Background
Methods
Study design
Setting and sample
Development of the QUALIDEM user guide
Evaluation of the IRR of the QUALIDEM
Procedures
Development of the QUALIDEM user guide
Evaluation of the IRR of the QUALIDEM
Measurements
Development of the QUALIDEM user guide
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▪ What does ‘is cheerful’ mean to you (comprehension/interpretation probe)?
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▪ Can you repeat the question in your own words (paraphrasing probe)?
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▪ How sure are you that the person with dementia was cheerful in the last week (confidence judgment probe)?
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▪ How do you remember the person with dementia as cheerful in the last week (recall probe)?
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▪ Why do you think that the person with dementia was cheerful (specific probe)?
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▪ Was it easy or hard to answer?
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▪ What did you think when answering the question (general probe)?
Evaluation of the IRR of the QUALIDEM
Data analysis
Development of the QUALIDEM user guide
Evaluation of the IRR of the QUALIDEM
Results
Development of the QUALIDEM user guide
Proxy raters | Cognitive interviews (n = 16) | IRR evaluation (n = 40) |
Age in years, mean (±SD) | 45.0 (±11.2) | 41.7 (±12.0) |
Female, n (%) | 11 (69) | 34 (85) |
Registered nurses, n (%) | 10 (63) | 24 (60) |
Work experience in years, mean (±SD) | 14.3 (±7.5) | 11.8 (±7.3) |
Hours worked per week, mean (±SD) | 35.0 (±4.7) | 32.7 (±5.5) |
Caregivers with migrant backgrounds, n (%) | 4 (25) | --- |
People with dementia | Mild to severe dementia (n = 55) | Very severe dementia (n = 36) |
Age in years, mean (±SD) | 84.7 (±8.3) | 84.1 (±9.4) |
Female, n (%) | 43 (78) | 33 (92) |
PSMS, mean (± SD) | 19.8 (±4.6) | 24.9 (±2.3) |
Care dependency levelsa, n (%) | ||
None | 0 (0) | 0 (0) |
1 | 7 (13) | 0 (0) |
2 | 29 (53) | 5 (14) |
3 | 19 (34) | 31 (86) |
FAST score, n (%) | ||
2 | 1 (2) | |
3 | 1 (2) | |
4 | 3 (5) | |
5 | 0 (0) | |
6 | 50 (91) | |
Length of stay in the nursing home in months, mean (±SD) | 26.6 (±21.6) | 40.1 (±23.2) |
Missing values, QUALIDEMb | 0/8800 | 7/3024 |
Seven response options | Original four response options [14] | ||
---|---|---|---|
Response options | Definition | Response options | Definition |
Never | Never | Never | Never |
Very seldom | No more than once a week | Seldom | No more than once a week |
Seldom | Two to three times a week | Sometimes | A few times per week |
Sometimes | Four to five times a week | ||
Often | Almost daily | Often | Almost daily |
Frequently | Daily | ||
Very frequently | Several times a day |
Evaluation of the IRR of the QUALIDEM
Item distribution and internal consistency
FAST 2 – 6 (n = 55) | FAST 7 (n = 36) | |||||||||||||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
Never | Very seldom | Seldom | Sometimes | Often | Frequently | Very frequently | Mean | SD | Alphac | Never | Very seldom | Seldom | Sometimes | Often | Frequently | Very frequently | Mean | SD | Alphac | |||
A.
