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Table 3 Zarit Burden Interview Items – distribution of scores

From: Caregiving in ALS – a mixed methods approach to the study of Burden

  

Score

 

0

1

2

3

4

ZBI Item

Question

N

Never

Rarely

Sometimes

Quite frequently

Nearly always

Mean Item Score

 1

Do you feel that your relative asks for more help than he or she needs?

78

30

20

19

5

4

1.14

 2

Do you feel that because of the time you spend with your relative, you don’t have enough time for yourself?

78

25

10

24

13

6

1.55

 3

Do you feel stressed between caring for your relative and trying to meet other responsibilities for your family or work?

76

16

8

27

19

6

1.88

 4

Do you feel embarrassed about your relative’s behaviour?

78

59

11

6

1

1

0.38

 5

Do you feel angry towards your relative when you are around him/her?

78

39

17

20

1

1

0.82

 6

Do you feel that your relative currently affects your relationship with other family members or friends in a negative way?

78

39

11

20

5

3

1.00

 7

Are you afraid of what the future holds for your relative?

78

2

3

16

28

29

3.01

 8

Do you feel your relative is dependent upon you?

78

5

7

18

19

29

2.77

 9

Do you feel strained when you are around your relative?

78

30

14

28

5

1

1.14

 10

Do you feel your health has suffered because of your involvement with your relative?

78

41

16

15

5

1

0.83

 11

Do you feel that you don’t have as much privacy as you would like because of your relative?

78

46

7

16

5

4

0.90

 12

Do you feel that your social life has suffered because you are caring for your relative?

78

24

11

23

12

8

1.60

 13

Do you feel uncomfortable about having friends over because of your relative?

78

61

7

4

4

2

0.45

 14

Do you feel that your relative expects you to take care of him/her as if you were the only one he/she could depend on?

77

28

13

15

6

15

1.57

 15

Do you feel that you don’t have enough money to care for your relative in addition to the rest of your expenses?

78

43

10

12

6

7

1.03

 16

Do you feel that you will be unable to take care of your relative for much longer?

78

47

14

14

3

0

0.65

 17

Do you feel you have lost control of your life since your relative’s illness?

78

30

11

21

11

5

1.36

 18

Do you wish you could just leave the care of your relative to someone else?

77

53

10

12

1

1

0.53

 19

Do you feel uncertain about what to do about your relative?

77

28

21

22

5

1

1.09

 20

Do you feel you should be doing more for your relative?

78

28

18

27

3

2

1.14

 21

Do you feel you could do a better job in caring for your relative?

78

22

20

32

3

1

1.24

 

N

Not at all

A little

Moderately

Quite a bit

Extremely

Mean Item Score

 22

Overall how burdened do you feel in caring for your relative?

78

27

25

11

12

3

1.22