Dying from acute stroke: orchestrating an autoethnographic sonata of care

Abstract

A thesis submitted in partial fulfilment of the requirements of the University of Wolverhampton for the degree of Professional Doctorate in Health and Wellbeing.This authoethnographic study draws together the experiences of the researcher and bereaved family members of patients who died in hospital following an acute stroke. It takes the form of a Sonata Framework that mirrors the author’s narrative around the duration and onset of his mother’s stroke, hospital care and ultimate discharge home to die. Although symptoms experienced by individuals with malignant and non-malignant disease are similar, evidence suggests the transition from acute to palliative care remains problematic for patients following an acute stroke, not least when seeking to identify when someone is nearing end of life. A qualitative interview study aimed to explore the personal experiences of family members whose relative had died following admission to an acute stroke ward. In order to do this, six adult relatives of patients who died in hospital following an acute stroke were interviewed using a semi-structured interview schedule. Data were inductively analysed to produce basic, organising and global themes, and presented in the form of thematic networks: The Family Experience and Dying & Death. Further findings were deductively derived through the lens of the Sonata Framework. Findings suggested shortfalls in the provision of palliative and end of life care following acute stroke, although areas of good practice were identified. Overall, participants were complimentary of the care provided to their family member although the transition from acute to palliative was variable. The quality of communication between patients, relatives and staff was patchy, with no evidence of engagement with the hospital palliative care team, nor any discussions instigated by staff relating to preferred place of death. This study provided evidence of some improvement in local palliative and end of life care provision when compared with previous research, although gaps in such provision still exist. Staff should receive palliative and end of life care training, including communication skills training to identify individuals who may be nearing the end of life and to instigate timely conversations with their family members. Further research relating to the provision of palliative and end of life care for individuals following an acute stroke is recommended

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