Characteristics of Research Participants
Questionnaires were sent to 113 family members and 113 nurses. Ninety-two family members (81.4%) and 90 nurses (79.7%) returned responses to researchers. The deceased residents with FAST stages ranging from one to three (n = 3) and those with incomplete questionnaires (n = 20) were excluded. Finally, we analyzed the responses with no missing values from 85 family members (75.2%) and 62 nurses (54.9%). The basic attributes of participants are shown in Table 1.
Table 1. Basic attributes of participants
Participant
|
Item
|
n
|
%
|
Mean
|
SD
|
Deceased Resident
|
Age at death
|
|
85
|
|
91.4
|
6.60
|
|
|
Gender
|
Female
|
62
|
72.9
|
|
|
|
|
|
Male
|
23
|
27.1
|
|
|
|
|
FAST†
|
Stage 4
|
7
|
6.2
|
|
|
|
|
|
Stage 5
|
12
|
14.1
|
|
|
|
|
|
Stage 6
|
23
|
27.1
|
|
|
|
|
|
Stage 7
|
43
|
50.6
|
|
|
|
|
Cause of death
|
Senility
|
64
|
79.0
|
|
|
|
|
|
Others
|
21
|
21.0
|
|
|
Family‡
|
Age
|
|
85
|
|
65.0
|
8.78
|
|
|
Gender
|
Female
|
48
|
56.7
|
|
|
|
|
|
Male
|
37
|
43.5
|
|
|
|
|
Relationships with residents
|
Spouse
|
4
|
4.7
|
|
|
|
|
|
Sibling
|
1
|
1.2
|
|
|
|
|
|
Child
|
67
|
78.8
|
|
|
|
|
|
Child of spouse
|
8
|
9.4
|
|
|
|
|
|
Grandchild
|
1
|
1.2
|
|
|
|
|
|
Others
|
4
|
4.7
|
|
|
|
|
Years of nursing care
|
|
85
|
|
8.2
|
5.08
|
Nurse
|
Age
|
|
61
|
|
51.2
|
11.32
|
|
|
Gender
|
Female
|
58
|
93.5
|
|
|
|
|
|
Male
|
4
|
6.5
|
|
|
|
|
Years of nursing experience
|
|
62
|
|
25.7
|
12.39
|
|
|
Years of working at the facility
|
|
62
|
|
8.7
|
5.06
|
|
†FAST:Functional assessment staging of Alzheimerʼs disease
|
|
‡Family:Family members of the deceased residents
|
|
|
|
|
|
SWC-EOLD-J
Scores for each part of the SWC-EOLD-J scales and DRS-J are shown in Table 2. The Cronbach’s alpha of the SWC-EOLD-J rated by family members of the deceased residents was 0.77 (n = 83).
Results of the convergent validity testing are presented in Table 3. The SWC-EOLD-J score was significantly moderately correlated with the DRS-J score (γ = -0.504, p < 0.001).
Table 2
Score of SWC-EOLD-J scales and DRS-J
Scale
|
Respondent
|
Item
|
Range
|
Mean
|
SD
|
The SWC-EOLD-J†
|
Family‡
|
I felt fully involved in all decision-making.
|
1–4
|
3.30
|
0.60
|
(n = 83)
|
|
I probably would have made different decisions if I had more information*.
|
1–4
|
3.24
|
0.60
|
|
|
All measures were taken to keep my care recipient comfortable.
|
1–4
|
3.35
|
0.50
|
|
|
The healthcare team was sensitive to my needs and feelings.
|
1–4
|
3.41
|
0.61
|
|
|
I did not really understand my care recipient's condition*.
|
1–4
|
3.30
|
0.64
|
|
|
I always knew which doctor or nurse was in charge of my care recipient's care.
|
1–4
|
3.23
|
0.63
|
|
|
I feel that my care recipient got all necessary nursing assistance.
|
1–4
|
3.45
|
0.59
|
|
|
I felt that all medication issues were clearly explained to me.
|
1–4
|
3.11
|
0.52
|
|
|
My care recipient received all treatments or interventions that he or she could have benefited from.
|
1–4
|
3.28
|
0.57
|
|
|
I feel that my care recipient needed better medical care at the end of his or her life*.
|
1–4
|
2.88
|
0.97
|
|
|
Total
|
10–40
|
32.54
|
3.60
|
The DRS-J‖
|
Family‡
|
Total
|
0–100
|
14.53
|
13.77
|
(n = 83)
|
|
|
|
|
|
‡Family: Family members of the deceased residents,
|
|
|
|
†The SWC-EOLD-J: Japanese version of satisfaction with care at the end-of-life in dementia
|
|
|
|
‖The DRS-J: Japanese decision regret scale
|
|
|
|
|
*Reverse coded for calculation of the total score.
