“Why do people have to talk loud? He’s not deaf”: How do people with aphasia experience and manage listening and comprehension impairments in daily life?

Abstract

Background: Comprehensionimpairments impact the way people with aphasia (PWA) engage with activities. Such impairments can go undiagnosed and there is limited knowledge of the impact of comprehension impairments on daily activities and how PWA manage and adapt to problems comprehending speech and language. This work explores the experiences and views of PWA and their Communication Partners (CPs) on the impact of comprehension impairments during participation in daily activities and the self-generated strategies and changes that support participation. Methods &Procedures: Four PWA and four CPs participated in semi-structured interviews over videoconferencing. The interviews were transcribed and analysed using reflexive thematic analysis. Outcomes &Results: Four main themes were identified: (1) Spaces, places and adaptations: thriving and surviving: participants described common barriers and adaptationsthat supported communication; (2) Living well: keeping busy and enjoying activities: participants described finding meaning andenjoyment in activities and discussed common adaptions that supported activities; (3) Managing emotions and changing identities: participants described the impact of frustration and social isolation that resulted from comprehension impairments; (4) Knowing me knowing you: forming and maintaining relationships; participants shared that familiar communication partners facilitated understanding while communicating with unfamiliar communication partners could be more challenging or was avoided, a lack of public awareness of aphasia was also discussed. Conclusions &Implications: Comprehension impairments resulted in concerns of stigmatisation, a significant emotional burden and a negative impact on wellbeing. However, PWA and CPs identified numerous strategies and adaptations which promoted participation in daily activities. These ranged from adapting the environment and CP communication strategies to changes in activities in order to reduce comprehension burden. When these adaptations were combined, they promoted participation in meaningful activities. While some adaptations were universal (e.g. reducing background noise), others were individualised (e.g. use of technology). Participants indicated a need for clinical guidance to successfully implement strategies/adaptation. Aphasia adapted materials are provided summarising the practical changes that PWA have successfully implemented.