Table 3 Fulfilment 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 Need Fulfilment | Overall (N = 56) | Parents of children with cancer (N = 18) | Parents of children with a non-cancer disease (N = 38) | p-value | |||
|---|---|---|---|---|---|---|---|
Need Fulfilment | not met at all/ partly met a | Need Fulfilment | not met at all/ partly met a | Need Fulfilment | not met at all/ partly met a | ||
I needed: | M (SD) | n/N (%) | M (SD) | n/N (%) | M (SD) | n/N (%) | |
1 To feel there was hope | 1.8 (1.2) | 27/44 (61.4) | 1.6 (1.1) | 9/14 (64.3) | 1.9 (1.2) | 18/30 (60.0) | 1.00 b |
2 To know when to expect side effects to occur | 2.7 (0.9) | 16/52 (30.8) | 2.8 (1.0) | 4/17 (23.5) | 2.7 (0.8) | 12/35 (34.3) | .532 b |
3 To know what side effects the treatment can cause | 2.8 (0.8) | 15/53 (28.3) | 2.7 (1.0) | 5/17 (29.4) | 2.9 (0.6) | 10/36 (27.8) | 1.00 b |
4 To have thorough information about how to care for my child at home | 3.2 (0.8) | 11/55 (20.0) | 3.3 (0.7) | 2/18 (11.1) | 3.1 (0.8) | 9/37 (24.3) | .307 b |
5 To know that health care professionals offer me the opportunity to participate equally in my child’s care | 3.3 (0.9) | 6/53 (11.3) | 2.9 (1.1) | 4/17 (23.5) | 3.4 (0.8) | 2/36 (5.6) | .076 b |
6 To have trust in the health care system | 2.4 (1.1) | 20/51 (39.2) | 2.4 (1.0) | 6/17 (35.3) | 2.4 (1.1) | 14/34 (41.2) | .767 b |
7 To be informed of changes to my child’s condition | 3.0 (0.8) | 13/55 (23.6) | 2.9 (0.7) | 3/18 (16.7) | 3.1 (0.8) | 10/37 (27.0) | .510 b |
8 To know what treatment my child was receiving | 3.3 (0.7) | 6/55 (10.9) | 3.2 (0.7) | 3/18 (16.7) | 3.3 (0.7) | 3/37 (8.1) | .381 b |
9 To feel that the health care professionals were sincere in caring about my child | 3.5 (0.7) | 6/56 (10.7) | 3.2 (0.8) | 4/18 (22.2) | 3.6 (0.6) | 2/38 (5.3) | .077 b |
10 To have explanations given in terms that were understandable to me | 3.3 (0.8) | 6/54 (11.1) | 3.1 (0.6) | 3/18 (16.7) | 3.4 (0.9) | 3/36 (8.3) | .388 b |
11 To be told when and why changes were being made in my child’s treatment plans | 3.1 (0.9) | 6/51 (11.8) | 2.8 (1.0) | 3/16 (18.8) | 3.2 (0.8) | 3/35 (8.6) | .363 b |
12 To know I could ask questions any time | 3.4 (0.8) | 10/55 (18.2) | 3.1 (0.8) | 5/18 (27.8) | 3.6 (0.7) | 5/37 (13.5) | .268 b |
13 To know to whom I should direct my questions | 3.2 (0.8) | 12/55 (21.8) | 3.0 (0.8) | 5/18 (27.8) | 3.3 (0.8) | 7/37 (18.9) | .499 b |
14 To know the probable outcome of my child’s illness | 2.7 (1.0) | 20/54 (37.0) | 2.7 (0.8) | 7/18 (38.9) | 2.7 (1.0) | 13/36 (36.1) | 1.00 b |
15 To know how to give information to my other children (appropriate to his/her age) | 2.1 (1.3) | 16/39 (41.0) | 1.8 (1.3) | 9/15 (60.0) | 2.3 (1.2) | 7/24 (29.2) | .094 b |
