CARE-LOAD FOR CHILDREN AND YOUNG ADULTS WITH SEVERE CEREBRAL PALSY
Given the present concern about the costs of health care and the allocation of limited resources, it is becoming increasingly important to identify the care needs for severely handicapped individuals. Despite the social implications, however, there is a surprising paucity of research on the care-load for this population. Care-load is a concept based on a model developed by Orem (1991), which has been used to determine the amount of nursing care required by a given individual during an acute illness. The model can also be used for people with chronic neurological disability and developmental problems, whose care needs are greater than their self-care capabilities. Raven (1989) considered the application of Orem's self-care model to nursing practice for developmental disabilities, noting that 'people with developmental disabilities experience self-care deficits, to varying degrees according to their diagnosis'. Many individuals with cerebral palsy have self-care deficits, so frequently care functions must be undertaken by others, either within the family or in institutions. A recent study from Sweden (Edebol-Tysk 1989) is the only investigation focusing specifically on the careload for individuals with severe spastic quadriplegia. c The purpose of the present study was to analyse the care-load at the Matheny
SchooVHospital, an 89-bed facility serving children and young adults with severe, chronic neurological handicaps. It sought partially to replicate and to expand on the Swedish study, and to explore the human and material resources required to provide adequate care for the severely handicapped.
Subjects Of the 66 residential students with a diagnosis of cerebral palsy enrolled at Matheny SchooVHospital, 44 (25 male, 19 female) participated in the study. Their ages ranged from 8.7 to 28.6 (mean 18.9) years (Fig. 1). All had severe spastic quadriplegia and all were non-ambulatory. They had diffuse hypertonia, and most had severe pseudobulbar palsy which affected their feeding and swallowing, as well as speech. 38 of the 44 were fed orally and six were fed via gastrostomies. 11 were able to communicate with others orally, seven used electronic augmentation, 16 used communication boards, and 10 communicated by gesture and other nonverbal means. 12 used powered wheelchairs; the others used manually operated wheelchairs. 17 had severe scoliosis, defined as a curve that ultimately would compromise pulmonary function; 18 had mild scoliosis, defined as less than 15" and not requiring intervention; and nine had no spinal deformity. They were of average or below-average intelligence, the
979
(AGE) YRS
F&. I . Age distribution.
IL
I0
I
II
1
1
i
8 c UI
$
6
z 4
2
0 PROFOUM)
SEVERE
MOOUIRTE
MILD
BDRDERLN
LOWVG
NJVERRGE
Fig. 2. Intellectual levels.
TABLE I Comparison of two studies
980
Matheny
Sweden
SEX: malelfemale
25/19
24/27
Age (yrs) Severe mental retardation Verbal Residential placement Gastrostomies
8-28
5-24
19.3% 25%
100% 0%
100%
69%
majority being in the moderate to borderline mentally retarded range (Fig. 2). They came from all socio-economic levels. A comparison of the study populations in Sweden and at Matheny is shown in Table I.
Method
6/44 (7.3%) 4/51 (7.8%)
Each student was monitored over a period of seven days, for 24 hours per day. 10 to 12 students participated each week over the eight-week study period. They were observed and timed during basic .. . . . ----- care P
TABLE I I Ten major activity categories 1. ADLs
2. 3. 4. 5.
Feeding MedicaVnursing care Sleep Leisure
6. Educational/vocational 7. Counseling/psychosocial 8. Therapy 9. Transportation 10. Home
Activities of daily living (including bathing, dressing, grooming, brushing teeth and toileting)
m01
2
Provided on-site by nurses and physicians and off-site by consultants Leisure activities, including television, games, sports, informal socialization, erc. Instructional or work-related activities on- or off-site Counseling, support, psychotherapy, assisting with phone calls to family or friends Music, occupational, physical, recreational and speech therapies Includes on-site assistance and travel off-site Weekend and holiday visits to family
TABLE 111 Time per week spent in 10 major activities Hours
Activity
I . ADLs Feeding Medical care Sleep Leisure Educational/vocational Counseling/psychosocial Therapy Transportation Home
2. 3. 4. 5. 6. 7. 8. 9. 10.
