Chapter 6 • Independence in Everyday Life and Provision of...
Transcript of Chapter 6 • Independence in Everyday Life and Provision of...
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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:
SELF-CARE
Dressing and undressing
Putting on and taking off underclothes
JJ JK KL LL
Putting on and taking off socks/stockings
JJ JK KL LL
Trousers
JJ JK KL LL
Pullover/T-Shirt
JJ JK KL LL
Shirt/jacket
JJ JK KL LL
Which types of material are tolerated best?
Cotton o silk o synthetic materials o
Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
Key
JJ JK KL LL
very well well poor not at all with help
Please mark where appropriate The line beside the Smileys gives space for remarks or additions
Chapter 6 • Independence in Everyday Life and Provision of Assistive Devices
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Putting on and taking off shoes
Outdoor shoes
JJ JK KL LL
Does your child use:
Special shoes o inserts o padding o
Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
Fastenings
Buttons
JJ JK KL LL
Shoelaces
JJ JK KL LL
Zip
JJ JK KL LL
Velcro
JJ JK KL LL
Does your child use any adaptive devices or adaptations to make using fastenings easier?
––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
Eating and drinking
Cutting food
JJ JK KL LL
Eating with a spoon or fork
JJ JK KL LL
Does your child use:
Special cutlery o teaspoon o
Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
Drinking out of a glass or cup
JJ JK KL LL
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6Assessment of Children with EB
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Hygiene and grooming
Shower
JJ JK KL LL
Bath
JJ JK KL LL
Does your child use:
Bath board o anti-slip mat o
Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
Cleaning teeth
JJ JK KL LL
Does your child use:
Manual toothbrush o electric toothbrush o special toothbrush o
Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
Combing/brushing hair
JJ JK KL LL
Applying cream
JJ JK KL LL
Toileting (including wiping intimate parts)
JJ JK KL LL
Sleeping
Mattress/pillow/special protection
Foam mattress o sprung mattress o latex mattress o
Water bed o feather pillow o foam pillow o
Ergonomic pillow o support cushion(s) o sheepskin protection o
Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
Material of the bedclothes
Silk o cotton o
Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
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Sleeping position
Back o side o front o
Household activities
Opening a bottle
JJ JK KL LL
Opening a tin/can
JJ JK KL LL
Opening packaging
JJ JK KL LL
Preparing a snack
JJ JK KL LL
Opening and closing a drawer
JJ JK KL LL
Putting an electric plug into a socket and taking it out
JJ JK KL LL
Opening and closing a water tap
JJ JK KL LL
Shopping
Taking items off the shelf
JJ JK KL LL
Taking out coins
JJ JK KL LL
Carrying bags
JJ JK KL LL
Open the door with a key
JJ JK KL LL
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6Assessment of Children with EB
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LEISURE/HOBBIES
What hobbies does your child have?
Sport o music o drawing/painting o handicraft o
Reading o friends o singing o
Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
Which kinds of sport does your child do?
Horse riding o cycling o swimming o ball games o
Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
What measures to you take to prevent blistering in sport?
Knee pads o elbow pads o gloves o gel inserts o
Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
Is your child integrated into a group of friends?
JJ JK KL LL
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 o breathing techniques o massage o
Music o sound bed o
Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
Can you go on holiday with your child?
JJ JK KL LL
Where do you go and what kind of holiday is best?
Pony club (riding) o city trip o
Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
What conditions do you and your child need when on holiday?
Bathtub o washing machine o pureed food o air conditioning o
Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
Chapter 6 • Independence in Everyday Life and Provision of Assistive Devices
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SCHOOL
Writing with pen/pencil
JJ JK KL LL
Does your child use a special pen/pencil?
Writing on a PC
JJ JK KL LL
Does your child use any special adaptations?
Special mouse o touch screen o special keyboard o
Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
Speed of writing
JJ JK KL LL
Is the speed adequate for:
Copying from the board o dictation o tests o
Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
Turning pages of a book/magazine/newspaper
JJ JK KL LL
Using a mobile telephone
JJ JK KL LL
Using scissors
JJ JK KL LL
Does your child use special scissors?
Standard scissors o child’s scissors o
Loop/self-opening scissors o table-top scissors o
Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
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How does your child sit best in the classroom?
At the front o at the back o single place o wheelchair o upholstered chair o
Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
Does your child have any special device for sitting for long periods?
Padding o rounded seat edge on upholstered chair o
Rounded edge of table o rounded corners o
Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
Carrying a school bag
JJ JK KL LL
Does your child use assistive devices or techniques?
One set of books at school and one at home o trolley o
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 o in the passage/corridor o in the playground o
Is your child integrated into class life?
JJ JK KL LL
Does your child participate in gymnastics?
JJ JK KL LL
Alternatives?
Does your child participate in handicraft lessons?
JJ JK KL LL
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?
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MOBILITY
Transfer
Get into bed and get up again
JJ JK KL LL
Turnover in bed
JJ JK KL LL
Sit down on a chair and get up
JJ JK KL LL
Sit down at the table and get up
JJ JK KL LL
Sit down on a sofa or armchair and get up
JJ JK KL LL
Pick something up from the floor
JJ JK KL LL
Get in and out of public transport
JJ JK KL LL
Locomotion
Walk
JJ JK KL LL
How far?
Run
JJ JK KL LL
How far?
Go up and down stairs
JJ JK KL LL
Cross the street within the time span of the green light
JJ JK KL LL
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Tricycle
JJ JK KL LL
Scooter
JJ JK KL LL
Does your child use any special adaptations?
Safety scooter o special handlebars o
Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
Balance bike
JJ JK KL LL
Bicycle
JJ JK KL LL
Does your child use any special adaptations?
Balancing wheels o special handlebars o backpedal brake o gel saddle o
Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
Do you use a wheelchair?
Yes o no o
Do you use any special adaptations?
Electric wheelchair o special cushion o
Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
How does your child go to school?
Private car o school bus o public transport o bicycle o on foot o
Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
Taking your child in the car
Do you use any special adaptations?
Child safety seat o padded seatbelt o air conditioning o
Other ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––
Chapter 6 • Independence in Everyday Life and Provision of Assistive Devices
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