Background
Methods
Study design and setting
Study participants
Data collection
Caregiver burden of care
Independent variables
Mapping the independent variables
Characteristics of the caregiver
Characteristics of the cognitively impaired older person
Characteristics of the relationship between the caregiver and the cognitively impaired older person
The caregiver’s perception of available social support resources
Data analysis
Results
Caregiver burden of care
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) |
Independent variables
Characteristics of the informal caregiver
Characteristics of the cognitively impaired older person
Characteristics of the relationship between the caregiver and the cognitively impaired older person
The caregivers’ perception of available social support resources
Bivariate analysis
Independent variables | β (95% CI) | p-value | |
---|---|---|---|
Characteristics of the caregiver | |||
Age | 0.08 (−0.08, 0.25) | 0.31 | |
Sex | |||
Men | Reference | 0.07 | |
Women | 4.01 (−0.35, 8.38) | ||
Civil status | |||
Single | Reference | 0.15 | |
Married/common-law partner | −4.49 (− 10.85, 1.86) | ||
Separated/divorced | −7.45 (− 16.6, 1.69) | ||
Widower | −11.39 (− 21.89, −0.89) | ||
Employment status | |||
At home | Reference | 0.22 | |
Unemployed/ Job seeker | 10.74 (−3.26, 24.73) | ||
Retired | 3.66 (−3.9, 11.23) | ||
Employed | 0.65 (−6.96, 8.27) | ||
Education levela | |||
Secondary | Reference | 0.02 | |
Primary | 0.13 (−6.72, 6.97) | ||
College | −6.14 (−10.44, −1.83) | ||
University | −0.55 (−5.64, 4.54) | ||
Total family incomea | |||
Less than 15,000 | Reference | 0.15 | |
15,000–29,999 | 0 (−10.57, 10.58) | ||
30,000–44,999 | −3.53 (− 14.46, 7.4) | ||
45,000–59,999 | − 5.2 (− 15.68, 5.28) | ||
60,000 and more | −6.61 (− 16.76, 3.55) | ||
Preferred to not answer | −1.18 (− 12.21, 9.86) | ||
Caregiver’s preferred role in the decision-making process | |||
Passive role | Reference | 0.04 | |
Active role | −5.64 (−10.93, −0.34) | ||
Caregiver’s housing preference for the cognitively impaired older person | |||
Public nursing home | Reference | 0.05 | |
Stay at home | 7.27 (1.59, 12.95) | ||
Caregiver’s home | 9.62 (1.49, 17.74) | ||
Private nursing home | 7.94 (1.96, 13.92) | ||
Other | 9.73 (−0.06, 19.53) | ||
Decision regretb | |||
(< 5) | Reference | < 0.001 | |
(≥5 to ≤25) | 5.68 (1.36, 10.01) | ||
(≥30) | 10.97 (5.54, 16.41) | ||
Decisional conflictc | 0.13 (0.02, 0.24) | 0.02 | |
Decisional conflict subscales | |||
Informed subscale | 0.05 (−0.03, 0.13) | 0.26 | |
Values clarity subscale | 0.09 (−0.01, 0.20) | 0.09 | |
Support subscale | 0.04 (−0.04, 0.13) | 0.30 | |
Uncertainty subscale | 0.14 (0.06, 0.23) | 0.001 | |
Effective decision subscale | 0.12 (0.02, 0.22) | 0.02 | |
Time lapse (days) since the decision was madec | −0.02 (−0.04, 0) | 0.02 | |
The season when the housing decision had to be made | |||
Winter | Reference | 0.17 | |
Spring | −2.1 (−7.49, 3.28) | ||
Summer | −6.06 (−11.53, −0.58) | ||
Fall | −1.76 (−6.99, 3.48) | ||
The season when the caregivers were entered the study | |||
Winter | Reference | 0.35 | |
Spring | −3.75 (−8.86, 1.35) | ||
Summer | −4.65 (−11.52, 2.22) | ||
