Integrating palliative care within acute stroke services: developing a programme theory of patient and family needs, preferences and staff perspectives

Data from a survey (n=191) of patient-reported palliative care needs and interviews (n=53) exploring experiences with patients and family members were explored in group interviews with 29 staff from 3 United Kingdom stroke services. A realist approach to theory building was used, constructed around the mechanisms that characterise integration, their impacts, and mediating, contextual influences.The framework includes two cognitive mechanisms (the legitimacy of palliative care and individual capacity), and behavioural mechanisms (engaging with family; the timing of intervention; working with complexity; and the recognition of dying) through which staff integrate palliative and stroke care. A range of clinical (whether patients are being ‘actively treated’, and prognostic uncertainty) and service (leadership, specialty status and neurological focus) factors appear to influence how palliative care needs are attended to.Our framework is the first, empirical explanation of the integration of palliative and acute stroke care. The specification in the framework of factors that mediate integration can inform service development to improve the outcomes and experiences of patients and families.There is a lack of evidence developed or validated within a stroke context to help clinicians meet the palliative care needs of patients and families. Synthesising earlier research which prospectively identified stroke patients’ palliative care problems and needs [1], experiences and preferences [2] and staff perspectives, this paper provides the first theoretical explanation of how palliative care and acute stroke care can be integrated around the needs and preferences of patients and families.Despite advances in the early identification and clinical management of patients with stroke, a significant proportion of patients die in the acute phase. Most recent estimates suggest that the 30-day mortality rate is 17% [3], although there is variation in mortality rates across stroke sub-type