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Table 1 Frequencies (%) and mean scores of responses regarding caregiving tasks and consequences (n = 590 caregivers)

From: Cancer caregiving tasks and consequences and their associations with caregiver status and the caregiver’s relationship to the patient: a survey

CaTCoN items
Frequencies (%) Meana Std Dev
CaTCoN single items         
Caregivng tasks         
To what extent have you had to provide: None A little Some A lot Don’t know/not relevant Missing   
1a. Practical help to the patient? 13 32 24 29 1 1 56.9 34.4
1b. Personal care to the patient? 49 26 12 8 2 3 25.7 32.0
1c. Psychological support to the patient? 3 20 32 42 1 2 71.9 28.7
2. It is the responsibility of the hospitals to make referrals and appointments for examination and treatment. Have you felt that you have been partially responsible for keeping track of whether the patient has been referred and called for examinations and treatments quickly and correctly? Not at all To a low degree To some degree To a high degree Don’t know/not relevant Missing   
62 16 9 8 4 1 20.8 32.5
3. Have you felt that you have had too much responsibility in relation to home care (personal care, medications, etc.)? 60 20 8 7 5 1 19.7 30.6
4. Have you spent time transporting the patient? No, not at all Yes, a little Yes, some Yes, a lot Don’t know/not relevant Missing   
23 27 23 25 1 1 50.3 37.0
Caregiving consequences         
Has the patient’s cancer disease: No, not at all Yes, a little Yes, some Yes, a lot Don’t know/not relevant Missing   
6a. Caused you stress? 9 29 28 31 2 1 61.0 32.7
6b. Had a negative effect on your own physical health? 52 29 11 5 2 1 22.7 28.9
6c. Meant that you have not had enough time for (the rest of) your family? 49 28 13 6 3 1 25.1 30.5
6d. Meant that you have not had enough time for (the rest of) your friends/acquaintances? 45 28 14 9 3 1 29.1 33.0
6e. Increased you awareness of the important things in life? 5 18 30 45 2 1 27.5 30.0
6 f. Caused you to make positive changes? 19 39 24 11 5 1 57.1 30.7
6 g. Made you value your relationships with other people more? 10 26 31 29 4 1 39.4 32.7
7. Have you been able to take time off, get leave of absence from work, or make similar arrangements to the extent it has been necessary? Always/almost always Mostly Only sometimes Rarely/never Don’t know/not relevant Missing   
40 13 4 4 38 2 17.3 28.4
8. Has the patient’s illness meant that you have had to be absent from work so much that it has posed problems at your workplace? Not at all To a low degree To some degree To a high degree Don’t know/not relevant Missing   
50 11 4 1 33 1 11.6 22.7
9. Have you experienced negative financial consequences of being a caregiver? 71 11 6 3 8 1 11.6 24.6
20. Have you needed financial counselling? No Yes     Missing   
94 6     0 6.1 24.0
34. Have you needed to see a psychologist as a consequence of the patient’s illness? 80 20     0 20.4 40.3
38. Have you had the need to be able to take a break from the practical tasks (in the role of caregiver) in connection to the illness? To a high degree To some degree To a low degree Not at all Don’t know/not relevant Missing   
6 16 17 39 21 1 29.0 33.6
39. Have you felt that you have had the possibility to take a break from the practical tasks? 18 18 14 14 35 1 46.4 37.1
40. Have you had the need to lead a ‘normal’ life at the same time as you have been a caregiver? 38 29 12 8 12 1 70.3 32.4
41. Have you felt that you have had the possibility to lead a ‘normal’ life at the same time as being a caregiver? 35 36 16 5 7 1 30.5 29.4
CatCoN subscales         
Caregiving workload (items 1a, 1b, 1c, 3, 4)        45.1 23.5
Lack of personal growth (items 6e, 6f, 6g)        41.1 26.1
Lack of time for social relations (items 6c, 6d)        27.3 30.0
  1. aMean score range from 0 (no burden/problems) to 100 (maximum burden/problems).