A board with various fastenings is useful for analysing manipulation problems (see Fig. 6.2). In this way some simple adaptations such as rings on zips can be tried out.
Putting on and taking off clothing and shoes can be done in the assessment situation so as to analyse the difficulties.
Also handling everyday objects can be observed; for example taking coins and bank notes out of a closed purse or wallet (see Fig. 6.3).
Fig. 6.3
Handling everyday objects such as coins
Some areas of grooming such as applying cream, combing the hair or cleaning teeth can also be tried out and analysed.
As changing bandages and dressings plays a large role in the life of these clients, it is important to observe this to see whether the client is able to do his or her own bandaging. Children from about 8 or 9 years can be shown how they can help with this as long as they have an adequate hand function (see Fig. 6.4a,b).
Fig. 6.4a,b
Independent changing of bandages (Hametner)
The use of electronic devices such as mobile telephones, and MP3 or DVD players can be tried out in therapy.
So as to obtain a comprehensive picture of the abilities and difficulties in everyday life of the client, the parents of the child can be asked to fill out the following questionnaire. Later this can provide valuable details for use in intervention.
6.1.1 Parental Questionnaire Focusing on the Coping Skills of Children with EB in Everyday Life
Parental questionnaire focusing on the coping skills of children with EB in everyday life
Name of child: Date of birth: Age:
EB type: Date:
Key
☺☺ ☺K K☹ ☹☹ ✋
very well well poor not at all with help
Please mark where appropriate The line beside the Smileys gives
space for remarks or additions
SELF-CARE
Dressing and undressing
Putting on and taking off underclothes
☺☺ ☺K K☹ ☹☹ ✋
Putting on and taking off socks/stockings
☺☺ ☺K K☹ ☹☹ ✋
Trousers
☺☺ ☺K K☹ ☹☹ ✋
Pullover/T-Shirt
☺☺ ☺K K☹ ☹☹ ✋
Shirt/jacket
☺☺ ☺K K☹ ☹☹ ✋
Which types of material are tolerated best?
Cotton □ silk □ synthetic materials □
Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
Key
☺☺ ☺K K☹ ☹☹ ✋
very well well poor not at all with help
Please mark where appropriate The line beside the Smileys gives
space for remarks or additions
Putting on and taking off shoes
Outdoor shoes
☺☺ ☺K K☹ ☹☹ ✋
Does your child use:
Special shoes □ inserts □ padding □
Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
Fastenings
Buttons
☺☺ ☺K K☹ ☹☹ ✋
Shoelaces
☺☺ ☺K K☹ ☹☹ ✋
Zip
☺☺ ☺K K☹ ☹☹ ✋
Velcro
☺☺ ☺K K☹ ☹☹ ✋
Does your child use any adaptive devices or adaptations to make using fastenings easier?
––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
Eating and drinking
Cutting food
☺☺ ☺K K☹ ☹☹ ✋
Eating with a spoon or fork
☺☺ ☺K K☹ ☹☹ ✋
Does your child use:
Special cutlery □ teaspoon □
Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
Drinking out of a glass or cup
☺☺ ☺K K☹ ☹☹ ✋
Hygiene and grooming
Shower
☺☺ ☺K K☹ ☹☹ ✋
Bath
☺☺ ☺K K☹ ☹☹ ✋
Does your child use:
Bath board □ anti-slip mat □
Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
Cleaning teeth
☺☺ ☺K K☹ ☹☹ ✋
Does your child use:
Manual toothbrush □ electric toothbrush □ special toothbrush □
Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
Combing/brushing hair
☺☺ ☺K K☹ ☹☹ ✋
Applying cream
☺☺ ☺K K☹ ☹☹ ✋
Toileting (including wiping intimate parts)
☺☺ ☺K K☹ ☹☹ ✋
Sleeping
Mattress/pillow/special protection
Foam mattress □ sprung mattress □ latex mattress □
Water bed □ feather pillow □ foam pillow □
Ergonomic pillow □ support cushion(s) □ sheepskin protection □
Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
Material of the bedclothes
Silk □ cotton □
Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
Sleeping position
Back □ side □ front □
Household activities
Opening a bottle
☺☺ ☺K K☹ ☹☹ ✋
Opening a tin/can
☺☺ ☺K K☹ ☹☹ ✋
Opening packaging
☺☺ ☺K K☹ ☹☹ ✋
Preparing a snack
☺☺ ☺K K☹ ☹☹ ✋
Opening and closing a drawer
☺☺ ☺K K☹ ☹☹ ✋
Putting an electric plug into a socket and taking it out
☺☺ ☺K K☹ ☹☹ ✋
Opening and closing a water tap
☺☺ ☺K K☹ ☹☹ ✋
Shopping
Taking items off the shelf
☺☺ ☺K K☹ ☹☹ ✋
Taking out coins
☺☺ ☺K K☹ ☹☹ ✋
Carrying bags
☺☺ ☺K K☹ ☹☹ ✋
Open the door with a key
☺☺ ☺K K☹ ☹☹ ✋
LEISURE/HOBBIES
What hobbies does your child have?
