmission by a cross-cultural approach. The contents available on https://epilepsypower-project.eu/ and https://epilepsypower.indesign.it/ have been developed taking in account of the previous PR01 “Operational framework and learning methodology” and the PR03 “Collaborative labs for best practices”. The learning modules have been planned to improve the general knowledge on epilepsy with a particular focus on medical aspects and working/social impacts in the workplace to remove false beliefs, prejudices, and stereotypes on epilepsy. All the learning products developed during the EpilepsyPOWER project are freely available online via the open access platform for everyone to use. This is further facilitated by the fact that the 14 modules were published online in 5 languages (EN, IT, DE, FR, BG). 2 specific multimedia learning paths (curricula) have been created to improve specific and transversal skills for target groups: people with epilepsy (PwE), HEI’s staff and end-users: professors, university staff, placement officers, students, entrepreneurs/managers attending MBA/Executive courses, adult people employed in organizations, recruiters, HR experts and recruitment agencies. In detail the first is focused specifically for people with epilepsy (PwE) aimed to improve their knowledge and to prepare them to work in a better comfortable workplace. It provides online training on many different fields. For example, co-workers and employers sometimes make work difficult for young PwE for the following reasons: discrimination on workplace, emergency events management, bullying by management, including ridicule and verbal abuse, or often, lack of communication and support. The second is focused on HEI’s staff and end-users. The learning modules can increase the general knowledge on epilepsy with a particular focus on medical aspects and their social impacts in the workplace to remove false beliefs, prejudices and stereotypes on epilepsy. They decsribe best practices to facilitate a safe and productive integration of people with epilepsy in the workplace. The learning process took advantage of a rewarding process leading the entrepreneurs to an “epilepsy-friendly” company certification. These contents include practical suggestions correctly adapted and customized on the specific needs that were indicated from companies and associations to host young workers with epilepsy. The 2 learning paths are composed by 14 modules in total and were adapted to the specificness of Partners countries. At the end an assessment online tool for individual people and for organizations that aim to obtain the EpilepsyPOWER label (and so to achieve the Epilepsy Friendly mark) freely available by the online platform. Regarding the PR05 Assessment online tool, EpilepsyFriendly Certificate and epilepsy label (Months M24-M36): Campus Bio-Medico with the support of all the partners were involved in the preparation and publishing of two online skills assessment tools, one for each learning path. They were composed by 10 multiple choice tests and developed to evaluate the initial know-how of the learners and the knowledge acquired at the end of each one. It is also possible to download and print one Certificate of Achievement for each learning path. Instead for organizations is possible to obtain the EpilepsyPOWER label.

- PR01 Operational framework and learning methodology: The involvement of stakeholder representatives was considered very important to achieve high quality objectives for this outcome. An expert group (target groups and stakeholders) was involved in a survey in each partner country as they can be an excellent way to get preliminary feedback on the needs, content and sustainability of the project objectives in terms of social impact, employability and disease management. The information collected helped to achieve a shared and participatory design with the stakeholders of the EpilepsyPOWER project. The organisation and implementation of the survey was planned and agreed by the project partners, taking into account the specificities of each country. Campus Bio-Medico prepared an organisational checklist and a questionnaire structure for the surveys that were distributed in all partner countries (IT, FR, IE, BG, DE). Surveys and cases of inclusion (10 cases of inclusion collected in Italy, France, Ireland, Bulgaria and Germany). It is available in all the languages on https://epilepsypower-project.eu/ - PR02 Integrated online platform for digital integrated learning, multilevel cooperation and resources sharing: The aim was to design, implement and customise an integrated web platform with an attractive design and multilingual capability. In other words, an effective portal integrated with the project consortium's website. Link to the available solution: https://epilepsypower.indesign.it/ CCI Vratsa designed and provided the EpilepsyPOWER multilingual website: https://epilepsypower-project.eu/ . The online platform was previously in English but was then translated into the native language of each project partner (5 languages). Luiss technical staff identified an open and accessible solution for content management, learning activities