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

Background In this article, we report the cultural adaption and translation of the Integrated Palliative Care Outcome Scale for People with Dementia (IPOS-Dem) into a Swiss-German easy language version for proxy assessment of people with dementia living in Swiss nursing homes. The Swiss-German easy language version of the IPOS-Dem was developed and culturally adapted in a six-phase process from the German IPOS-Dem using recommended guidelines. With nursing home staff and laypeople, the conceptual definition and relevance of IPOS-Dem items were established during phase I. Phase II encompassed the completion of forward translations. Independent native speakers blind to the original scale translated and back-translated the Swiss-German easy language version. The resulting IPOS-Dem version was then blindly back-translated in phase III. Experts reviewed all resulting translations in phase IV to produce a pre-final IPOS-Dem version. Finally, the phase V cognitive debriefing involved two focus groups assessing the pre-final IPOS-Dem version. Phase V included cognitive interviews with laypeople (n = 2), family members of those with dementia (n = 4) and staff from different care contexts (n = 12). Results Using easy language specialists yielded a clinically relevant, comprehensive and understandable translation. In addition, face and content validity for the easy language version were established in the cognitive interviews. Conclusions With an easy language IPOS-Dem, all frontline staff and family members can be empowered to communicate their observations after caring interactions. Enhanced clinical communication with easy language tools shows the potential for research and clinical applications. In addition, attentive use in scales of easy language communication may foster increased engagement with untrained laypeople in clinical and care research.