<abstract xmlns="http://www.w3.org/1999/xhtml"><bold>Introduction.</bold> Leigh syndrome, also called subacute necrotizing encephalomyelopathy, belongs to a group of ultra-rare neurodegenerative mitochondrial diseases. It is most often caused by various genetic enzyme deficiencies. An infant with the syndrome is in need of constant care by their parents who have been appropriately trained and prepared for homecare.<bold>Aim.</bold> The aim of the study was to present issues connected with the home care of a child with Leigh syndrome and to propose a new model of a home care based on a chosen case study.<bold>Material and methods.</bold> The research employs the case study method. Used techniques include interviewing, observation, medical document analysis.<bold>Results.</bold> Homecare of a child with Leigh syndrome involves stabilising and supporting life functions and ensuring safety as well as meeting both their physiological and psychological needs.<bold>Conclusions.</bold> Present state of medicine does not allow for causative treatment. All that can be done is hindering the disease’s progress and moderating its symptoms. Complex medical care, nursing, along with rehabilitation can prolong and significantly affect the patient’s quality of life.</abstract>

Introduction. Leigh syndrome, also called subacute necrotizing encephalomyelopathy, belongs to a group of ultra-rare neurodegenerative mitochondrial diseases. It is most often caused by various genetic enzyme deficiencies. An infant with the syndrome is in need of constant care by their parents who have been appropriately trained and prepared for homecare.Aim. The aim of the study was to present issues connected with the home care of a child with Leigh syndrome and to propose a new model of a home care based on a chosen case study.Material and methods. The research employs the case study method. Used techniques include interviewing, observation, medical document analysis.Results. Homecare of a child with Leigh syndrome involves stabilising and supporting life functions and ensuring safety as well as meeting both their physiological and psychological needs.Conclusions. Present state of medicine does not allow for causative treatment. All that can be done is hindering the disease’s progress and moderating its symptoms. Complex medical care, nursing, along with rehabilitation can prolong and significantly affect the patient’s quality of life.

Homecare of a child suffering from Leig´h syndrome – a case study

Akademia Techniczno-Humanistyczna w Bielsku-Białej

Koło Naukowe Studentów Pielęgniarstwa i Ratownictwa Medycznego

Akademii Techniczno-Humanistyczna w Bielsku-Białej

Pielegniarstwo  XXI wieku / Nursing in the 21st Century

This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 3.0 License.

{"article-title":"Homecare of a child suffering from Leig´h syndrome \u2013 a case study"}

Introduction. Leigh syndrome, also called subacute necrotizing encephalomyelopathy, belongs to a group of ultra-rare neurodegenerative mitochondrial diseases....

Homecare of a child suffering from Leig´h syndrome – a case study

Online veröffentlicht: 18. Apr. 2019

Seitenbereich: 53 - 56

Eingereicht: 03. Okt. 2018

Akzeptiert: 13. Nov. 2018

DOI: https://doi.org/10.2478/pielxxiw-2018-0031

Schlüsselwörter
Leigh syndrome, homecare, nursing care

© 2019 Bożena Krawczyk et al., published by Sciendo

This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 3.0 License.

Homecare of a child suffering from Leig´h syndrome – a case study

Online veröffentlicht: 18. Apr. 2019

Seitenbereich: 53 - 56

Eingereicht: 03. Okt. 2018

Akzeptiert: 13. Nov. 2018

DOI: https://doi.org/10.2478/pielxxiw-2018-0031

SchlüsselwörterLeigh syndrome, homecare, nursing care

© 2019 Bożena Krawczyk et al., published by Sciendo

This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 3.0 License.

Schlüsselwörter
Leigh syndrome, homecare, nursing care