Study: How do people with swallowing difficulties decide what to eat and drink?

[Admin_MND]

Investigating how people with swallowing difficulties decide what to eat and drink.

MND can cause swallowing difficulties which can have a serious effect on a person's health and wellbeing. This study aims to understand how people with swallowing difficulties make decisions about what to eat and drink by allowing participants to share their experiences and to read the experiences of others. Understanding how people decide what to eat and drink will help healthcare professionals to have conversations with patients about their swallowing difficulties and eating/drinking.

What does taking part involve?

There are two parts of taking in this study, both ways can be completed online through the study’s website. The two parts are:

• ‘Share your story’ – this is where participants can type in their experience of having swallowing difficulties.
• Completing a questionnaire about decision-making around eating and drinking.

Who can take part?

• People living with MND
• Experience swallowing difficulties

All participants must have access to the internet to be able to access the website.

How can I take part?

To take part please follow go to the study's website.

To find out more information please visit the MND Association website, or contact the projects research, Sally Pratten, on [email protected].

[DeeH]

Interested on behalf of my husband. This is were we are at the moment.

Will check out the links

[Ellie]

Just a heads up on the questionnaire: it's a generic dysphagia questionnaire, not MND-specific, and you will see references to "improvement" in function - a tad off putting I have to say...

[salpratten]

Interested on behalf of my husband. This is were we are at the moment.

Will check out the links

Hi Donna, thanks for your interest in the study. Let me know if you need any further information. Best wishes, Sally

[salpratten]

Just a heads up on the questionnaire: it's a generic dysphagia questionnaire, not MND-specific, and you will see references to "improvement" in function - a tad off putting I have to say...

Hi Ellie, thank you for your feedback which I take on board.

Absolutely - the study is focused on dysphagia as a result of any diagnosis so not MND specific, but we'd really welcome input from those with an MND diagnosis.

We have aimed to give participants the option to express changes in their dysphagia - whether that is an improvement or worsening of symptoms over time.

We'd really like to understand the different decisions faced by individuals with different diagnoses.

Please let me know if I can help in any other way.

Best wishes, Sally

[Ellie]

Thanks for replying Sally.

We'd really like to understand the different decisions faced by individuals with different diagnoses.

Obviously I completed the survey, and was happy to do so.

I'm not complaining, honestly, I'm just a gobby mare 😉😃

To me, dysphagia means not only the pure mechanics of swallowing but also associated factors including how it affects appetite; the decision as to get a feeding tube or not; the psychological impact of social eating and drinking (with dysphagia); saliva management; oral health - I don't know if the questionnaire is part of a wider project, but it didn't give any scope to drill down into what dysphagia really means to people. xx

[salpratten]

Thanks for replying Sally.



Obviously I completed the survey, and was happy to do so.

I'm not complaining, honestly, I'm just a gobby mare 😉😃

To me, dysphagia means not only the pure mechanics of swallowing but also associated factors including how it affects appetite; the decision as to get a feeding tube or not; the psychological impact of social eating and drinking (with dysphagia); saliva management; oral health - I don't know if the questionnaire is part of a wider project, but it didn't give any scope to drill down into what dysphagia really means to people. xx

Hi Ellie,

Thank you and not at all - I really appreciate the feedback. Thank you for completing the questionnaire as well!

I totally agree and whilst the questionnaire asks quite specific questions, the other part of the study asks participants to share their experience of dysphagia, hopefully allowing you to express all of these issues which are so incredibly important.

Stories and experiences can be shared here: https://www.swallowingresearch.com/share-your-story

Thanks again,
Best wishes,
Sally

[John D]

Done, Don’t think I was very insightful in telling my story.

[Ellie]

... the other part of the study asks participants to share their experience of dysphagia, hopefully allowing you to express all of these issues which are so incredibly important.

Yes, I saw that Sally and, much as I'd like to write and share my story with dysphagia, like many with ALS/MND, I cannot use my hands to type (my arms are paralysed), and use eye gaze to control my PC which makes writing even mid-length prose a laborious task.

I'm sure others, less disabled, will share their experiences with you and I wish you all the best in the study. xx

[salpratten]

Done, Don’t think I was very insightful in telling my story.

Hi John, thank you for taking part, your input is much appreciated.
Best wishes, Sally

[salpratten]

Yes, I saw that Sally and, much as I'd like to write and share my story with dysphagia, like many with ALS/MND, I cannot use my hands to type (my arms are paralysed), and use eye gaze to control my PC which makes writing even mid-length prose a laborious task.

I'm sure others, less disabled, will share their experiences with you and I wish you all the best in the study. xx

Thanks Ellie, I understand. I'd love to do more with the research in the future and to give more time to enabling people to share more easily.

Thank you so much for taking the time to complete the questionnaire, it is much appreciated.

Best wishes, Sally