Maintaining hope after a disabling stroke: A longitudinal qualitative study of patients' experiences, views, information needs and approaches towards making treatment decisions

Some treatments after a disabling stroke increase the likelihood patients will survive longer but with significant disability. Patients and doctors should make collaborative decisions regarding these treatments. However, this can be challenging. To better understand treatment decision-making in acute disabling stroke, we explored the experiences, views and needs of stroke survivors in hospital and six months later. Fifteen patients who had a disabling stroke were interviewed within a week of their diagnosis; eleven were re-interviewed six months later. Data were analysed thematically and longitudinally. Patients' functional abilities prior to their stroke and need for hope of functional recovery appeared to impact on their involvement in decision-making. In the early period post stroke, patients who were functionally independent pre- stroke described being emotionally devastated and ill-prepared for the consequences of stroke. They appeared unaware that treatments offered might extend their life but with significant disability and took all treatments in the hope of functional recovery. Those who were dependent pre-stroke appeared to be more stoic, had considered treatment implications and decided against such treatments. At follow-up, all patients had varying unmet psychological needs which appeared to contribute to poor quality of life. In the early period post stroke, patients looked for various ways to cultivate and maintain hope of functional recovery. While patients continued to look for hope at six months, they also reported wishing they had been given realistic information in the early period after stroke in order to prepare for the consequences. Stroke survivors may benefit from psychological support. A collaborative approach towards treatment decision-making may not be realistic in all patients especially when they may be emotionally distressed and looking to maintain a positive outlook. Communication strategies to balance maintaining hope without providing false hope may be appropriate. Patients' information needs may need reassessed at different time points.