EPIPICTO: a pictorial guide for adults with epilepsy
Epilepsy is one of the most common chronic neurological disorders affecting around 1% of the population worldwide. The report 'Epilepsy Priorities in Europe' (2013) reports that 50% of the 6 million people with epilepsy in Europe are affected by stigma (ref:www.ilae.org/policy/documents/ERF-Report.pdf). This Erasmus+ project had the aim to develop a pictorial guide for adult persons with epilepsy (PWE) and their carers who are at the risk of social exclusion such as migrant persons, persons living in isolated areas in Europe and persons with low literacy levels and low health literacy. These persons are marginalised because of their health conditions, stigma and discrimination. The output from this project ie the EPIPICTO pictorial guide was the first such guide developed for use with adult PWE and thus contributed to the social inclusion of these persons by providing them with tailored information using a pictorial guide to overcome language barriers and literacy issues and thus helped them to better manage their epilepsy. It also provided more knowledge about epilepsy; improved the health-seeking behaviour of PWE; contributed to an improved quality of life for PWE; contributed towards a reduction of stigma based on misinformation and ignorance. This resource will thus be used not only among migrant and marginalised communities in the five partner organisations ie Caritas Malta Epilepsy Association; Epilepsie Dachverband Österreich (EDO); Epilepsy Connections (Scotland); Interessenvereinigung für Anfallskranke in Köln e.V. and Stichting Epilepsie Instellingen Nederland (SEIN) but worldwide.
EPIPICTO fitted in with the European and national Erasmus+ priorities in that it developed, tested, adapted and implemented innovative practices relating to learning materials and tools for adult learners who are doubly marginalised through their medical condition and situation in society. The pictorial guide provides a new form of flexible pathway for adult learning to marginalised communities through the strategic use of open educational resources. Appropriate tools, such as a curriculum guide and how to use kit, will ensure that staff will be trained in using EPIPICTO during guidance, counselling and coaching. The output from EPIPICTO will also improve the accessibility of learning opportunities (formal and informal) for adults with epilepsy and facilitate outreach activities between organisations in different education, training and youth sectors. The project addresses national and EU priorities for 2017 in that it addresses and tackles an innovative way to raise basic skills in literacy. It also will ensure an improvement of life skills for marginalised adults. EPIPICTO will also promote the inclusion of unemployed and other vulnerable adults with epilepsy in society. During this two-year project various evaluations, proof of concepts and training guides were developed and implemented in order to ensure that the final product is validated for use.
The partners communicated on a regular basis with 18 nearly monthly Zoom meetings, 4 face to face transnational meetings, 3 multiplier events, 1 learning/ teaching/training activity and over 60 dissemination activities in over 15 different countries were undertaken, with an estimated outreach of 20,000 persons. The final format of the guide is such that it is readily adaptable to be rolled out in other regions of the world, where illiteracy rates are considerably higher than in Europe. The guide is free to use, and freely available to download on this EPIPICTO website www.epipicto.eu. It will thus ensure better communication between persons with epilepsy and the various professionals they may come in contact with. The guide is so far available online in SIX languages: English, Maltese, Dutch, German, Spanish and French with Italian, Russian, Chinese, and Arabic and Mandarin being planned.
EPIPICTO also addressed the following horizontal priorities: it resulted in the achievement of relevant and high quality skills and competences of PWE; supported PWE in acquiring and developing key competences -including basic, transversal and soft skills, and digital skills; fostered employability, socio-educational and professional development of PWE; enhanced social inclusion through innovative integrated approaches, and enhanced the access, participation and learning performance of these disadvantaged learners, reducing disparities in learning outcomes. It also developed novel and open practices, since EPIPICTO promoted innovative methods and pedagogies, and developed learning materials and tools; it facilitated employability of PWE as well as learning and labour mobility and facilitated transitions between different levels and types of education and training. EPIPICTO also supported the design of evidence-based reforms that will ensure quality in education, training and youth systems and policies.
If used the Erasmus+ project EPIPICTO must be acknowledged and partners informed on email@example.com