ICNC Abstracts, ICNC 2018

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Home medical care for children with severe motor and mental disabilities
MARIKO MAEZAWA

Last modified: 2018-09-09

Abstract


Purpose
In Japan, for over fifty years, children suffering from severe motor and intellectual disabilities have been supported by home visit medical care. We report on the experience of medical examinations and treatment at home for children with disabilities, and discuss the various needs of the patients and caregivers.

Methods
Eleven patients (8 male, 3 female; ages 2 to 14) with severe motor and intellectual disabilities who received home medical care were retrospectively studied. Their underlying medical conditions differed: cerebral palsy, congenital syndrome, chromosomal abnormality. Home visits by a medical doctor and nurse were carried out twice a month by reservation. 24- hours emergency home call and emergency visiting were available.

Results
Physical disabilities were very severe in ten patients, classified as first class in the Japanese scale(bedridden)All patients required tube-feeding nutrition at birth. Five patients were fed by percutaneous endoscopic gastrostomy tube, and two patients were fed by nasogastric tube. Two patients received home oxygen therapy (one on a ventilator): two patients received tracheostomy (one could walk). Four patients had severe epilepsy.

Conclusions
Family caregivers (mainly mothers) of children requiring home medical care faced many problems especially in regard to their lack of medical equipment and structured self- health management. We provided medication, prescribing medicine and shot vaccination and much welfare support. We conclude that medical teams must seek to communicate more with their local hospitals, to improve support of such patients. The transition of pediatric care to family care is fraught with problems.


Keywords


home care; transitional care

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