Table 3 Overview of setting-specific item changes for the community care and acute care versions of the IPOS-Dem (CH) after each round of cognitive debriefing
IPOS-Dem (CH) item after steps 1–3: Translation and semantic equivalence | Comments from community care nurses | Comments from acute care nurses | Comments from informal caregivers | Changes to the item of the IPOS-Dem (CH) Community nurses and community care setting or IPOS-Dem CH acute care setting |
|---|---|---|---|---|
Explanatory text before completing each item: (…) Try to imagine how the person with dementia experiences the current situation. (…) | 1* The IPOS-Dem takes the view from the person with dementia, “…try to imagine…” does not pay justice | 1 no changes proposed | 1 no changes proposed | (…) Try to consider how the person with dementia (…) |
2* no changes proposed | 2 no changes proposed | 2 no changes proposed | ||
3* no changes proposed | 3 no changes proposed | 3 no changes proposed | Version for community care and acute care setting the same: (…) Try to consider how the person with dementia experiences the current situation. (…) | |
Answer option: Cannot assess (e.g., unconscious) | 1 no changes proposed | 1 no changes proposed | 1 no changes proposed | |
2 “Unconscious” might be difficult for relatives to comprehend | 2 Difficult to comprehend “unconsciousness” in relation to the items; to be deleted | Answer option: Version community care: Cannot assess without further information in brackets | ||
3 no changes proposed | 3 no changes proposed | 3 no changes proposed | Answer option amended in the version community care and version acute care: Answer option: Cannot assess | |
I1. What have been the person’s main problems over the course of the last week? | 1 no changes proposed | 1 no changes proposed | 1 no changes proposed | |
2 no changes proposed | 2 no changes proposed | 2 no changes proposed | ||
3 no changes proposed | 3 unclear at whom this item is aimed, to add “from their point of view” | 3 no changes proposed | Version community care: no amendments Version acute care: What have been the person’s main problems over the course of the last week from their point of view? | |
I2. What have been the person’s family member’s main concerns over the course of the last week? | NA** | What have been the person’s family member’s main concerns over the course of the last week? | ||
I3. What have been the main problems in the care and provision of the person with dementia over the course of the last week? | 1 No changes proposed | 1 Change from “problems” to “challenges” | 1 Who is supposed to answer this item? To whom is it addressed? | What have been the main concerns in the care and provision of the person with dementia over the course of the last week? (If the person with dementia is not well known to you, please actively seek perspectives from family and friends) |
2 no changes proposed | 2 Perspective in terms of the setting still unclear | 2 “Care” relates to community care services and provision relates more to food, shelter, etc | What have been the main concerns in the care or care provision at home / in hospital of the person with dementia over the course of the last week? (If the person with dementia is not well known to you, please actively seek perspectives from family and friends) | |
3 no changes proposed | 3 Unclear which perspective to take based on information in brackets | 3 no changes proposed | Version community care: What have been the main concerns in the care and/or care provision at home / in hospital of the person with dementia over the course of the last week? (If the person with dementia is not well known to you, please actively seek perspectives from family and friends) Version acute care: What have been the main concerns in the professional care and / or care provision of the person with dementia over the course of the last week? | |
I4. Pain | NA | Pain | ||
I5. Shortness of breath | NA | Shortness of breath | ||
I6. Weakness or lack of energy | NA | Weakness or lack of energy | ||
I7. Nausea (feeling like being sick/vomiting) | NA | Nausea (feeling like being sick/vomiting) | ||
I8. Vomiting (being sick) | NA | Vomiting (being sick) | ||
I9. Does not feel like eating (e.g., does not eat when prompted, pushes food away) | NA | Does not feel like eating (e.g., does not eat when prompted, pushes food away) | ||
I10. Constipation | NA | Constipation | ||
