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Table 3 Main category of parents’ replies

From: Pain in Rett syndrome: a pilot study and a single case study on the assessment of pain and the construction of a suitable measuring scale

Questions

  

First study

Second study

When did it manifest paint?

Afternoon

 

80%

60%

 

Morning

 

20%

40%

Where was the child before she felt pain?

Home

 

90%

84%

 

Outside

 

10%

16%

What the was child doing before she was in pain?

Static activities

 

68%

68%

  

Listening to music

 

16%

  

Being in the car

 

4%

  

Outdoor in a wheelchair

12%

8%

  

Eating

6%

20%

  

Watching TV

18%

16%

  

Taking a lesson

6%

4%

  

Sleeping

12%

 
  

Sitting in the garden

12%

 
 

Dynamic activities

 

31%

32%

  

getting ready/dressing

6%

20%

  

Doing exercises

 

4%

  

Playing

12%

8%

  

Walking

12%

 

According to your daughter, where was the pain?

 

Intestines or belly

61%

72%

  

Uterus

25%

26%

  

Seizures

6%

16%

  

Disorders of various kinds

8%

 
  

Experience of discomfort

 

8%

What did you do to ease the pain?

Natural interventions

 

55%

56%

  

Massage

31%

4%

  

Giving food/water

6%

40%

  

Talking

 

16%

  

Listening to music

6%

12%

  

Loosening the seat belt

 

12%

  

Cuddle

6%

 
 

Pharmacological interventions

 

45%

44%

  

Anti- inflammatory

33%

36%

  

Painkiller patch

 

8%

  

Blower

6%

 
  

Supplements

6%

 
 

Combined interventions

 

16%

16%

Average pain intensity (scale ranging from 1 to 10)

  

8.36

7.94