Table 2 Importance of parent’s needs (N = 56) and comparison of parents of children with cancer (N = 18) and those of children with a non-cancer disease (N = 38)
FIN-PED II Importance of Care Needs | Overall (N = 56) | Parents of children with cancer (N = 18) | Parents of children with a non-cancer disease (N = 38) | p-value | |||
|---|---|---|---|---|---|---|---|
Importance of Care Needs | Very/extremely important a | Importance of Care Needs | Very/extremely important a | Importance of Care Needs | Very/extremely important a | ||
I needed: | M (SD) | n/N (%) | M (SD) | n/N (%) | M (SD) | n/N (%) | |
1 To feel there was hope | 2.6 (1.4) | 31/53 (58.5) | 2.9 (1.4) | 13/18 (72.2) | 2.5 (1.3) | 18/35 (51.4) | .239 b |
2 To know when to expect side effects to occur | 3.1 (1.0) | 44/54 (81.5) | 2.9 (1.2) | 12/18 (66.7) | 3.2 (0.9) | 32/36 (88.9) | .067 b |
3 To know what side effects the treatment can cause | 3.3 (0.8) | 47/54 (87.0) | 3.1 (1.0) | 15/18 (83.3) | 3.4 (0.7) | 32/36 (88.9) | .674 b |
4 To have thorough information about how to care for my child at home | 3.7 (0.6) | 53/55 (96.4) | 3.4 (0.9) | 16/18 (88.9) | 3.9 (0.3) | 37/37 (100) | .103 b |
5 To know that health care professionals offer me the opportunity to participate equally in my child’s care | 3.6 (0.9) | 52/55 (94.5) | 3.5 (1.0) | 16/18 (88.9) | 3.7 (0.8) | 36/37 (97.3) | .247 b |
6 To have trust in the health care system | 2.8 (1.1) | 41/56 (73.2) | 2.9 (0.7) | 13/18 (72.2) | 2.8 (1.2) | 28/38 (73.7) | 1.00 b |
7 To be informed of changes to my child’s condition | 3.8 (0.5) | 54/55 (98.2) | 3.7 (0.6) | 17/18 (94.4) | 3.8 (0.4) | 37/37 (100) | .327 b |
8 To know what treatment my child was receiving | 3.8 (0.5) | 53/55 (96.4) | 3.7 (0.6) | 17/18 (94.4) | 3.8 (0.4) | 36/37 (97.3) | 1.00 b |
9 To feel that the health care professionals were sincere in caring about my child | 3.9 (0.3) | 56/56 (100) | 3.8 (0.4) | 18/18 (100) | 3.9 (0.3) | 38/38 (100) | n.a.c |
10 To have explanations given in terms that were understandable to me | 3.4 (0.8) | 47/55 (85.5) | 3.4 (0.8) | 15/18 (83.3) | 3.4 (0.9) | 32/37 (86.5) | 1.00 b |
11 To be told when and why changes were being made in my child’s treatment plans | 3.5 (0.9) | 50/53 (94.3) | 3.3 (1.0) | 15/17 (94.4) | 3.6 (0.8) | 35/36 (97.2) | .238 b |
12 To know I could ask questions any time | 3.8 (0.4) | 55/55 (100) | 3.8 (0.4) | 18/18 (100) | 3.8 (0.4) | 37/37 (100) | n.a. c |
13 To know to whom I should direct my questions | 3.6 (0.6) | 51/55 (92.7) | 3.6 (0.6) | 17/18 (94.4) | 3.6 (0.6) | 34/37 (91.9) | 1.00 b |
14 To know the probable outcome of my child’s illness | 3.7 (0.8) | 52/56 (92.9) | 3.6 (0.7) | 16/18 (88.9) | 3.7 (0.8) | 36/38 (94.7) | .587 b |
15 To know how to give information to my other children (appropriate to his/her age) | 2.8 (1.5) | 34/47 (72.3) | 3.0 (1.5) | 15/18 (83.3) | 2.7 (1.6) | 19/29 (65.5) | .315 b |
