ADULT EDUCATION FOR PEOPLE WITH EPILEPSY - MODIFICATION OF INTERNATIONAL EDUCATIONAL PROGRAM TO NATIONAL NEEDS
DOI:
https://doi.org/10.17770/sie2021vol3.6312Keywords:
evidence-based modifications, MOSES - The Modular Service Package Epilepsy, people with epilepsy, social pedagogyAbstract
The aim of the article is to discuss the process of piloting and modification of educational program for people with epilepsy, to present its implementation and country-specific evidence-based modifications which were influenced by sociocultural situation in the country and were made based on course’s participants experience. The article is grounded on the theoretical, legal documents analysis and data of participatory research with reflection of professional experience.
The changes in the program in Lithuania were caused by specific sociocultural context in the country: there was lack of specialised psychosocial services for people with epilepsy, domination of biomedical model in treatment and services, recognition of disability in relation to working capabilities, high permanent unemployment, dependency of people with epilepsy on medical staff and family, lack of reflection skills, etc. The main modifications were: prolonged duration of the training and slowing the intensity of the training what gave possibility to train reflection skills; added new topics to the Program; the Program was complimented with participatory research. Participatory research revealed that made changes during the Program’s testing and modification process allowed participants to learn new skills, to tell illness narratives, to express hidden feelings, to take bigger responsibility for own illness, to formulate life goals and to plan next steps in life. The methodology of social pedagogy was used for the implementation of the Program, that it could meet the needs of the training participants and correspond to the national context.
Downloads
References
Baier, H., Coban, I., Dennig, D., Geiger-Riess, M., Haferkamp, G., Kerling, F., Lippold, M., Scheid, B., Specht, U. (2020). MOSES Er-Arbeitungsbuch. Modulares Schulungsprogramm Epilepsie. 4 Auflage. Bielefeld: Bethel.
Beland, H. (1985). Zur Bedeutung chronischer Krankheit für die Identität der Betroffenen. Soziale Welt 36., H. 3, 349-365. Retrieved from https://www.jstor.org/stable/40877446
Benson, A. Toole, S.O., Lambert, V., Gallagher, P., Shahwan, A., & Austin, J.K. (2015). Tell or not to tell: A systematic review of the disclosure practices of children living with epilepsy and their parents. Epilepsy & Behavior 51, 73–95. DOI: http://dx.doi.org/10.1016/j.yebeh.2015.07.013
Geerlings, R.P.J., Gottmer-Welschen L.M.C., Machielse J.E.C, Louw A.J.A., Aldenkamp, A.P. (2019). Failed transition to independence in young adults with epilepsy: The role of loneliness. Seizure: European Journal of Epilepsy, 69, 207–212.
Heiner, M. (2004). Diagnosen – das ungeliebte Handwerk. In Diagnostik und Diagnosen in der sozialen Arbeit. Ein Handbuch. Berlin, Eigenverlag des Deutschen Vereins für äffentliche und private Fürsorge.
Kılınç, S., Campbell, C., Guy, A., Wersch, A. (2018). Epilepsy, identity, and the experience of the body. Epilepsy Behavior, 89, 42-47. DOI: https://doi.org/10.1016/j.yebeh.2018.10.003
Kleinwachau - Saxon Epilepsy Center Radeberg. (2021). Retrieved from https://www.kleinwachau.de/suche?tx_kesearch_pi1%5Bsword%5D=Geschichte
Kolleg für Sozialpädagogik. (2021). Was ist Sozialpädagogik? Retrieved from https://www.sozialpaedagogik.at/sozialpaedagogik/was-ist-sozialpaedagogik.html
Laing, R. (2002). Ja i drugie. Moskva: JEKSMO-Press.
Pfaefflin, M.T., Fraser, R.T., Thorbeche, R. (2001). Comprehensive Care for People with Epilepsy. London: John Libbez&Company.
Sedienė, P. (2017). Pratarmė. In Moses (eds.), Modulinė epilepsijos mokymo programa. Darbo knyga, (5 - 6). Kaunas: Caritas.
Sedienė, P., Pivorienė, J., Laskevičiūtė, E. (2017). Epilepsija sergančių asmenų patirtys darbo rinkoje ir socialinės pagalbos galimybės. Socialinis darbas: patirtis ir metodai, Nr. 20 (2), 99-115. DOI: https://dx.doi.org/10.7220/2029-5820.20.2.5
Sedienė, P. (2020). Epilepsija sergančių asmenų psichosocialinė situacija. Tarpdalykinės komunikacijos ir kūrybiško bendradarbiavimo prielaidos. Kaunas: LSMU leidybos namai.