[What a tracheostomy changes in a child with a neuromuscular disease].
BACKGROUND
The severe course of certain early onset neuromuscular disorders may lead to the indication of a tracheostomy for a child, a step that parents dread. Previous publications report that families in this situation face particular difficulties and need to develop new strategies of organization and adaptation in order to cope with the new context of life.


OBJECTIVE
The aim of this study is identifying, through the mother's eye, what changes implies tracheostomy for the child and his family.


METHODS
A qualitative study using semi strutured interviews was performed to the mothers of tracheostomized children affected with a severe neuromuscular disorder.


RESULTS
The study revealed four main consequences: tracheostomy immediatly led to a feeling of security for the mother; the need of ventilation during the day increased the quotidian difficulties, in particular concerning social activities; tracheostomy enhanced social stigmatization; finally, tracheostomy requires that parents are specifically trained to be able to perform high level of paramedical care, what leads to a lack of autonomy and the complexity of burden for caregivers.


CONCLUSIONS
Whenever respiratory insufficiency becomes very severe and there is not ventilatory autonomy, tracheostomy, synonimous of life, has as main inconvenient the need of handling different machines, what becomes a significant difficulty in the daily life. In the transition before/ after the tracheotomy, the nurse plays a key role in the evolution of the health care function of parents.
Hôpital R. Poincaré, Pôle pédiatrie, Garches, Université Paris-Descartes, Laboratoire d'Ethique Médicale et Médecine Légale EA 4569. brigitterul.paris@gmail.com
Brigitte
B
Rul
Susana
S
Quijano-Roy
Anne
A
Golse
Dominique
D
Beynier
Brigitte
B
Estournet
Isabelle
I
Desguerre
Christine
C
Barnerias
Christian
C
Herve
D017028:Caregivers / Q000523:psychology*; D002648:Child; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D009035:Mothers / Q000523:psychology*; D009468:Neuromuscular Diseases / Q000523:psychology*; D057545:Social Stigma; D014139:Tracheostomy / Q000523:psychology*