Sources of perceived stress in people with aphasia: a qualitative study

People with post-stroke aphasia present with disproportionate rates of chronic stress, which can lead to devastating physical and mental health consequences. This research aims to explore the sources of day-to-day, perceived stress experienced by people with aphasia to inform future longitudinal studies.

Methods informed by grounded theory were used. Fifteen people with chronic post-stroke aphasia completed a one-hour semi-structured interview with a certified speech-language pathologist. Participants responded to questions about sources of stress while living with aphasia. Data were coded to identify overarching themes and sub-themes.

Interview data showed complex, multifaceted relationships between stress, personal experiences, and cognitive-emotional reactions reported by people with aphasia. Axial themes included communication deficits, state of functional abilities and independence, social isolation, loss of roles and identity, public misunderstanding, fatigue and frustration, and factors unrelated to living with aphasia.

Study findings underscore that the perception of stress is complex, multifactorial, and varies across individuals with aphasia. Furthermore, sources of perceived, day-to-day stress were described as interconnected and dynamic, such that stress commonly co-occurs with lived experiences. Findings from the present study provide a basis for future research to examine how acute stress may transition into chronic stress over time.