Translation and cross-cultural adaptation of Integrated Palliative Care Outcome Scale for Dementia.

Abstract

Background: The Integrated Palliative Care Outcome Scale for Dementia (IPOS-Dem) was developed to assess symptoms and concerns comprehensively for people with dementia. There is a high demand for comprehensive assessment of people with dementia in China.

Aim: To translate and culturally adapt the IPOS-Dem into Chinese.

Design: Conceptual equivalence, forward and backward translations, and expert review were performed to develop a prototype Chinese version. Two rounds of cognitive interviews were conducted to ensure the items and scoring format were clearly expressed in the Chinese version.

Setting/participants: Professionals, including a physician, a nurse, a linguistic researcher and a humanities researcher, were involved in the prototype Chinese version development. A purposive sample of 12 health care professionals working in three Chinese nursing homes participated in the cognitive interviewing.

Results: The Chinese version was perceived as clinically useful. Challenges arose regarding comprehension of some items due to difficulties in translating the precise meanings. These included 'Drowsiness (sleepiness)', 'Difficulty communicating' and 'Do you think s/he felt at peace?'. Considering how a symptom affects an individual presented was also challenging for respondents, as they needed to judge whether the symptom was present and/or causing distress. Selecting the appropriate term to name the measure elucidated the current understanding of dementia and palliative care in China, both of which remain poorly understood.

Conclusion: This study highlighted the importance of cultural adaptation in conveying meanings across cultures. Most items were translatable and conceptually equivalent. The term 'at peace' and the concept of 'being affected' generated the most challenges in comprehension and judgement.