Analysing educational contexts in the response to students with Rare Diseases
Abstract
This article presents the results regarding the educational contexts that condition the educational response to students with Rare Diseases in order to qualify those key factors that favour inclusion. To this end, educational policies, inclusive leadership, pro-inclusion values, internal relations and collaboration between teachers, students and families, as well as external relations and collaboration with the community are analysed. The methodology used was qualitative through interviews with families, educational professionals and students with Rare Diseases themselves. The results highlight the need to develop regulations to cater for diversity; the importance of having key people in the educational centre who become the cogs of inclusive leadership; the relevance of promoting inclusive values throughout the educational community; and the opportunity to create spaces and moments to strengthen relationships both internally (teachers, students and families) and externally (community agents and other systems such as the health and social systems). In short, it is essential to create educational contexts that make visible and respond to the existing diversity in each educational centre.Downloads
References
Ainscow, M. & Sandill, A. (2010). Developing inclusive education systems: the role of organizational cultures and leadership. International Journal of Inclusive Education, 14 (4), 401-416
Arango, J. C., Rivera, D. & Olabarría, L. (2017) Neuropsicología infantil. Manual Moderno.
Arnáiz, P., Escarbajal, A. & Caballero, C. (2017). El impacto del contexto escolar en la inclusión educativa. Revista Nacional e Internacional de Educación Inclusiva, 10(2), 195-210.
Aróstegui, I., Álvarez-Rementería, M. & Ozerinjauregi, N. (2022). Metodología. En Darretxe, Berasategi y Gaintza (Coords.). Buenas prácticas inclusivas en la respuesta al alumnado con enfermedades raras. Estudio en diferentes comunidades autónomas (pp. 41-60). Octaedro.
Azorín, C. (2018). Percepciones docentes sobre la atención a la diversidad: propuestas desde la práctica para la mejora de la inclusión educativa. Ensayos, Revista de la Facultad de Educación de Albacete, 33(1), 173-188.
Belzer, L. T., Wright, S. M., Goodwin, E. J., Singh, M. N., & Carter, B. S. (2022). Psychosocial Considerations for the Child with Rare Disease: A Review with Recommendations and Calls to Action. Children-Basel, 9(7).
Darretxe, L., Gezuraga, M. & Berasategi, N. (2020). La necesidad de avanzar hacia la investigación inclusiva. Márgenes, Revista de Educación de la Universidad de Málaga, 1(1), 104-114.
Denzin, N. K. (2017). Critical Qualitative Inquiry. Qualitative Inquiry, 23(1), 8–16.
Escobedo, P., Traver, J. A. & Sales, A. (2021). ¿De quién es la escuela? La voz del alumnado y de las familias en la construcción de una escuela inclusiva. Revista de Educación Inclusiva, 14(2), 166- 181.
European Agency for Special Needs and Inclusive Education (2022). Developing the profile for inclusive teacher professional learning. Implementing the teacher professional learning for inclusion phase 2 methodology. European Agency.
Gaintza, Z., Ozerinjauregi, N., & Aróstegui, I. (2018). Educational inclusion of students with rare diseases: Schooling students with spina bifida. British Journal of Learning Disabilities, 46(4), 250-257.
Garcia-Perales, R., Palomares-Ruiz, A., Gracia-Zomeno, A., & Garcia-Toledano, E. (2022). Contextual Variables with an Impact on the Educational Inclusion of Students with Rare Diseases. International Journal of Environmental Research and Public Health, 19(21), 14103.
Gómez, I. & Ainscow, M. (2014). Hacia una escuela para todos: liderazgo y colaboración. Investigación en la escuela, 82, 19-30.
Lincoln, Y.S. & Denzin, N.K. (2017). Epílogo. El octavo y el noveno momento-la investigación cualitativa en/y el futuro fracturado. En N.K. Denzin y Y.S. Lincoln (Coords.), El arte y la práctica de la interpretación, la evaluación y la presentación. Manual de investigación cualitativa Volumen V (p.398-419). Gedisa.
Maxwell, J.A. (2019). Diseño de investigación cualitativa: Un enfoque interactivo. Gedisa.
Saggu, H., Jones, C., Lewis, A., & Baynam, G. (2021). mEDUrare: Supporting Integrated Care for Rare Diseases by Better Connecting Health and Education Through Policy. Yale Journal of Biology and Medicine, 94(4), 693-702.
Simón, C., Giné, C. & Echeita, G. (2016). Escuela, familia y comunidad: construyendo alianzas para promover la inclusión. Revista latinoamericana de educación inclusiva, 10(1), 25-42.
Slee, R. (2012). La escuela extraordinaria. Morata.
Sotomayor, P., Muñoz, J., Martínez, P., & Araya, A. (2020). Liderazgo, cultura y prácticas inclusivas desde la mirada de equipos directivos de establecimientos educativos. Comuni@cción, 11(1), 5-15.
Stake, R.E. (1998). Investigación con estudio de casos. Morata.
Stake, R.E. (2013). Estudios de casos cualitativos. En N.K. Norman y Y.S. Lincoln (Coords.), Las estrategias de investigación cualitativa (pp.154-197). Gedisa.
UNESCO (2020). Resumen del informe de seguimiento de la educación en el mundo 2020. Inclusión y educación: Todos y todas sin excepción. Unesco.
Valdés, R., & Pérez, N. (2021). Celebrar la diversidad y defender la inclusión: la importancia de una cultura inclusiva. Revista F@ro, 1(33), 45-59.
Verger, S., Negre, F., Rosselló, M.R. & Paz-Lourido, B. (2020). Inclusion and equity in educational services for children with rare diseases: Challenges and opportunities. Children and Youth Services Review, 119(1).
Villaescusa, M.I. (2021). El reto de la formación continua del profesorado para la inclusión educativa. Revista de Recursos para la Educación Inclusiva, 1(1)
Copyright (c) 2023 Servicio de Publicaciones de la Universidad de Murcia
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
Original work publishes in this journal is subject to the following terms:
1. Murcia University Press (the publishing house) holds the copyright of the publishes work, and favours and allows their reutilization under the use license stated in point 2.
© Servicio de Publicaciones, Universidad de Murcia, 2015
2. Work is published in the electronic edition under a license (Creative Commons Reconocimiento-NoComercial-SinObraDerivada 4.0 España (legal text). They can be copied, used, disseminated, transmitted and publicly presented, as long as: i) authorship and original publication source is acknowledged (journal, publishing house and URL of the work); ii) are not used for commercial purposes; iii) the existence and specifications of this use license is stated.
3. Conditions for self-archive. Authors are allowed and encouraged to disseminate electronically the pre-pint (before review) and/or post-print (accepted for publication) versions of their work before their publication since that favours earlier circulation and dissemination resulting in an increased chance for the authors to be cited and for the work to reach a bigger share of the academic community. Colour: RoMEO: green.
