Fears of Living with Dysphagia

[Editors note. We would like too thank each and every one of the 180 participants that took place in this dysphagia “Fear” survey. As someone who suffers from dysphagia and their caregivers, we hope this provides you with some knowledge that you are not alone in your fears; as a professional who supports this community, we hope this provides you with a unique insight in to the fears faced by your patients. Please feel free to provide comments at the bottom of this article.] 

The NFOSD was contacted a few months ago by the caregiver of a family member with dysphagia. She claimed that choking is the number one fear of both those suffering from a swallowing disorder and their care providers. While this certainly may be true of this individual’s situation, the question of fear in the swallowing challenged-community piqued our interest. To help gain insight into this question, we reached out and asked our community members to see what fears they face when living with dysphagia.

The NFOSD Team designed a 3-question survey which was available online for three weeks. We collected 180 responses. Approximately 80% of the responses were provided from professionals (e.g., speech-language pathologists) and about 20% were from patients with dysphagia or their caregivers.

The survey was composed of the following three questions:

1) What category best fits you (e.g., professional, dysphagia sufferer)?

2) What fears do patients with dysphagia face?

3) Other feedback or thoughts.

The raw results are presented in the three tables below. Table one is all responses. Table two is responses from those that suffer from dysphagia and their caregivers, and table three is responses from the professional community that supports those suffering from dysphagia.

Responses from all survey participants

Responses from those suffering from dysphagia and their care givers

Responses from the professional community who supports the dysphagia community

Looking at all 180 responses, we calculated the most significant fear of living with dysphagia by adding the number of respondents who selected “significant fear” or “extreme fear” in each category.  Overall, the three greatest fears were:

1) Facing a Feeding Tube

2) Choking or Suffocating

3) Dependency on Loved Ones/Caregivers.

We also wanted to determine if there was a difference between the answers provided by the patients/caregivers versus that of the professional community who supports dysphagia sufferers. We used the same method as described above to calculate the greatest effects of living with dysphagia. This table summarize these results.

As you can see in the above table, the results were different depending on who one asked. This may help the professional community better understand the fears of their patients.

There was also a space available for respondents to type in fears that were not already listed, which helped provide greater insight into other fears that are faced by those living with dysphagia.  These responses included:

“Never recovering”

“Not being able to swallow normally again”

“Losing electrical power and be unable to make my drinks in the blender”

 “Decreased enjoyment of life”

“Never enjoying a meal”

“Throwing up in social situation”

The survey shows that those with dysphagia face a variety of significant fears.  There is not just one aspect that is “most feared” by someone living with dysphagia. Each patient and swallowing disorder is unique, and it is important to recognize that a wide variety of fears can accompany a swallowing disorder.