TECHNICAL AIDS FOR DAILY ACTIVITIES: A REGIONAL SURVEY OF 2 0 4 DISABLED CHILDREN I

Raija Korpela Ritva-Liisa Seppanen Matti Koivikko

The home-care of even severely disabled children is strongly encouraged today; life at home rather than in an institution may enhance the psychological development of children and is usually preferred by the family (Cohen et al. 1986, MacFaul 1986). Special services are needed to support and facilitate the home-care of disabled children (McAndrew 1976, Knott 1979, Gallagher et al. 1983, Bailey et al. 1986, Robinson 1987, Perrin and MacLean 1988, Brewer et al. 1989), and parents must have information about those available (Ayer 1984, Holt 1985, Robinson 1987, Bailey and Simeonson 1988). The care of disabled children at home increases household work considerably, the brunt of this being carried by mothers (Dupont 1980, Lagergren 1981, Breslau 1983, Airaksinen et al. 1985, Edebol-Tysk 1989). Some severely disabled children need 24-hour care, and it is unrealistic to suppose that such children can be cared for at home (Hagberg el al. 1988). There are many studies on the need for and effects of mobility aids (Barton et al. 1980; Wisbeach and Holt 1980; Breed and Ibler 1982; Butler 1984, 1986; Paulsson and Christoffersen 1984; Lord et al. 1987), seating devices (Medhat and Redford 1985, Nwaobi and Smith 1986, Fisher and Seeger 1987, Hulme et al. 1987a, Mulcahy et al. 1988), orthoses and

prostheses (Kaplan et al. 1966, Fisher and McLellan 1989) and the use of high technology (Behrman and Lahm 1984, Douglas et al. 1988). The role of technical aids for daily activities has received scant attention in these assessments. In an Australian follow-up survey (Caudrey and Seeger 1983), most requests for new aids were for activities of daily life, the various aspects of which can influence each other; for example eating and drinking can be improved by adaptive seating that corrects sitting posture and head alignment (Trefler et al. 1983, Hulme et al. 19876). In studies of bathing and toileting facilities, bathing was made possible for adult patients with the help of aids, but there was little instruction in their use and few follow-up visits (Chamberlain et al. 1978, 1981). Traditionally, the difficult assessment of the special needs of disabled children has been made by psychologists, family therapists and social workers (Anderson et al. 1986). Many studies suggest that doctors should widen their knowledge of the needs of disabled children (Cadman et al. 1984, Brewer et al. 1989, Narkewicz 1989). The financial constraints on the provision of services increasingly have to be considered (Melvin 1988, Banta and Thacker 1990, Matthews et al. 1990). The effect of aids on the daily life of

985

TABLE I

Main neurological diagnoses Diagnosis

Cerebral palsy Cerebral malformation Myelomeningocele Syndromes Chromosomal anomalies Neuromuscular disease Encephalitis (sequelae) Metabolic disease Seizures Mental retardation Various symptoms Minimal brain dysfunction Developmental disorders

Did nof use aids (N = 543)

Used aids Tofai (N = 209) (% using aids) N=752 (27-8)

16 35

128

19

4

12

48 87 4

II 16

12

6

3 160 65 54 33 22

5

7

5

144 (88.9) 54 (35-2) 16 (75.0) 59 (18.6) 103 (15.5) 1 1 (63.9) 18 (33.3) 8 (62.5) 160 (0) 65 (0) 59 (8.4) 33 (0) 22 (0)

cu disabled children is complicated and extensive. We studied the use and role of aids in the children’s daily activities in one region of Finland.

986

Subjects The study was performed in the region of Tampere University Hospital, which serves about 400,000 inhabitants, 80,000 of whom are under 16 years of age. Practically all neurologically disabled children living in this region are under the care of either the Department of Paediatric Neurology of Tampere University Hospital or the Pirkanmaa Regional Centre for the mentally retarded. In 1989, 752 children with diagnosed neurological disorders were under the continuous care of these two organizations: 463 by the Department of Paediatric Neurology and 289 by the Pirkanmaa Centre. The main diagnoses of the children are presented in Table I. The numbers with seizures, developmental disorders or minimal brain dysfunction did not include all such cases in the region. A child with both cerebral palsy and mental retardation was included in the cerebral palsy group; thus the group with ‘mental retardation’ consisted of children with non-specific and uncomplicated retardation. The group with ‘various symptoms’ consisted mainly of children with headache or migraine and did not include all such cases in the

region. Children wit.. developmental disorders had language delay or nonspecific mild psychomotor retardation. The study group comprised those disabled children who lived at home and had technical aids provided by either of these two organizations. There were 209 such children. Five families did not complete the study questionnaire, so these children were excluded from the study. The excluded children did not differ from the other 204: three had moderate and two had severe cerebral palsy, representing the most common diagnostic group of the study. The ages of the 92 boys and 112 girls ranged from nine months to 16 years 9 months (mean 7 years 8 months). 131 children (64.2 per cent) were under the care of the Department of Paediatric Neurology and 73 (35.8 per cent) were being followed by the outpatient clinic of the Pirkanmaa Regional Centre. The most common diagnosis in the study group was cerebral palsy (CP) (see Table I). 89 per cent of the children with CP and over half the children with myelomeningocele, neuromuscular or metabolic disease used technical aids because of motor disability. Five children with other disorders used technical aids: one child with visual problems after cerebral haemorrhage, two with various symptoms after a tumour operation and two with motor symptoms after a traffic accident.