|
Care relationship
|
0.9
|
0.8
| |||||||||||||||||||
4 | Rejects help from nursing assistantsa | 79 | 48 | 29 | 23 | 12 | 13 | 16 | 4.3 | 1.9 | ||||||||||||
7 | Is angrya | 31 | 46 | 61 | 36 | 14 | 12 | 20 | 3.7 | 1.7 | 59 | 39 | 9 | 13 | 12 | 4 | 8 | 4.5 | 1.8 | |||
14 | Has conflicts with nursing assistantsa | 93 | 65 | 21 | 16 | 5 | 9 | 11 | 4.7 | 1.7 | 78 | 19 | 12 | 12 | 10 | 4 | 9 | 4.7 | 1.9 | |||
17 | Accuses othersa | 90 | 43 | 29 | 23 | 14 | 17 | 4 | 4.5 | 1.7 | ||||||||||||
24 | Appreciates help that he or she receives | 5 | 4 | 18 | 35 | 31 | 55 | 72 | 4.4 | 1.5 | ||||||||||||
31 | Accepts help | 0 | 4 | 1 | 14 | 24 | 50 | 127 | 5.3b | 1.1 | 1 | 1 | 4 | 4 | 11 | 34 | 89 | 5.3b | 1.1 | |||
33 | Criticizes the daily routinea | 147 | 30 | 14 | 5 | 13 | 8 | 3 | 5.2b | 1.5 | ||||||||||||
B.
|
Positive Affect
|
0.9
|
0.8
| |||||||||||||||||||
1 | Is cheerful | 19 | 20 | 24 | 38 | 49 | 40 | 30 | 3.5 | 1.8 | ||||||||||||
5 | Radiates satisfaction | 4 | 10 | 18 | 21 | 65 | 63 | 39 | 4.2 | 1.5 | 10 | 10 | 13 | 5 | 32 | 49 | 25 | 4.0 | 1.8 | |||
8 | Is capable of enjoying things in daily life | 2 | 0 | 13 | 25 | 53 | 76 | 51 | 4.5 | 1.2 | 9 | 7 | 6 | 21 | 31 | 49 | 21 | 4.0 | 1.6 | |||
10 | Is in good mood | 10 | 19 | 19 | 40 | 55 | 51 | 26 | 3.7 | 1.6 | ||||||||||||
21 | Has a smile around the mouth | 9 | 17 | 28 | 31 | 38 | 46 | 51 | 3.9 | 1.8 | 12 | 9 | 24 | 17 | 20 | 27 | 35 | 3.7 | 1.9 | |||
40 | Mood can be influenced in positive sense | 8 | 13 | 15 | 22 | 44 | 71 | 47 | 4.2 | 1.6 | 10 | 15 | 9 | 8 | 14 | 43 | 45 | 4.2 | 2.0 | |||
C.
|
Negative Affect
|
0.7
|
0.4
| |||||||||||||||||||
6 | Makes an anxious impressiona | 66 | 57 | 35 | 33 | 20 | 8 | 1 | 4.4 | 1.5 | 24 | 15 | 17 | 29 | 21 | 17 | 21 | 3.0 | 2.0 | |||
11 | Is sada | 69 | 42 | 31 | 32 | 23 | 16 | 7 | 4.1 | 1.8 | ||||||||||||
23 | Criesa | 143 | 24 | 17 | 24 | 12 | 0 | 0 | 5.2b | 1.3 | 113 | 16 | 0 | 10 | 2 | 1 | 2 | 5.5b | 1.2 | |||
D.
|
Restless tense behavior
|
0.8
|
0.7
| |||||||||||||||||||
2 | Makes restless movementsa | 89 | 29 | 20 | 17 | 14 | 14 | 37 | 3.9 | 2.3 | 38 | 15 | 11 | 8 | 14 | 22 | 36 | 2.9 | 2.4 | |||
19 | Is restlessa | 74 | 52 | 19 | 18 | 9 | 16 | 32 | 4.0 | 2.2 | 28 | 23 | 21 | 3 | 12 | 17 | 40 | 2.9 | 2.4 | |||
22 | Has tense body languagea | 93 | 35 | 33 | 31 | 17 | 4 | 7 | 4.5 | 1.6 | 28 | 12 | 20 | 13 | 8 | 31 | 32 | 2.7 | 2.3 | |||
E.