activities such as feeding, personal hygiene, dressing and toileting, as well as during instruction and therapy. A data-collection form was devised and was attached to a clipboard on the student's wheelchair. The form accompanied the student throughout the day: as the location and/or activity changed, different caregivers and staff members became responsible for its completion. Extensive training was necessary to enable the student's activities to be recorded minute by minute. Department heads and all staff members were instructed in the use of the data form. To ensure that records were accurately maintained, two staff monitors reviewed all the data forms at the beginning and end of each day, answered questions and reviewed procedures with staff members whose records might have been inconsistent with study procedures. Of 7392 hours of study time for the 44 students, 6498 (88 per cent) were accounted for.
Mean
Range
%
10.03 14.84 0.85 60.20 24.78 13.68 0-81 2.45 2.74 17.22
3 -7-26.5 6.623.9 04.91 30.2-83.4 6.9-55'8 0-31.9 0-5.6 0-7.9 0.52-9.9 0-90.8
5.97 8.83 0-50 35-83 14.75 8.19 0.48 1.45 1 *63 10-25
The care-load study focused on each student as he or she proceeded through various activities. It documented each specific activity and the human resources required to enable the students to participate in these activities. It did not focus on staff when not involved with these activities, so did not reflect the many hours that staff spent on administrative and other activities. As a result of surveys, interviews with department heads and pilot testing, 10 major categories of activity were identified (Table 11). These were considered to encompass the predominant activities of the students.
-
Results The hours and percentage of time each week spent in the various activities are shown in Table 111. Care-load varied significantly according to the activity in which the student was involved. For example students spent 10
981
TABLE 1V Care-loads in Swedish and present studies u,
9
e B
Acrivilies
Basic care Feeding Hygiene Dressing Medication
Educational/vocational Therapy
00
a
> -0
m c
E
.9 I :
u L
2
U m
-
u5
982
Mean hours per week Sweden Matheny
22.9 10.8 6.2 3.5 0-6 22.1 2,3
24.9 14.8 6.8 2.9 0.3 13.8 2.5
hours a week in activities of daily living (ADLS), including bathing, dressing, grooming, toileting and dental hygiene. Significant positive correlations were found between ADLS and age (r=0.33, p = 0 - 0 3 ) , ADLS and mobility (r=0.04, p = 0.007), ADLS and self-direction (r=O-40, p=007) and ADLs and IQ (r=O.34, p=0*02). 14.8 hours a week were spent in feeding activities, including both oral and gastrostomy-tube feedings. Students were occupied for 0 . 9 hours a week in nursing and medical activities, including examinations, direct treatments and receiving medication. There was a significant negative correlation between the amount of time spent in medical care and the student's age (r=0.35, p=0.02), and IQ(r=0*31,p=0.038). If these three activities-Ams, feeding and nursing/medical care-were combined into a single basic care category, comparable to that in the Swedish study, 24.9 hours a week were spent in basic care activities. The students slept for 60.2 hours a week, and 24.8 hours a week were spent in leisure activities. Educational and vocational activities occupied 13.7 hours a week. The younger students attended various classes on-site; the older students attended pre-vocational and vocational classes both on-site and off-site. The amount of time spent in instruction did not correlate with any of the independent variables (e.g. age, la). Counseling or other psychosocially supportive activities occupied 0 . 8 hours a week. The students spent 2.5 hours a week in various habilitative therapies, including sessions in which specialized
equipment was designed and fitted. An average of 2.7 hours a week were spent on transportation. This included moving from one location to another at Matheny, as well as off-site activities such as shopping, horse-back riding and field trips. The transportation time was positively correlated with age ( r = 0.28, p=0.065), mobility (r=0.37, p=O*Ol), self-direction ( r = 0-455, p = 0.002) and IQ( r = 0 * 4 3 ,p=0*003). Students spent an average of 17.2 hours a week at home with their families, although not all students went home.
