Variables | Caregivers (n = 296) |
---|---|
Variable of interest | |
Caregiver’s burden of carea, mean (SD) | 29.8 (17.5) |
Score range (minimum-maximum) | 0–81 |
Independent variables | |
Caregiver’s characteristics | |
Age, mean (SD) | 62.6 (11.7) |
Score range (maximum-minimum) | 33.1–97.9 |
Sex, n (%) | |
Female | 221 (74.7) |
Male | 75 (25.3) |
Civil status, n (%) | |
Married/Common-law partner | 230 (77.7) |
Single | 30 (10.1) |
Separated/Divorced | 22 (7.4) |
Widower | 14 (4.7) |
Employment status, n (%) | |
Retired | 149 (50.3) |
Employed | 118 (39.9) |
At home | 22 (7.3) |
Unemployed/ Job seeker | 7 (2.4) |
Education level, n (%) | |
Primary | 30 (10.1) |
Secondary | 135 (45.6) |
College | 67 (22.6) |
University | 64 (21.6) |
Total family income, n (%) | |
< 15,000 | 17 (5.7) |
15,000–29,999 | 52 (17.6) |
30,000–44,999 | 43 (14.5) |
45,000–59,999 | 53 (17.9) |
60,000 and more | 77 (26.0) |
Prefered to not answer | 54 (18.2) |
Caregiver preferred role in the decision-making process, n (%) | |
A) I want to make the decision alone | 30 (10.1) |
B) I want to make the decision after considering the healthcare professionals’ opinions | 105 (35.5) |
C) I want the healthcare professionals and I to share the responsibility for the decision-making | 113 (38.2) |
D) I want the healthcare professionals to make the decision after considering my opinion | 44 (14.9) |
E) I want that the healthcare professionals to make the decision alone | 3 (1.0) |
Missing | 1 (0.3) |
Caregiver’s housing preference for the cognitively impaired older person, n (%) | |
Public nursing home | 45 (15.2) |
Stay at home | 128 (43.2) |
Caregiver’s home | 24 (8.1) |
Private nursing home | 84 (28.4) |
Other | 15 (5.1) |
Decisional regretb, n (%) | |
(< 5) | 171 (57.8) |
(≥5 à ≤25) | 80 (27.0) |
(≥30) | 45 (15.2) |
Decisional conflictc, mean (SD) | 23.3 (17.6) |
Decisional conflict subscales *** | |
Informed subscale, mean (SD) | 27.6 (24.7) |
Values clarity subscale, mean (SD) | 19.8 (18.3) |
Support subscale, mean (SD) | 26.0 (22.6) |
Uncertainty subscale, mean (SD) | 27.6 (22.4) |
Effective decision subscale, mean (SD) | 17.5 (19.2) |
Time lapse (days) since the decision was made, mean (SD) | 142.6 (104.9) |
Season when the questionnaire was completed by caregivers, n (%) | |
Winter | 76 (25.7) |
Spring | 144 (48.6) |
Summer | 44 (14.9) |
Fall | 32 (10.8) |
Season when the decision had to be made, n (%) | |
Winter | 78 (26.4) |
Spring | 72 (24.3) |
Summer | 67 (22.6) |
Fall | 79 (26.7) |
Characteristics of cognitively impaired older person | |
Cognitively impaired older person’s housing preference, according to the caregiver, n (%) | |
Public nursing home | 17 (5.7) |
Stay at home | 184 (62.2) |
Caregiver’s home | 20 (6.8) |
Private nursing home | 46 (15.5) |
Other | 5 (1.7) |
Does not apply | 23 (7.8) |
Missing | 1 (0.3) |
Actual housing decision made, n (%) | |
Public nursing home | 98 (33.1) |
Stay at home | 43 (14.5) |
Caregiver’s home | 10 (3.4) |
Private nursing home | 91 (30.7) |
Other | 54 (18.2) |
Characteristics of the relationship between the caregiver and the cognitively impaired older person | |
Relationship type between caregiver and the cognitively impaired older person, n (%) | |
Child | 181 (61.2) |
Spouse | 66 (22.3) |
Other member of family | 42 (14.2) |
Friend or other | 7 (2.4) |
Caregiver’s social support and resources perception | |
Caregiver’s perception of his/her assumed role in the decision making process, n (%) | |
A) I made the decision alone | 47 (15.9) |
B) I made the decision after considering the healthcare professionals’ opinions | 88 (29.8) |
C) The healthcare professionals and I share the responsibility for the decision-making | 83 (27.8) |
D) The healthcare professionals made the decision after considering my opinion | 57 (19.3) |
E) The healthcare professionals made the decision alone | 21 (7.1) |
Caregiver’s perception of the occurrence of a joint decision-making process (D-OPTION)d, mean (SD) | 63.8 (20.6) |
Caregivers’ perceptions of healthcare professional’s specific SDM behaviors during the decision-making process (SDMQ-9)e, mean (SD) | 64.9 (25.3) |
Caregiver’s home care team has received SDM training n (%) | 138 (46.6) |