|
Positive self-image
|
0.7
| ||||||||||||||||||||
27 | Indicates he or she would like more helpa | 165 | 29 | 10 | 9 | 5 | 2 | 0 | 5.5b | 1.0 | ||||||||||||
35 | Indicates not being able to do anythinga | 129 | 38 | 23 | 13 | 12 | 4 | 1 | 5.1b | 1.4 | ||||||||||||
37 | Indicates feeling worthlessa | 134 | 20 | 11 | 28 | 16 | 7 | 4 | 4.9b | 1.7 | ||||||||||||
F.
|
Social relations
|
0.8
|
0.4
| |||||||||||||||||||
3 | Has contact with other residents | 16 | 12 | 15 | 8 | 30 | 47 | 92 | 4.4 | 1.9 | 57 | 22 | 14 | 3 | 0 | 26 | 22 | 2.2 | 2.4 | |||
12 | Responds positively when approached | 1 | 2 | 7 | 26 | 30 | 61 | 93 | 4.9b | 1.3 | 4 | 3 | 5 | 11 | 13 | 45 | 63 | 4.9b | 1.5 | |||
18 | Takes care for other residents | 107 | 27 | 20 | 17 | 19 | 19 | 11 | 1.6 | 2.0 | ||||||||||||
25 | Cuts himself/herself off from environment | 99 | 31 | 29 | 27 | 10 | 13 | 11 | 4.5 | 1.8 | 116 | 10 | 2 | 2 | 4 | 4 | 6 | 5.4b | 1.6 | |||
29 | Is on friendly terms with one or more residents | 56 | 17 | 15 | 25 | 19 | 29 | 59 | 3.2 | 2.4 | ||||||||||||
34 | Feels at ease in the company of others | 13 | 27 | 14 | 12 | 41 | 64 | 49 | 4.0 | 1.9 | ||||||||||||
G.
|
Social isolation
|
0.5
|
0.1
| |||||||||||||||||||
16 | Is rejected by other residentsa | 124 | 45 | 5 | 21 | 4 | 11 | 10 | 4.9b | 1.8 | 104 | 19 | 7 | 5 | 4 | 2 | 3 | 5.4b | 1.3 | |||
20 | Openly rejects contact with othersa | 68 | 46 | 32 | 18 | 27 | 23 | 6 | 4.1 | 1.8 | 90 | 25 | 11 | 12 | 1 | 3 | 2 | 5.2b | 1.3 | |||
32 | Calls outb | 167 | 13 | 5 | 4 | 4 | 6 | 21 | 5.1b | 2.0 | 97 | 7 | 5 | 1 | 1 | 3 | 30 | 4.5 | 2.5 | |||
H.
|
Feeling at home
|
0.4
| ||||||||||||||||||||
13 | Indicates that he or she is boreda | 148 | 43 | 23 | 5 | 1 | 0 | 0 | 5.5b | 0.8 | ||||||||||||
28 | Indicates feeling locked upa | 181 | 16 | 13 | 5 | 5 | 0 | 0 | 5.7b | 0.9 | ||||||||||||
36 | Feels at home on the ward | 61 | 21 | 19 | 17 | 23 | 53 | 26 | 2.8 | 2.3 | ||||||||||||
39 | Wants to get off the warda | 172 | 20 | 9 | 6 | 7 | 2 | 4 | 5.5b | 1.3 | ||||||||||||
I.
