“But, but over the years you just give up!”: a qualitative study of people with post stroke aphasia receiving healthcare in the community and how technology could assist

Purpose To explore the perspectives of people living with chronic post-stroke aphasia and their significant others on accessing healthcare in the community and if technology could assist.Methods A qualitative descriptive approach was used. People with aphasia (n = 6) and significant others (n = 5) participated in semi-structured interviews. Data were analysed using reflexive thematic analysis.Results Four themes on participants’ experiences of accessing healthcare were developed: (1) Seeking healthcare is complex and distressing; (2) Despite differences everybody strives for independence; (3) The exceptional and underacknowledged role of a family support person; and (4) Understanding and adapting help: Doing nothing is devastating. Two themes were developed on whether technology could assist. These were: (1) Personalised support to make healthcare communication more accurate, specific, and easier; and (2) Technology could help but only if ….Conclusion People with aphasia need healthcare provider support to optimise their independence and get their healthcare needs met without distress. Co-designed technology could improve independence for some people with aphasia. However, the success of any healthcare technology hinges on investment in system level supports to enable healthcare providers to adapt communication and processes for people with aphasia.