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Table 2 All items in the English IPOS-Dem, the interview person’s comprehension of the item and whether the item was changed based on the interviews

From: Translation and cultural adaptation of the Integrated Palliative care Outcome Scale for Dementia (IPOS-Dem) to Swedish

Item in the English IPOS-Dem

Interview persons’ comprehension

Changes made to the Swedish translation based on the interviews

Q1. What have been the person’s main problems over the past week?

Good comprehension

No

Q2. Please select one box that best describes how the person has been affected by each of the following symptoms over the past week

Good comprehension

No

Pain

Good comprehension, but concerns raised about how to assess pain

No

Shortness of breath

Good comprehension

No

Weakness or lack of energy

Good comprehension

No

Nausea (feeling like being sick/vomiting)

Good comprehension without the explanation in parentheses

Yes

Vomiting (being sick)

Good comprehension without the explanation in parentheses

Yes

Poor appetite

Good comprehension

No

Constipation

Good comprehension

No

Dental problems or problems with dentures

Good comprehension

No

Sore or dry mouth

Good comprehension

No

Drowsiness (sleepiness)

The word in the parenthesis was better understood and more commonly used compared to the first word

Yes

Poor mobility (trouble walking, cannot leave bed, falling)

Good comprehension

No

Swallowing problems (e.g. chokes, inhales food or drink, holds food in mouth)

Good comprehension

No

Skin breakdown (redness, skin tearing, pressure damage)

Several interviewees mostly associated the item with pressure ulcers and did not understand the initial translation for skin tearing

Yes

Difficulty communicating

Good comprehension

No

Sleeping problems

Good comprehension

No

Diarrhoea

Good comprehension

No

Hallucinations (seeing or hearing things not present) and/or delusions (fixed false beliefs)

Good comprehension, but the initial translation for “false” had a negative connotation

Yes

Agitation (restless, irritable, aggressive)

Good comprehension

No

Wandering (as a result of distress or putting person at risk)

Good comprehension without the explanation in parentheses

Yes

Has the person had any other symptoms? Please select one box to show how you feel each of these symptoms have affected the person over the past week (optional)

Good comprehension

No

Q3. Has s/he been feeling anxious or worried?

Some informants raised concerns about the first Swedish translation as referring only to everyday worrying and not to anxiety disorders

Yes

Q4. Have any of his/her family been anxious or worried about the person?

Good comprehension

No

Q5. Do you think s/he felt depressed?

Good comprehension

No

Q5b. Lost interest in things s/he would normally enjoy?

Good comprehension

No

Q6. Do you think s/he felt at peace?

Good comprehension

No

Q7. Has s/he been able to interact positively with others (e.g. staff, family, residents)?

Good comprehension

No

Q7b. Can s/he enjoy activities appropriate for his/her level of interests and abilities?

Good comprehension

No

Q8. Has his/her family had as much information as wanted?

Good comprehension

No

Q9. Have all practical problems been addressed? [e.g. hearing aids, foot care, glasses, diet]

The item was perceived as confusing regarding what problems to bring up there

Yes