Table 2.
Importance and fulfillment of family caregiver needs at the beginning of SIPC (N = 232) and within the last 7 days of the patient’s life (N = 160)
| At the beginning of SIPC (T1)(N = 232) | Within the last 7 days of the patient’s life (T2) (retrospective assessment, N = 160) | |||||||
|---|---|---|---|---|---|---|---|---|
|
FIN—family inventory of needs; needs are ranked in order of very/extreme importance I need/needed to… |
Importance | Fulfillment | Importance | Fulfillment | ||||
| M (SD) | “Very or extremely important” n/N (%) | Rank | “Not or only partly met”a n/N (%) | M (SD) | “Very or extremely important” n/N (%) | Rank | “Not or only partly met”a n/N (%) | |
| …be informed of changes in the patient’s condition | 4.7 (0.5) | 228/229 (99.6) | 1 | 15/206 (7.3) | 4.6 (0.5) | 157/158 (99.4) | 1 | 51/154 (33.1) |
| …feel that the professionals care about the patient | 4.5 (0.8) | 226/230 (98.3) | 2 | 3/215 (1.4) | 4.8 (0.5) | 158/159 (99.4) | 1 | 14/155 (9.0) |
| ...be assured that the best possible care is given to the patient | 4.7 (0.6) | 225/229 (98.3) | 2 | 68/209 (32.5) | 4.7 (0.6) | 150/156 (96.2) | 3 | 36/150 (24.0) |
| …have my questions answered honestly | 4.5 (0.6) | 221/229 (96.5) | 3 | 89/216 (41.2) | 4.5 (0.6) | 154/159 (96.9) | 2 | 64/156 (41.0) |
| …know exactly what is being done to the patient | 4.5 (0.6) | 218/229 (95.2) | 4 | 73/210 (34.8) | 4.5 (0.6) | 152/158 (96.2) | 3 | 51/156 (32.7) |
| ...have information given in terms that are understandable | 4.6 (0.7) | 217/230 (94.3) | 5 | 54/206 (26.2) | 4.5 (0.7) | 150/158 (94.9) | 4 | 34/152 (22.4) |
| …know why things are done for the patient | 4.5 (0.7) | 212/226 (93.8) | 6 | 81/200 (40.5) | 4.4 (0.7) | 140/153 (91.5) | 6 | 51/147 (34.7) |
| ...know the probable outcome of the patient’s illness | 4.5 (0.8) | 208/225 (92.4) | 7 | 110/200 (55.0) | 4.4 (0.8) | 141/154 (91.6) | 5 | 64/145 (44.1) |
| ...know what symptoms the treatment or disease can cause | 4.4 (0.7) | 206/224 (92.0) | 8 | 35/199 (17.6) | 4.4 (0.8) | 142/154 (92.2) | 8 | 73/148 (49.3) |
| …be told about changes in treatment plans while they are being made | 4.4 (0.7) | 205/225 (91.1) | 9 | 82/199 (41.2) | 4.4 (0.7) | 143/154 (92.9) | 7 | 57/149 (38.4) |
| …know specific facts concerning the patient’s prognosis | 4.4 (0.9) | 200/225 (88.9) | 10 | 104/206 (50.5) | 4.4 (0.8) | 143/158 (90.5) | 9 | 71/152 (46.7) |
| …have information about what to do for the patient at home | 4.4 (1.1) | 184/209 (88.0) | 11 | 89/166 (53.6) | 4.1 (1.3) | 108/132 (81.8) | 12 | 43/109 (39.4) |
| …know when to expect symptoms to occur | 4.3 (0.9) | 196/225 (87.1) | 12 | 122/194 (62.9) | 4.1 (1.0) | 123/153 (80.4) | 13 | 78/141 (55.3) |
| …know what treatment the patient is receiving | 4.4 (0.8) | 197/228 (86.4) | 13 | 69/207 (33.3) | 4.3 (0.8) | 131/157 (83.4) | 10 | 48/152 (31.6) |
| …feel there is hope | 4.4 (1.1) | 167/207 (80.7) | 14 | 126/173 (72.8) | 4.0 (1.3) | 104/138 (75.4) | 14 | 82/116 (70.7) |
| …feel accepted by the health professionals | 4.1 (1.0) | 173/226 (76.5) | 15 | 27/196 (13.8) | 4.2 (0.8) | 128/154 (83.1) | 11 | 23/147 (15.6) |
| …be told about people who could help with my problems | 3.8 (1.1) | 152/221 (68.8) | 16 | 102/187 (54.5) | 3.6 (1.1) | 93/149 (62.4) | 17 | 56/137 (40.9) |
| …help with the patient’s care | 3.8 (1.2) | 144/224 (64.3) | 17 | 45/176 (25.6) | 3.8 (1.3) | 104/153 (68.0) | 15 | 17/129 (13.2) |
| …know the names of the health professionals involved in the patient’s care | 3.7 (1.0) | 138/229 (60.3) | 18 | 88/197 (44.7) | 3.8 (1.0) | 102/154 (66.2) | 16 | 30/144 (20.8) |
| …have someone be concerned with my health | 2.6 (1.3) | 59/221 (26.7) | 19 | 85/147 (57.8) | 2.8 (1.3) | 47/151 (31.1) | 18 | 59/112 (52.7) |
| Additional needs to FIN (study-specific) | ||||||||
| …be prepared for death and bereavement | 3.6 (1.3) | 128/215 (59.5) | n.a. | 118/168 (70.2) | 3.5 (1.4) | 84/148 (56.8) | n.a. | 73/127 (57.5) |
| …have more information about alternative/complementary therapy | 3.1 (1.5) | 104/215 (48.4) | n.a. | 117/141 (83.0) | 3.0 (1.5) | 59/140 (42.1) | n.a. | 78/101 (77.2) |
| …get counseling with focus on social aspects/further patient care | 4.3 (1.0) | 185/218 (84.9) | n.a. | 120/181 (66.3) | 3.6 (1.4) | 94/144 (65.3) | n.a. | 58/119 (48.7) |
| …get psychological care | 2.8 (1.4) | 78/217 (35.9) | n.a. | 88/123 (71.5) | 3.0 (1.5) | 61/146 (41.8) | n.a. | 60/104 (57.7) |
| …get counseling with focus on children/family | 2.4 (1.5) | 64/216 (29.6) | n.a. | 71/97 (73.2) | 2.5 (1.5) | 46/138 (33.3) | n.a. | 42/76 (55.3) |
| …get spiritual/pastoral care | 2.2 (1.3) | 43/221 (19.5) | n.a. | 73/99 (73.7) | 2.2 (1.4) | 38/144 (26.4) | n.a. | 39/69 (56.5) |
| …get music- or art-therapy | 1.6 (1.0) | 18/222 (8.1) | n.a. | 42/59 (71.2) | 1.8 (1.2) | 19/141 (13.5) | n.a. | 32/50 (64.0) |
SIPC, specialist inpatient palliative care; FIN, Family Inventory of Needs: ; n.a., not applicable
a Only calculated if the need was reported to be at least „somewhat important “at the respective point of time