Discussion Considering the potential for cultural, methodological and personal differences in the care-load for severely disabled individuals, the findings in this study are remarkably similar to those in the Swedish study by Edebol-Tysk (1989) (Table IV). The average time spent in providing basic care in the Swedish units was 22.9 hours a week. This included feeding, hygiene, dressing, night-care, toileting and medication. Combining our ADLS (hygiene, dressing, toileting, grooming, night-care, feeding and nursing/ medical care), the basic care-load was 24-9 hours a week. This appears to support the validity of the findings in both studies. In addition, the figures suggest that the basic care needs of those with severe cerebral palsy can be predicted, regardless of the type of care being provided. Considering only feeding, in the Swedish study this took up to 10.8 hours a week, or 48-9 per cent of basic care, compared with 14.8 hours at Matheny, or 59.7 per cent of basic care. The greater amount of time spent on feeding at Matheny probably reflects the therapeutic and independence-training efforts of the speech therapists and other staff who assisted with feeding. The Swedish study observed that there was no correlation between feeding and age and suggested that, given the severity of the feeding problems, training was ineffectual. Our study confirmed this, which suggests that the severe pseudobulbar palsy of many individuals with cerebral palsy may be resistant to most intervention efforts. This does not negate the fact, however,
that better feeding methods enhance nutrition and prevent complications such as aspiration and pneumonia. In addition, since many of our students function at a higher cognitive level than those in the Swedish study, more time was spent in personally choosing food and socializing during meals. The prevalence of cerebral palsy among school-age children is approximately 2-2/1000 (Newacheck and Taylor 1992). Compared with other chronic conditions (deafness, blindness, musculoskeletal impairment, diabetes mellitus, asthma, epilepsy, etc.), cerebral palsy was found to be the most limiting on children’s activities (Newacheck and Taylor 1992). The lack of normal progression to independence greatly affects family dynamics, and the influence on parents and siblings has been well documented (Cadman et al. 1991, Hirst 1991, Rosenbaum et af. 1992). It is evident that tremendous commitment by families and society is required to provide optimal care and quality of life for this population. It is also apparent that there is a critical need for respite services for families caring for the severely disabled at home. Such programs are lacking or not available at all in many communities. When one considers that approximately 25 hours a week are required for basic care, not to mention the additional time needed to support educational, social and leisure activities, it is clear that some temporary relief must be made available to families. The impact of respite care on the quality of family life deserves further research.
As research on care-load evolves, it seems to be essential to analyse what factors have positive and negative impacts on care-load. With present advances in technology, it is important to investigate to what degree augmentative communication systems and powered mobility affect care-load, and how other interventions such as gastrostomy influence basic care requirements. It is also important to assess how a disabled individual’s attitude and orientation toward independence versus dependence affect care-load. In our facility, self-direction is actively encouraged as part of the therapeutic program. It is nurtured as a compensatory mechanism for the lack of self-care capability. The influence of self-direction on care-load has yet to be studied. Care-load data are important to families, community programs, institutions and society in general. This information is essential for accurate care-load planning and preparation for the integration of severely disabled individuals into the general population.
-7-
m
Accepted f o r publication 19th May 1992. Acknowledgements We express our appreciation to the Blanche and Irving Laurie Foundation for supporting this research, as well as to the staff and residents of the Matheny School/Hospital for their participation. Authors’ Appointments *Gabor Barabas, M.D., Medical Director; Wendy S. Matthews, Ph.D., Research Consultant; Paul Zumoff, Ph.D., Consultant; The Matheny School/Hospital, Peapack, New Jersey 01911. *Correspondence to first author.
SUMMARY Care-load was analysed for 44 children and young adults (mean age 18.9 years) with severe spastic quadriplegia. All were enrolled in a residential school/hospital and used wheelchairs. The majority were in the moderate to borderline range of mental retardation. They were monitored for 24 hours a day over a seven-day period, and were timed in 10 major activities, including basic care (bathing, toileting, dressing, grooming, feeding), as well as sleep, leisure, education/vocation, counseling/ psychosocial therapy, medicallnursing care, transportation, and at home. The findings replicated those of an earlier Swedish study, which suggests that the basic care needs of individuals with severe cerebral palsy may be predictable, regardless of the type of care being provided. RESUME Charge de soins pour les IMC graves, enfonts ou jeunes adultes La charge des soins demandes par une quadriplegie spastique grave a ete appreciee chez 44 enfants et jeunes adultes (moyenne d’lge de 18,9 ans). Tous etaient places dans une institution medicoeducative et etaient en fauteuil roulant. La majorite presentaient un retard mental modere a limite. 11s furent surveillks 24 heures par jour durant une periode de sept jours, et les temps d’intervention furent precisis pour dix activites majeures incluant les soins de base (bain, toilette, habillement, pansements, alimentation) aussi bien que sommeil, distractions, kducation/occupation, thtrapie de conseil et d’insertion psychosociale, soins midicaw, transports et problemes a domicile. Les donnies
983
< *
u:
$ d 5 .-
3
u)