TABLE 11

00

m

Need for help with daily activities -

‘CI

=

Age

(N

Independent Need help

Totally dependent

00

m

Total

a‘ m mm

Q‘ 6- 8.9 9-12.9 13-16.9 Total

25 41 2s 113

3 5 3 45

5 6 2 46

33 52 30 204

2
Ilh Total (N= 44) (N= 24) (N= 23) (N= 34) (N= 35) (N= 44) (N= 204) 1

5

6

11

4

4

5

12

8 14

4 10

5 7

9 9 7

18

5

I

3

6 2

>2h

Total

12.9 3- 5.9 6- 8.9 9-12.9 13-16.9

4

14 18 3 8 1

37 52 33 52 30

TABLE IV

Hours children can be left alone Age

(vrsl 52.9 3- 5.9 6- 8.9 9-12.9 13-16.9

988

Not at all

< Mh

0-2h

19 14 9 3

13 24 11

5 13 8 16

4

4

4

(N= 49) (N= 59) IN = 46) (N= 50) (N= 204)

I

I 9 22 18

31 52 33 52 30

questions about the role of and problems with each aid for daily activities. The parents estimated to what extent the use of each aid for eating, dressing, toileting and bathing had promoted their child's

interesting comments. The data were made complete by telephone surveys and information from the children's files.

self-care and lightened the care-load in

Daily activities in general

daily life. This estimate was graded according to whether: (1) the aid promoted care (i.e. it was essential, increased the child's independence and made care easier for the parents); (2) lightened care (i.e. it was essential and made care easier); or (3) it had only minimal or no effects on care. The children were grouped according to their need for and use of technical aids for eating, dressing, toileting and bathing, respectively. Children who needed and used technical aids for these functions formed the first group; the second comprised children who had been provided with aids that were needed, but not used for various reasons; the third consisted of children who needed aids, but they had not been provided; and the fourth group consisted of children who either did not need aids or who had aids which were no longer needed, but had not been returned. Most of the questionnaires were completed and also included useful and

The 204 children all needed considerable help with daily activities (Table 11). Of those over three years of age, 113 (55.4 per cent) could feed themselves, 27 (13.2 per cent) could dress, 70 (34.3 per cent) could manage toileting and 29 (14.2 per cent) could bathe independently. 1 I3 children (55.4 per cent) needed care for five or more hours daily (Table 111). Young children required daily care for longer periods than older children. The parents were asked for how many hours their children could be alone continuously without supervision or other help (Table IV). The mentally disabled children needed more supervision than those with normal intelligence.

Results

Technical aids for daily activities EATING

Eight children (3.9 per cent of the whole study group) had between them 12 technical aids for eating (four special spoons, four attachment grips, two special plates and two probes) (Table V).

TABLE V

Use of technical aids for eating Variables affecring use of aids

Aids used' Promoted

care (N=2)

I

Eating Independent Need help Totallv deoendent Motor status Normal Mild difficulties Amb. with aids Own body-support No body-support Intelligence Normal Mild MR Moderate MR Severe MR Very severe MR

Aids not used**

Minimal benefit

(N=4)

2

Needed, but not used fN=l)

2 2

2

1

Needed, Not bur not needed** provided (N= 187) fN=101 8

113 32

I13 45

2

A?

A6

1

3 19 22 49 34

3 19 23 59 40

69 14 32 45 21

12 21

36 41 26 50 28

31 52 33 52 30

I 3

I

6 3

2

I

4

2

I

4 2

1

1

I I

3 4 I

I

2

Total IN = 204)

1

36 48 21

*See Method for explanation of terms. **Including one child who no longer needed provided aid. TABLE VI Use of technical aids for dressing

Variables affecling use of aids

Dressing Independent Need help Totally dependent Motor status Normal Mild difficulties Amb. with aids Own body-support No body-support Intelligence Normal Mild MR Moderate MR Severe MR Very severe MR Age (vrs) 52.9 2.9- 5.9 6.0- 8.9 8 '9- 12.9 13-16.9

Aids used Promoted care (N=6)

Lightened care-load (N=19)

4

2 17

2

Aids not used Minimal benefit (N=8)

8

Needed, Needed, Not but not but not needed* used provided (N = 129) ( N = 4 ) (N=38)

4

3 35

1

3 2 1

3 3

2 10 6

21 66 36 3 78

1

3 2

Total (N = 204)

I

4 3

4 3 3 8 I

2

I 12 3 3

3 1

3 16 19 2 1

3 2

I 2

1

1

3 2 2

I 2

~. I5 14 4

1

I

5

*Including one child who no longer needed provided aid.

