"My father died asking me for a glass of water": The lived experience of supporting a family member with dysphagia secondary to a progressive diagnosis.

Abstract

• The nature and presentation of oropharyngeal dysphagia exists as a multifaceted entity. However, the effects of the disorder are often cited as the physical manifestation with which it is associated. • Current guidelines highlight the importance of holistic, person-centred care, and consideration of not only the physical effects, but also the psychosocial impact of dysphagia on the individual [1]. • Research in the area has confirmed that the effects of dysphagia cannot be confined to physiological elements of the condition, in that it affects day-to-day life, and overall quality of life [2]. • With the effects of dysphagia being apparent in a person’s everyday routine and indeed, social situations, the family unit are also affected by the psychosocial impact of dysphagia [3]. • As such, the current study explored the lived experience of oropharyngeal dysphagia on family members who support those living with the diagnosis.