a
9 -0 Q C
e
2! .-
6 L.
2
rejoignent celles d’une etude suedoise anterieure, suggerant que les besoins en soins fondamentaux des IMC tres atteints, peuvent Otre prkvus independamment du type de soins fournis. ZUSAMMENFASSUNG Pfegeaufwand bei Kindern und Jugendlichen mil sch werer Cerebralparese Bei 44 Kindern und Jugendlichen (mittleres Alter 18.9 Jahre) mit schwerer spastischer Tetraplegie wurde der Pflegeaufwand untersucht. Alle waren in einer Schule/Krankenhaus untergebracht und benutzten einen Rollstuhl. Die meisten hatten eine leichte bis mittelgradige geistige Retardierung. Sie wurden uber einen Zeitraum von sieben Tagen rund um die Uhr iiberwacht und bei 10 Hauptaktivitaten zeitlich iiberpruft, wie allgemeine Pflege (Baden, Toilette, Anziehen, Pflege, Fiittern), sowie Schlaf, Freizeit, Schule/Beruf, Beratung/Physiotherapie, medizinische/pflegerische Betreuung, Transport und zu Hause. Die Berunde decken sich mit denen einer friiheren schwedischen Studie, die besagt, dal3 die allgemeinen Pflegebedurfnisse von Patienten mit schwerer Cerebralparese abschatzbar sind, wobei die Art der Pflege keine Rolle spielt. RESUMEN Cuidado intensivo para niitos y adultos jovenes con paralisis cerebral grave Se analizo el cuidado intensivo en 44 niilos y adultos jovenes (edad promedio de 18.9 afios) con cuadriplejia-espastica grave. Todos estaban en una escuela residencial/hospital y usaban silla de ruedas. La mayoria estaba en la zona borderline-moderada del retraso mental. Fueron monitorizados las 24 horas del dia durante un period0 de siete dias y fueron controlados en 10 actividades rqayores incluyendo cuidados basicos (batlo, lavabo, vestirse, arreglarse y comer) asi como suetlo, tiempo libre, educacion, vocacion, consejo, terapia psicosocial, cuidados medicos/enfermeria, transporte y vida en casa. Los hallazgos fueron 10s mismos que 10s de un estudio sueco anterior, lo cual sugiere que las necesidades basicas de 10s individuos con paralisis cerebral pueden ser predecibles, independientemente del tipo de cuidados que se proporcionen. References Cadman, D., Rosenbaum, P., Boyle, M., Offord, D. R. (1991) ‘Children with chronic illness: familv and paren; demographic , characteristics and psychosocial adjustment. Pediatrics, 87, 884-889. Edebol-Tysk, K. (1989) ‘Evaluation of care-load for individuals with spastic tetraplegia.’ Developmental Medicine and Child Neurology, 31,737-745.
Hirst, J. (1991) ‘Dissolution and reconstitution of families with a disabled young person.’ Developmental Medicine and Child Neurology, 33, 1073-1079. Newacheck, P. W., Taylor, W. R. (1992)
984
‘Childhood chronic illness: prevalence, severity, and impact.’ American Journal of Public Healfh, 82, 3-37 1. Orem, D. E. (1991) Nursing: Conceprs of Praclice. St. Louis: MosbyIYear Book. Raven, M. (1989) ‘Application of Orem’s self-care model to nursing practice in developmental disability.’ Ausiralian Journal of Advanced Nursing, 6, 16-23. Rosenbaum, P. L., King, S. M., Cadman, D. T. (1992) ‘Measuring processes of caregiving to physically disabled children and their families. I: Ideiiiifying relevant components of care.’ DevdJpmental Medicine and Child Neurology. 34, 103-114.