16 To know what information to give to my other children (appropriate to his/her age) | 2.0 (1.3) | 16/38 (42.1) | 1.8 (1.3) | 8/15 (53.3) | 2.2 (1.3) | 8/23 (34.8) | .324 b |
17 To know how to handle the feelings of my other children | 2.0 (1.2) | 22/40 (55.0) | 1.7 (1.2) | 11/15 (73.3) | 2.2 (1.2) | 11/25 (44.0) | .104 b |
Need Fulfilment – additional items | |||||||
18 To have confidence in the staff caring for my child | 3.2 (0.7) | 10/54 (18.5) | 3.1 (0.7) | 3/18 (16.7) | 3.3 (0.8) | 7/36 (19.4) | 1.00 b |
19 To know that my child’s pain is well adjusted | 3.0 (0.8) | 14/54 (25.9) | 3.1 (0.7) | 3/18 (16.7) | 2.9 (0.8) | 11/36 (30.6) | .339 b |
20 To be able to speak with my child’s treating physician at any time | 3.0 (0.8) | 15/55 (27.3) | 2.8 (0.6) | 6/18 (33.3) | 3.0 (0.9) | 9/37 (24.3) | .688 b |
21 To have enough time to make decisions | 2.8 (1.0) | 15/54 (27.8) | 2.4 (1.1) | 6/18 (33.3) | 2.9 (0.9) | 9/36 (25.0) | .251 b |
22 To have my child be treated with dignity | 3.5 (0.7) | 6/55 (10.9) | 3.4 (0.7) | 2/18 (11.1) | 3.6 (0.7) | 4/37 (10.8) | 1.00 b |
23 To have the opportunity to say goodbye to my child | 3.7 (0.7) | 4/54 (7.4) | 3.5 (0.6) | 1/17 (5.9) | 3.8 (0.7) | 3/37 (8.1) | 1.00 b |
24 To be with my child when he/she dies | 3.8 (0.7) | 4/54 (7.4) | 3.9 (0.3) | 0/18 (0) | 3.7 (0.8) | 4/36 (11.1) | .289 b |
25 To reach the team 24 hours a day, 7 days a week | 3.6 (0.7) | 3/55 (5.5) | 3.5 (0.8) | 1/18 (5.6) | 3.7 (0.6) | 2/37 (5.4) | 1.00 b |
26 To be prepared for the medical aspects of dying by the treating team | 2.9 (1.0) | 19/54 (35.2) | 2.9 (0.9) | 5/18 (27.8) | 2.9 (1.0) | 14/36 (38.9) | .550 b |
27 To know that my other children were being well cared for as well | 2.4 (1.4) | 14/46 (30.4) | 2.3 (1.4) | 4/18 (22.2) | 2.5 (1.5) | 10/28 (35.7) | .643 b |
28 To have a contact person for every situation at hand | 2.9 (1.0) | 12/54 (22.2) | 2.9 (0.6) | 4/18 (22.2) | 2.9 (1.2) | 8/36 (22.2) | .677 b |
29 To have room for conversations with the team about issues other than my child’s disease | 2.3 (1.3) | 13/54 (24.1) | 2.4 (1.3) | 4/18 (22.2) | 2.2 (1.4) | 9/36 (25.0) | .927 b |
30 To be respected for the way I deal with my child’s disease | 3.2 (0.9) | 8/55 (14.5) | 3.0 (1.0) | 3/18 (16.7) | 3.4 (0.8) | 5/37 (13.5) | .295 b |
31 To get support in dealing with different treatment requests within our family | 2.3 (1.3) | 12/53 (22.6) | 2.2 (1.3) | 3/18 (16.7) | 2.3 (1.3) | 9/35 (25.7) | .789 b |
32 To have enough time for myself, e.g. for relaxation | 1.7 (1.3) | 24/54 (44.4) | 2.0 (1.3) | 7/18 (38.9) | 1.5 (1.3) | 17/36 (47.2) | .537 b |
33 To get advice on issues of social-law, such as cost assumption | 2.5 (1.2) | 20/54 (37.0) | 2.7 (1.3) | 4/18 (22.2) | 2.5 (1.2) | 16/36 (44.4) | .248 b |