Table 1 Details of the caregivers and patients’ responses in the 4 focus groups

1

Able to sit on chair or with legs off bed with or without hand support

Sitting on normal school chair or public spaces (stools in restaurant)

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●

●

●

Sitting on toilet

●

●

●

Sitting in car

●

Independence out of the house

●

●

Dress by herself/himself

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2

Able to sit on floor cross legged or legs stretched in front

Play on floor with siblings

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●

●

●

Sit on lounge chair, deck-chair

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●

Picnic

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●

Travel with less equipment

●

Inclusion in activities

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3

Able to bring hands to face at eye level

Wash face

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●

●

●

Brush and style

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●

●

●

Eat

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●

Put on eye glasses

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●

●

Answer telephone

●

Blow nose

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4

Able to bring hands to head

Scratch head

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●

●

●

Wash, brush, style hair

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●

●

Put on hat

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●

●

Dress upper body

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●

5

Roll to side

Sleep by myself in my own room

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●

Caregiver does not have to wake up to turn him/her

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●

●

Help during dressing lying down

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●

Not having to turn head to see

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6-7-8-9

Roll

Play

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●

Sleep well

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●

Sunbathe

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●

Experience space

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●

Reach for something at sides when lying down

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●

10

Able to lye down from sitting

Independence: lye down and rest when tired

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●

●

●

Fun movement when falling

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●

Rest on the back

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Safety: Fall in a controlled way (avoid head trauma)

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11

Able to raise head when lying prone

Turn head react to stimulus, visual exploration of surroundings

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●

●

Read a book

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●

●

Not be afraid of choking

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Watch TV

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●

On beach not get sand in face

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12-13

Able to prop on forearms or extend arms

Read a book

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●

●

Watch TV

●

●

●

Stretch back

●

Sun bathe

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14

Able to sit up from lying

No need for assistant

●

●

●

Wake up and not have to wait for someone to sit me up

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●

●

●

Independence

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●

Sit up and drink at night

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●

15

Able to four-point kneel

Play like an animal in school

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●

●

Hiding

●

Be able to fit under small spaces

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16

Able to crawl

Move around

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●

●

●

Experience space

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●

Go get objects

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●

Play on floor

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●

17

Lift head from supine

Change head position

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●

●

Drink at night

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●

Read

●

Watch TV

●

Check the clock or alarm

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18

Stand with support

Use toilet standing (boy)

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●

●

Use full length mirror, perceive body dimensions and proportions

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●

Shower properly

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Climb in car

●

Use kitchen burners, cook

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19

Stand without support

Public spaces: wait for bus, stand in cue

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Cook

●

Use normal sink

●

Dress

●

Reach something on a shelf

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20

Able to walk

Freedom

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●

●

Go where and when you please

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●

●

Get to places

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●

●

Not to have to rely on wheelchair batteries

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21-22

Able to flex hip from supine

Dress (pants, socks)

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●

●

●

Scratch legs, kill mosquito

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●

Change position

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23-24-25-26

Able to half kneel

Pick up object on floor

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●

Tie shoe laces

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●

Put away object on low surfaces

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Pet a dog

●

Play

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Make a proposal

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Kneel in church

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Talk with a kid

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27

Able to go from standing to sitting

Not get hurt when falling or not fall in an embarrassing way

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●

Sit on grass or sand

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●

●

Pet a dog

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Sit beside a friend in same position/play on floor

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●

Pick up something from floor

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●

28

Able to squat

Sit when needed

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●

Pick up objects on floor

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●

●

Pee

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●

Tie shoes

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Pull up trousers

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29

Able to jump

Have fun, play

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●

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Dance, gymnastics

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Avoid obstacles

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●

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Normality

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●

Go to friends’ home regardless of where they live

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●

●

Stay and live in my own home

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30-31-32-33

Go up and down stairs

Absence of barriers

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●

●

●

Normality

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●

Go to friends’ home regardless of where they live

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●

●

Stay and live in my own home

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