Background
Methods
Design and setting
ASCOT SCT-4
Domains
|
Description and translation of the items ‘Control over daily life’ and ‘Dignity filter question’
|
---|---|
Control over daily life
| ’The service user can choose what to do and when to do it, having control over his/her daily life and activities |
Original version
| |
1. Which of the following statements best describes how much control you have over your daily life? | |
By ‘control over daily life’ we mean having the choice to do things or have things done for you as you like and when you want.
| |
- I have as much control over my daily life as I want | |
- I have adequate control over my daily life | |
- I have some control over my daily life but not enough | |
- I have no control over my daily life | |
Final Dutch translation
| |
1. Welke van de volgende uitspraken beschrijft het best in hoeverre u uw dagelijks leven zelf kunt inrichten? | |
Met het ‘zelf inrichten van uw dagelijks leven’ bedoelen we dat u de keuze heeft om dingen te doen of voor u te laten doen wanneer en hoe u dat wilt.
| |
- Ik kan mijn leven inrichten zoals ik wil | |
- Ik kan mijn leven voldoende zelf inrichten | |
- Ik kan mijn leven in enige mate zelf inrichten, maar niet genoeg | |
- Ik kan mijn leven niet zelf inrichten | |
Personal cleanliness and comfort
| ‘The service user feels he/she is personally clean and comfortable and looks presentable or, at best, is dressed and groomed in a way that reflects his/her personal preferences’ |
Food and drink
| ‘The service user feels he/she has a nutritious, varied and culturally appropriate diet with enough food and drink he/she enjoys at regular and timely intervals’ |
Personal safety
| ‘The service user feels safe and secure. This means being free from fear of abuse, falling or other physical harm’ |
Social participation and involvement
| ‘The service user is content with their social situation, where social situation is taken to mean the sustenance of meaningful relationships with friends, family and feeling involved or part of a community should this be important to the service user’. |
Occupation
| ‘The service user is sufficiently occupied in a range of meaningful activities whether it be formal employment, unpaid work, caring for others or leisure activities’ |
Accommodation cleanliness and comfort
| ‘The service user feels their home environment, including all the rooms, is clean and comfortable’. |
Dignity
| ‘The negative and positive psychological impact of support and care on the service users’ personal sense of significance’ |
Original version
| |
Dignity filter question
| |
8. Which of these statements best describes how having help to do things makes you think and feel about yourself? | |
- Having help makes me think and feel better about myself | |
- Having help does not affect the way I think or feel about myself | |
- Having help sometimes undermines the way I think and feel about myself | |
- Having help completely undermines the way I think and feel about myself | |
ASCOT Dignity question
| |
9. Which of these statements best describes how the way you are helped and treated makes you think and feel about yourself? | |
- The way I’m helped and treated makes me think and feel better about myself | |
- The way I’m helped and treated does not affect the way I think or feel about myself | |
- The way I’m helped and treated sometimes undermines the way I think and feel about myself | |
- The way I’m helped and treated completely undermines the way I think and feel about myself | |
Final Dutch translation
| |
Dignity filter question
| |
8. Welke van de volgende uitspraken beschrijft het best hoe het hebben van hulp uw | |
zelfbeeld beïnvloedt? | |
- Het hebben van hulp heeft een positieve invloed op mijn zelfbeeld | |
- Het hebben van hulp heeft geen invloed op mijn zelfbeeld | |
- Het hebben van hulp heeft soms een negatieve invloed op mijn zelfbeeld | |
- Het hebben van hulp heeft een volstrekt negatieve invloed op mijn zelfbeeld | |
ASCOT Dignity question
| |
9. Welke van de volgende uitspraken beschrijft het best in hoeverre u zich gerespecteerd voelt door de manier waarop u wordt geholpen en behandeld? | |
- Door de manier waarop ik word geholpen en behandeld voel ik me gerespecteerd | |
- De manier waarop ik word geholpen en behandeld heeft geen invloed op hoe ik me voel | |
- Door de manier waarop ik word geholpen en behandeld voel ik me soms niet gerespecteerd | |
- Door de manier waarop ik word geholpen en behandeld voel ik me volstrekt niet gerespecteerd |
Translation
Stage I: initial translation
Stage II: synthesis of the translations
Stage III: back translation
Stage IV: expert committee
Stage V: test of the prefinal version (cross-cultural validation)
Stage VI: final version and appraisal of the adaptation process
Stage V: cross-cultural validation
Content validity
Comparison with response distributions in England
Construct validity
Test-retest reliability
Results
Translation process and content validity
