Stroke survivors’ experiences of the fundamentals of care: A qualitative analysis

Abstract

BackgroundManaging the fundamentals of care (e.g. elimination, personal hygiene, eating,) needs to be more explicitly addressed within the patient-centred care discourse. It is not possible to investigate issues of patient dignity and respect without acknowledging these basic physical needs. While the literature on caring for people with a stroke is extensive, no studies to date have described stroke survivors’ experiences of all of these fundamentals during the in-hospital phase of their care. DesignSecondary analysis of qualitative data grounded in interpretative phenomenology Participants and settings: Fifteen stroke survivors with in-hospital experiences from multiple healthcare settings and healthcare professionals across the United Kingdom were included. MethodA secondary thematic analysis of primary narrative interview data from stroke survivors. ResultsSurvivors of strokes have vivid and often distressing recollections of their experiences of the fundamentals of care. For every description of a physical need (elimination, eating and drinking, personal hygiene) there where lucid accounts of the psychosocial and emotional impact (humiliation, distress, lack of dignity, recovery, confidence). Linked to the somatic and emotional dimensions were narratives around the relationship between the patient and the carer (nurse, doctor, allied health professional). Positive recollections of the fundamentals of care were less evident than more distressing experiences. Consistent features of positive experiences included: stroke survivors describing how the physical, psychosocial and relational dimensions of care were integrated and coordinated around their particular need. They reported feeling involved in setting achievable targets to regain control of their bodily functions and regain a sense of personal integrity and sense of self. Sociological constructs such as biographical disruption and loss of self were found to be relevant to stroke survivors’ experiences. Indeed, such constructs may be more linked to the disruption of such fundamental activities rather than the experience of the illness itself. ConclusionsWe recommend more practical and integrated approaches be taken around understanding and meeting the physical, psychosocial and relational needs of patients in hospital which could lead to more patient-centred care experiences. These three dimensions need to co-exist in every care episode. More exploration is required to identify the common fundamentals of care needs of patients regardless of illness experience.