Table 3 Perceived obstacles to active involvement in research (N = 147)

Lack of time

48%

(71)²

66.20 ^b

(11.45)

51%

(62)

35%

(8)

50%

(54)

42%

(15)

51%

(46)

45%

(24)

My own illness, disability or another hindering private situation

23%

(34)

70.90

(11.80)

22%

(27)

30%

(7)

23%

(25)

22%

(8)

13%^a

(12)

50%

(27)

Too demanding for me

21%

(31)

76.37 ^b

(10.47)

18%

(22)

39%

(9)

18%^a

(19)

33%

(12)

21%

(19)

22%

(12)

Differences in expectations between researchers and myself

21%

(31)

70.26

(10.50)

21%

(25)

26%

(6)

24%

(26)

14%

(5)

25%

(23)

15%

(8)

Difficulties in understanding the ways researchers express themselves

19%

(28)

68.68

(12.90)

18%

(22)

22%

(5)

18%

(19)

25%

(9)

21%

(19)

15%

(8)

Researchers lack competence to involve informal carers

11%

(16)

70.00

(11.74)

12%

(15)

0%

(0)

12%

(13)

8%

(3)

14%^a

(13)

4%

(2)

Differences between participants

7%

(10)

77.60 ^b

(4.33)

7%

(8)

9%

(2)

7%

(7)

6%

(2)

6%

(5)

9%

(5)

My lack of understanding of research

6%

(9)

73.55

(10.76)

6%

(7)

4%

(1)

7%

(8)

3%

(1)

9%

(8)

6%

(3)

I don’t think it will lead to any changes in my situation

5%

(8)

72.33

(5.79)

4%

(5)

9%

(2)

6%

(6)

6%

(2)

6%

(5)

7%

(4)