16 To know what information to give to my other children (appropriate to his/her age) | 2.8 (1.5) | 34/46 (73.9) | 3.0 (1.5) | 15/18 (83.3) | 2.7 (1.6) | 19/28 (67.9) | .315 b |
17 To know how to handle the feelings of my other children | 3.1 (1.4) | 37/46 (80.4) | 3.1 (1.5) | 15/18 (83.3) | 3.0 (1.4) | 22/28 (78.6) | 1.00 b |
Importance of Care Needs – additional items | |||||||
18 To have confidence in the staff caring for my child | 3.9 (0.4) | 55/55 (100) | 3.9 (0.2) | 18/18 (100) | 3.8 (0.4) | 37/37 (100) | n.a. c |
19 To know that my child’s pain is well adjusted | 3.9 (0.3) | 55/55 (100) | 3.9 (0.3) | 18/18 (100) | 4.0 (0.2) | 37/37 (100) | n.a. c |
20 To be able to speak with my child’s treating physician at any time | 3.5 (0.7) | 49/55 (89.1) | 3.7 (0.6) | 17/18 (94.4) | 3.5 (0.7) | 32/37 (86.5) | .651 b |
21 To have enough time to make decisions | 3.3 (1.0) | 48/54 (88.9) | 3.1 (1.2) | 16/18 (88.9) | 3.4 (0.9) | 32/36 (88.9) | 1.00 b |
22 To have my child be treated with dignity | 3.9 (0.3) | 56/56 (100) | 3.9 (0.2) | 18/18 (100) | 3.9 (0.3) | 38/38 (100) | n.a. c |
23 To have the opportunity to say goodbye to my child | 4.0 (0.2) | 56/56 (100) | 3.9 (0.2) | 18/18 (100) | 4.0 (0.2) | 38/38 (100) | n.a. c |
24 To be with my child when he/she dies | 3.9 (0.3) | 53/54 (98.1) | 3.9 (0.2) | 18/18 (100) | 3.9 (0.4) | 35/36 (97.2) | 1.00 b |
25 To reach the team 24 hours a day, 7 days a week | 3.8 (0.5) | 55/56 (98.2) | 3.8 (0.4) | 18/18 (100) | 3.7 (0.5) | 37/38 (97.4) | 1.00 b |
26 To be prepared for the medical aspects of dying by the treating team | 3.5 (0.7) | 49/55 (89.1) | 3.3 (0.9) | 15/18 (83.3) | 3.5 (0.7) | 34/37 (91.9) | .381 b |
27 To know that my other children were being well cared for as well | 3.2 (1.3) | 38/46 (82.6) | 3.1 (1.3) | 14/18 (77.8) | 3.2 (1.3) | 24/28 (85.7) | .693 b |
28 To have a contact person for every situation at hand | 3.4 (0.8) | 49/54 (90.7) | 3.6 (0.6) | 17/18 (94.4) | 3.4 (0.9) | 32/36 (88.9) | .655 b |
29 To have room for conversations with the team about issues other than my child’s disease | 2.3 (1.3) | 23/55 (41.8) | 2.4 (1.3) | 11/18 (61.1) | 2.2 (1.4) | 12/37 (32.4) | .079 b |
30 To be respected for the way I deal with my child’s disease | 3.5 (0.9) | 49/55 (89.1) | 3.4 (1.0) | 16/18 (88.9) | 3.5 (0.8) | 33/37 (89.2) | 1.00 b |
31 To get support in dealing with different treatment requests within our family | 2.5 (1.3) | 31/54 (57.4) | 2.5 (1.4) | 12/18 (66.7) | 2.5 (1.3) | 19/36 (52.8) | .392 b |
32 To have enough time for myself, e.g. for relaxation | 1.9 (1.4) | 17/55 (30.9) | 2.4 (1.4) | 9/18 (50.0) | 1.6 (1.3) | 8/37 (21.6) | .060 b |
33 To get advice on issues of social-law, such as cost assumption | 2.8 (1.2) | 38/55 (69.1) | 2.8 (1.2) | 13/18 (72.2) | 2.7 (1.2) | 25/37 (67.6) | 1.00 b |