6 15 14

21 75

102

23 9

3 19 23 59 40

61 15 22 21 10

12 21 36 48 21

11

37

22 21 39 30

52 33 52 30

16

5

989

i

TABLE VlI

Use of technical aids for toileting Variables affecting use of aids

Toileting Independent Need help Totally dependent

Aids used Promoted care (N=14)

Lighten care-load (N=16)

9 5

2

Aids not used Minimal benefit (N=7)

Needed, but not used (N=9)

Total (N = 204)

Needed, Not but not needed' provided (N = 120) (N=38) 70

3 6

1

6

14

16 22

5

70 76 58 3 79 23 59 40

45

L

2

v1

9 Q

Motor status Normal Mild difficulties Amb. with aids Own body-support No body-support Intelligence Normal Mild MR Moderate MR Severe MR Very severe MR

6.0- 8.9 8.9-12.9 13-16.9

4

8 2

2 1 7

2 4

4 5

5 17 16

3 79 11 21 6

1

61

2 I 2 3

2

1

6 12 18

21 20 4

72 21 36 48 27

1

14

5 3

13

20 17 20 36 27

31 52 33 52 30

7- 1 '

7 4

1

3

2 11 2

3 3

2 10 2 2

5

2 4 6 2

2

L

14

4 6 1

L

'Including two children who no longer needed provided aids.

Eight of these aids were used daily, one special spoon was no longer needed and another one was of no benefit. Thirty-eight children (1 8.6 per cent) had 44 technical aids for dressing, mostly special seating to provide a good dressing position (Table VI). Even with these aids, 31 children were totally dependent for dressing and the other seven needed help. Six children had two aids for dressing: one at home and one in day-care. One 12-year-old child with mild motor difficulties no longer needed his aid, but needed other assistance with dressing. Four families with a severely disabled child did not use the special seating provided because it was of no benefit.

seats and 25 separate raised toilet seats) (Table VII). 37 children had one, nine children had two, one child had three and one child had four different seats for toileting. All had at least moderate motor disability and 39 also had mental retardation. 31 children were totally dependent for toileting and the rest needed help, even with the aids. Thirty-seven children used aids for toileting and 11 did not. Two of the 1 1 children not using aids-eight- and nineyear-old boys-no longer needed the provided toilet seats, but needed other help with toileting. Nine children did not use toilet seats, although they were needed: one was not accepted by the child, two were too small, one was of no benefit and five had other faults.

TOlLETlNG

BATHING

Forty-eight children (23-5per cent) had 62 technical aids for toileting (37 toilet

Fifty-four children (26.5 per cent) had 62 technical aids for bathing (38 bath/

DRESSING

990

TABLE VlIl Use of technical aids for bathing

Variables affecting use of aids

Bathing Independent Need help Totally dependent Motor status Normal Mild difficulties Amb. with aids Own body-support No body-support Inlelligence Normal Mild MR Moderate MR Severe MR Very severe MR Age (vrsl I2 . 9 2.9- 5.9 6.0- 8 . 9 8.9-12.9 13-16.9

Aids not used

Aids used

Total

(N = 204) Promoted care (N=6)

Lighten care-load (N=28)

Minimal benefit (N=I2)

5

6

4

1

22

8

Needed, but not used (N=8)

8

6 35

11 2

4

hl --

77 .-

1

5 I

2 4 5

2

1

9 8

6 3

4

2 10 15 10

7

5 3

2

11

5

14 5

I

7 4

2 2

I2 2

1

7

1

3

4

I

shower-chairs, two non-skid matdtapes and 22 bathtub-liners) (Table VIII). 48 children used one, five used two and one used four devices for bathing. Only three of these 54 children were ambulatory with aids. 33 children (61.1 per cent) had severe mental retardation and 39 were totally dependent for bathing. Eight devices (six bath-chairs and two bathtub-liners) were not used, although they were needed: six were difficult to use, one was too small and one was not accepted by the child. AN technical aids for daily activities A total of 89 children (43.6 per cent) had technical aids which were needed for daily activities. 50 children had one type of device, most often for bathing (21) or toileting (18). 24 children had two devices, most often for toileting and bathing (10) or for dressing and bathing (five). 14 children had three devices, most often for dressing, toileting and bathing (nine). One

3

3 19 23 59 40

13

5

29 77 98

77

1

3

29 56 24

2 4 19 16

4 I

14

1 9 2

Needed, NOI but not needed provided (N = 109) (N=41)

