“I had no idea what a complicated business eating is…”: a qualitative study of the impact of dysphagia during stroke recovery

Abstract

Aim: Persons with dysphagia following stroke may experience uncomfortable symptoms such as persistent coughing, choking and poor salivary management. They may also spend long periods of time unable to eat or drink or with restrictions on oral intake. Experiences of dysphagia post-stroke are richly described in unsolicited narratives such as autobiographies on the stroke event, which often include details of the author’s journey through their stroke recovery. The aim of this study is to use autobiographical accounts to explore the experiences of those living with dysphagia following stroke.

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.

Keywords:

• Dysphagia
• stroke
• qualitative
• autobiography

Disclosure statement

The authors report no declarations of interest.