Sport □ music □ drawing/painting □ handicraft □
Reading □ friends □ singing □
Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
Which kinds of sport does your child do?
Horse riding □cycling □ swimming □ ball games □
Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
What measures to you take to prevent blistering in sport?
Knee pads □ elbow pads □ gloves □ gel inserts □
Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
Is your child integrated into a group of friends?
☺☺ ☺K K☹ ☹☹ ✋
Does your child take part in any club or group activities?
Which ones? –––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
What relaxation/pain reduction method(s) does your child use?
Relaxation techniques □breathing techniques □ massage □
Music □ sound bed □
Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
Can you go on holiday with your child?
☺☺ ☺K K☹ ☹☹ ✋
Where do you go and what kind of holiday is best?
Pony club (riding) □ city trip □
Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
What conditions do you and your child need when on holiday?
Bathtub □washing machine □ pureed food □air conditioning □
Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
SCHOOL
Writing with pen/pencil
☺☺ ☺K K☹ ☹☹ ✋
Does your child use a special pen/pencil?
Writing on a PC
☺☺ ☺K K☹ ☹☹ ✋
Does your child use any special adaptations?
Special mouse □ touch screen □ special keyboard □
Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
Speed of writing
☺☺ ☺K K☹ ☹☹ ✋
Is the speed adequate for:
Copying from the board □ dictation □ tests □
Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
Turning pages of a book/magazine/newspaper
☺☺ ☺K K☹ ☹☹ ✋
Using a mobile telephone
☺☺ ☺K K☹ ☹☹ ✋
Using scissors
☺☺ ☺K K☹ ☹☹ ✋
Does your child use special scissors?
Standard scissors □ child’s scissors □
Loop/self-opening scissors □ table-top scissors □
Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
How does your child sit best in the classroom?
At the front □at the back □ single place □ wheelchair □ upholstered chair □
Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
Does your child have any special device for sitting for long periods?
Padding □ rounded seat edge on upholstered chair □
Rounded edge of table □ rounded corners □
Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
Carrying a school bag
☺☺ ☺K K☹ ☹☹ ✋
Does your child use assistive devices or techniques?
One set of books at school and one at home □ trolley □
Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
Does your child have his/her own carer in the school?
For how many hours a day and with what conditions?
What is the best place for your child to spend the breaks in?
In the classroom □ in the passage/corridor □ in the playground □
Is your child integrated into class life?
☺☺ ☺K K☹ ☹☹
Does your child participate in gymnastics?
☺☺ ☺K K☹ ☹☹ ✋
Alternatives?
Does your child participate in handicraft lessons?
☺☺ ☺K K☹ ☹☹ ✋
What activities are possible?
Is it planned for your child to stay at school beyond the minimum age?
If so with what plans?
What professional opportunities do you see for your child?
MOBILITY
Transfer
Get into bed and get up again
☺☺ ☺K K☹ ☹☹ ✋
Turnover in bed
☺☺ ☺K K☹ ☹☹ ✋
Sit down on a chair and get up
☺☺ ☺K K☹ ☹☹ ✋
Sit down at the table and get up
☺☺ ☺K K☹ ☹☹ ✋
Sit down on a sofa or armchair and get up
☺☺ ☺K K☹ ☹☹ ✋
Pick something up from the floor
☺☺ ☺K K☹ ☹☹ ✋
Get in and out of public transport
☺☺ ☺K K☹ ☹☹ ✋
Locomotion
Walk
☺☺ ☺K K☹ ☹☹ ✋
How far?
Run
☺☺ ☺K K☹ ☹☹ ✋
How far?