16

21 36

13 18 15 2

48

12 16 20 36

37 52 33

25

30

21

52

child had four devices for daily activities. Role of technical aids in daily activities EATING

The number of aids for eating was low: only eight children had 12 items of adaptive equipment, 10 of which were in use. Two children of normal intelligence with moderate cerebral palsy could feed themselves better with special spoons, and these promoted their care (Table V). Four pieces of equipment were used without obvious benefit. Ten children with cerebral palsy were assessed to need technical aids for eating (see Table V). One had severe mental retardation and one was ambulatory. Eight children could partly feed themselves. In all, 8.3 per cent (17/204) of the children who used various technical aids and 17.2 per cent of children who were not ambulatory needed technical aids for eating.

991

DRESSING

L

0

L

UI

E Q m

.-C

-c

Six of the 33 children who had aids for dressing were helped by special seating (see Table VI), although they still needed assistance. All of these children were over six years of age, three were of normal intelligence and five had severe motor disability. The dressing of 19 other children was easier for the parents when special seats were used (see Table VI). These lightened the care-load, although most children were dependent for dressing. Over half of these children were under six years of age 'and severely disabled. Eight families used their special seats for dressing, even though the aid had only minimal benefits. The use of special seating was difficult for 12 (36.4 per cent) of the 33 children. Four of these families felt their seating to be helpful, regardless of problems with its use. These difficulties had no significant correlation with children's age, mental or motor disability. Thirty-eight children lacked special seating for dressing, even though they would have benefited from it (see Table VI). 35 of these children had severe motor disability and were totally dependent for dressing. 29 children were under six years of age and 27 needed help daily for more than six hours. Children with severe motor but mild mental disability benefited most from the seating. In all, 36-8 per cent (75/204) of the children who used various technical aids, and 67.7 per cent of those who were not ambulatory, needed special sp-ting for dressing. TOlLETlNG

992

Fourteen (37.8 per cent) of the 37 children with aids for toileting found toileting easier with the help of an adapted toilet seat (see Table VII). The use of aids promoted their care, although they still needed assistance. Two of these 14 children were under six years of age and 10 were not ambulatory. T!iree children needed daily help for less than two hours, and six children for less than and five for more than six hours. Children over six years of age with severe motor but mild mental disability could manage toileting more independently with aids,

though they still needed help. The toileting of a further 16 children was easier for parents with the help of aids (see Table VII). 12 of these children were under six years of age, one child was of normal intelligence and most had severe motor disability. Young, severely disabled children benefited most from the use of aids for toileting, even though nine of the 37 families had difficulties with these. Two families felt their toilet seat to be beneficial, despite problems with its use. There was an additional need for 47 toilet seats: nine for children with unsuitable seats and 38 for children lacking them (see Table VII). 28 of these children (59.6 per cent) were totally dependent for toileting and the others needed help. Most were not ambulatory and 33 were under six years of age. 23 children (48.9 per cent) needed daily help for more than six hours. In all, 41.2 per cent (84/204) of the children who used technical aids and 72.7 per cent of those who were not ambulatory needed special toilet seats. BATHING

Six of the 46 children with bathing aids could manage bathing better with the help of a shower-seat (see Table VIII). The use of aids promoted their care, although help was still needed. Two children needed daily help for less than two hours, and two for less than and two for more than six hours. Children over six years of age with severe motor disability benefitTd most from the use of a bathlshower-seat, but still needed assistance. The bathing of 28 children was easier for the parents when using proper aids. Most of the children were not ambulatory, 19 were under six years of age and 17 had at least severe mental retardation. 20 children were using bathlshower-chairs, two used bath-chairs and non-skid mats and six used bathtub-liners. In 20 families the aids were used for bathing, even though they had only minimal benefits. Parents of 25 children had some problems with aids (seven with bathtub-liners and 18 with bath/showerchairs), especially when the child was young or had severe mental and motor

I

disability. However, 13 of these parents felt the aids to be helpful, despite these difficulties. Forty-nine children lacked proper technical aids for bathing: mainly bathlshower-seats (see Table VIII). Eight of these children had an unsuitable aid for bathing and the rest had no aid at all. 32 of these children had at least severe mental retardation and 43 were not ambulatory. Young, severely disabled children particularly lacked technical aids for bathing. In all, 46.6 per cent (951204) of those using technical aids and 86.9 per cent of those who were not ambulatory needed technical aids for bathing. The technical aids provided for eating, dressing, toileting and bathing could promote the children’s independence and lighten the parents’ care-load; 65 per cent of families benefited from the aids provided. When the children with unsatisfactory and unused aids were excluded, 77 per cent of the families benefited from the use of aids for daily activities. Discussion Current opinion is that disabled children should have the opportunity to live at home, and the organizational challenge is to provide the care that makes this possible. Disabled children can mean continuous work for parents, with too few opportunities for relief (Dupont 1980, Lagergren 1981, Breslau 1983, Airaksinen et al. 1985, Edebol-Tysk 1989). Proper technical aids are one of the most important ways to make home-care easier. This survey was carried out in an area in which rehabilitation services have already received considerable attention. Disabled children in this area are supplied with technical aids without cost to the family. All the children in this survey lived at home with their parents and visited the hospital or outpatient clinic at least once a year. The care burden was known, but the number of problems encountered with technical aids for daily activities was still surprising. The assessment of rehabilitation services has many problems and there are no

