Intervenciones para la educación inclusiva del alumnado en situación de enfermedad crónica: Scoping Review
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El acceso a la educación obligatoria, la continuidad educativa y la inclusión educativa se suele plantear como un derecho en la sociedad actual, sin embargo, las evidencias nos muestran que el alumnado en situación de enfermedad no siempre consigue sentirse incluido durante los periodos de convalecencia aguda y posterior reinserción educativa. El presente estudio busca explorar y conocer la realidad actual en relación con las intervenciones para promover la educación inclusiva del alumnado en situación de enfermedad crónica a través de un scoping review. Si bien hay algunas intervenciones documentadas o estudios que describen situaciones puntuales de inclusión educativa, queda en evidencia un vacío en relación con estudios que describan intervenciones realizadas en contextos educativos y que midan el impacto de estas. Las futuras líneas de investigación deberían centrarse en reunir evidencia en relación con intervenciones para la continuidad e inclusión educativa del alumnado en situación de enfermedad y la medición del impacto de éstas con el fin de conseguir una inclusión educativa en el ámbito académico, social y cultural del alumnado en situación de vulnerabilidad por razones de salud.
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A'Bear, D. (2014). Supporting the learning of children with chronic illness. The Canadian Journal of Action Research, 15(1), 22-39. DOI: 10.33524/cjar.v15i1.143
Armstrong, R., Hall, B. J., Doyle, J., & Waters, E. (2011). “Scoping the scope” of a cochrane review. Journal of Public Health, 33(1), 147-150. DOI: 10.1093/pubmed/fdr015
Boles J., Winsor D., Mandrell B., Gattuso J., West N., Leigh L. & Grissom S. (2017) Student/patient: the school perceptions of children with cancer. Educational Studies, 43:5, 549-566. DOI: 10.1080/03055698.2017.1312288
Boles J. & Winsor D. (2019) “My School Is Where My Friends Are”: Interpreting the Drawings of Children With Cancer. Journal of Research in Childhood Education, 33:2, 225-241. DOI: 10.1080/02568543.2019.1577771
Boucher, M. (2015). Celebrating Our Differences: Elementary Teachers and Students Learning to Include All Abilities. [Tesis doctoral]. California State University San Marcos.
Bourdon, P. (2018). School Career and Inclusive School between Breaks and Continuities in Children and Adolescents Suffering from a Disabling Disease. Revista Românească pentru Educaţie Multidimensională, 10(4), 265-281.
Cases, I., Ricart, S., Pellicer, E., Ciprés, S., Peñarrubia, L., Viñals, M., Torrús, I. & Vicen,. A. (2020). Schooling of children with EB: intervention in the education centre by an interdisciplinary team. EB World Congress Poster. London.
Castillo, J. (2016). Análisis de experiencias educativas en estudiantes con discapacidad visual de la Universidad Autónoma de la Ciudad de México, plantel San Lorenzo Tezonco. (Tesis doctoral). Universidad Autónoma de la Ciudad de México, México. https://repositorioinstitucionaluacm.mx/jspui/bitstream/123456789/910/3/JUDITH%20CASTILLO%20ORDO%C3%91EZ_CS_febrero%2016.pdf
Choquette, A., Rennick, J. E., & Lee, V. (2016). Back to school after cancer treatment: making sense of the adolescent experience. Cancer Nursing, 39(5), 393-401. DOI: 10.1097/NCC.0000000000000301
Ellis S.J., Drew D., Wakefield C.E., Saikal S.L., Punch D. & Cohn R.J. (2013). Results of a nurse-led intervention: connecting pediatric cancer patients from the hospital to the school using videoconferencing technologies. J Pediatr Oncol Nurs. 30(6):333-341. DOI: 10.1177/1043454213514633
Expósito, A. M., Martín, A. M., & Ruiz, A. (2019). Las enfermedades raras en Educación Infantil: necesidades educativas en el aula, aportaciones desde el punto de vista familiar y docente, e intervención educativa de sensibilización. (Trabajo de fin de grado). Universidad de Sevilla, España. https://idus.us.es/handle/11441/91176
Fourie, J. V. (2017). School based collaborative support networks in fostering inclusive education in selected South African schools. (Tesis doctoral). University of Johannesburg, Sudáfrica. https://www.proquest.com/openview/9864e4db80601a9492b9b9ec22629216/1?pq-origsite=gscholar&cbl=2026366&diss=y
Fraser, D.F.G. (2003). Strangers in their own land: friendship issues when children have cancer. Journal of Research in Special Educational Needs, 3: 147-153. DOI: 10.1111/1471-3802.00009
Freire, Paulo. Pedagogía de la autonomía: saberes necesarios para la práctica educativa. México, D.F: Siglo XXI, 1997. Print.
