The aim of this research project is to investigate how to measure pain in persons with aphasia in a valid and reliable manner when patients are unable to self-report.
The use of self-report pain scales in persons with aphasia is challenging due to the communication and cognitive problems. As self-report pain scales are difficult to complete, a pain observation instrument may be a suitable alternative. This project consists of three steps.
The first step was to conduct a systematic review to examine prevalence and incidence of pain in persons with aphasia after stroke, identify pain assessment instruments in use, and examine whether they are feasible, valid, and reliable.
Step two involved an observational cross-sectional study (2019-2021) aimed at enrolling at least eighty persons with aphasia, with fifty participants able to also self-report their pain. The participating organizations were geriatric rehabilitation centres and nursing homes, and we investigated the validity and reliability of the pain observation instrument Pain Assessment in Impaired Cognition (PAIC15).
Based on the results of steps one and two, a clinical pain protocol for persons with aphasia will be developed using a Delphi method (2021-2022). For instance, this pain protocol consists of steps containing self-report pain scales in order of usefulness; if self-report pain scales fail, a valid pain observation instrument is used.
In step three, we will conduct a feasibility study in which we implement the pain protocol for persons with aphasia in the nursing home setting and evaluate its implementation.