exact methods available for measuring their effectiveness (Anderson et al. 1986, Barer and Nouri 1989, Matthews et al. 1990). Most of the scales for the assessment of independence in daily life are for adult patients and do not assess the effectiveness of technical aids. In this survey, their effectiveness was assessed on the basis of parents’ opinion and the everyday situation of the child. Formal assessments by therapists show a child and a parent how to use a device under test conditions, but its real effectiveness, faults and difficulties in use will be noticed only at home by parents (Chamberlain et al. 1978, 1981). The severity of motor disability was the most important factor affecting the need for and use of technical aids for daily activities; children with severe motor but mild mental disability benefited most. However, the care-load of severely involved children with multiple disabilities could also be lightened with proper aids. Children with central nervous system dysfunction often have abnormal oralmotor patterns, and evaluation ‘of feeding, with proper instructions, should be a part of the rehabilitation assessment. When the child has adequate cognitive and motor capacity to be able to learn to feed himself, the need for adaptive feeding equipment (special spoons, mugs and plates) should be evaluated, and proper aids should be prescribed. In the present study, the low number of technical aids for eating probably reflects the parents’ reluctance to teach the children to feed; many parents have limited time, and find it quicker to feed the child themselves. The dressing of disabled children is difficult because of motor and mental disabilities, and these problems increase with the child’s age and weight. Children are often dressed in bed; positioning the child with hips and knees flexed and arms forward facilitates this process. With a very young child, this position is easily adopted when sitting on the parent’s lap, but as the child grows, the use of special seating makes dressing easier (Fig. 1). This allows the parent to control the child’s balance from behind and to maintain good posture. The child can also

993

P66

A bathtub-liner with a sloped backsupport is recommended for bathing a young child. As the child grows, a normal-sized tub can be used, with a special bath-seat with adequate support (Fig. 3). However, a bath/shower-seat without a tub may be more practical for a school-aged child. Our results showed that proper I bath/shower-seats can promote children’s independence and lighten their care-load. However, as with toilet seats, there were many problems with their use, Some children were severely disabled and the selection of appropriate aids had been difficult; but even though their fitting was not optimal, parents persevered with them longer than with aids for toileting because of the lack of alternatives. Most of the children using technical aids for daily activities were severely disabled, and every effort should be made to lighten the parents’ burden and promote the children’s independence. The structured interview unexpectedly revealed many problems and a large additional need for technical aids for daily activities, especially for dressing, bathing and toileting. The unused aids were too small, gave no benefit or were not appropriate for the children’s and families’ needs. The probable reason for this is that while certain needs-for orthoses, shoes, prams or wheelchairs, for example-can be judged in hospital or at the outpatient clinic, home visits are also essential. Our results suggested that parents of disabled children were ready to accept technical aids, but they need more information on their possibilities, benefits and therapeutic aspects, especially for daily activities. We must pay more attention to evaluating the needs of children and their families-by home visits if appropriate. Children and parents need to participate in the selection of aids. They also need instructions for their use, and time to practise with them, not only in hospital but also at home, in day-care institution or at school. Continuous evaluation of the use of the aids should be made at least once a year during follow-up visits. Follow-up visits by a rehabilitation consultant are also important, because the need for aids will change continually with

2

. h

E

2z 8



;&A 3

Fig. 3. Bath-seat with support.

+

the children’s age, growth and possible progression of disabilities. The average life-span of the devices is two years (Kohn et al. 1983). Unused technical aids should be retrieved, because many can be adjusted for another child to save costs. Increased awareness of the benefits of rehabilitation technology will lead to an increased demand for services. Hightechnology rehabilitation is now very popular, but we should not forget the basic everyday needs of disabled children and their families. The role of the doctor is to guide the rehabilitation team and service resources available to provide aids for daily activities. Accepied for publicarion i i st April 1992. Auihors’ Appoiniments ‘Raija Korpela, M.D., Child Neurologist, Department of Paediatric Neurology; Ritva-Liisa Seppanen, P. T., Physiotherapist, Department of Physiotherapy; Matti Koivikko, M. D., Child Neurologist, Department of Paediatric Neurology: Tampere University Hospital, Box 2000, SF-33521 Tampere, Finland. *Correspondence to first author.

