Table 4 Parent’s need for further information (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 Need for Further Information | Overall (N = 56) | Parents of children with cancer (N = 18) | Parents of children with a non-cancer disease (N = 38) | p-value | |||
|---|---|---|---|---|---|---|---|
Need for Further Information | Very much/a great deal a | Need for Further Information | Very much/a great deal a | Need for Further Information | Very much/a great deal a | ||
I needed: | M (SD) | n/N (%) | M (SD) | n/N (%) | M (SD) | n/N (%) | |
1 To feel there was hope | 1.2 (1.2) | 7/52 (13.5) | 1.2 (1.3) | 3/18 (16.7) | 1.2 (1.2) | 4/34 (11.8) | .682 b |
2 To know when to expect side effects to occur | 1.6 (1.4) | 19/53 (35.8) | 1.7 (1.2) | 6/18 (33.3) | 1.6 (1.6) | 13/35 (37.1) | 1.00 b |
3 To know what side effects the treatment can cause | 1.6 (1.5) | 17/53 (32.1) | 1.6 (1.5) | 4/18 (22.2) | 1.6 (1.6) | 13/35 (37.1) | .358 b |
4 To have thorough information about how to care for my child at home | 1.3 (1.5) | 14/50 (28.0) | 1.2 (1.5) | 4/17 (23.5) | 1.4 (1.5) | 10/33 (30.3) | .746 b |
5 To know that health care professionals offer me the opportunity to participate equally in my child’s care | 1.1 (1.3) | 10/52 (19.2) | 1.2 (1.3) | 3/18 (16.7) | 1.1 (1.2) | 7/34 (20.6) | 1.00 b |
6 To have trust in the health care system | 1.5 (1.4) | 17/53 (32.1) | 1.5 (1.5) | 6/18 (33.3) | 1.5 (1.4) | 11/35 (31.4) | 1.00 b |
7 To be informed of changes to my child’s condition | 1.6 (1.4) | 14/50 (28.0) | 1.8 (1.6) | 7/17 (41.2) | 1.5 (1.4) | 7/33 (21.2) | .187 b |
8 To know what treatment my child was receiving | 1.3 (1.4) | 11/52 (21.2) | 1.4 (1.6) | 4/17 (23.5) | 1.3 (1.3) | 7/35 (20.0) | 1.00 b |
9 To feel that the health care professionals were sincere in caring about my child | 1.0 (1.2) | 8/52 (15.4) | 1.2 (1.3) | 4/17 (23.5) | 0.9 (1.2) | 4/35 (11.4) | .413 b |
10 To have explanations given in terms that were understandable to me | 1.1 (1.2) | 7/52 (13.5) | 1.3 (1.3) | 3/17 (17.6) | 0.9 (1.2) | 4/35 (11.4) | .670 b |
11 To be told when and why changes were being made in my child’s treatment plans | 1.2 (1.3) | 7/50 (14.0) | 1.5 (1.3) | 3/17 (17.6) | 1.0 (1.2) | 4/33 (12.1) | .677 b |
12 To know I could ask questions any time | 1.2 (1.5) | 11/52 (21.2) | 1.6 (1.4) | 4/18 (22.2) | 0.9 (1.5) | 7/34 (20.6) | 1.00 b |
13 To know to whom I should direct my questions | 1.2 (1.4) | 12/52 (23.1) | 1.3 (1.3) | 4/18 (22.2) | 1.2 (1.5) | 8/34 (23.5) | 1.00 b |
14 To know the probable outcome of my child’s illness | 1.8 (1.6) | 21/52 (40.4) | 1.9 (1.7) | 9/18 (50.0) | 1.7 (1.6) | 12/34 (35.3) | .378 b |
15 To know how to give information to my other children (appropriate to his/her age) | 1.5 (1.6) | 17/46 (37.0) | 1.9 (1.7) | 10/18 (55.6) | 1.3 (1.5) | 7/28 (25.0) | .060 b |
