Background Stroke is the second largest cause of death worldwide. Perceived poor communication is a major cause of healthcare complaint, yet information-sharing following stroke is little-researched.
Aim To describe and explore: a) carers’ experiences of professional truth-telling in the 6 months following severe stroke b) how carers process uncertainty
Methods Secondary analysis of semi-structured serial interviews with carers at 6 weeks and 6 months post-stroke, using Framework approach.
Population: Informal carers of severely-dependent adult patients with Total Anterior Circulation Stroke in Lothian (Scotland), including carers of patients who died during the study.
Sampling: Purposive sampling for maximal variation; secondary analysis sampled geographically.
Rigor: Analysis of deductive and inductive themes; discussion of emergent themes with primary data collectors; examination of deviant, negative and extreme cases.
Results 20 transcripts from 15 carers were analysed, including 6 bereavement interviews. All interviews referenced truth-telling by healthcare professionals, most frequently ‘construction of truth as a process’ and ‘value of honesty/frankness’. Some carers described professionals intending to deceive. Most carers described uncertainty as something negative, using behaviours to reduce uncertainty. A minority described uncertainty as a positive or ‘window for hope’, using behaviours to increase uncertainty.
Carer, professional, patient and environmental factors influenced carers’ experiences. What carers said was complex and views changed over time.
Discussion and conclusions We present a new visual model of truth-telling between healthcare professionals and carers. Truth-telling is a complex, two-way process. Carers and professionals view ‘the truth’ through ‘lenses’ of their own worldviews, experiences and knowledge. Carers’ views of uncertainty affect engagement with truth-telling. The truth-telling system is open, asymmetrical and dynamic: with access of external information and a gradient of knowledge and power within each professional-carer dyad, which changes over time. Poor communication has important fall-out. Our visual model could help professionals approach information-sharing following severe stroke more confidently.
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