Poetry is chocolate: a project-based interest-holder-engaged qualitative investigation of poetry about cognitive communication disorders and aphasia.

Abstract

Background: It is common for individuals with cognitive communication disorders (CCD) and aphasia to experience changes to cognition, communication and psychological status, which can alter their identity and sense of self.

Methods: Five individuals with CCD and two with aphasia co-designed and co-produced an interest-holder-engaged investigation of their own poems about living with CCD and/or aphasia. They wished to demonstrate the value they associate with poetry as a vehicle for self-expression and processing their recovery. A project-based intervention served as a framework for implementing this co-analysis process. Co-investigators with CCD and aphasia participated at the highest level of engagement, serving as partners and decision-makers for the entire process. Individuals with CCD and aphasia were trained by three speech-language pathology graduate students on how to complete reflexive thematic analysis.

Results: Co-investigators with CCD and/or aphasia performed these analyses with a high level of rigour and integrity. Qualitative analyses identified two main themes: loss and overcoming. Loss included the subthemes of frustrations, impairments and loss of self. Overcoming included subthemes of community, redemption and successes, poetry as a means of expression, and emotional adjustment.

Conclusions: Co-investigators were able to complete the analyses with training and support from the graduate student clinicians. Poetry served as a vehicle for self-expression and identity renegotiation. Take aways: Poets were able to process recovery, trauma, and adjustment through writing and sharing their work in a safe space. By sharing illness narratives and making sense of their CCD/aphasia, poetry provides a modality for exploring post-CCD/aphasia self and renegotiating identity.