Control over daily life
Personal cleanliness and comfort
Food and drink
Personal safety
Social participation and involvement
Occupation
Accommodation cleanliness and comfort
Dignity filter question
ASCOT Dignity question
Comparison with response distributions in England
Subsample ACT study N = 190¶
|
Dutch cases (a subsample of ACT study matched to English controls) N = 169¶
|
English controls (IIASC study) N = 152¶
|
Difference between cases and controls
| |
---|---|---|---|---|
P-value†
| ||||
Age. mean (SD) | 82.39 (7.67) | 82.04 (7.68) | 80.68 (7.38) | 0.11 |
Sex. % women | 71.6% | 78.1% | 77.0% | 0.81 |
Marital status. % not married (i.e. never married, widowed or divorced) | 78.4% | 80.5% | 75.0% | 0.24 |
Living situation. % alone | 68.4% | 72.8% | 70.4% | 0.64 |
EQ-5D (−0.594-1). Mean (SD) | 0.59 (0.31) | 0.59 (0.31) | 0.37 (0.35) | <0.01 |
Utility-weighted ASCOT (−0.171-1). Mean (SD)¶
| 0.80 (0.16) | 0.81 (0.16) | 0.80 (0.16) | 0.83 |
ADL limitations (0–8). Mean (SD)ǂ
| 2.14 (1.64) | 2.16 (1.60) | 2.70 (1.89) | <0.01 |
Self-rated health | ||||
Excellent/very good. % | 4.7% | 4.7% | 7.9% | 0.05 |
Good. % | 45.3% | 45.0% | 31.6% | |
Fair. % | 39.5% | 40.2% | 44.1% | |
Poor. % | 10.5% | 10.1% | 16.4% |
Construct validity
ASCOT item |
Control over daily life
|
Personal cleanliness and comfort
|
Food and drink
|
Personal safety
| ||||||||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
Response level | 4 (high-level needs) | 3 (some needs) | 2 (no needs) | 1 (ideal state) | 4 (high-level needs) | 3 (some needs) | 2 (no needs) | 1 (ideal state) | 4 (high-level needs) | 3 (some needs) | 2 (no needs) | 1 (ideal state) | 4 (high-level needs) | 3 (some needs) | 2 (no needs) | 1 (ideal state) | ||||
N | N = 8 | N = 27 | N = 85 | N = 67 | N = 3 | N = 5 | N = 55 | N = 125 | N = 0 | N = 11 | N = 30 | N = 146 | N = 3 | N = 11 | N = 69 | N = 106 | ||||
Partner status, % no partner | 100% | 64% | 84% | 76% | NS | |||||||||||||||
Living alone, % | 100% | 64% | 73% | 66% | NS | |||||||||||||||
Self-perceived QoL, % (very) good/excellent | 14% | 27% | 57% | 69% | *** | 0% | 0% | 38% | 65% | *** | - | 18% | 47% | 60% | ** | 0% | 9% | 59% | 59% | *** |
HR-QoL (EQ-5D), mean (sd) | 0.18 (0.40) | 0.35 (0.33) | 0.63 (0.24) | 0.70 (0.27) | *** | 0.48 (0.30) | 0.06 (0.38) | 0.55 (0.30) | 0.64 (0.28) | *** | - | 0.27 (0.34) | 0.61 (0.26) | 0.61 (0.30) | *** | 0.42 (0.14) | 0.49 (0.28) | 0.60 (0.29) | 0.61 (0.32) | NS |
Getting around outdoors, %independent | 0% | 22% | 47% | 70% | *** | |||||||||||||||
Using the toilet, %independent | 75% | 96% | 99% | 99% | ** | |||||||||||||||
Bathing, %independent | 25% | 56% | 78% | 97% | *** | 33% | 40% | 75% | 84% | ** | ||||||||||
Dressing, %independent | 38% | 74% | 87% | 97% | *** | 100% | 40% | 84% | 90% | ** | ||||||||||
Eating, %independent | 88% | 96% | 99% | 100% | * | - | 91% | 100% | 99% | NS | ||||||||||
Paperwork/finances, %independent | 13% | 59% | 77% | 91% | *** | |||||||||||||||
Grocery shopping, %independent | 0% | 30% | 51% | 70% | *** | |||||||||||||||
Preparing meals, %independent | 14% | 46% | 64% | 77% | *** | - | 40% | 59% | 61% | NS | ||||||||||
ASCOT item |
Social participation and involvement
|
Occupation
|
Accommodation cleanliness and comfort
|
Dignity
| ||||||||||||||||
Response level | 4 (high-level needs) | 3 (some needs) | 2 (no needs) | 1 (ideal state) | 4 (high-level needs) | 3 (some needs) | 2 (no needs) | 1 (ideal state) | 4 (high-level needs) | 3 (some needs) | 2 (no needs) | 1 (ideal state) | 4 (high-level needs) | 3 (some needs) | 2 (no needs) | 1 (ideal state) | ||||
N | N = 17 | N = 34 | N = 85 | N = 52 | N = 6 | N = 40 | N = 66 | N = 75 | N = 4 | N = 11 | N = 89 | N = 62 | N = 0 | N = 15 | N = 93 | N = 57 | ||||
Partner status, % no partner | 77% | 71% | 78% | 85% | NS | |||||||||||||||
Living alone, % | 53% | 65% | 67% | 79% | NS | |||||||||||||||
Self-perceived QoL, % (very) good/excellent | 19% | 42% | 64% | 62% | *** | 0% | 31% | 58% | 69% | *** | 0% | 25% | 43% | 64% | *** | - | 33% | 64% | 54% | NS |
HR-QoL (EQ-5D), mean (sd) | 0.47 (0.41) | 0.51 (0.30) | 0.59 (0.30) | 0.71 (0.25) | *** | 0.12 (0.39) | 0.46 (0.28) | 0.59 (0.30) | 0.70 (0.25) | *** | 0.61 (0.25) | 0.29 (0.41) | 0.54 (0.30) | 0.64 (0.29) | *** | - | 0.43 (0.35) | 0.59 (0.31) | 0.63 (0.27) | * |
Test-retest reliability
Item
|
N
|
Quadratic weighted Kappa
| |
---|---|---|---|
Control over daily life | 147 | 0.66 (0.56 – 0.74) | Substantial |
Personal cleanliness and comfort | 147 | 0.68 (0.58 – 0.76) | Substantial |
Food and drink | 146 | 0.52 (0.39 – 0.63) | Moderate |
Personal safety | 147 | 0.44 (0.30 – 0.57) | Moderate |
Social participation and involvement | 147 | 0.66 (0.55 – 0.74) | Substantial |
Occupation | 144 | 0.60 (0.49 – 0.70) | Moderate |
Accommodation cleanliness and comfort | 146 | 0.67 (0.57 – 0.75) | Substantial |
Dignity filter question | 126 | 0.35 (0.18 – 0.49) | Slight |
ASCOT Dignity question | 125 | 0.44 (0.28 – 0.57) | Moderate |