|
Having something to do
|
0.3
| ||||||||||||||||||||
26 | Finds things to do without help from others | 77 | 13 | 11 | 21 | 16 | 38 | 44 | 2.8 | 2.4 | ||||||||||||
38 | Enjoys helping with chores on the ward | 118 | 43 | 18 | 17 | 9 | 13 | 2 | 1.1b | 1.6 | ||||||||||||
Remaining items to be used in future research
| ||||||||||||||||||||||
9 | Does not want to eata | 105 | 48 | 14 | 18 | 16 | 17 | 2 | 4.7 | 1.7 | 53 | 25 | 31 | 13 | 5 | 5 | 11 | 4.3 | 1.8 | |||
15 | Enjoys meals | 10 | 15 | 27 | 18 | 42 | 54 | 54 | 4.0 | 1.8 | 17 | 12 | 10 | 17 | 10 | 41 | 35 | 3.8 | 2.1 | |||
30 | Likes to lie down (in bed)a | 81 | 30 | 17 | 24 | 22 | 20 | 26 | 3.8 | 2.2 | 69 | 19 | 7 | 7 | 21 | 10 | 7 | 4.4 | 2.0 | |||
Frequencies of the response options in total, n | 3063 | 1114 | 782 | 823 | 870 | 1052 | 1096 | 1017 | 323 | 238 | 214 | 246 | 437 | 542 | ||||||||
Frequencies of the response options in total, % | 35 | 13 | 9 | 9 | 10 | 12 | 12 | 34 | 11 | 8 | 7 | 8 | 14 | 18 |
Inter-rater reliability
Inter-rater reliability: Subscales and items | FAST 2 – 6 (n = 55) | FAST 7 (n = 36) | ||||||||
---|---|---|---|---|---|---|---|---|---|---|
poa | ICCb | kc | 95 % CI | poa | ICCb | kc | 95 % CI | |||
A.
|
Care relationship
|
0.92 (0.91)
e
|
0.89 – 0.95 (0.87 – 0.94)
e
|
0.79 (0.78)
e
|
0.68 – 0.87 (0.67 – 0.87)
e
| |||||
4 | Rejects help from nursing assistants | 0.61 | 0.50 | 0.40 – 0.59 | ||||||
7 | Is angry | 0.60 | 0.52 | 0.42 – 0.60 | 0.63 | 0.49 | 0.35 – 0.62 | |||
14 | Has conflicts with nursing assistants | 0.56 | 0.38 | 0.29 – 0.47 | 0.66 | 0.49 | 0.34 – 0.63 | |||
17 | Accuses others | 0.63 | 0.52 | 0.42 – 0.61 | ||||||
24 | Appreciates help that he or she receives | 0.55 | 0.42 | 0.31 – 0.52 | ||||||
31 | Accepts help | 0.62d | 0.38d | 0.23 – 0.51 | 0.67d | 0.41d | 0.27 – 0.53 | |||
33 | Criticizes the daily routine | 0.67d | 0.38d | 0.20 – 0.53 | ||||||
B.
|
Positive affect
|
0.91
|
0.87 – 0.94
|
0.82
|
0.73 – 0.90
| |||||
1 | Is cheerful | 0.49 | 0.39 | 0.31 – 0.46 | ||||||
5 | Radiates satisfaction | 0.52 | 0.38 | 0.29 – 0.47 | 0.44 | 0.29 | 0.19 – 0.38 | |||
8 | Is capable of enjoying things in daily life | 0.55 | 0.40 | 0.29 – 0.50 | 0.57 | 0.46 | 0.32 – 0.59 | |||
10 | Is in good mood | 0.54 | 0.44 | 0.36 – 0.52 | ||||||
21 | Has a smile around the mouth | 0.51 | 0.41 | 0.33 – 0.48 | 0.61 | 0.53 | 0.39 – 0.66 | |||
40 | Mood can be influenced in positive sense | 0.48 | 0.34 | 0.24 – 0.43 | 0.46 | 0.32 | 0.19 – 0.43 | |||
C.
|
Negative affect
|
0.91 (0.89)
e
|
0.87 – 0.94 (0.84 – 0.93)
e
|
0.64
|
0.49 – 0.77
| |||||
6 | Makes an anxious impression | 0.61 | 0.50 | 0.39 – 0.59 | 0.56 | 0.48 | 0.37 – 0.58 | |||
11 | Is sad | 0.57 | 0.47 | 0.37 – 0.55 | ||||||
23 | Cries | 0.77d | 0.58d | 0.46 – 0.69 | 0.83d | 0.54d | 0.28 – 0.75 | |||
D.