995

i

-u- -,-

i

,o Ql

3

s :s z

.* ..-> v) W

e

2

-.-* &

L.

8 v)

s-.-8 E

SUMMARY Home-care of even severelv disabled children is strongly favoured today. However, the role of technical aids for daily acthities has not been emphaiied in the assessment of the needs of families with disabled children. This study evaluated the extent of help needed for daily living among 204 disabled children and the uses and role of and need for technical aids for eating, dressing, toileting and bathing. The children needed much help. Severely disabled children and their parents benefited most from the use of aids. The structured interview unexpectedly revealed many problems, including a considerable need for extra aids for dressing, bathing and toileting. The parents were ready to accept technical aids, but needed more information on their possib es. benefits and therapeutic aspects. The authors conclude that the need for technical aids for daily activities is not readily recognised during outpatient or hospital visits. RESUME Aides techniques pour les actrvitb journalr6res: une etude regionale chez 204 enfants handicapis La prise en charge a domicile d’enfants mCme severement handicapes est fortement favorisee aujourd’hui. Cependant, le rate des aides techniques pour les activites journalieres n’a pas ete souligne dans I’evaluation des besoins des familles d’enfants handicapes. Cette etude tente d’evaluer I’itendue des aides demandees par la vie quotidienne chez 204 enfants handicapes et I’usage, le rdle et le besoin d’aides techniques pour I’alimentation, I’habillage, la toilette et le bain. Les enfants exigent beaucoup d’aide. Ce sont les enfants severement handicapes et leurs parents qui beneficient le plus de ces aides. Les entrevues structurees ont revele de nombreux problemes inattendus, incluant une besoin considerable d’aides supplementaires pour I’habillage, le bain et la toilette. Les parents itaient disposes a accepter ces aides techniques mais avaient besoin de plus d’information sur leurs possibilites, les aspects de benefice et de traitement. Les auteurs concluent que les besoins d’aides techniques pour les activites journalieres ne son1 pas perGus rapidement durant les consultations ou les hospitalisations. ZUSAMMENFASSUNG Technische Hiljen f u r die Aktivitaten itn taglichen Leben: eine regionale Ubersicht iiber 204 behinderte Kinder Die hausliche Pflege, selbst bei schwer behinderten Kindern, wird heutzutage sehr favorisiert. Jedoch ist der Stellenwert von technischen Hilfen fur die taglichen Aktivitaten bei der Beurteilung der familiaren Bediirfnisse nicht genugend berucksightigt worden. In dieser Studie wurde bei 204 behinderten Kindern untersucht, wieviel Hilfe im taglichen Leben erforderlich ist, und wie Anwendung, Stellenwert und Bedarf von technischen Hilfen beim Essen, Anziehen, bei der Toilette und beim Baden zu beurteilen sind. Schwer behinderte Kinder und ihre Eltern profitierten am meisten vom Einsatz der Hilfen. Das strukturierte Interview offenbarte unerwartet viele Probleme, wie z.B. einen deutlichen Bedarf an zusatzlichen Hilfen beim Anziehen, Baden und bei der Toilette. Die Eltern waren bereit, technische Hilfen zu benutzen, sie brauchten aber mehr Informationen iiber die Moglichkeiten, Vorteile und therapeutischen Aspekte. Die Autoren sind der Meinung, da0 der Bedarf an technischen Hilfen fur die taglichen Aktivitaten weder bei den ambulanten noch bei den stationaren Visiten ausreichend berucksichtigt worden ist. RESUMEN Ayudas ticnicas para actividades diarias: un estudio regional de 204 niilos minusvalidos Hoy dia se favorece mucho el que incluso niaos gravemente incapacitados Sean cuidados en casa. Sin embargo, no se ha dado la suficiente importancia a1 papel de las ayudas tecnicas en las tareas diarias en la evaluacion de las necesidades de las familias con nirlos incapacitados. El presente estudio evaluo el grado de ayuda necesitada para la vida diaria en 204 niaos incapacitados y el USO, papel y necesidad de ayudas tecnicas para comer, vestirse, ir a1 lavabo y lavarase; 10s niflos necesitan una gran ayuda. Los niflos con gran invalidez y sus padres se beneficiaban mucho con el us0 de ayudas. La entrevista estructurada revel6 problemas insospechados, incluyendo una considerable necesidad de ayudas extra para vestirse, baflarse e ir a1 lavabo. Los padres estaban dispuestos a aceptar ayudas tecnicas pero necesitaban mas informacion sobre sus posibilidades, beneficios y aspectos terapeuticos. Los autores concluyen que la necesidad de ayudas tecnicas para las actividades diarias no son conocidas en las visitas hospitalarias o de dispensario.

