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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

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)

  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)