|
|
|
|
|
Table 3
Correlation between the EOLD-J scales and the DRS-J/short QOL-D
|
The SWC-EOLD-J†
|
The SM-EOLD-J‡
|
The CAD-EOLD-J§
|
Respondent
|
Family¶
|
Nurse
|
Nurse
|
n
|
83
|
55
|
55
|
|
γ
|
p
|
γ
|
p
|
γ
|
p
|
DRS-J‖
|
-0.504*
|
<0.001
|
|
|
|
|
short QOL-D#
Positive dimension
|
|
|
-0.238
|
0.080
|
-0.187
|
0.177
|
short QOL-D# Negative dimension
|
|
|
0.587*
|
<0.001
|
0.509*
|
<0.001
|
short QOL-D# Total
|
|
|
0.089
|
0.519
|
0.101
|
0.466
|
*ཐ༜0.001. Spearman rank correlation coefficient.
|
|
|
|
|
¶Family: Family members of the deceased residents
|
|
|
|
|
†The SWC-EOLD-J: Japanese version of satisfaction with care at the end-of-life in dementia
|
|
‡The SM-EOLD-J: Japanese version of symptom management at the end-of-life in dementia
|
|
§The CAD-EOLD-J: Japanese version of comfort assessment in dying with dementia
|
|
‖The DRS-J: Japanese decision regret scale
|
|
|
|
|
#The short QOL-D: short version of the quality of life questionnaire for dementia
|
|
|
SM-EOLD-J
Scores for each part of the SM-EOLD-J scales and short QOL-D are shown in Table 4. The Cronbach’s alpha for the SM-EOLD-J among nurses was 0.80 (n = 62). The Cronbach’s alpha for the SM-EOLD-J subscales of physical and psychological symptoms was 0.58 and 0.82, respectively.
Table 4
Score of SM-EOLD-J, CAD-EOLD-J scales and short QOL-D
Scale
|
Respondent
|
Item
|
Range
|
Mean
|
SD
|
The SM-EOLD-J§
|
Nurse
|
Pain
|
0–5
|
3.39
|
2.00
|
(n = 62)
|
|
Shortness of breath
|
0–5
|
3.32
|
2.01
|
|
|
Skin breakdown
|
0–5
|
3.81
|
1.85
|
|
|
Calm*
|
0–5
|
4.05
|
1.69
|
|
|
Depression
|
0–5
|
4.15
|
1.54
|
|
|
Fear
|
0–5
|
4.47
|
1.28
|
|
|
Anxiety
|
0–5
|
3.81
|
1.81
|
|
|
Agitation
|
0–5
|
4.11
|
1.69
|
|
|
Resistiveness to care
|
0–5
|
3.97
|
1.74
|
|
|
Total
|
0–45
|
35.06
|
9.80
|
The CAD-EOLD-J¶
|
Nurse
|
Discomfort
|
1–3
|
2.44
|
0.62
|
(n = 62)
|
|
Pain
|
1–3
|
2.44
|
0.64
|
|
|
Restlessness
|
1–3
|
2.56
|
0.67
|
|
|
Shortness of breath
|
1–3
|
2.39
|
0.69
|
|
|
Choking
|
1–3
|
2.66
|
0.54
|
|
|
Gurgling
|
1–3
|
2.31
|
0.69
|
|
|
Difficulty swallowing
|
1–3
|
1.61
|
0.61
|
|
|
Fear
|
1–3
|
2.69
|
0.56
|
|
|
Anxiety
|
1–3
|
2.58
|
0.59
|
|
|
Crying
|
1–3
|
2.74
|
0.54
|
|
|
Moaning
|
1–3
|
2.68
|
0.57
|
|
|
Serenity*
|
1–3
|
2.39
|
0.52
|
|
|
Peace*
|
1–3
|
2.34
|
0.54
|
|
|
Calm*
|
1–3
|
2.32
|
0.57
|
|
|
Total
|
14–42
|
34.15
|
5.21
|
The short QOL-D#
|
Nurse
|
Total
|
4–24
|
22.38
|
4.18
|
(n = 55)
|
Negative dimension
|
3–12
|
10.72
|
2.01
|
|
Positive dimension
|
7–36
|
11.68
|
4.02
|
§The SM-EOLD-J: Japanese version of symptom management at the end-of-life in dementia
|
|
|
¶The CAD-EOLD-J: Japanese version of comfort assessment in dying with dementia
|
|
|
|
#The short QOL-D: short version of the quality of life questionnaire for dementia
|
|
|
|
*Reverse coded for calculation of the total score.
|
|
|
|
The results of convergent validity testing are presented in Table 3. The SM-EOLD-J score was significantly moderately correlated with the negative dimensions of the short QOL-D in nurses (γ = 0.587, p < 0.001). No correlation was found between the total scores of the SM-EOLD-J and the positive dimensions of the short QOL-D.
We conducted a confirmatory factor analysis to confirm the nine items of the SM-EOLD-J as similar to the two-factor structure of the original SM-EOLD. The results were goodness of fit index (GFI) = .833, adjusted GFI (AGFI) = 0.711, comparative fit index (CFI) = 0.856, root mean square error of approximation (RMSEA) = 0.130.