Given the present concern about the costs of health care and the allocation of limited resources, it is becoming increasingly important to identify the care needs for severely handicapped individuals. Despite the social implications, however, there is a surprising paucity of research on the care-load for this population. Care-load is a concept based on a model developed by Orem (1991), which has been used to determine the amount of nursing care required by a given individual during an acute illness. The model can also be used for people with chronic neurological disability and developmental problems, whose care needs are greater than their self-care capabilities. Raven (1989) considered the application of Orem's self-care model to nursing practice for developmental disabilities, noting that 'people with developmental disabilities experience self-care deficits, to varying degrees according to their diagnosis'. Many individuals with cerebral palsy have self-care deficits, so frequently care functions must be undertaken by others, either within the family or in institutions. A recent study from Sweden (Edebol-Tysk 1989) is the only investigation focusing specifically on the careload for individuals with severe spastic quadriplegia. c The purpose of the present study was to analyse the care-load at the Matheny
SchooVHospital, an 89-bed facility serving children and young adults with severe, chronic neurological handicaps. It sought partially to replicate and to expand on the Swedish study, and to explore the human and material resources required to provide adequate care for the severely handicapped.
Subjects Of the 66 residential students with a diagnosis of cerebral palsy enrolled at Matheny SchooVHospital, 44 (25 male, 19 female) participated in the study. Their ages ranged from 8.7 to 28.6 (mean 18.9) years (Fig. 1). All had severe spastic quadriplegia and all were non-ambulatory. They had diffuse hypertonia, and most had severe pseudobulbar palsy which affected their feeding and swallowing, as well as speech. 38 of the 44 were fed orally and six were fed via gastrostomies. 11 were able to communicate with others orally, seven used electronic augmentation, 16 used communication boards, and 10 communicated by gesture and other nonverbal means. 12 used powered wheelchairs; the others used manually operated wheelchairs. 17 had severe scoliosis, defined as a curve that ultimately would compromise pulmonary function; 18 had mild scoliosis, defined as less than 15" and not requiring intervention; and nine had no spinal deformity. They were of average or below-average intelligence, the
979
(AGE) YRS
F&. I . Age distribution.
IL
I0
I
II
1
1
i
8 c UI
$
6
z 4
2
0 PROFOUM)
SEVERE
MOOUIRTE
MILD
BDRDERLN
LOWVG
NJVERRGE
Fig. 2. Intellectual levels.
TABLE I Comparison of two studies
980
Matheny
Sweden
SEX: malelfemale
25/19
24/27
Age (yrs) Severe mental retardation Verbal Residential placement Gastrostomies
8-28
5-24
19.3% 25%
100% 0%
100%
69%
majority being in the moderate to borderline mentally retarded range (Fig. 2). They came from all socio-economic levels. A comparison of the study populations in Sweden and at Matheny is shown in Table I.
Method
6/44 (7.3%) 4/51 (7.8%)
Each student was monitored over a period of seven days, for 24 hours per day. 10 to 12 students participated each week over the eight-week study period. They were observed and timed during basic .. . . . ----- care P
TABLE I I Ten major activity categories 1. ADLs
2. 3. 4. 5.
Feeding MedicaVnursing care Sleep Leisure
6. Educational/vocational 7. Counseling/psychosocial 8. Therapy 9. Transportation 10. Home
Activities of daily living (including bathing, dressing, grooming, brushing teeth and toileting)
m01
2
Provided on-site by nurses and physicians and off-site by consultants Leisure activities, including television, games, sports, informal socialization, erc. Instructional or work-related activities on- or off-site Counseling, support, psychotherapy, assisting with phone calls to family or friends Music, occupational, physical, recreational and speech therapies Includes on-site assistance and travel off-site Weekend and holiday visits to family
TABLE 111 Time per week spent in 10 major activities Hours
Activity
I . ADLs Feeding Medical care Sleep Leisure Educational/vocational Counseling/psychosocial Therapy Transportation Home
2. 3. 4. 5. 6. 7. 8. 9. 10.
