The true cost of dysphagia on quality of life : the views of adults with swallowing disability

Abstract

Background Dysphagia impacts negatively on quality of life, however there is little in-depth qualitative research on these impacts from the perspective of people with dysphagia. Aims To examine the lived experiences and views of people with lifelong or ongoing dysphagia on the impacts of dysphagia and its interventions on quality of life, and barriers and facilitators to improved quality of life related to mealtimes. Methods & Procedures Nine adults with lifelong or acquired chronic dysphagia engaged in in-depth interviews and a mealtime observation. The observations were recorded and scored using the Dysphagia Disorders Survey (DDS). Interviews were recorded, transcribed and de-identified before content thematic and narrative analysis, and verification of researcher interpretations. Outcomes & Results Participants presented with mild to severe dysphagia as assessed by the DDS. They viewed that dysphagia and its interventions reduced their quality of life and that they had ‘paid a high price’ in terms of having reduced physical safety, reduced choice and control, poor mealtime experiences, and poor social engagement. As part of their management of dysphagia, participants identified several barriers to and facilitators for improved quality of life including: being involved in the design of their meals, being adaptable, having ownership of swallowing difficulties, managing the perceptions of others and resisting changes to oral intake. Conclusions & Implications This research improves understanding of the primary concerns of people with dysphagia about their mealtime experiences and factors impacting on their quality of life. Clinicians working with people with dysphagia need to consider how self-determination, autonomy and freedom of choice could be improved through involvement in food design of texture-modified foods. It is important that future research considers the views of health professionals on how these findings could impact on policy and practice particularly in ways to address the barriers and enhance facilitators to improved quality of life for people with dysphagia.