Table 4 Items and ratings in round 1
Items Round 1 -completed by 67 participants | Ratings Round 1 1 not important- 5 very important Median (Q1, Q3) |
|---|---|
Week 1—Introduction | |
1. How important do you think it is for this support and education program that the person gets to write about their experience of their kidney disease before setting goals for the program? | 5 (4, 5) |
2. How important do you think it is for this support and education program to encourage regular physical activity? | 5 (4, 5) |
Week 2 – Living with CKD and waiting for transplantation | |
3. Information about the kidneys | 5 (4, 5) |
4. Information about kidney disease and kidney failure | 5 (4, 5) |
5. Information about dialysis | 5 (4, 5) |
6. Information about what life with dialysis may be like, regarding relations and sexuality | 5 (4, 5) |
7. Information about what life with dialysis may be like, regarding diet | 5 (4, 5) |
8. Information about what life with dialysis may be like, regarding activities | 5 (4, 5) |
9. Information about access to advice and support for those with kidney disease | 5 (4, 5) |
10. Information about peritoneal dialysis as a treatment | 5 (4, 5) |
11. Information about hemodialysis as a treatment | 5 (4, 5) |
12. Information that kidney disease can cause uncertainty in life—about fear and anxiety | 5 (4, 5) |
13. Information that significant others often also experience fear and anxiety | 5 (4, 5) |
14. Information about how work and sick leave can affect a person during the wait for kidney transplantation and how soon a return to work is usually relevant after kidney transplantation | 5 (4, 5) |
15. Information about what is required to be able to have a kidney transplant | 5 (5, 5) |
16. Differences in kidney transplantation with a living/deceased donor | 4 (4, 5) |
17. Information about transplant compatibility, blood types and tissue type | 4 (4, 5) |
18. Information about the Scandinavian kidney exchange program | 4 (3, 5) |
19. Information about what to expect from a transplanted kidney | 5 (5, 5) |
20. Information about how the waiting list works | 5 (5, 5) |
21. Information about temporary deactivation on the waiting list for, for example, illness or travel. How and why | 5 (4, 5) |
22. Information that examinations performed as part of the transplant investigation may need to be renewed during the waiting period, and that in the event of deteriorating health conditions, new decisions may need to be made about transplantation | 5 (4, 5) |
23. Information about mental stress during the waiting period | 5 (4, 5) |
24. Preparations for the trip to the transplant center | 5 (4, 5) |
25. Packing list—what to take with you when it is time for the transplant | 4 (3, 5) |
26. Information about self-care for persons who want to have a kidney transplant—Why different self-care activities are important for persons who are waiting for a transplant | 5 (4, 5) |
27. What happens when the call for a kidney transplant comes | 5 (5, 5) |
28. What will happen at the transplant center; before, during and after transplantation | 5 (4, 5) |
29. Psychological reactions that are common after transplantation | 5 (4, 5) |
30. Follow-up after transplantation | 5 (4, 5) |
31. Basic information about medication used after transplantation and their most common side-effects | 5 (5, 5) |
32. How one may expect to feel after the transplant | 5 (5, 5) |
33. Basic information about complications after kidney transplantation | 5 (4, 5) |
34. Taking your medication correctly; why it is important and tips on how to facilitate it | 5 (5, 5) |
35. Tobacco and how it can affect the body after transplantation | 5 (4, 5) |
36. Physical activity and how it affects the body after the transplant | 5 (4, 5) |
37. Dietary advice | 5 (4, 5) |
38. Food and hand hygiene | 5 (4, 5) |
39. Sun protection | 5 (5, 5) |
40. To be observant of your body for any symptoms of side effects or complications | 5 (5, 5) |
41. About relations, sexuality, contraception and pregnancy after transplantation | 5 (4, 5) |
42. Information on working after transplantation | 5 (4, 5) |
Week 3 – Acceptance | |
43. How important do you think Acceptance training is for the support and training program? | 5 (4, 5) |
44. How important is it that examples are given that make it easier for the participant to link the exercises to their own situation? | 5 (4, 5) |
45. How important is it in a chapter on acceptance to see and hear a patient talk about his or her experience of waiting for a transplant? | 5 (4, 5) |
Week 4 – Problem solving | |
46. How important do you think Problem Solving is for the support and training program? | 5 (4, 5) |
47. How important is it that examples of problem solving are about kidney failure and waiting for a kidney transplant? | 5 (4, 5) |
Week 5, 6, 7 – Not putting life on hold (calendar therapy, behavioural activation) | |
48. How important do you think it is that this part of the program is spread over three weeks? | 4 (3, 5) |
49. How important do you think it is to learn to take advantage of the time while waiting for a transplant, despite dialysis and illness? | 5 (4, 5) |
50. How important do you think learning to break negative circles and dwelling are for the support and education program? | 5 (5, 5) |
51. How important do you think calendar therapy is for the support and education program? | 4 (4, 5) |
Week 8 – completion | |
52. How important do you think it is to create an individual action plan to return to regularly during the remainder of the waiting period for transplantation, or when needed? | 5 (4, 5) |
Program design | |
53. What do you think about the length of the program of 8 weeks? | 4 (3, 5) |
54. How valuable do you think it is for program participants to take part of other patients' experiences of kidney disease, dialysis and transplantation, in form of quotes? | 5 (4, 5) |
55. How important do you think it is to see patients tell about their experiences in the form of films? | 5 (4, 5) |
56. How important is it that parts of the program information is told in form of films? | 4 (4, 5) |
57. How important do you think it is to have a lot of pictures and figures in the program? | 4 (3, 5) |
58. How important do you think it is that the participants are asked to submit their homework and any questions to their contact person every week, and each week they receive feedback on what they submit? | 4 (3, 5) |
59. Do you think patients should be offered this type of support and education? Yes/No | Yes 100% |