Educational needs of children with rare diseases and long-term home ventilation (smard1) - case study
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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.
Keywords:
children with educational needs / Spinal Muscular Atrophy with Respiratory Distress Type 1 / rare diseaseSource:
Approaches and Models in Special Education and Rehabilitation – Thematic Collection of International Importance, 2020, 173-187Publisher:
- University of Belgrade – Faculty of Special Education and Rehabilitation Publishing Center of the Faculty
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rFASPERTY - CONF AU - Kamyk-Wawryszuk, Agnieszka PY - 2020 UR - http://rfasper.fasper.bg.ac.rs/handle/123456789/3521 AB - 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. PB - University of Belgrade – Faculty of Special Education and Rehabilitation Publishing Center of the Faculty C3 - Approaches and Models in Special Education and Rehabilitation – Thematic Collection of International Importance T1 - Educational needs of children with rare diseases and long-term home ventilation (smard1) - case study EP - 187 SP - 173 UR - https://hdl.handle.net/21.15107/rcub_rfasper_3521 ER -
@conference{ author = "Kamyk-Wawryszuk, Agnieszka", year = "2020", 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.", publisher = "University of Belgrade – Faculty of Special Education and Rehabilitation Publishing Center of the Faculty", journal = "Approaches and Models in Special Education and Rehabilitation – Thematic Collection of International Importance", title = "Educational needs of children with rare diseases and long-term home ventilation (smard1) - case study", pages = "187-173", url = "https://hdl.handle.net/21.15107/rcub_rfasper_3521" }
Kamyk-Wawryszuk, A.. (2020). Educational needs of children with rare diseases and long-term home ventilation (smard1) - case study. in Approaches and Models in Special Education and Rehabilitation – Thematic Collection of International Importance University of Belgrade – Faculty of Special Education and Rehabilitation Publishing Center of the Faculty., 173-187. https://hdl.handle.net/21.15107/rcub_rfasper_3521
Kamyk-Wawryszuk A. Educational needs of children with rare diseases and long-term home ventilation (smard1) - case study. in Approaches and Models in Special Education and Rehabilitation – Thematic Collection of International Importance. 2020;:173-187. https://hdl.handle.net/21.15107/rcub_rfasper_3521 .
Kamyk-Wawryszuk, Agnieszka, "Educational needs of children with rare diseases and long-term home ventilation (smard1) - case study" in Approaches and Models in Special Education and Rehabilitation – Thematic Collection of International Importance (2020):173-187, https://hdl.handle.net/21.15107/rcub_rfasper_3521 .