The experience of uncertainty for patients, families and healthcare providers in post-stroke palliative and end-of-life care: a qualitative meta-synthesis

Abstract Purpose recent data show that there is limited evidence and guidance regarding the best practices for the integration of palliative care (PC) and end-of-life (EOL) post-stroke. The purpose of this meta-synthesis is to understand the PC/EOL experiences after a stroke. Methods a meta-synthesis was conducted to answer the following research question—What are post-stroke PC/EOL experiences from the perspectives of patients, families and healthcare professionals (HCPs)? This approach was completed through two main phases—a systematic search and appraisal of the literature and reciprocal translation with interpretive triangulation of the extracted data. Databases searched were MEDLINE, EMBASE, PsycINFO, Joanna Briggs Institute and CINAHL databases (from their inception to April 2020). After data were extracted, a qualitative exploratory design was used to evaluate the PC/EOL in post-stroke experiences. Results the search identified 696 studies. A total of 14 studies were included in this meta-synthesis as they satisfied our eligibility criteria. Uncertainty post-stroke was the overarching main theme that emerged across post-stroke PC/EOL experiences. Within this theme of uncertainty, opportunities to decrease uncertainty emerged from two interdependent themes—presence of cohesive communication and shared dynamic decision process for both families and HCPs. Conclusions to mitigate the degree of uncertainty post-stroke, HCPs should be present, provide clear direct communication and incorporate the value-based goals of care within their medical treatment plan. These findings suggest that future research is needed to focus on how PC approaches can be integrated into stroke care programmes.