Gartin, B. C. & Murdick, N. L. (2009). Children with Cancer: School Related Issues. Physical Disabilities: Education and Related Services, v27 n2 p19-36. https://eric.ed.gov/?id=EJ844270
Gathercole, K. A. (2017). The educational experiences of children and young people with cystic fibrosis. [Tesis doctoral]. University of Leeds, Reino Unido. https://etheses.whiterose.ac.uk/18012/
Gathercole, K. (2019). Managing cystic fibrosis alongside children’s schooling: Family, nurse and teacher perspectives. Journal of Child Health Care, 23(3), 425-436. DOI: 10.1177/1367493518814930
Helms, A.S., Schmiegelow, K., Brok, J., Johansen, C., Thorsteinsson, T., Simovska, V., & Larsen, H.B. (2016). Facilitation of school re-entry and peer acceptance of children with cancer: a review and meta-analysis of intervention studies. European journal of cancer care, 25 1, 170-9. DOI: 10.1111/ecc.12230
Hill, C. (2015). Managing asthma at school: The perceptions of children and school staff. (Tesis doctoral). University of the West of England, Inglaterra.
Hopkins Li., Moss J., Green J. & Strong G. (2014). Embedding learning in a paediatric hospital: changing practice and keeping connected. International Journal of Inclusive Education, 18:3, 312-321. DOI: 10.1080/13603116.2012.752877
Isaac, B. (2019). Strategies for inclusion through play among disabled and abled children: an integrative review of role-theory's effect on inclusive practice. (Tesis doctoral). University of Witwatersrand, Sudáfrica.
Jiliberto, F., Delgado, A. C., & Serka, S. (2022). Remote classroom participation via videoconferencing for cancer patients who cannot attend school because of health needs: Lessons from a success story. In Pediatric Blood & Cancer (Vol. 69, pp. S628-S628). 111 River ST, Hoboken 07030-5774, NJ USA: Wiley.
Jurado de los Santos, P. (2020). Inclusión y Educación. Bases de y para una educación inclusiva. En Educación inclusiva: abriendo puertas al futuro. P. 49-82. Madrid: Editorial Dykinson. https://www-torrossa-com.sire.ub.edu/en/resources/an/4689521
Kaffenberger, C. J. (2006). School reentry for students with a chronic illness: A role for professional school counselors. Professional School Counseling, 9(3), 223-230. https://www.jstor.org/stable/42732674
Koller, D., & Stoddart, K. (2021). Approaches that Address Social Inclusion for Children with Disabilities: A Critical Review. In Child & Youth Care Forum, (pp. 1-21). Springer US. https://link.springer.com/article/10.1007/s10566-020-09589-8
Kontogianni, V., Pehlivanou, E., Kyridis, A., & Tourtouras, C. (2021). Education and Social Exclusion of Children with Chronic Diseases. International Research in Education, 9(IKEEART-2021-1682), 73-92.
Llabrés Ferrer, J. (2019). Les oportunitats de la inclusió escolar: el cas de na Maria. (Tesis doctoral). Universitat de les Illes Balears, España. https://dialnet.unirioja.es/servlet/tesis?codigo=260196
Lum, A., Wakefield, C. E., Donnan, B., Burns, M. A., Fardell, J. E., & Marshall, G. M. (2017). Understanding the school experiences of children and adolescents with serious chronic illness: A systematic meta‐review. Child: Care, Health and Development, 43(5), 645-662. DOI: 10.1111/cch.12475
Lum, A., Wakefield, C. E., Donnan, B., Burns, M. A., Fardell, J. E., Jaffe, A., ... & Marshall, G. M. (2019). Facilitating engagement with school in students with chronic illness through positive education: A mixed-methods comparison study. School Psychology, 34(6), 677. DOI: 10.1037/spq0000315
Mokkink, L. B., Van der Lee, J. H., Grootenhuis, M. A., Offringa, M., & Heymans, H. S. (2008). Defining chronic diseases and health conditions in childhood (0–18 years of age): national consensus in the Netherlands. European journal of pediatrics, 167(12), 1441-1447. DOI: 10.1007/s00431-008-0697-y
Moriña, A. (2017). ‘We aren’t heroes, we’re survivors’: higher education as an opportunity for students with disabilities to reinvent an identity. Journal of Further and Higher Education. 41(2), 215-226. DOI: 10.1080/0309877X.2015.1070402
Nisselle, A., Hanns, S., Green, J., & Jones, T. (2012). Accessing flexible learning opportunities: children’s and young people’s use of laptops in a paediatric hospital. Technology, Pedagogy and Education, 21(1), 3-20. DOI: 10.1080/1475939X.2012.659883
Nota, L., Ginevra, M. C., Di Maggio, I., & Soresi, S. (2017). Engaging Parent Strengths for Inclusion: The Power of Optimism, Hope, and Courage. In Working with Families for Inclusive Education. Emerald Publishing Limited. DOI: 10.1108/S1479-363620170000010021
Prevatt F., Heffer R. & Lowe P. (2000). A Review of School Reintegration Programs for Children with Cancer, Journal of School Psychology, Volume 38, Issue 5, Pages 447-467, ISSN 0022-4405. DOI: 10.1016/S0022-4405(00)00046-7.