The results of the exploratory factor analysis are shown in Table 5. The SM-EOLD-J was found to have two-factor structures. Pain, shortness of breath, skin breakdown, and depression and anxiety were included in one factor, while fear, calm, agitation, and resistiveness to care were included in the other factor. A confirmatory factor analysis was conducted with the two-factor structure based on the results of the exploratory factor analysis conducted in this study (GFI = .854, AGFI = .756, CFI = .885, RMSEA = .114).
Table 5. Rotated factor structure of the SM-EOLD-J and the CAD-EOLD-J
|
|
|
|
|
|
|
|
Factor loading
|
|
Subscales
|
Item
|
Factor 1
|
Factor 2
|
Factor 3
|
Factor 4
|
§SM-EOLD-J
|
Physical
|
Pain
|
0.04
|
0.69
|
|
|
Shortness of breath
|
0.05
|
0.50
|
|
|
Skin breakdown
|
0.22
|
0.41
|
|
|
Psychological
|
Depression
|
0.26
|
0.43
|
|
|
Anxiety
|
0.50
|
0.69
|
|
|
Fear
|
0.54
|
0.38
|
|
|
Calm
|
0.55
|
-0.07
|
|
|
Agitation
|
0.78
|
0.38
|
|
|
Resistiveness to care
|
0.74
|
0.33
|
|
|
|
|
|
Contribution ratio
|
2.11
|
1.94
|
|
|
|
|
|
Cumulative contribution ratio
|
23.49
|
45.06
|
|
|
¶CAD-EOLD-J
|
Physical distress
|
|
Discomfort
|
0.73
|
0.09
|
0.27
|
-0.27
|
|
Pain
|
0.59
|
0.18
|
0.10
|
-0.11
|
|
Restlessness
|
0.67
|
0.27
|
0.13
|
0.00
|
|
Shortness of breath
|
0.47
|
0.14
|
0.45
|
0.10
|
|
|
Choking
|
0.30
|
0.12
|
0.67
|
-0.21
|
|
Dying symptoms
|
Gurgling
|
0.19
|
-0.13
|
0.73
|
0.43
|
|
|
Difficulty swallowing
|
-0.05
|
-0.03
|
0.03
|
0.64
|
Emotional distress
|
Fear
|
0.70
|
0.16
|
0.43
|
-0.15
|
Anxiety
|
0.79
|
0.24
|
0.18
|
0.01
|
Crying
|
0.77
|
0.22
|
0.09
|
0.03
|
Moaning
|
0.69
|
0.18
|
0.24
|
0.18
|
Well-being
|
Serenity
|
0.25
|
0.83
|
0.01
|
0.06
|
Peace
|
0.22
|
0.91
|
-0.02
|
-0.06
|
Calm
|
0.28
|
0.88
|
0.16
|
-0.12
|
|
|
|
Contribution ratio
|
4.05
|
2.61
|
1.59
|
0.82
|
|
|
|
Cumulative contribution ratio
|
28.96
|
47.56
|
58.91
|
64.73
|
§The SM-EOLD-J: Japanese version of symptom management at the end-of-life in dementia
|
|
|
|
|
¶The CAD-EOLD-J: Japanese version of comfort assessment in dying with dementia Loadings used to identify factors are bold texted.
|
CAD-EOLD-J
Scores for each part of the CAD-EOLD-J scales are shown in Table 4. The Cronbach’s alpha of the CAD-EOLD-J rated by nurses was 0.88 (n = 62). The Cronbach’s alpha for the CAD-EOLD-J subscales of physical distress, dying symptoms, emotional distress, and well-being were 0.76, 0.58, 0.87, and 0.93, respectively.
The results of convergent validity testing are presented in Table 3. The CAD-EOLD-J score was significantly moderately correlated with the negative dimensions of the short QOL-D score in nurses (γ = 0.509, p < 0.001). However, no correlation was indicated between the CAD-EOLD-J scores and the positive dimensions of the short QOL-D scores in nurses.
We conducted a confirmatory factor analysis to confirm the fourteen items of the CAD-EOLD-J as similar to the two-factor structure of the original CAD-EOLD. The results were GFI = .812, AGFI = 0.718, CFI = 0.929, RMSEA = 0.088.
The results of the exploratory factor analysis are shown in Table 5. The CAD-EOLD-J was found to have four-factor structures, different to the factors of the original scale. The subscales physical distress and emotional distress were included in one factor, and difficulty swallowing was an independent factor. Shortness of breath, choking, and gurgling were included in one factor, and the subscales for well-being consisted of the same items as the original EOLD scales. A confirmatory factor analysis was conducted with the four-factor structure based on the results of the exploratory factor analysis. The results were GFI = .839, AGFI = 0.748, CFI = 0.943, RMSEA = 0.086.