996

References Airaksinen, E., Matilainen, R., Launiala, K. (1985) ‘Aiding and supervising daily activities of mentally retarded children.’ In Kaariainen, R., Piepponen, P., Vaskilampi, T. (Eds.) A MultiDisciplinary Case-control Study of Mental Retardalion in Children of Four Birth Cohorts. Kuopio: University of Kuopio. Anderson, J . P., Bush, J. W., Berry, C. C. (1986) ‘Classifying function for health outcome and quality-of-life evaluation. Self versus interviewer modes.’ Medical Care, 24, 454-470.

Ayer, S. (1984) ‘Community care: failure of professionals to meet family needs.’ Child: Care, Health and Development, 10, 127-140. Bailey, D. B., Simeonson, R. J . (1988) ‘Assessing needs of families with disabled infants.’ Journal of Special Education, 22, 117-127. - - Huntington, G. S . , Winton, P. J., Comfort, M., Isbell, B., O’Donnel, K., Helm, J. M. (1986) ‘Family-focused intervention: a functional model for planning, implementing, and evaluating in,dividualized family services in early intervention. Journal of the Divison for Early

Childhood, 10, 156-171. Banta, H. D., Thacker, S. B. (1990) ‘The case for reassessment of health care technology. Once is not enough.’ Journal of the American Medical Association, 264, 235-240. Barer, D., Nouri, F. (1989) ‘Symposium on measurement. Measurement of activities of daily living.’ Clinical Rehabilitation, 3, 179-187. Barton, E. M., Hollobon, B., Woods, G. E. (1980) ‘Appliances used to help the handicapped under three to follow the normal developmental sequence.’ Child: Care, Health and Development, 6, 209-232. Behrman. M. M., Lahm, L. (1984) ‘Babies and robots: technology to assist learning of young multiply disabled children.’ Rehabilitation Literature, 45, 194-201. Breed, A. L., Ibler, I. (1982) ‘The motorized wheelchair: new freedom, new responsibility and new problems.’ Developmental Medicine and Child Neurology, 24, 366-371. Breslau, N. (1983) ‘Care of disabled children and women’s time use.’ Medical Care, 21, 620-629. Brewer, E. J., McPherson, M., Magrab, P. R., Hutchins, V. L. (1989) ‘Family-centered, community-based, coordinated care for children with special health care needs.’ Pediatrics, 83; 1055-1060.

Butler, C. (1984) ‘Motorized wheelchair driving by disabled children.’ Archives of Physical Medicine and Rehabilitation, 65, 95-97. - (1986) ‘Effects of powered mobility on selfinitiated behaviors of very young children with locomotor disability.’ Developmental Medicine and Child Neurology, 28, 325-332. Cadman, D., Goldsmith, C., Bashim, P. (1984) ‘Values, preferences, and decisions in the care of children with developmental disabilities.’ Journal of Developmental and Behavioral Pediatrics, 5, 60-64.

-

Caudrey, D. J., Seeger, B. R. (1983) ‘Rehabilitation engineering service evaluation: a follow-up survey of device effectiveness and patient acceptance.’ Rehabilitation Literature, 44, 80-85. Chamberlain, M. A., Thornley, G., Wright, V. (1978) ‘Evaluation of aids and equipment for bath and toilet.’ Rheurnatology and Rehabilitation, 17, 187- 194.

- -

Stowe, J., Wright, V. (1981) ‘Evaluation of aids and equipment for the bath. II: A possible

solution to the problem.’ Rheumatology and Rehabilitation, ~20,38-43. Cohen, H. J., BieN, R., Crain, L. S., Haber, J., Healy, A., Katcher, A., Oppenheimer, S. G., Perrin, J. Committee on Children with Disabilities (1986) ‘Transition of severely disabled children from hospital or chronic care facilities to the community.’ Pediatrics, 78, 531-534. Douglas, J., Reeson, B., Ryan, M. (1988) ‘Computer microtechnology for a severely disabled preschool child.’ Child: Care, Health and Development, 14, 93-104. Dupont, A. (1980) ‘A study concerning the timerelated and other burdens when severely handicapped children are reared at home.’ Acta Psychiatrica Scandinavica. 62, Suppl. 285, 249-257.

Edebol-Tysk, K. (1989) Spastic Tetraplegic Cerebral Palsy. Epidemiology and Care Load. Thesis, University of Gothenburg. Fisher, L. R., McLellan, D. L. (1989) ‘Questionnaire assessment of patient satisfaction with lower limb orthoses from a district hospital.’ Prosthetics and Orthotics International, 13, 29-35. Fisher, W. E., Seeger, B. R. (1987) ‘A comparative evaluation of special seating for severely disabled

