[The parents' assessment and needs for home mechanical ventilation in patients with pediatric neurological disorders].
Parents' of patients with pediatric neurological disorders were sent a questionnaire, on their assessment and needs for home mechanical ventilation (HMV). Nine of 12 enrolled families responded. Respirator troubles were handled by a contracted HMV company. Decreased SpO2 levels and endotracheal bleeding were cared by family members under telephone instructions of doctors, though they felt anxious about dealing the problems. The mothers felt happy to live with their children by virtue of HMV, however, they had strong stress about the management of emergency care and medical care technique. They also felt very tired physically, but refreshed by being free from daily HMV care for a short time and enjoying their own time. The parents were not satisfied with the present house facilities and education system. They evaluated the induction of HMV positively but were most anxious for a better home care nursing system, doctors responding to a house call, more information on HMV, reduction of their anxieties and fatigue, and improvement of economical and educational environments.
Yamada
Ken-ichi
K
Department of Child Neurology, National Center Hospital for Mental, Nervous and Muscular Disorders, National Center of Neurology and Psychiatry, Kodaira, Tokyo.
Sugai
Kenji
K
Fukumizu
Michio
M
Hanaoka
Shigeru
S
Sasaki
Masayuki
M
Nonaka
Ikuya
I
D000293:Adolescent; D000328:Adult; D017028:Caregivers / Q000523:psychology; D002648:Child; D005260:Female; D006301:Health Services Needs and Demand / Q000592:standards*; D006699:Home Care Services; D006801:Humans; D008297:Male; D020380:Needs Assessment; D009422:Nervous System Diseases / Q000628:therapy*; D011788:Quality of Life; D011795:Surveys and Questionnaires; D012122:Ventilators, Mechanical