‘I only eat because I have to—to live’: The impacts of dysphagia on quality of life from the perspectives of people with dysphagia, supporters of people with dysphagia and allied health professionals

Abstract

Background

A recent literature review identified that past research has described the impacts of dysphagia on quality of life; but there is limited research on these impacts from the perspective of people with dysphagia, their supporters and allied health professionals. Recent qualitative research has provided details about these perspectives, but researchers have also called for verification of these findings with a larger group of participants.

Aims

To expand upon the findings of the prior qualitative research on the views of people with dysphagia, supporters of people with dysphagia, and allied health professionals on the impacts of dysphagia and texture-modified food on quality of life.

Methods & Procedures

An online survey of adults with dysphagia (n = 30), supporters of people with dysphagia (n = 4) and allied health professionals (n = 18) was conducted between November 2021 and February 2022. Categorical questions were analysed descriptively and open-ended questions were analysed for content categories of meaning.

Outcomes & Results

Participants with dysphagia reported that dysphagia and texture-modified foods had a greater impact on their physical health than on their choice and control or social engagement. Supporters and allied health professionals viewed that dysphagia impacted the physical health and their choice and control of people with dysphagia. Across groups, participants considered that mealtime enjoyment, participation, and inclusion were influenced by the control the person had over their meals, the accessibility of the mealtime environment, and the attitudes of others.

Conclusions & Implications

Dysphagia and its interventions negatively impact quality of life for people with dysphagia. People with dysphagia were the most affected by the physical impacts of dysphagia. Their perspectives contrasted with those of supporters and allied health professionals in some domains, highlighting the need for people with dysphagia to be included in research. Future research exploring how these perspectives are integrated into person-centred dysphagia management is warranted.

WHAT THIS PAPER ADDS

What is already known on the subject

• Recent qualitative research has provided insights into the impacts of dysphagia on quality of life from the perspective of people with dysphagia, supporters of people with dysphagia, and allied health professionals. However, the small scale of these studies means that further research is needed with a larger group of people with dysphagia, supporters of people with dysphagia, and allied health professionals.

What this paper adds to existing knowledge

• This paper verifies and extends upon the findings of prior qualitive research on the views of people with dysphagia, supporters of people with dysphagia, and allied health professionals on the impacts of dysphagia and its interventions on quality of life, participation, and inclusion.

What are the potential or actual clinical implications of this work?

• This research shows the importance of supporters of people with dysphagia and allied health professionals discussing mealtime quality of life with the person with dysphagia so that their perspectives are considered in the mealtime decision-making process. Furthermore, people with dysphagia should be able to specify strategies they want to trial to enhance their mealtime participation and inclusion.