|
Restless tense behavior
|
0.95
|
0.92 – 0.97
|
0.91
|
0.85 – 0.95
| |||||
2 | Makes restless movements | 0.64 | 0.53 | 0.43 – 0.62 | 0.65 | 0.58 | 0.47 – 0.67 | |||
19 | Is restless | 0.55 | 0.43 | 0.34 – 0.52 | 0.62 | 0.54 | 0.41 – 0.65 | |||
22 | Has tense body language | 0.68 | 0.58 | 0.45 – 0.68 | 0.53 | 0.44 | 0.31 – 0.55 | |||
E.
|
Positive self-image
|
0.92
|
0.88 – 0.95
| |||||||
27 | Indicates he or she would like more help | 0.77d | 0.45d | 0.27 – 0.59 | ||||||
35 | Indicates not being able to do anything | 0.66d | 0.45d | 0.32 – 0.57 | ||||||
37 | Indicates feeling worthless | 0.74d | 0.57d | 0.48 – 0.65 | ||||||
F.
|
Social relations
|
0.93 (0.93)
e
|
0.89 – 0.95 (0.90 – 0.95)
e
|
0.83
|
0.74 – 0.90
| |||||
3 | Has contact with other residents | 0.60 | 0.46 | 0.34 – 0.57 | 0.59 | 0.47 | 0.35 – 0.56 | |||
12 | Responds positively when approached | 0.55d | 0.37d | 0.26 – 0.46 | 0.59d | 0.41d | 0.25 – 0.56 | |||
18 | Takes care for other residents | 0.69 | 0.57 | 0.47 – 0.66 | ||||||
25 | Cuts himself/herself off from environment | 0.64 | 0.51 | 0.41 – 0.60 | 0.79d | 0.40d | 0.14 – 0.59 | |||
29 | Is on friendly terms with one or more residents | 0.68 | 0.60 | 0.51 – 0.69 | ||||||
34 | Feels at ease in the company of others | 0.44 | 0.31 | 0.22 – 0.39 | ||||||
G.
|
Social isolation
|
0.95
|
0.92 – 0.97
|
0.84
|
0.75 – 0.90
| |||||
16 | Is rejected by other residents | 0.68d | 0.49d | 0.36 – 0.60 | 0.75d | 0.44d | 0.20 – 0.63 | |||
20 | Openly rejects contact with others | 0.55 | 0.45 | 0.36 – 0.52 | 0.64d | 0.37d | 0.18 – 0.52 | |||
32 | Calls out | 0.85d | 0.62d | 0.44 – 0.76 | 0.82 | 0.65 | 0.46 – 0.80 | |||
H.
|
Feeling at home
|
0.91
|
0.87 – 0.94
| |||||||
13 | Indicates that he or she is bored | 0.70d | 0.40d | 0.26 – 0.52 | ||||||
28 | Indicates feeling locked up | 0.85d | 0.52d | 0.31 – 0.67 | ||||||
36 | Feels at home on the ward | 0.62 | 0.54 | 0.44 – 0.63 | ||||||
39 | Wants to get off the ward | 0.82d | 0.52d | 0.36 – 0.65 | ||||||
I.
|
Having something to do
|
0.96
|
0.94 – 0.97
| |||||||
26 | Finds things to do without help from others | 0.69 | 0.61 | 0.51 – 0.70 | ||||||
38 | Enjoys helping with chores on the ward | 0.70d | 0.55d | 0.43 – 0.66 | ||||||
Remaining items to be used in future research
| ||||||||||
9 | Does not want to eat | 0.63 | 0.47 | 0.36 – 0.58 | 0.63 | 0.52 | 0.37 – 0.65 | |||
15 | Enjoys meals | 0.58 | 0.49 | 0.39 – 0.58 | 0.54 | 0.43 | 0.29 – 0.55 | |||
30 | Likes to lie down (in bed) | 0.55 | 0.44 | 0.35 – 0.53 | 0.59 | 0.42 | 0.27 – 0.56 |