Welcome to the Survey

We invite you to take part in a study about how people with MND and their families have experienced the delivery of the diagnosis of MND and the consultation process with the neurologist. We appreciate your contribution to this study by completing this questionnaire.

People with MND and family carers are encouraged to complete the surveys independently. Those requiring assistance of family carers are urged to express their own opinions.

This research project is being run by a research team led by Professor Mary O'Brien from Edge Hill University and Professor David Oliver from the University of Kent, Canterbury.

We would like you to take part in this study. Before you decide please take time to read this information sheet. Feel free to discuss this project with others.

1.    What is the purpose of the study?
We would like to look at the way people with MND hear their diagnosis, in particular looking at the way the diagnosis is told to people, the information they are given and if the process is in line with the Guidance produced by the National Institute for Health and Care Excellence (NICE). We are also asking family/caregivers of people diagnosed with MND and neurologists who give the diagnosis of MND to take part in the study.

2.    Do I have to take part?
No. It is your choice. If you decide to take part you are still free to change your mind or withdraw at any time before you submit your questionnaire. You will not need to give a reason. Your decision will not at all affect the care you receive in any way.

3.    What will happen if I decide to take part in the study?
We would like you to complete a questionnaire asking about the experience of being told the diagnosis of MND. The questionnaire is on-line and accessed via a link from an e mail, newsletter or other study publicity sent to you. Paper copies of the questionnaire are available, if you prefer, by contacting the lead researcher - contact details below. Your consent to participate will be assumed by the submission of a completed questionnaire.

4.  What will happen if I don't want to carry on with the study?
You can withdraw any time up to submitting the questionnaire. Unfortunately, as the study is anonymous, you will not be able to withdraw your data once you have submitted your questionnaire as we won't be able to identify your specific responses from others we receive. This will not affect the care you receive from any of the services involved.

5.    Will my taking part in this study be kept confidential?
The questionnaire does not ask for any contact details or identifiable personal information. If any identifiable information is submitted it will be anonymised.  The study will comply with the Data Protection Act 2018. All information will be kept confidential.

Your research data will be stored on a password-protected university network for ten years after which it will be deleted. In the future we may share your research data with other researchers or relevant organisations with an interest in the topic, but you will not be identifiable as the data will be anonymous.

The information from the project will be used to inform articles for publication in academic journals and presentations at conferences. To ensure confidentiality where information is being used in publications, which will be seen by others, all information will be anonymised so that no-one who participated in the study can be identified.

6.    What will happen to the results of the study?
All the results will be kept confidentially and it will not be possible to identify any specific person within the results. A report will be completed and it is hoped that the results will be published in scientific papers, to enable neurologists and others involved in health and social care to be aware of the issues that are raised, so that there can be improvements to care.

7.    What are the possible benefits?
Some people might find it helpful to document their experiences and the report, and publications, may encourage changes in the way people are told their diagnosis of MND in the future.

8.    What are the possible disadvantages?
Some people may find documenting their experiences difficult. Information is provided about support groups if you do feel you would like to talk about these feelings further.

9.    Who has reviewed the study?
Permission for the study has been given by Edge Hill University Faculty of Health and Social Care Research Ethics Committee.

10.    What if there is a problem?
If you are unhappy with the research in any way please tell us - see contact details below. If you would prefer to talk to someone outside the research team, or if you are not happy with the way we deal with your problem, you can contact:

Professor Clare Austin who is the Associate Dean for Research and Innovation, Faculty of Health and Social Care, Edge Hill University on +44(0)1695 650772 or Austincl@edgehill.ac.uk

Thank you for taking the time to read this information sheet. If you would like any further information please do not hesitate to contact us.

For any further information please contact:

Prof. Mary O'Brien
Faculty of Health & Social Care, Edge Hill University, Ormskirk, L39 4QP
+44 (0)1695 650918; obrienm@edgehill.ac.uk
General Data Protection Regulations (GDPR) 
Information about how we handle your data is described in the participant information provided about the study. The following is additional information, including our Privacy Notice.

Privacy Notice
At Edge Hill University, we are committed to respecting and protecting your personal information. To find ways in which we use your data or information, please see edgehill.ac.uk/about/legal/privacy.

We ensure that our research serves the public interest by following the UK Policy Framework for Health and Social Care Research. Edge Hill University is the UK sponsor for this study and we are responsible for the proper use and storage of information that it collects. We will store anonymous research data about you for 10 years after the study has finished, but we will not collect or store any personally identifiable information about you as survey responses are anonymous.

If you wish to complain about how we have handled your personal data, you can contact our Data Protection Officer (dataprotection@edgehill.ac.uk) and if you are not satisfied with our response, or believe we are processing your personal data in a way that is not lawful, you can complain to the Information Commissioner's Office (ICO).

Question Title

* 1. How was this survey completed?