children.’ Australasian Physical and Engineering Sciences in Medicine, 10, 128-143. Gallagher, J. J., Beckman, P., Cross, A. H. (1983) ‘Families of handicapped children: sources of stress and its amelioration.! Exceptional Children, 50, 10-19. Hagberg, B., Edebol-Tysk, K., Edstrom, B. (1988) ‘The basic care needs of profoundly mentally retarded children with multiole handicaos.’ Developmental Medicine and dhild Neurol&y, 30, 287-293. Holt, K. S. (1985) ‘A developmental approach to Dhvsical disabilitv in childhood.’ 1nterna:icinal Rdhabilitation Midicine, 7, 18-26. Hulme, J. B., Gallacher, K., Walsh, J., Neisen. S., Waldron, D. (19870) ‘Behavioral and postural chanees observed with use of adaotive seatine bv cliencs with multiple handicaps.’ Phy;icil Therapy, 67, 1060- 1067. - Shaver, J., Acher, S., Mullette, L., Eggert, C. (1987~)‘Effects of adaotive seatine devices on the eating’and drinking bf children- with multiple handicaps.’ American Journal of Occupational Therapy, 41, 81-89. Kaplan, L. I., Grynbaum, B. B., Rusk, H. A., Anastasia, T., Gassler, S. (1966) ‘A reappraisal of braces and other mechanical aids in patients with spinal cord dysfunction: results of a follow-up study.’ Archives of Physical Medicine. and Rehabilitation, 47, 393-405. Knott, G. P. (1979) ‘Attitudes and needs of parents of cerebral palsied children.’ Rehabilitation Literature, 40, 190-195, 206. Kohn, J., Enders, S., Preston, J., Motloch, W. (1983) ‘Provision of assistive equipment for handicapped persons.’ Archives of Physical I Medicine and Rehabilitation, 64, 378-38 I. Lagergren, J. (1981) ‘Children with motor j. handicaps. Epidemiological, medical and sociopaediatric aspects of motor handicapped children in a Swedish county.’ Acta Paediatrica Scandinavica, Suppl. 289, 1-71. Lord, J. P., Lieberman, J. S., Portwood, M. M., Fowler, W. M., Carson, R. (1987) ‘Functional ability and equipment use among patients with neuromuscular disease.’ Archives of Physical Medicine and Rehabilitation, 68, 348-352. McAndrew, I. (1976) ‘Children with a handicap and their families.’ Child: Care, Health and Development, 2, 213-237. MacFaul, R. (1986) ‘Medical care in severe mental handicap.’ Archives of Disease in Childhood, 61, 533-534. (Annotation.) Matthews, D. J., Meier, R. H., Bartholome, W. (1990) ‘Ethical issues encountered in pediatric rehabilitation.’ Pediatrician, 17, 108-1 14. Medhat, M. A., Redford, J. B. (1985) ‘Experience of a seating clinic.’ International Orthopaedics, 9,

d 0

279-285.

Melvin, J. L. (1988) ‘Rehabilitation in the year 2000.’ American Journal of Physical Medicine and Rehabilitation, 67, 197-201. Mulcahy, C. M., Pountney, T. E., Nelham, R. L., Green, E. M., Billington, G. D. (1988) ‘Adaptive seating for the motor handicapped-problems, a solution, assessment and prescription.’ Physiotherapy, 74, 531-536. . Narkewicz, R. M. (1989) ‘Family-centered, community-based, coordinated care for children with special needs.’ Pediatrics, 83, 1061. (Commentary.) Nwaobi. 0. M., Smith, P. D. (1986) ‘Effect of adaptive seating on pulmon&y function of children with cerebral palsy.’ Developmental Medicine and Child Neurologv, 28, 351-354. Paulsson, K., Christoffersen, M. (1984) ‘Psycho-

997

logical aspects on technical aids. How does independent mobility affect the psychosocial and intellectual development of children with physical disabilities?’ In Proceedings of the 2nd International Conference on Rehabilitation Engineering. Toronto: Rehabilitation Engineering Society of North America. pp. 282-286. Perrin, J. M., MacLean, W. E. (1988) ‘Children with chronic illness. The prevention of dysfunction.’ Pediatric Clinics of North America, 35, 1325-1337. Robinson, J. (1987) ‘Care in the community: support for informal carers of chronically ill and

L

8

998

disabled people.’ Internalional Disability Studies, 9, 78-80. Trefler, E., Nickey, J., Hobson, D. A. (1983) ‘Technology in the ,education of multiplyhandicapped children. American Journal of Occupational Therapy, 31, 381-387. von Wendt, L., Simila, S., Niskanen, P., Jarvelin, M.-R. (1990) ‘Development of bowel and bladder control in the mentally retarded.’ Developmental Medicine and Child Neurology, 32, 5 15-5 18. Wisbeach, A., Holt, K. S. (1980) ‘Children in wheelchairs. British Medical Journal, 281, 199-201.

Technical aids for daily activities: a regional survey of 204 disabled children.

Home-care of even severely disabled children is strongly favoured today. However, the role of technical aids for daily activities has not been emphasi...
979KB Sizes 0 Downloads 0 Views