After the pilot interview, no alterations of the interview guide were found to be necessary. For interviewee demographics, see Table 2.
Table 2
Interviewee demographic, n = 11
Occupation, n (%) | Nursing assistant | 2 (18%) |
Nurse | 3 (27%) |
Physician | 6 (55%) |
Age, range (years) | Female | 20–33 |
Male | 33–58 |
Gender, n (%) | Female | 6 (55%) |
Male | 5 (45%) |
Working with people with dementia, range (years) | Nursing assistant | 1–8 |
Nurse | 2–19 |
Physician | 5–29 |
Workplace, n (%) | Residential care unit | 4 (36%) |
Specialised palliative home care unit (University Hospital) | 1 (9%) |
Geriatric department (University Hospital) | 2 (18%) |
Emergency department (University Hospital) | 4 (36%) |
Native Swedish speaker, n (%) | Yes | 7 (64%) |
No | 4 (36%) |
Previous experience with APS, n (%) | Yes | 6 (55%) |
No | 5 (45%) |
Conceptualisation phase
Most key concepts in the APS were found easily understandable in relation to healthcare in Sweden. The term ‘resident’ was used in the original version of the APS. In Sweden, several different institutions care for people with dementia: hospitals, nursing homes, in-home care, and hospices. Since all these institutions use different terms (e.g., ‘patient’, ‘resident’. or ‘guest’) we settled on the neutral designator ‘person’ in the APS-SE.
The concept ‘acute on chronic pain’ was not fully understood and lacked a definition by the developers (8). ‘Acute on chronic pain’ does not exist as a diagnosis in the International Classification of Diseases-11 (ICD-11) (19), a classification system developed by World Health Organization (WHO) for clinical and research purposes (20). After consulting with several colleagues, the authors finally decided on ‘kronisk och akut’ (chronic and acute) pain.
Translation process
The following issues were identified:
Q1
The word ‘whimpering’ needed dual Swedish translations to be well recognised by the non-native Swedish-speaking interviewees.
Q2
This question and translation was well understood; no alterations were needed.
Q3: The translation of ‘fidgeting’ required several alterations. Some synonyms were well understood by native Swedish speaking interviewees, but not as well comprehended by non-native Swedish speakers. The authors finally agreed on: ‘move restlessly (e.g., to fiddle or shake one’s leg)’.
‘Withdrawn’ was interpreted both physically and mentally. As in English, the word has a dual meaning in Swedish. Both interpretations were found acceptable, since both types of change had been registered by the interviewees. This was also confirmed in discussions with experienced specialists in geriatrics.
Q4
In the first version of the Swedish APS, ‘refusal to eat’ was translated to matvägran, which was perceived to have a negative connotation in Swedish. It suggested the behaviour of children rather than adults. The new translation vill inte äta (‘does not want to eat’) was received as neutral.
Q5
The translations of ‘flushing’ and ‘pallor’ to rodnad and blekhet were accepted, as these terms are commonly used in medical records according to the emergency medicine specialists we interviewed. However, the items were not always applicable, especially if the person had a darker skin tone. Prior knowledge of the patient by the physician, accompanying staff, or relatives was considered important for assessing the items accurately.
Q6
Hudfliksskada is a validated Swedish translation of the term ‘skin tears’ (21). The interviewees were divided, however; not everyone grasped the translation, and some needed additional explanation. Since hudfliksskada was validated as recently as 2018, the term will probably be more commonly recognised in time.
The word ‘contractures’ has a Swedish medical equivalence in kontraktur. Because this word was not understood by the nursing assistants, an additional explanation was added: kan inte böja eller sträcka ut en led (kontraktur), i.e., ‘cannot bend or straighten a joint (contratures)’.
The translation for the scale ‘no, mild, moderate, or severe’ pain was considered easy to understand.
After these changes, none of the items were considered inappropriate.