Go up and down stairs
☺☺ ☺K K☹ ☹☹ ✋
Cross the street within the time span of the green light
☺☺ ☺K K☹ ☹☹ ✋
Tricycle
☺☺ ☺K K☹ ☹☹ ✋
Scooter
☺☺ ☺K K☹ ☹☹ ✋
Does your child use any special adaptations?
Safety scooter □ special handlebars □
Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
Balance bike
☺☺ ☺K K☹ ☹☹ ✋
Bicycle
☺☺ ☺K K☹ ☹☹ ✋
Does your child use any special adaptations?
Balancing wheels □ special handlebars □ backpedal brake □ gel saddle □
Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
Do you use a wheelchair?
Yes □ no □
Do you use any special adaptations?
Electric wheelchair □ special cushion □
Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
How does your child go to school?
Private car □ school bus □ public transport □ bicycle □ on foot □
Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
Taking your child in the car
Do you use any special adaptations?
Child safety seat □ padded seatbelt □ air conditioning □
Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
6.2 Occupational Therapy Intervention Focusing on Everyday Life and Use of Assistive Devices
6.2.1 Self-Care
6.2.1.1 Dressing, Undressing
To be able to dress and undress is an important step towards independence in the life of a child. There is a danger, because of the difficulties of grasping and holding things, of doing these tasks for the child when this is no longer necessary.
The process can be simplified if certain rules are followed. On the one hand, the choice of clothing has to be made to prevent friction and pressure, on the other hand, there are adaptations to fastenings, etc. which make it easier to open and close garments.
When choosing garments consider the following:
No rough labels, lumpy seams or tight elastic
Wide neckline
Sportswear is usually breathable and prevents sweating that leads to increased blistering (underclothes, T-shirts, jackets).
Overalls have no tight waist; trousers with a knitted waistband cause less friction.
TIPS
✓ Prophylactic bandaging can protect against rough seams and fastenings.
✓ Underclothes can be worn inside out so that the seams are on the outside and there is less friction.
✓ To enable an easier way to pull up trousers and underpants loops can be sewn onto the sides.
✓ Use elastic instead of a cuff or buttons on the sleeves of shirts.
Fabrics well tolerated
Cotton and silk are best
Synthetic fabrics
Blended fabrics that stretch (soft and they ‘give’)
DermaSilk® from the company Alpretec, a line of therapeutic clothing conceived for people who suffer from skin diseases (http://www.dermasilk.com/)
CAUTION
✓ Too much elastane causes the garment to stick to the body!
Fastenings
Zips can have a ring or loop added (see Fig. 6.5). To provide an adequate tension on the zip when closing it, a loop can be added at the base of the zip or garment. To make dressing and undressing generally easier, sometimes it is better not to open the zip completely!
Use large buttons.
Velcro – possibly add a loop if the Velcro closes exactly (see Fig. 6.6).
Fig. 6.5
Zip opener (North Coast Medical)
Fig. 6.6
Velcro adaptation
Socks
Smooth elastic material
Socks with no elasticised top
Shoes
Buying shoes for children is a very special subject because they do not feel exactly whether the shoes fit well. The nervous system of children is not well developed enough for them to be aware of pressure points. For this reason, children sometimes put their shoes on the wrong feet and do not notice it.
If you try to feel whether the toes are too tight, the child often pulls the toe back and it is not really possible to tell whether the shoe fits or not.
It is best to measure the feet accurately with special foot-measuring devices which some shoe shops have available. The length and width of the foot can be measured accurately and the shoes selected accordingly. It might be useful to buy such a measuring device to use at home.
It is possible to make a cardboard pattern by drawing round the foot onto a piece of cardboard, cutting it out and then placing this in the shoe to see how well it fits. The shoe should be about 1.2 cm longer because the foot slides forward in the shoe while walking.
The sole of the shoe should be flexible in all directions; only then does it allow for the correct foot movement: rolling from heel to toe. Rubber soles offer a good shock absorption; leather ones are too thin.
The material should be soft and breathable and the sole non-slip. Däumling, Superfit, GEOX, Elefanten, etc. are good makes of children’s shoes. Velcro is easier to handle than shoelaces. It is also possible to add on a small tab to make the opening of it easier.
When deciding on the width of the shoe, it is important to remember that it must be possible to insert the thumb at the instep, and with EB children, of course bandaging must be considered.
There are a number of inserts for foot correction, e. g. flatfoot. Such inserts are a passive measure and do not replace training of the foot muscles. Sheepskin or gel inserts may be tried to reduce pressure on the foot (see Fig. 6.7).