I11. Dry mouth or pain in the mouth | 1 no changes proposed | 1 Unsure how the item relates to other items about pain, dentures and practical problems | 1 no changes proposed | The word “painful” replaced with “sore” to avoid confusion: Dry or sore mouth |
2 no changes proposed | 2 no changes proposed | 2 no changes proposed | ||
3 no changes proposed | 3 no changes proposed | 3 no changes proposed | Version for community care and acute care setting the same: Dry or sore mouth | |
I12. Sleepiness (during the day) | NA | Sleepiness (during the day) | ||
I13. Limited mobility (e.g., trouble walking, cannot leave bed, falling) | 1 If the person with dementia is using a Zimmer frame, that would indicate that they are fully mobile | 1 Explanations in brackets are of importance for nurses | 1 “cannot get out of bed” does not accurately reflect the dementia population | Limited mobility (e.g., trouble walking, cannot climb stairs, falling) |
2 no changes proposed | 2 Range of mobility from walking to change of position in bed | 2 Item should ask about mobility including walking aids | Limited mobility (e.g., trouble walking, cannot climb stairs, trouble changing position, falling) | |
3 “Falling” is understood as a risk/screening question rather than belonging to limited mobility | 3 Importance of information in brackets emphasized – in particular “trouble changing position” | 3 Falls may be understood as a separate event | “Falling” excluded from information in brackets Version for community care: Limited mobility (e.g., trouble walking, cannot climb stairs) Version acute care: Limited mobility (e.g., trouble walking, cannot climb stairs, trouble changing position) | |
I14. Sleeping problems (at night) | 1 no changes proposed | 1 no changes proposed | 1 no changes proposed | |
2 no changes proposed | 2 Information in brackets “(at night)” is not needed because of the frequently observed sundowning syndrome in people with dementia | 2 no changes proposed | Version community care: Sleeping problems (at night) Version acute care: Sleeping problems | |
3 no changes proposed | 3 no changes proposed | 3 no changes proposed | ||
I15. Diarrhoea | NA | Diarrhoea | ||
I16. Dental problems or problems with artificial dentures | NA | Dental problems or problems with problems with artificial dentures | ||
I17. Swallowing problems (e.g., chokes, inhales food or drink, holds food in mouth) | NA | Swallowing problems (e.g., chokes, inhales food or drink, holds food in mouth) | ||
I18. Skin breakdown (e.g., cracked skin, pressure sores, itching/biting) | NA | Skin breakdown (e.g., cracked skin, pressure sores, itching/biting) | ||
I19. Difficulty communicating (through speech or body language) | 1 no changes proposed | 1 no changes proposed | 1 no changes proposed | |
2 no changes proposed | 2 no changes proposed | 2 Important item but information in brackets can confuse if not applicable | Delete descriptors in brackets Difficulty communicating | |
3 no changes proposed | 3 Item as is includes all forms of communication | 3 no changes proposed | Version for community care and acute care setting the same: Difficulty communicating | |
I20. Hallucinations (seeing or hearing things that are not present) and/or delusions (to belief in something that is not real) | 1 “Delusion” is a negatively connotated word which should not be used for people with dementia as it is often associated with “madness” | 1 Hallucinations and delusions are not the same symptom. Hallucinations are difficult to assess | 1 People with dementia are often referring to the past. These are not hallucinations | Deleting the medical terms, keeping the item descriptor: Seeing or hearing things that are not present and/or believing something that is not real |
2 Item can also indicate a delirium | 2 Maybe include “smelling” into descriptor | 2 The word “present” to be exchanged with “possible” as the latter is more commonly used in the Swiss German language | Version community care: Seeing or hearing things that are not possible and/or believing something that is not real Version acute care: Seeing, hearing, or smelling things that are not possible and/or believing something that is not real | |
3 no changes proposed | 3 no changes proposed | 3 no changes proposed | ||
I21. Agitation (restless) | 1 If someone is agitated, then the person becomes more restless | 1 Agitation and restlessness are the same concept | 1 Agitation is nestling; restlessness is walking around. If people with dementia feel threatened, they become restless | Agitation (restlessness as a consequence of feeling distressed) |
