TY - JOUR
T1 - Who influences parents’ decision on life support treatments for children with spinal muscular atrophy type 1?
AU - González MeladoFermín, Jesús
AU - Di, Ciommo Vincenzo Maria
AU - Di Pietro, Maria Luisa
AU - Mastella, Chiara
AU - Chiarini, Testa Maria Beatrice: Cutrera Renato
PY - 2016
Y1 - 2016
N2 - Background: We aimed at assessing the influence of those who are part of the parents’ social network (family, friends and health professionals) when they are making decisions about nutritional and respiratory support treatments for their SMA 1 children.
Methods: We prepared a 46-question questionnaire to explore the factors that influence parents’ decisions. The influence of the different persons, the degree of satisfaction with the treatment elected and the consistency between the treatment information and the child’s status were assessed by the parents using a Likert scaleof ten (a higher score for a higher influence).
Results: The secondary-care physicians have the main influence on parent’s decisions about nutritional support (mean=6.4) and about respiratory support (mean=5.8).
This influence is higher among decisions about Percutaneous Endoscopic Gastrostomy (mean=8.0) and among decisions about Tracheostomy Ventilation (mean=8.0).
The degree of satisfaction with the chosen treatment is high (mean=7.9), and consistency between information about treatment and development of the illness also
has a high score (mean=8.3). The hospital ethics committee was involved in 13.3% of the cases.
Conclusions: The secondary-care physician influences parents’ decisions about nutritional and respiratory support, particularly while choosing PEG and TV. The
degree of satisfaction is very high regardless of the treatment chosen. The hospital ethics committee is not usually involved in the treatment decisions for SMA1 children.
AB - Background: We aimed at assessing the influence of those who are part of the parents’ social network (family, friends and health professionals) when they are making decisions about nutritional and respiratory support treatments for their SMA 1 children.
Methods: We prepared a 46-question questionnaire to explore the factors that influence parents’ decisions. The influence of the different persons, the degree of satisfaction with the treatment elected and the consistency between the treatment information and the child’s status were assessed by the parents using a Likert scaleof ten (a higher score for a higher influence).
Results: The secondary-care physicians have the main influence on parent’s decisions about nutritional support (mean=6.4) and about respiratory support (mean=5.8).
This influence is higher among decisions about Percutaneous Endoscopic Gastrostomy (mean=8.0) and among decisions about Tracheostomy Ventilation (mean=8.0).
The degree of satisfaction with the chosen treatment is high (mean=7.9), and consistency between information about treatment and development of the illness also
has a high score (mean=8.3). The hospital ethics committee was involved in 13.3% of the cases.
Conclusions: The secondary-care physician influences parents’ decisions about nutritional and respiratory support, particularly while choosing PEG and TV. The
degree of satisfaction is very high regardless of the treatment chosen. The hospital ethics committee is not usually involved in the treatment decisions for SMA1 children.
KW - spinal muscular atrophy type 1, parents, decisions
KW - spinal muscular atrophy type 1, parents, decisions
UR - http://hdl.handle.net/10807/94189
U2 - 10.15761/PD.1000101
DO - 10.15761/PD.1000101
M3 - Article
SN - 2397-950X
SP - 1
EP - 6
JO - PEDIATRIC DIMENSIONS
JF - PEDIATRIC DIMENSIONS
ER -