Rath, V. (2020). Social engagement experiences of disabled students in higher education in Ireland. (Tesis doctoral). Trinity College Dublin, Irlanda.
Root M., Bray M., Maykel Ch., Cross K., Shankar N. & Theodore L. (2016). Students with cancer: Presenting issues and effective solutions. International Journal of School & Educational Psychology, 4:1, 25-33. DOI: 10.1080/21683603.2016.1130549
Shiu, S. (2004). Positive Interventions for Children with Chronic Illness: Parents’ and Teachers’ Concerns and Recommendations. Australian Journal of Education, 48(3), 239–252. DOI: 10.1177/000494410404800303
Sullivan, N. A. Fulmer, D. L. & Zigmond, N. (2001). School: normalizing factors for children with childhood leukemia. Preventing School Failure. Fall Vol. 46 Issue 1, p4. 10p. DOI: 10.1080/10459880109603338.
Tomberli, L., & Ciucci, E. (2021). Sense of School Belonging and Paediatric Illness: A Scoping Review. Continuity in Education, 2(1). DOI: 10.1093/pubmed/fdr015
Tsimicalis A., Genest L., Stevens B., Ungar W.J. & Barr R. (2018). The Impact of a Childhood Cancer Diagnosis on the Children and Siblings' School Attendance, Performance, and Activities: A Qualitative Descriptive Study. J Pediatr Oncol Nurs. 35(2):118-131. DOI: 10.1177/1043454217741875
UNESCO. (2016). Educación 2030: Declaración de Incheon y Marco de Acción para la realización del Objetivo de Desarrollo Sostenible 4. https://unesdoc.unesco.org/ark:/48223/pf0000245656_spa
Vanclooster S., Van Hoeck K., Peremans L., Bilsen J., Van Der Werff Ten Bosch J., Laureys G., Paquier P. & Jansen A. (2020). Reintegration into school of childhood brain tumor survivors: a qualitative study using the International Classification of Functioning, Disability and Health– Children and Youth framework. Disability and Rehabilitation, 43(18), 2610-2620. DOI: 10.1080/09638288.2019.1708484
Vanclooster S., Bilsen J., Peremans L., Van Der Werff Ten Bosch J., Laureys G., Paquier P. & Jansen A. (2019). Reintegration Into School After Treatment for a Brain Tumor: The Child’s Perspective. Global Pediatric Health, 6. DOI 10.1177/2333794X19860659
Vela Romero, J. A. (2016). Alumnado con diversidad funcional por limitación de la movilidad: análisis, elaboración, adaptación e implementación de recursos educativos para la inclusión. (Tesis doctoral). Universidad de Huelva, España.
Weiss, P., Whiteley, C., Treviranus, & Fels D. (2001). PEBBLES: A Personal Technology for Meeting Educational, Social and Emotional Needs of Hospitalised Children. Personal Ub Comp 5, 157–168. DOI: 10.1007/s007790170006
Wilkie K. (2011). Academic continuity through online collaboration: mathematics teachers support the learning of pupils with chronic illness during school absence. Interactive Learning Environments, 19:5, 519-535. DOI: 10.1080/10494820903545542
Winterling, J., Jervaeus, A., af Sandeberg, M., Johansson, E., & Wettergren, L. (2015). Perceptions of School Among Childhood Cancer Survivors: A Comparison With Peers. Journal of Pediatric Oncology Nursing, 32(4), 201–208. DOI: 10.1177/1043454214563405
White, J. (2015). Learning in ‘No Man’s Land’: Policy Enactment for Students with Health Conditions. In Interrogating Conceptions of"" Vulnerable Youth"" in Theory, Policy and Practice (pp. 97-110). Brill.
White, J. (2015). Students with chronic health conditions, the law and education: a salutary lesson from Australia. International Journal of Inclusive Education, 19(12), 1294-1306. DOI: 10.1080/13603116.2015.1057242
Woodgate, R. L., Gonzalez, M., Demczuk, L., Snow, W. M., Barriage, S., & Kirk, S. (2019). How do peers promote social inclusion of children with disabilities? A mixed-methods systematic review. Disability and Rehabilitation, 42(18), 2553-2579. DOI: 10.1080/09638288.2018.1561955
Woodgate, R. (2006). Life is never the same: childhood cancer narratives. European Journal of Cancer Care, 15: 8-18. DOI: 10.1111/j.1365-2354.2005.00614.x
Yates L. (2014). Young people with health conditions and the inclusive education problematic, International Journal of Inclusive Education, 18:3, 283-294. DOI: 10.1080/13603116.2012.700737
Zschaeck. I., Colomer, A., Natera. D., Carrera-García. L., Ortez C., Expósito. L., Colomer. J. & Nascimento. A. (2020). “El Hospital va a la Escuela” Programa de sensibilización para favorecer una buena adaptación y prevenir la exclusión social en pacientes con ENM. Comunicación XLIII Reunión Anual SENEP