| dc.contributor.author | Kamyk-Wawryszuk, Agnieszka | |
| dc.date.accessioned | 2020-10-12T08:07:25Z | |
| dc.date.available | 2020-10-12T08:07:25Z | |
| dc.date.issued | 2020 | |
| dc.identifier.isbn | 978-86-6203-139-6 | |
| dc.identifier.uri | http://repozytorium.ukw.edu.pl//handle/item/7239 | |
| dc.description.abstract | Diagnosing a child with a rare disease that involves acute respiratory distress
dramatically changes his/ her educational situation. Therefore, it is important to
determine the child’s educational needs which will help select an adequate teaching
strategy. One of such diseases is Spinal Muscular Atrophy with Respiratory Distress Type
1 (SMARD1). In Poland, two children were diagnosed with it, whereas around the world
there are over 60 cases. The study encompasses one boy with SMARD1. The purpose
of the study was to describe the child’s educational needs, as well as to indicate which
of them are related to the rare disease and which to respiratory distress that requires
mechanical ventilation. Based on the performed study, it was concluded that not all educational needs related to the rare disease were present. On the other hand, all needs
related to home ventilation were present. | en_US |
| dc.language.iso | en | en_US |
| dc.publisher | University of Belgrade – Faculty of Special Education and Rehabilitation | en_US |
| dc.subject | children with educational needs | en_US |
| dc.subject | Spinal Muscular Atrophy with Respiratory Distress Type 1 | en_US |
| dc.subject | rare disease | en_US |
| dc.title | Educational needs of children with rare diseases and long-term home ventilation (SMARD1) - case study | en_US |
| dc.type | Book chapter | en_US |
