Medically dependent severe motor and intellectual disabilities: Time study of medical care.

BACKGROUND: Improvements in neonatal medicine and pediatric emergency medicine have led to an increasing number of children with severe disabilities requiring medical care, such as tracheal suction, on a daily basis. Most of these children, discharged directly from hospitals to their parents' homes, need home medical support. To provide data for the establishment of appropriate support systems, we analyzed the care for such children in a time study conducted at an institution.

METHODS: A minute-by-minute time study of the work of 33 staff members in a ward for patients (medically dependent severe motor and intellectual disabilities [SMID]) requiring frequent medical care was carried out over 48 h. Data were compared with those from a ward for ordinary non-medically dependent SMID patients.

RESULTS: Time of life care for medically dependent SMID and ordinary SMID was almost identical, but the time for medical care for the former was 10-fold longer than that of the latter. Also, tasks involving information exchange and recording of the time of care were performed fourfold more frequently in the medically dependent SMID than in the ordinary SMID ward.

CONCLUSIONS: Medically dependent SMID children and adults, predominantly with tracheostomies, needed much more medical care and more concentrated involvement of the staff compared with ordinary SMID. This study provides valuable data for the development of support systems for medically dependent SMID children being cared for at home. In addition, it sheds light on the situation faced by non-SMID children requiring frequent medical care.