2 Restlessness is more a long-term condition. Agitation is often caused by something acute and is therefore a reason for concern | 2 Agitation means that the person with dementia is driven by something | 2 Restlessness is the smaller version of agitation | Round 1 alteration taken out because restlessness was not clearly related to feelings of angst: Agitation (restlessness) | |
3 Two different terms within the same concept | 3 Restless means pulling out drips/tubes, getting out of bed, verbal aggressiveness | 3 no changes proposed | Version community care: Agitation (restlessness) Version acute care setting: Agitation | |
I22. Wandering (as a result of restlessness or feeling threatened) | 1 The item is connected to I21 | 1 Maybe this is a sub-category of the previous item? (Agitation (restlessness)) | 1 Feeling threatened results more in agitation than wandering. Wandering is a complex phenomenon in people with dementia | Expert consultation – change descriptor in brackets since wandering is not necessarily a result of restlessness: Wandering (e.g., as a sign of distress/despair) |
2 no changes proposed | 2 Only asks about wandering if person with dementia is distressed | 2 “Sign of distress” might be too narrow for this complex symptom, also narrows the symptom to distress | Wandering (as a sign of despair) | |
3 Wandering in despair is different to restlessness but it also complements the two items | 3 Adding despair as a descriptor makes it easier to understand | 3 no changes proposed | Version for community care and acute care setting the same: Wandering (as a sign of despair) | |
I23. Has s/he been feeling anxious or worried? | NA | Has s/he been feeling anxious or worried? | ||
I24. Have any of his/her family been anxious or worried about the person? | NA | Have any of his/her family been anxious or worried about the person? | ||
I25. Do you think the person with dementia felt depressed? | NA | Do you think the person with dementia felt depressed? | ||
I26. Did s/he lose interest in things that s/he would normally enjoys? | NA | Did s/he lose interest in things that s/he would normally enjoys? | ||
I27. Has s/he been showing irritated or aggressive behaviour? | NA | Has s/he been showing irritated or aggressive behaviour? | ||
I28. Do you think s/he felt at peace? | 1 no changes proposed | 1 no changes proposed | 1 no changes proposed | |
2 no changes proposed | 2 no changes proposed | 2 Able to complete this item easily for her mum (daughter), no problems with comprehension or assessment | No changes | |
3 This item might reflect truly the quality of our care because it might indicate how well the person with dementia is supported by us | 3 Item can only be answered based on long conversations with the person with dementia or their family | 3 no changes proposed | Information added for nurses who have not known the person with dementia over a longer period of time Version for community care and acute care setting the same: Do you think s/he felt at peace? (If the person with dementia is not well known to you, please actively seek perspectives from family and friends.) | |
I29. Has s/he been able to interact with others (including physical contact e.g., with staff, family, residents)? | 1 no changes proposed | 1 no changes proposed | 1 no changes proposed | |
2 no changes proposed | 2 no changes proposed | 2 no changes proposed | ||
3 no changes proposed | 3 in hospital we would use the term patients and not residents | Version community care: Has s/he been able to interact with others (including physical contact e.g., with staff, family, residents)? Version acute care: Has s/he been able to interact with others (including physical contact e.g., with staff, family, patients)? | ||
I30. Have any practical problems been addressed? (e.g., hearing aids, foot care, glasses, diet) | 1 no changes proposed | 1 no changes proposed | 1 no changes proposed | |
2 no changes proposed | 2 no changes proposed | 2 no changes proposed | ||
3 no changes proposed | 3 Unclear what is meant by diet. Item needs to be clearer (content and perspective of observer) | 3 no changes proposed | Version community care remained the same: Have any practical problems been addressed? (e.g., hearing aids, foot care, glasses, diet) Version acute care setting: Have any practical problems addressed? (e.g., supportive devices addressed, hearing aids, foot care, glasses) | |
I31. Other physical, emotional, social, or spiritual symptoms | NA | Other physical, emotional, social, or spiritual symptoms | ||