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[Evaluation of care load for children and teenagers with severe and multiple handicaps. A quantitative empirical
1Kinderneurologisches Zentrum der Rheinischen Kliniken Bonn, Germany.
Insights
Care load for severely disabled children requires significant time, with family care demanding more overall hours than nursing homes. Basic care needs are similar, but families provide more stimulation and leisure, enhancing quality of life.
Area of Science:
- Pediatrics
- Rehabilitation Medicine
- Public Health
Background:
- Accurate data on care load for severely and multiply disabled children and teenagers is essential for public health and forensic purposes.
- Understanding care requirements informs resource allocation and policy development.
Purpose of the Study:
- To quantify and differentiate care load in severely and multiply disabled children and teenagers.
- To compare care time between nursing home and family care settings.
Main Methods:
- Detailed minute-by-minute documentation of all care measures over seven days for 27 immobile, severely disabled children and teenagers (aged 3-18).
- Data collected from 20 children in nursing home care and 13 in family care, with exclusions for implausible data.
Main Results:
- Average total care time was 41 hours 12 minutes per week, with family care 82% higher than nursing home care.
- Basic care averaged 26 hours 7 minutes weekly (family care 22% higher).
- Family care involved over four times the stimulation, therapy, and leisure activities compared to nursing homes; feeding was the most time-consuming and distressing task in both settings.
Conclusions:
- Basic care time (approx. 26 hours/week) shows minimal differences between family and nursing home settings, aligning with international findings.
- This suggests a standardized need for basic care for immobile, severely handicapped children.
- Increased time for stimulation and leisure in family care highlights its role in enhancing quality of life through emotional attachment.
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.
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