Article short contents


Slovenska pediatrija 2018; 25: 31-39


Professional article

PSYCHOLOGICAL ASPECTS OF CARING FOR CHILDREN AND ADOLESCENTS WITH NEUROMUSCULAR DISORDERS: CHILDREN’S ADJUSTMENT AND CHALLENGES FACED BY THEIR FAMILIES

P. Lešnik Musek
Klinični oddelek za otroško, mladostniško in razvojno nevrologijo, Pediatrična klinika, Univerzitetni klinični center, Ljubljana, Slovenija

L. Košmrlj
Oddelek za psihologijo, Filozofska fakulteta, Univerza v Ljubljani, Ljubljana, Slovenija

D. Gosar
Enota za razvojno psihologijo in nevropsihologijo, Klinični oddelek za otroško, mladostniško in razvojno nevrologijo, Pediatrična klinika, Univerzitetni klinični center Ljubljana, Ljubljana, Slovenija

T. Meško
Enota za razvojno psihologijo in nevropsihologijo, Klinični oddelek za otroško, mladostniško in razvojno nevrologijo, Pediatrična klinika, Univerzitetni klinični center Ljubljana, Ljubljana, Slovenija

Abstract

In individuals with neuromuscular disorders, the physical disability is often accompanied by co-morbid cognitive deficits and difficulties in psychosocial adaptation. The goal of this article is to review the existing literature on the prevalence and nature of cognitive, emotional, behavioural and social difficulties in young people with neuromuscular disorders. It also aims to shed light on important factors that contribute to the successful adaptation of an individual and his family to the disorder, highlighting the role of a supportive social environment and appropriate professional care. Finally, several suggestions are given on how to facilitate more comprehensive care for this group of young people and their families.

Key words: muscular dystrophies, psychosocial adjustment, cognitive dysfunction, intellectual disability, family relations, psychosocial support systems.

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