Introduction: The aim of the study was to gain differentiated and plausible data on care load for severely and multiply disabled children and teenagers. Those data are required for public health as well as for forensic reasons.
Methods: In 33 children and teenagers between 3 and 18 years (20 in nursing home care, 13 in family care) all measures of care were exactly documented (in minute grades) over 7 days. All individuals were severely disabled and immobile. Due to insufficient plausibility the data of 6 individuals were excluded, so that the final analysis is based on 27 records over a whole week each.
Results: The average amount of time for all measures of care was 41 hours and 12 minutes per week, family care exceeding nursing home care by 82 %. Regarding basic care solely, the average amount of time was 26 hours and 7 minutes, family care exceeding nursing home care only by 22 %. On the other hand, the deal of time for stimulation, therapy and leisure activities in families was more than fourfold in comparison with nursing home. In both areas, care load of feeding was found most time consuming and emotionally distressing.
Discussion: The documented times for basic care show relatively small differences between family and nursing home care and are in good correspondence with findings in other western countries. Therefore it can be assumed that an average time amount of about 26 hours per week or about 3S hours per day respectively may reflect the real need for basic care in immobile and severely handicapped children and teenagers. The great deal of time documented in family care for general stimulation and leisure activities can be interpreted as an expression of special attention and emotional attachment, so acting as an important factor of quality of life.