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Method: Published autobiographies narrating the author’s experiences of living with dysphagia following stroke were sourced. Ten autobiographies were retrieved and the texts were manually inspected. All references to eating, drinking and swallowing were extracted and pooled to form the data set. A qualitative approach using a six-step interpretive phenomenological analysis process was taken to analyze this data set.
Results: A wide range of interconnected themes emerged from the data, allowing further synthesis into six overarching super-ordinate themes. These six super-ordinate themes were: “physical consequences of dysphagia”; “process of recovery”; “coping and adjusting”; “changed relationships”; “society” and “control”.
Conclusions: This study highlights the unique contribution of autobiographical accounts in developing our understanding of living with dysphagia following stroke. The findings emphasize the significant emotional and social impact of dysphagia during the stroke recovery process and add further depth to our understanding of the experience of this clinical group.
- Implications for Rehabilitation
Autobiographical accounts often hold valuable first-hand information on patient perspectives and journeys, which when viewed through the eyes of a qualitative researcher, can add depth to our understanding of particular healthcare experiences.
Persons who experience dysphagia as a result of stroke travel a complex rehabilitation journey, involving the interaction of many physical, emotional and social considerations.
Healthcare professionals should be aware of not only the physical, but also the significant psychosocial consequences of living with dysphagia following stroke.
Further research is required in this field, so that the experiences of these persons can be better understood and findings can be used to contribute to high-quality and evidence-based service delivery.