Survey for Carers of Individuals Living with Neuromuscular Disease & Swallowing Difficulty


You are invited to take part in this survey. Before deciding whether to participate, it is important for you to understand the purpose of the study and what it involves for you.

What is the purpose of this study?

This study aims to understand the impact of swallowing difficulties and priorities for individuals and their carers who live with a neuromuscular condition.

The survey will explore your experience and opinions of caring for somebody with swallowing difficulties, how this affects you day-to-day and what swallowing-related healthcare services should be made available.

The findings will be statistically analysed. We look for common themes, patterns and relationships in the responses.

Why have you been invited to take part?

You have been invited to take part in this study because you are a primary care-giver (or family member) for an individual living with swallowing difficulties and a neuromuscular condition.

The survey is open to carers of individuals with any neuromuscular condition living across the UK.

Do you have to take part?

It is up to you to decide whether or not to take part. If you do decide to take part after reading this information, you will be asked to tick a box indicating your consent. You can still withdraw your consent by not clicking the 'submit survey' button at the end of the survey. You do not have to give a reason. If you decide to submit your survey, your data cannot be removed from the study and will be included in the final analysis of all the completed surveys.

What would taking part involve?

If you decide to take part, you will be asked to complete a survey consisting mainly of multiple choice questions but also free-text questions.

The survey is expected to take approximately 15 minutes to complete. Once completed, please click on the submit button. You do not have to complete your survey in one sitting however partially completed surveys, or surveys where the submit button was not clicked, will not be retained or used in the final analysis.

All the questions require an answer to be attempted, and you will not be able to proceed with the survey, unless all questions have been answered. There is a back button to allow you to return to questions answered on previous pages and your answers will be saved every time you move to the next question. This will allow you to complete the survey in more than one sitting; however, we ask that you do not take longer than two weeks to complete the survey.

The electronic survey contains a tracking bar so that you can see how far you have progressed through the survey. Paper versions of the survey are available.

What possible disadvantages and risks are there in taking part?

There should be no risks associated with taking part in this study. The only consideration is devoting some time to complete the survey.

What are the possible benefits of taking part?

Your participation will help further the understanding of health professionals in how best to support people living with swallowing difficulties and a neuromuscular condition. It will also help design future research studies.

What will happen to the data collected and the results of the research project?

All the responses from the survey will be stored securely on an encrypted device at The National Hospital for Neurology and Neurosurgery. This data will be accessed on computers that are password protected.  Upon closure of the survey, all the anonymised responses will be analysed. Only the principal investigator and the study supervisor will have access to the data i.e. the responses made to the survey questions. The findings and a report from this study will be submitted to peer review journals, professional publications or academic and patient conferences. The data collected will be stored on the encrypted hospital drive for one year from the closing date of the survey.

Will your contribution to the study be kept confidential?

All responses to this survey are anonymous. If you choose to provide identifiable information this will only be accessible to the members of the research team. You will not be identified in any reports or publications.

How will we use information about you?

Whilst we will need to use information from you for this research project, we do not need to be provided with any personal information such as your name, age or contact details. If you do choose to provide these details your information will be kept safe and secure. People who do not need to know who you are will not be able to see your name or contact details. Your data will have a code number instead.

Once we have finished the study, we will keep some of the data so we can check the results. We will write our reports in a way that no-one can work out that you took part in the study.

What are your choices about how your information is used?

If you choose take part in this study and respond to the survey, you will have the option to take part in future research using your data saved from this study.

Where can you find out more about how your information is used?

You can find out more about how we use your information at or by asking one of the research team whose details are listed below.

Who is funding the research? 

There is no funding for this research other than primary research time and training which is funded by National Institute for Health Research.

If you are unhappy about the way the research is conducted, you can make a complaint. If you wish to raise a complaint you can contact the primary researcher via the contact details at the bottom of this information sheet. If you feel your complaint has not been handled to your satisfaction, you can contact the chief investigator Dr Christina Smith. If the complaint relates to how your data has been handled, you can contact the UCL Data Protection Officer available via

If you do not feel your complaint has been handled to your satisfaction by following the above procedures, you can contact the Commissioner’s Office.

Many thanks for your participation in this study.

Contact for further information

Name and contact details of the primary researcher:

Jodi Allen 07958 263154


Name and contact details of the project supervisor:
Dr Christina Smith