and modules and online test, integrating them into an easy-to-use solution. Luiss designed and provided the EpilepsyPOWER multilingual platform for the project target groups, including the upload of learning modules, evaluation tests and other training features. - PR03 Collaborative labs for best practices: The aim was to organise specific discussion and working labs (on-site and online) to involve the partners' staff with the target groups (PwE and HEI staff and end users: professors, university staff, placement officers, students, entrepreneurs/managers on MBA/Executive courses, adults employed in organisations, recruiters, HR experts and recruitment agencies) and the main stakeholders of the EpilepsyPOWER project. Participants included all key actors needed to effectively disaggregate the issue of PwE inclusion in the workplace (target groups, stakeholders, scientific community and legislators) with the aim of producing a guide with European transnational transferability. Participants assessed and discussed the needs of PwE in relation to their employability, with a particular focus on internship opportunities, safety in the workplace and communication with employers/colleagues, as identified by previous project outcomes and the labs. The innovation of these collaborative labs is based on the merging of a multidisciplinary vision to discuss the proposed topic (improving PwE work inclusion) in a comprehensive way. The developed national reports were produced and made available. They have been disseminated by the partners through their networks with the ambition to become a milestone for the European policies on PwE. These reports represent a fundamental content for academic students and MBA/Executive future courses of the university partners in order to implement a business culture of disability and inclusion in future managers and entrepreneurs. - PR04 Learning contents and classroom guidelines: The main aim of this project result was to ensure a successful sectorial and country transmission by a cross-cultural approach. The contents have been developed taking in account of the previous PR01 “Operational framework and learning methodology” and the PR03 “Collaborative labs for best practices”. The learning modules have been planned to improve the general knowledge on epilepsy with a particular focus on medical aspects and working/social impacts in the workplace to remove false beliefs, prejudices, and stereotypes on epilepsy. All the learning products developed during the EpilepsyPOWER project are freely available online via the open access platform for everyone to use. This is further facilitated by the fact that the 14 modules were published online in 5 languages (EN, IT, DE, FR, BG). 2 specific multimedia learning paths (curricula) have been created to improve specific and transversal skills for target groups: people with epilepsy (PwE), HEI’s staff and end-users: professors, university staff, placement officers, students, entrepreneurs/managers attending MBA/Executive courses, adult people employed in organizations, recruiters, HR experts and recruitment agencies. In detail the first is focused specifically for people with epilepsy (PwE) aimed to improve their knowledge and to prepare them to work in a better comfortable workplace. It provides online training on many different fields. For example, co-workers and employers sometimes make work difficult for young PwE for the following reasons: discrimination on workplace, emergency events management, bullying by management, including ridicule and verbal abuse, or often, lack of communication and support. The second is focused on HEI’s staff and end-users. The learning modules can increase the general knowledge on epilepsy with a particular focus on medical aspects and their social impacts in the workplace to remove false beliefs, prejudices and stereotypes on epilepsy. They decsribe best practices to facilitate a safe and productive integration of people with epilepsy in the workplace. The learning process took advantage of a rewarding process leading the entrepreneurs to an “epilepsy-friendly” company certification. These contents include practical suggestions correctly adapted and customized on the specific needs that were indicated from companies and associations to host young workers with epilepsy. The 2 learning paths are composed by 14 modules in total and were adapted to the specificness of Partners countries. At the end an assessment online tool for individual people and for organizations that aim to obtain the EpilepsyPOWER label (and so to achieve the Epilepsy Friendly mark) freely available by the online platform. - PR05 Assessment online tool, EpilepsyFriendly Certificate and epilepsy label: Partners were also involved in the preparation and publishing of two online skills assessment tools, one for each learning path. They were composed by 10 multiple choice tests and developed to evaluate the initial know-how of the learners and the knowledge acquired at the end of each one. It is also possible to download and print one Certificate of Achievement for each learning path. Instead for organizations is possible to obtain the EpilepsyPOWER label.