Homecare of a child suffering from Leigh syndrome - a case study

Abstract

HOMECARE OF A CHILD SUFFERING FROM LEIGH SYNDROME - A CASE STUDY

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.