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Table 1 Caregiver burden of care and independent variables mapped onto an adaptation of Pallett’s conceptual framework

From: Time to move? Factors associated with burden of care among informal caregivers of cognitively impaired older people facing housing decisions: secondary analysis of a cluster randomized trial

VariablesCaregivers (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 (%)
 Female221 (74.7)
 Male75 (25.3)
Civil status, n (%)
 Married/Common-law partner230 (77.7)
 Single30 (10.1)
 Separated/Divorced22 (7.4)
 Widower14 (4.7)
Employment status, n (%)
 Retired149 (50.3)
 Employed118 (39.9)
 At home22 (7.3)
 Unemployed/ Job seeker7 (2.4)
Education level, n (%)
 Primary30 (10.1)
 Secondary135 (45.6)
 College67 (22.6)
 University64 (21.6)
Total family income, n (%)
 < 15,00017 (5.7)
 15,000–29,99952 (17.6)
 30,000–44,99943 (14.5)
 45,000–59,99953 (17.9)
 60,000 and more77 (26.0)
 Prefered to not answer54 (18.2)
Caregiver preferred role in the decision-making process, n (%)
 A) I want to make the decision alone30 (10.1)
 B) I want to make the decision after considering the healthcare professionals’ opinions105 (35.5)
 C) I want the healthcare professionals and I to share the responsibility for the decision-making113 (38.2)
 D) I want the healthcare professionals to make the decision after considering my opinion44 (14.9)
 E) I want that the healthcare professionals to make the decision alone3 (1.0)
 Missing1 (0.3)
Caregiver’s housing preference for the cognitively impaired older person, n (%)
 Public nursing home45 (15.2)
 Stay at home128 (43.2)
 Caregiver’s home24 (8.1)
 Private nursing home84 (28.4)
 Other15 (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 (%)
 Winter76 (25.7)
 Spring144 (48.6)
 Summer44 (14.9)
 Fall32 (10.8)
Season when the decision had to be made, n (%)
 Winter78 (26.4)
 Spring72 (24.3)
 Summer67 (22.6)
 Fall79 (26.7)
Characteristics of cognitively impaired older person
Cognitively impaired older person’s housing preference, according to the caregiver, n (%)
 Public nursing home17 (5.7)
 Stay at home184 (62.2)
 Caregiver’s home20 (6.8)
 Private nursing home46 (15.5)
 Other5 (1.7)
 Does not apply23 (7.8)
 Missing1 (0.3)
Actual housing decision made, n (%)
 Public nursing home98 (33.1)
 Stay at home43 (14.5)
 Caregiver’s home10 (3.4)
 Private nursing home91 (30.7)
 Other54 (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 (%)
 Child181 (61.2)
 Spouse66 (22.3)
 Other member of family42 (14.2)
 Friend or other7 (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 alone47 (15.9)
 B) I made the decision after considering the healthcare professionals’ opinions88 (29.8)
 C) The healthcare professionals and I share the responsibility for the decision-making83 (27.8)
 D) The healthcare professionals made the decision after considering my opinion57 (19.3)
 E) The healthcare professionals made the decision alone21 (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)
  1. SD Standard deviation, D-OPTION Dyadic Observing Patient Involvement in Decision Making instrument, SDMQ-9 9-item Shared Decision Making Questionnaire, IP-SDM interprofessional shared decision making,
  2. aZBI scale, score from 0 to 88.
  3. bDRS score < 5 = no regret, ≥5 to ≤25 = mild regret and ≥ 30 = moderate to strong regret [31];
  4. cscore from 0 (no decisional conflict) to 100 (high decisional conflict)
  5. dscore from 0 (decision-making not joint) to 100 (decision-making joint);
  6. efor one point increase, score from 0 (no SDM behaviors) to 100 (all SDM behaviors)