Family Experiences with the Upbringing and Education of a Child with Congenital Malformations, Focusing on the Conditions of an Inclusive School Environment
The birth of a child with congenital malformation and serious illness impacts the experiences of all family members and the educational process, but there are only rare descriptions of such cases in the literature. The aim of this study is to understand better the lived experiences of a Czech family...
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| Format: | Article |
| Language: | English |
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MDPI AG
2022-05-01
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| Series: | Education Sciences |
| Subjects: | |
| Online Access: | https://www.mdpi.com/2227-7102/12/5/362 |
| _version_ | 1827669320710225920 |
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| author | Dagmar Sedláčková Jiří Kantor |
| author_facet | Dagmar Sedláčková Jiří Kantor |
| author_sort | Dagmar Sedláčková |
| collection | DOAJ |
| description | The birth of a child with congenital malformation and serious illness impacts the experiences of all family members and the educational process, but there are only rare descriptions of such cases in the literature. The aim of this study is to understand better the lived experiences of a Czech family who have a child with congenital malformations with a focus on his education in an inclusive environment. The study is based on van Manen’s methodology and autobiographic (or semi-structured) interviews with Karl (19), his mother (46), and his father (49). Data were analyzed for every participant separately: the mother—repeated challenges associated with increasing new health complications, discomfort of son, school support, the future, optimism, and gratefulness; the father—comprehensive support of the son, including all family; Karl—concealment of disability, difficulties associated with disability, participation, school support, relationship with peers, and the future. Based on the results of this case study, for the education of students with congenital malformation and illness, we recommend including parents, healthcare professionals, and school staff in the mutual teamwork; adapting the timetables and spatial arrangements at school; and coordinating the educational process with necessary interventions. |
| first_indexed | 2024-03-10T03:59:41Z |
| format | Article |
| id | doaj.art-2139cbef4bec43278197bd70a0197599 |
| institution | Directory Open Access Journal |
| issn | 2227-7102 |
| language | English |
| last_indexed | 2024-03-10T03:59:41Z |
| publishDate | 2022-05-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | Education Sciences |
| spelling | doaj.art-2139cbef4bec43278197bd70a01975992023-11-23T10:46:12ZengMDPI AGEducation Sciences2227-71022022-05-0112536210.3390/educsci12050362Family Experiences with the Upbringing and Education of a Child with Congenital Malformations, Focusing on the Conditions of an Inclusive School EnvironmentDagmar Sedláčková0Jiří Kantor1Center of Evidence-Based Education & Arts Therapies: A JBI Affiliated Group, The Institute of Special Education Studies, Faculty of Education, Palacky University Olomouc, 771 47 Olomouc, Czech RepublicCenter of Evidence-Based Education & Arts Therapies: A JBI Affiliated Group, The Institute of Special Education Studies, Faculty of Education, Palacky University Olomouc, 771 47 Olomouc, Czech RepublicThe birth of a child with congenital malformation and serious illness impacts the experiences of all family members and the educational process, but there are only rare descriptions of such cases in the literature. The aim of this study is to understand better the lived experiences of a Czech family who have a child with congenital malformations with a focus on his education in an inclusive environment. The study is based on van Manen’s methodology and autobiographic (or semi-structured) interviews with Karl (19), his mother (46), and his father (49). Data were analyzed for every participant separately: the mother—repeated challenges associated with increasing new health complications, discomfort of son, school support, the future, optimism, and gratefulness; the father—comprehensive support of the son, including all family; Karl—concealment of disability, difficulties associated with disability, participation, school support, relationship with peers, and the future. Based on the results of this case study, for the education of students with congenital malformation and illness, we recommend including parents, healthcare professionals, and school staff in the mutual teamwork; adapting the timetables and spatial arrangements at school; and coordinating the educational process with necessary interventions.https://www.mdpi.com/2227-7102/12/5/362inclusive educationpupilspecial educational needscongenital malformationprogressive scoliosiship dysplasia |
| spellingShingle | Dagmar Sedláčková Jiří Kantor Family Experiences with the Upbringing and Education of a Child with Congenital Malformations, Focusing on the Conditions of an Inclusive School Environment Education Sciences inclusive education pupil special educational needs congenital malformation progressive scoliosis hip dysplasia |
| title | Family Experiences with the Upbringing and Education of a Child with Congenital Malformations, Focusing on the Conditions of an Inclusive School Environment |
| title_full | Family Experiences with the Upbringing and Education of a Child with Congenital Malformations, Focusing on the Conditions of an Inclusive School Environment |
| title_fullStr | Family Experiences with the Upbringing and Education of a Child with Congenital Malformations, Focusing on the Conditions of an Inclusive School Environment |
| title_full_unstemmed | Family Experiences with the Upbringing and Education of a Child with Congenital Malformations, Focusing on the Conditions of an Inclusive School Environment |
| title_short | Family Experiences with the Upbringing and Education of a Child with Congenital Malformations, Focusing on the Conditions of an Inclusive School Environment |
| title_sort | family experiences with the upbringing and education of a child with congenital malformations focusing on the conditions of an inclusive school environment |
| topic | inclusive education pupil special educational needs congenital malformation progressive scoliosis hip dysplasia |
| url | https://www.mdpi.com/2227-7102/12/5/362 |
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