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 andThis is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made.

Early Feasibility of an Activity-Based Intervention for Improving Ingestive Functions in Older Adults with Oropharyngeal Dysphagia

“…This is stricter than the approach in Carnaby et al [ 13 ] in which up episodes of clinical signs of aspiration of up to 40% are accepted before reversion [ 14 ]. Since enjoyment and feeling safe without aspiration during ingestion and mealtimes are perceived as essential in older adults with OD [ 52 ], the strict criterion in the ACT-ING program might have contributed to the intervention tolerance, perceived usability, and acceptability.…”

Malnutrition in aged care: interplay between dysphagia and diet

“…Dysphagia has a significant effect on the quality of life, with contributing factors including poorer mealtime experiences and feelings of loss of choice [38]. Carer burden and dysphagia have received attention recently.…”

Dysphagia, health-related quality of life, and return to work after occipitocervical fixation

“…However, at long-term follow-up (12–72 months), resolution of the swallowing difficulties was seen in one-third of these patients [ 28 ]. Efforts to predict and prevent postoperative dysphagia are crucial as this complication has been associated with prolonged hospital stay, reduced health-related quality of life (HRQoL) [ 25 ], and increased mortality [ 3 , 11 , 12 , 20 , 27 , 30 ]. In a systematic review, several pre- and post-operative radiographic measurements were found to correlate with the occurrence of dysphagia in patients undergoing OCF [ 28 ] (Fig.…”