The experience of upper-limb dysfunction after stroke: a phenomenological study

Background: Stroke can bring about a profound disruption to people’s lives, but what is less understood is the effect that specific dysfunctions can have. The aim of this study was to explore stroke survivors’ experiences of upper-limb dysfunction over time.Methods: 13 adult stroke survivors engaged in a series of up to four semi-structured interviews over an 18-month period after stroke. Data were interpreted through a method based on framework analysis. An interpretive phenomenological approach guided the research.Results: Upper-limb dysfunction brought substantial challenges for people, identified in a main theme of an altered way of life. Subordinate themes that contributed to this alteration were challenges in personal care, participating in meaningful and valued activities, and managing life roles and relationships. The second main theme was the disrupted self, with subordinate themes of feeling devalued, disrupted self-image and changes in identity.Conclusion: The impact of upper-limb dysfunction on people’s lives after stroke should be understood and acknowledged by rehabilitation professionals. Restoring some functional upper-limb activity could play an important role in enabling a person to regain a meaningful life and a coherent sense of self after stroke.IMPLICATIONS FOR REHABILITATIONUpper-limb dysfunction after stroke, and the loss of bimanual hand function, can profoundly alter a person’s life, rendering them unable to manage simple tasks of personal care, participate in valued activities and fulfil important life roles.These functional and social limitations can then disrupt their sense of self, with feelings of low self-worth, and changes in self-image and identity.It is important that these changes in stroke survivors’ lives are acknowledged and understood by rehabilitation professionals. More prolonged periods of therapy for recovery of upper-limb function, or for developing compensatory strategies, should be considered so that people can regain some meaning in life and maintain a coherent sense of self.