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

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. What this paper adds: What is already known on the subject Dysphagia impacts on quality of life, particularly as the severity of the dysphagia increases. Research to date has focused on people with dysphagia associated with an acquired health condition and has used quantitative assessment methods to measure quality of life. What this paper adds to existing knowledge This study provides a qualitative examination of the impacts of dysphagia on quality of life from the perspective of people with lifelong or ongoing acquired dysphagia and their supporters. This study also provides qualitative insights into the barriers and facilitators of mealtime-related quality of life. What are the potential or actual clinical implications of this work? Health professionals should engage in open communication with their clients with dysphagia regarding the impacts of dysphagia on their lifestyle and quality of life. By considering these impacts, health professionals may be able to recommend interventions that are more acceptable to the person with the dysphagia which may have a positive impact on their mealtime experience.