A qualitative study investigating the views of stroke survivors and their family members on discussing post-stroke cognitive trajectories

Cognitive impairment is common early after stroke but trajectories over the long term are variable. Some stroke survivors make a full recovery, while others retain a stable impairment or decline. This study explored the perceived advantages and disadvantages of discussing potential cognitive trajectories with stroke survivors and their family members. Stroke survivors at least six-months post-stroke were purposively sampled from an existing pool of research volunteers recruited originally for the OCS-Recovery study. They were invited, alongside a family member, to participate in a semi-structured interview. Interviews were audio recorded, transcribed, and analyzed using reflexive thematic analysis. Twenty-six stroke survivors and eleven family members participated. We identified one overarching theme and three related subthemes. The overarching theme was: One size does not fit all. The subthemes were: (1) Hearing about potential cognitive trajectories helps to develop realistic expectations; (2) Discussions about cognitive trajectories may be motivating; (3) Cognitive decline and post-stroke dementia discussions may be anxiety-provoking and depressing. Healthcare professionals should adopt a person-centred approach to sharing information about post-stroke cognitive trajectories. Discussions should be tailored to individual needs and preferences, with dementia-related topics in particular addressed with the utmost selectivity and sensitivity.