NURSING CARE OF A NEWBORN WITH RARE DISEASE
Providing specialised care for newborns requires intensive care and specialised knowledge across various fields of neonatology. This care focuses not only on the pathophysiological processes affecting newborns but also on rare congenital disorders that impact the structural or functional development...
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| Main Authors: | , , , , |
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| Format: | Article |
| Language: | Slovenian |
| Published: |
The Society for Children with Metabolic Disorders
2025-05-01
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| Series: | Slovenska pediatrija |
| Subjects: | |
| Online Access: |
http://www.slovenskapediatrija.si/Portals/0/Clanki/2025/Slovpediatr-2025-2-01en.pdf
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| _version_ | 1850185507730882560 |
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| author | Žan Pajk Iva Kramar Vanja Uran Janja Gržinić Aneta Soltirovska Šalamon |
| author_facet | Žan Pajk Iva Kramar Vanja Uran Janja Gržinić Aneta Soltirovska Šalamon |
| author_sort | Žan Pajk |
| collection | DOAJ |
| description | Providing specialised care for newborns requires intensive care and specialised knowledge across various fields of neonatology. This care focuses not only on the pathophysiological processes affecting newborns but also on rare congenital disorders that impact the structural or functional development of tissues, organs, and organ systems. Neonatal health-care for rare diseases is therefore highly individualised, emphasising early detection and adaptation to the specific needs of the child. Continued healthcare involves providing comprehensive support to the parents of sick newborns, including empowering them, educating them, and encouraging active involvement in the care of their child. Additionally, it includes support to help the family adjust to life with a sick child in the home environment. |
| format | Article |
| id | doaj-art-2986a122968f403c95dffd9d7dfcad5f |
| institution | OA Journals |
| issn | 1318-4423 2712-3960 |
| language | Slovenian |
| publishDate | 2025-05-01 |
| publisher | The Society for Children with Metabolic Disorders |
| record_format | Article |
| series | Slovenska pediatrija |
| spelling | doaj-art-2986a122968f403c95dffd9d7dfcad5f2025-08-20T02:16:44ZslvThe Society for Children with Metabolic DisordersSlovenska pediatrija1318-44232712-39602025-05-01322424610.38031/slovpediatr-2025-2-01en13184423NURSING CARE OF A NEWBORN WITH RARE DISEASEŽan Pajk0Iva Kramar1Vanja Uran2Janja Gržinić3Aneta Soltirovska Šalamon4 Klinični oddelek za neonatologijo, Pediatrična klinika, Univerzitetni klinični center Ljubljana, Ljubljana, Slovenija Klinični oddelek za neonatologijo, Pediatrična klinika, Univerzitetni klinični center Ljubljana, Ljubljana, Slovenija Klinični oddelek za neonatologijo, Pediatrična klinika, Univerzitetni klinični center Ljubljana, Ljubljana, Slovenija Klinični oddelek za neonatologijo, Pediatrična Klinika, Univerzitetni klinični center Ljubljana, Ljubljana, Slovenija Klinični oddelek za neonatologijo Pediatrična Klinika, Univerzitetni klinični center Ljubljana, Ljubljana, Slovenija Providing specialised care for newborns requires intensive care and specialised knowledge across various fields of neonatology. This care focuses not only on the pathophysiological processes affecting newborns but also on rare congenital disorders that impact the structural or functional development of tissues, organs, and organ systems. Neonatal health-care for rare diseases is therefore highly individualised, emphasising early detection and adaptation to the specific needs of the child. Continued healthcare involves providing comprehensive support to the parents of sick newborns, including empowering them, educating them, and encouraging active involvement in the care of their child. Additionally, it includes support to help the family adjust to life with a sick child in the home environment. http://www.slovenskapediatrija.si/Portals/0/Clanki/2025/Slovpediatr-2025-2-01en.pdf newbornspecialised nursing carerare diseaseparents |
| spellingShingle | Žan Pajk Iva Kramar Vanja Uran Janja Gržinić Aneta Soltirovska Šalamon NURSING CARE OF A NEWBORN WITH RARE DISEASE Slovenska pediatrija newborn specialised nursing care rare disease parents |
| title | NURSING CARE OF A NEWBORN WITH RARE DISEASE |
| title_full | NURSING CARE OF A NEWBORN WITH RARE DISEASE |
| title_fullStr | NURSING CARE OF A NEWBORN WITH RARE DISEASE |
| title_full_unstemmed | NURSING CARE OF A NEWBORN WITH RARE DISEASE |
| title_short | NURSING CARE OF A NEWBORN WITH RARE DISEASE |
| title_sort | nursing care of a newborn with rare disease |
| topic | newborn specialised nursing care rare disease parents |
| url |
http://www.slovenskapediatrija.si/Portals/0/Clanki/2025/Slovpediatr-2025-2-01en.pdf
|
| work_keys_str_mv | AT zanpajk nursingcareofanewbornwithraredisease AT ivakramar nursingcareofanewbornwithraredisease AT vanjauran nursingcareofanewbornwithraredisease AT janjagrzinic nursingcareofanewbornwithraredisease AT anetasoltirovskasalamon nursingcareofanewbornwithraredisease |