activities such as feeding, personal hygiene, dressing and toileting, as well as during instruction and therapy. A data-collection form was devised and was attached to a clipboard on the student's wheelchair. The form accompanied the student throughout the day: as the location and/or activity changed, different caregivers and staff members became responsible for its completion. Extensive training was necessary to enable the student's activities to be recorded minute by minute. Department heads and all staff members were instructed in the use of the data form. To ensure that records were accurately maintained, two staff monitors reviewed all the data forms at the beginning and end of each day, answered questions and reviewed procedures with staff members whose records might have been inconsistent with study procedures. Of 7392 hours of study time for the 44 students, 6498 (88 per cent) were accounted for.
Mean
Range
%
10.03 14.84 0.85 60.20 24.78 13.68 0-81 2.45 2.74 17.22
3 -7-26.5 6.623.9 04.91 30.2-83.4 6.9-55'8 0-31.9 0-5.6 0-7.9 0.52-9.9 0-90.8
5.97 8.83 0-50 35-83 14.75 8.19 0.48 1.45 1 *63 10-25
The care-load study focused on each student as he or she proceeded through various activities. It documented each specific activity and the human resources required to enable the students to participate in these activities. It did not focus on staff when not involved with these activities, so did not reflect the many hours that staff spent on administrative and other activities. As a result of surveys, interviews with department heads and pilot testing, 10 major categories of activity were identified (Table 11). These were considered to encompass the predominant activities of the students.
-
Results The hours and percentage of time each week spent in the various activities are shown in Table 111. Care-load varied significantly according to the activity in which the student was involved. For example students spent 10
981
TABLE 1V Care-loads in Swedish and present studies u,
9
e B
Acrivilies
Basic care Feeding Hygiene Dressing Medication
Educational/vocational Therapy
00
a
> -0
m c
E
.9 I :
u L
2
U m
-
u5
982
Mean hours per week Sweden Matheny
22.9 10.8 6.2 3.5 0-6 22.1 2,3
24.9 14.8 6.8 2.9 0.3 13.8 2.5
hours a week in activities of daily living (ADLS), including bathing, dressing, grooming, toileting and dental hygiene. Significant positive correlations were found between ADLS and age (r=0.33, p = 0 - 0 3 ) , ADLS and mobility (r=0.04, p = 0.007), ADLS and self-direction (r=O-40, p=007) and ADLs and IQ (r=O.34, p=0*02). 14.8 hours a week were spent in feeding activities, including both oral and gastrostomy-tube feedings. Students were occupied for 0 . 9 hours a week in nursing and medical activities, including examinations, direct treatments and receiving medication. There was a significant negative correlation between the amount of time spent in medical care and the student's age (r=0.35, p=0.02), and IQ(r=0*31,p=0.038). If these three activities-Ams, feeding and nursing/medical care-were combined into a single basic care category, comparable to that in the Swedish study, 24.9 hours a week were spent in basic care activities. The students slept for 60.2 hours a week, and 24.8 hours a week were spent in leisure activities. Educational and vocational activities occupied 13.7 hours a week. The younger students attended various classes on-site; the older students attended pre-vocational and vocational classes both on-site and off-site. The amount of time spent in instruction did not correlate with any of the independent variables (e.g. age, la). Counseling or other psychosocially supportive activities occupied 0 . 8 hours a week. The students spent 2.5 hours a week in various habilitative therapies, including sessions in which specialized
equipment was designed and fitted. An average of 2.7 hours a week were spent on transportation. This included moving from one location to another at Matheny, as well as off-site activities such as shopping, horse-back riding and field trips. The transportation time was positively correlated with age ( r = 0.28, p=0.065), mobility (r=0.37, p=O*Ol), self-direction ( r = 0-455, p = 0.002) and IQ( r = 0 * 4 3 ,p=0*003). Students spent an average of 17.2 hours a week at home with their families, although not all students went home.
