Living with dysphagia in the real world can be extremely challenging, both practically and psychologically. Long-term changes in taste due to chemo-radiation treatment for head and neck cancer, fatigue due to Parkinson’s disease, and physically impaired structures due to stroke have been reported. Some studies have reported some psychosocial consequences such as embarrassment about the way a person felt they ate or fear of choking in public. Given the gap in investigating these sequealae, this study aimed to understand the impact of dysphagia in 15 participants (5f:10m), by thematically analysing interview data gathered by the researcher. The main theme identified in the data was a journey of discovery that participants made when learning to live with dysphagia, this included three subthemes: 1) the story of their loss and how they learnt to manage; 2) engaging with support networks - both professional and through family and peers; and 3) limited community awareness amongst health professionals and the broader hospitality and general community. These experiences provide a rich understanding of the areas where people may require support beyond the physical management of the dysphagia.
Swallowing it whole: the physical and psychological consequences of dysphagia
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