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 |