Fall | −5.03 (−12.04, 1.99) | ||
Characteristics of the cognitively impaired older person | |||
Cognitively impaired older person’s housing preference, according to the caregivera | |||
Public nursing home | Reference | 0.10 | |
Stay at home | 8.05 (1.08, 15.03) | ||
Caregiver’s home | 14.27 (4.34, 24.19) | ||
Private nursing home | 6.51 (−1.5, 14.51) | ||
Other | 8.21 (−6.79, 23.22) | ||
Does not apply | 11.15 (−0.08, 22.37) | ||
The actual health related housing decision made by the caregiver for the cognitively impaired older person | |||
Public nursing home | Reference | 0.36 | |
Stay at home | −1.33 (−7.58, 4.93) | ||
Caregiver’s home | 5.67 (−5.33, 16.67) | ||
Private nursing home | 2.92 (−2.12, 7.97) | ||
Other | 4.09 (−1.65, 9.82) | ||
Characteristics of the relationship between the caregiver and cognitively impaired older person | |||
Relationship type between caregiver and the cognitively impaired older persona | |||
Other family member | Reference | < 0.001 | |
Child | 10.21 (6.16, 14.25) | ||
Friend or other | 7.06 (0.08, 14.04) | ||
Spouse | 19.19 (13.72, 24.66) | ||
Caregiver’s perception of social support resources | |||
Caregiver’s assumed role in the decision-making process | |||
Passive role | Reference | 0.90 | |
Active role | −0.3 (−4.74, 4.15) | ||
Caregiver’s perception of the occurrence of a joint process in the decision-making (D-OPTION)d | 0.11 (0.01, 0.20) | 0.02 | |
Caregivers’ perceptions of healthcare professional’s SDM behaviors during the decision-making process (SDMQ-9)c | 0.02 (−0.05, 0.1) | 0.52 | |
Caregiver’s home care team has received SDM training | |||
Yes | Reference | 0.60 | |
No | −2.04 (−10.27, 6.19) | ||
Health and social services centre (HSSC) setting | |||
Urban/suburban | Reference | 0.11 | |
Rural | −6.69 (−15.08, 1.71) |
Multivariate analysis
Cluster-level (HSSCs random effect at intercept level: ICC = 13%) | ||
---|---|---|
Caregiver-level (Marginal R2 = 26%)a | ||
Independent variables | β (95% CI) | p-value |
Characteristics of the caregiver | ||
Sex | ||
Men | Reference | 0.04 |
Women | 4.15 (0.30, 7.99) | |
Caregiver’s housing preference for the cognitively impaired older person | ||
Public nursing home | Reference | 0.01 |
Stay at home | 3.5 (−1.59, 8.59) | |
Caregiver’s home | 9.18 (1.93, 16.44) | |
Private retirement residence | 7.04 (1.76, 12.32) | |
Other (e.g. mixed private-public nursing homes) | 11.22 (2.68, 19.77) | |
Time lapse (days) since the decision was made | −0.02 (−0.04, 0) | 0.03 |
Decision regretb | ||
(< 5) | Reference | < 0.001 |
(≥5 à ≤25) | 4.73 (0.76, 8.69) | |
(≥30) | 10.7 (5.07, 16.33) | |
Decisional conflictc | 0.15 (0.03, 0.28) | 0.02 |
Characteristics of the relationship between the caregiver and cognitively impaired older person | ||
Relationship link between caregiver and the cognitively impaired older person | ||
Other family member | Reference | < 0.001 |
Child | 7.51 (2.56, 12.46) | |
Friend or other | 6.78 (−5.09, 18.65) | |
Spouse | 17.69 (11.83, 23.54) | |
Caregiver’s social support resources perception | ||
The caregiver’s perception of the occurrence of a joint process in the decision-making (D-OPTION)d | 0.26 (0.17, 0.36) | < 0.001 |