Discussion Considering the potential for cultural, methodological and personal differences in the care-load for severely disabled individuals, the findings in this study are remarkably similar to those in the Swedish study by Edebol-Tysk (1989) (Table IV). The average time spent in providing basic care in the Swedish units was 22.9 hours a week. This included feeding, hygiene, dressing, night-care, toileting and medication. Combining our ADLS (hygiene, dressing, toileting, grooming, night-care, feeding and nursing/ medical care), the basic care-load was 24-9 hours a week. This appears to support the validity of the findings in both studies. In addition, the figures suggest that the basic care needs of those with severe cerebral palsy can be predicted, regardless of the type of care being provided. Considering only feeding, in the Swedish study this took up to 10.8 hours a week, or 48-9 per cent of basic care, compared with 14.8 hours at Matheny, or 59.7 per cent of basic care. The greater amount of time spent on feeding at Matheny probably reflects the therapeutic and independence-training efforts of the speech therapists and other staff who assisted with feeding. The Swedish study observed that there was no correlation between feeding and age and suggested that, given the severity of the feeding problems, training was ineffectual. Our study confirmed this, which suggests that the severe pseudobulbar palsy of many individuals with cerebral palsy may be resistant to most intervention efforts. This does not negate the fact, however,
that better feeding methods enhance nutrition and prevent complications such as aspiration and pneumonia. In addition, since many of our students function at a higher cognitive level than those in the Swedish study, more time was spent in personally choosing food and socializing during meals. The prevalence of cerebral palsy among school-age children is approximately 2-2/1000 (Newacheck and Taylor 1992). Compared with other chronic conditions (deafness, blindness, musculoskeletal impairment, diabetes mellitus, asthma, epilepsy, etc.), cerebral palsy was found to be the most limiting on children’s activities (Newacheck and Taylor 1992). The lack of normal progression to independence greatly affects family dynamics, and the influence on parents and siblings has been well documented (Cadman et al. 1991, Hirst 1991, Rosenbaum et af. 1992). It is evident that tremendous commitment by families and society is required to provide optimal care and quality of life for this population. It is also apparent that there is a critical need for respite services for families caring for the severely disabled at home. Such programs are lacking or not available at all in many communities. When one considers that approximately 25 hours a week are required for basic care, not to mention the additional time needed to support educational, social and leisure activities, it is clear that some temporary relief must be made available to families. The impact of respite care on the quality of family life deserves further research.
As research on care-load evolves, it seems to be essential to analyse what factors have positive and negative impacts on care-load. With present advances in technology, it is important to investigate to what degree augmentative communication systems and powered mobility affect care-load, and how other interventions such as gastrostomy influence basic care requirements. It is also important to assess how a disabled individual’s attitude and orientation toward independence versus dependence affect care-load. In our facility, self-direction is actively encouraged as part of the therapeutic program. It is nurtured as a compensatory mechanism for the lack of self-care capability. The influence of self-direction on care-load has yet to be studied. Care-load data are important to families, community programs, institutions and society in general. This information is essential for accurate care-load planning and preparation for the integration of severely disabled individuals into the general population.
-7-
m
Accepted f o r publication 19th May 1992. Acknowledgements We express our appreciation to the Blanche and Irving Laurie Foundation for supporting this research, as well as to the staff and residents of the Matheny School/Hospital for their participation. Authors’ Appointments *Gabor Barabas, M.D., Medical Director; Wendy S. Matthews, Ph.D., Research Consultant; Paul Zumoff, Ph.D., Consultant; The Matheny School/Hospital, Peapack, New Jersey 01911. *Correspondence to first author.
