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Table 3 Comments on modified pre-final IPOS-Dem sections from cognitive interviews

From: Integrated Palliative Outcome Scale for People with Dementia: easy language adaption and translation

Pre-Final IPOS-Dem Findings
You are caring for a person with dementia
We would like you to tell us:
How was the person with dementia doing during the last 7 days?
What worried the person with dementia’s family or friends?
Which problems did you or someone else encounter during nursing care and social care?
Important:
All questions always concern the last 7 days
Please write clearly
ProInfirmis recommendations are well written and clear: ‘7 days’ instead of the words ‘last week’ is the better alternative
Date today (day/month/year) ‘Date today’ is clearer than just ‘date’
No appetite (don’t want to eat) Clear; a lot of people with dementia have a poor appetite. The English term is not accurate in the Swiss context
Problems with teeth The change in the pre-final-version is clear
Is tired or sleepy during the day Sleepiness is more apparent than drowsiness; explanatory example is not needed
Impaired mobility (trouble walking, cannot get up, falls) Impaired mobility is apparent, especially in the context of kinesthetics
Difficulty communicating (speaking or any kind of body language) Addition in the brackets is straightforward and also necessary
Can’t sleep (during the night) Addition in the brackets is precise and also necessary
Agitation Discussion about the explanation in the brackets. However, it is not necessary for the Swiss context because of the serial trial intervention assessment (STI)
Has she/he been feeling anxious or agitated? Changes in the German version are apparent due to the usage of the STI
Do you think she/he felt sad or unhappy? Sad and unhappy are both necessary
Has she/he been able to talk to others or get in touch in some way (team, family, residents)? Addition with ‘positively’ is not necessary
If there was a problem, were you able to do something to resolve it? (help with hearing aids, organise foot care or smooth food) Practical problems are to be considered in the context of everyday life