“I Assumed It Would Be Somebody Who Had a Stroke That Was Doing This”: Views of Stroke Survivors, Caregivers, and Health Professionals on Tailoring a Relaxation and Mindfulness Intervention

Abstract

Stroke survivors and informal caregivers experience high levels of stress and anxiety, linked to heightened risk of secondary stroke in survivors. Relaxation and mindfulness could reduce stress and anxiety; being most effective when tailored to the target populations. Aims of the PPI include to: (1) consult on possible alterations to an existing relaxation and mindfulness intervention, delivered via YouTube/DVD and (2) discuss relevance and preference of prompts and cues designed to facilitate the daily practice of the intervention. Eleven UK PPI contributors were consulted during 2020: four stroke survivors (F = 2, M = 2), three caregivers (F = 1, M = 2), and four HCPs (F = 4) (range = 23–63 years). Contributors watched the existing intervention and provided feedback via online discussions. Transcripts were analysed using thematic analysis. Five themes were identified, highlighting several necessary alterations to the intervention: “Who represents the stroke population?”; “The paradox of age”; “Specifically selected language”; “Visual presentation of the intervention”; and the “Audio qualities”. Contributors ranked the prompts and cues in order of preference with setting alarms and email alerts as the most popular. The PPI consultations resulted in several alterations enabling a revised version of the intervention. Including a PPI consultation at an early stage of the research improves the relevance and appropriateness of the research. The revised intervention is more representative of the stroke population thus more likely to be practised by survivors and caregivers, which will enhance the extent of effectiveness, reducing the risk of a secondary stroke.