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

ABSTRACT

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.