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Dev Med Child Neurol. 1989 Dec;31(6):737-45.

Evaluation of care-load for individuals with spastic tetraplegia.

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University of Göteborg, Department of Paediatrics II, Sweden.


A care-load study was performed on a homogeneous group of 51 children, adolescents and young adults with spastic tetraplegia, born in Sweden between 1959 and 1978. All were immobile and severely mentally retarded, none could speak and the majority had epilepsy, scoliosis and contractures. 16 were living with their families and 35 in care units. The mean time spent meeting basic care requirements was 24.7 hours/week (median 23.1), with feeding being the most time-consuming. 47 individuals went to training schools or day centres daily. Treatment by physiotherapists totalled a mean of 2.3 hours/week (median 1.3). The most difficult aspect of care was lifting, and a hoist was the most frequently requested aid. Eight families wanted more relief care. This study quantifies the care-load of severely handicapped individuals and the quality of life for them and their carers.

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