SUMMARY Care-load was analysed for 44 children and young adults (mean age 18.9 years) with severe spastic quadriplegia. All were enrolled in a residential school/hospital and used wheelchairs. The majority were in the moderate to borderline range of mental retardation. They were monitored for 24 hours a day over a seven-day period, and were timed in 10 major activities, including basic care (bathing, toileting, dressing, grooming, feeding), as well as sleep, leisure, education/vocation, counseling/ psychosocial therapy, medicallnursing care, transportation, and at home. The findings replicated those of an earlier Swedish study, which suggests that the basic care needs of individuals with severe cerebral palsy may be predictable, regardless of the type of care being provided. RESUME Charge de soins pour les IMC graves, enfonts ou jeunes adultes La charge des soins demandes par une quadriplegie spastique grave a ete appreciee chez 44 enfants et jeunes adultes (moyenne d’lge de 18,9 ans). Tous etaient places dans une institution medicoeducative et etaient en fauteuil roulant. La majorite presentaient un retard mental modere a limite. 11s furent surveillks 24 heures par jour durant une periode de sept jours, et les temps d’intervention furent precisis pour dix activites majeures incluant les soins de base (bain, toilette, habillement, pansements, alimentation) aussi bien que sommeil, distractions, kducation/occupation, thtrapie de conseil et d’insertion psychosociale, soins midicaw, transports et problemes a domicile. Les donnies
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rejoignent celles d’une etude suedoise anterieure, suggerant que les besoins en soins fondamentaux des IMC tres atteints, peuvent Otre prkvus independamment du type de soins fournis. ZUSAMMENFASSUNG Pfegeaufwand bei Kindern und Jugendlichen mil sch werer Cerebralparese Bei 44 Kindern und Jugendlichen (mittleres Alter 18.9 Jahre) mit schwerer spastischer Tetraplegie wurde der Pflegeaufwand untersucht. Alle waren in einer Schule/Krankenhaus untergebracht und benutzten einen Rollstuhl. Die meisten hatten eine leichte bis mittelgradige geistige Retardierung. Sie wurden uber einen Zeitraum von sieben Tagen rund um die Uhr iiberwacht und bei 10 Hauptaktivitaten zeitlich iiberpruft, wie allgemeine Pflege (Baden, Toilette, Anziehen, Pflege, Fiittern), sowie Schlaf, Freizeit, Schule/Beruf, Beratung/Physiotherapie, medizinische/pflegerische Betreuung, Transport und zu Hause. Die Berunde decken sich mit denen einer friiheren schwedischen Studie, die besagt, dal3 die allgemeinen Pflegebedurfnisse von Patienten mit schwerer Cerebralparese abschatzbar sind, wobei die Art der Pflege keine Rolle spielt. RESUMEN Cuidado intensivo para niitos y adultos jovenes con paralisis cerebral grave Se analizo el cuidado intensivo en 44 niilos y adultos jovenes (edad promedio de 18.9 afios) con cuadriplejia-espastica grave. Todos estaban en una escuela residencial/hospital y usaban silla de ruedas. La mayoria estaba en la zona borderline-moderada del retraso mental. Fueron monitorizados las 24 horas del dia durante un period0 de siete dias y fueron controlados en 10 actividades rqayores incluyendo cuidados basicos (batlo, lavabo, vestirse, arreglarse y comer) asi como suetlo, tiempo libre, educacion, vocacion, consejo, terapia psicosocial, cuidados medicos/enfermeria, transporte y vida en casa. Los hallazgos fueron 10s mismos que 10s de un estudio sueco anterior, lo cual sugiere que las necesidades basicas de 10s individuos con paralisis cerebral pueden ser predecibles, independientemente del tipo de cuidados que se proporcionen. References Cadman, D., Rosenbaum, P., Boyle, M., Offord, D. R. (1991) ‘Children with chronic illness: familv and paren; demographic , characteristics and psychosocial adjustment. Pediatrics, 87, 884-889. Edebol-Tysk, K. (1989) ‘Evaluation of care-load for individuals with spastic tetraplegia.’ Developmental Medicine and Child Neurology, 31,737-745.
Hirst, J. (1991) ‘Dissolution and reconstitution of families with a disabled young person.’ Developmental Medicine and Child Neurology, 33, 1073-1079. Newacheck, P. W., Taylor, W. R. (1992)
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‘Childhood chronic illness: prevalence, severity, and impact.’ American Journal of Public Healfh, 82, 3-37 1. Orem, D. E. (1991) Nursing: Conceprs of Praclice. St. Louis: MosbyIYear Book. Raven, M. (1989) ‘Application of Orem’s self-care model to nursing practice in developmental disability.’ Ausiralian Journal of Advanced Nursing, 6, 16-23. Rosenbaum, P. L., King, S. M., Cadman, D. T. (1992) ‘Measuring processes of caregiving to physically disabled children and their families. I: Ideiiiifying relevant components of care.’ DevdJpmental Medicine and Child Neurology. 34, 103-114.
