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

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