Resumen

RODRIGUEZ ZAMBRANO, Arturo Damián; MERA MEDRANDA, María Nycole; ALCIVAR PINCAY, Gloria Anabel  y  CEDENO RENGIFO, Rosa. When the end of life is near. Life history of a teenager with beta thalassemia. Universidad y Sociedad [online]. 2020, vol.12, n.2, pp.318-324.  Epub 02-Abr-2020. ISSN 2218-3620.

This research work seeks to recognize how a catastrophic illness can affect school performance. The characteristics of a 9th year Basic Education student and the difficulties that he goes through during and outside the institution, in coexistence with the diagnosed Beta Thalassemia disease, are identified. Within the range of possible special educational needs, attention to catastrophic diseases is suggested in the context of regular education centers, in terms of inclusion. Research was constructed through the qualitative paradigm, using the life history method. Among the general results is that the adolescent with beta thalassemia, a disease detected at one year of life, has had a great impact on his productivity, so it has repercussions on his academic performance. The problem increases due to poor stimulation by teachers, with almost non-existent curricular adaptations in the school context. It is recommended to adopt greater educational commitments from those who have in their hands the development of their skills and abilities, as well as their attitudes towards life.

Palabras clave : Catastrophic diseases; beta thalassemia; school performance; school inclusion; special educational needs.

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