16 To know what information to give to my other children (appropriate to his/her age) | 1.5 (1.5) | 15/46 (32.6) | 1.8 (1.7) | 8/18 (44.4) | 1.3 (1.4) | 7/28 (25.0) | .208 b |
17 To know how to handle the feelings of my other children | 1.7 (1.6) | 19/46 (41.3) | 1.9 (1.7) | 9/18 (50.0) | 1.6 (1.6) | 10/28 (35.7) | .373 b |
Need for Further Information – additional items | |||||||
18 To have confidence in the staff caring for my child | 1.2 (1.3) | 9/53 (17.0) | 1.3 (1.1) | 2/18 (11.1) | 1.1 (1.4) | 7/35 (20.0) | .701 b |
19 To know that my child’s pain is well adjusted | 1.8 (1.6) | 19/51 (37.3) | 1.5 (1.6) | 5/17 (29.4) | 1.9 (1.6) | 14/34 (41.2) | .543 b |
20 To be able to speak with my child’s treating physician at any time | 1.5 (1.5) | 15/53 (28.3) | 1.9 (1.5) | 7/18 (38.9) | 1.3 (1.5) | 8/35 (22.9) | .334 b |
21 To have enough time to make decisions | 1.2 (1.4) | 9/51 (17.6) | 1.2 (1.4) | 2/18 (11.1) | 1.2 (1.5) | 7/33 (21.2) | .464 b |
22 To have my child be treated with dignity | 1.0 (1.4) | 7/50 (14.0) | 1.2 (1.6) | 3/16 (18.8) | 0.9 (1.4) | 4/34 (11.8) | .666 b |
23 To have the opportunity to say goodbye to my child | 1.2 (1.5) | 12/52 (23.1) | 1.2 (1.5) | 4/17 (23.5) | 1.1 (1.6) | 8/35 (22.9) | 1.00 b |
24 To be with my child when he/she dies | 0.9 (1.5) | 8/51 (15.7) | 0.8 (1.6) | 3/17 (17.6) | 0.9 (1.5) | 5/34 (14.7) | 1.00 b |
25 To reach the team 24 hours a day, 7 days a week | 0.9 (1.4) | 9/52 (17.3) | 1.0 (1.6) | 3/17 (17.6) | 0.8 (1.3) | 6/35 (17.1) | 1.00 b |
26 To be prepared for the medical aspects of dying by the treating team | 1.6 (1.6) | 16/53 (30.2) | 1.4 (1.6) | 5/18 (27.8) | 1.6 (1.7) | 11/35 (31.4) | 1.00 b |
27 To know that my other children were being well cared for as well | 1.4 (1.6) | 12/47 (25.5) | 1.4 (1.5) | 5/18 (27.8) | 1.3 (1.6) | 7/29 (24.1) | 1.00 b |
28 To have a contact person for every situation at hand | 1.3 (1.5) | 11/51 (21.6) | 1.4 (1.4) | 4/18 (22.2) | 1.3 (1.5) | 7/33 (21.2) | 1.00 b |
29 To have room for conversations with the team about issues other than my child’s disease | 1.0 (1.3) | 9/52 (17.3) | 1.0 (1.4) | 4/18 (22.2) | 1.0 (1.2) | 5/34 (14.7) | .702 b |
30 To be respected for the way I deal with my child’s disease | 1.0 (1.4) | 9/53 (17.0) | 1.0 (1.4) | 4/18 (22.2) | 1.0 (1.3) | 5/35 (14.3) | .469 b |
31 To get support in dealing with different treatment requests within our family | 1.3 (1.4) | 14/53 (26.4) | 1.2 (1.4) | 4/18 (22.2) | 1.4 (1.5) | 10/35 (28.6) | .748 b |
32 To have enough time for myself, e.g. for relaxation | 1.3 (1.4) | 12/52 (23.1) | 1.2 (1.4) | 3/18 (16.7) | 1.3 (1.4) | 9/34 (26.5) | .507 b |
33 To get advice on issues of social-law, such as cost assumption | 1.5 (1.6) | 16/52 (30.8) | 1.2 (1.5) | 4/18 (22.2) | 1.7 (1.6) | 12/34 (35.3) | .529 b |