This research project is being undertaken with the support of the European Academy of Neurology and the European Association for Palliative Care and is led by Professor David Oliver, who is Co-Chair of the EAN Palliative care Specialist Panel and Chair of the EAPC Reference Group on Palliative care and neurology. He is an Honorary Professor based within the Tizard Centre at the University of Kent, Canterbury.
We would like you to take part in this study. Before you decide please take time to read the below information. Feel free to discuss this project with others.
What is the purpose of the study?
The aim of this study is to understand more about the collaboration between neurology and palliative care in the care of patients with neurological disease across Europe.
Who is being asked to take part in this study?
We are asking all neurologists who are members of the EAN and palliative care specialists who are part of the EAPC network.
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. You will not need to give a reason
What are you asking me to do?
We would like you to complete an online questionnaire to provide information on areas of your work, the members of the team, the presence / absence of collaboration, attitudes to palliative care and neurology, and to future developments. There will also be free text areas where you may provide further information. The information will be anonymous.
What are the possible benefits?
The information gained will allow further discussion and development of services for people with neurological disease and will help in the development of further guidelines, documents and educational activities.
What are the possible disadvantages?
The questionnaire will take a short time to complete (10-15 minutes), but it has been kept as easy as possible.
Will taking part in the study be confidential?
Yes. This study will comply with the General Data Protection Regulation 2016/679. All information will be kept confidential. Your information will not be passed on to anyone else outside of the research team
Your information will be stored on a password-protected university network. The information from the project may be used within the EAN and EAPC to help develop the collaboration between neurology and palliative care, to inform an article for publication in an academic journal and provide the foundation for more research in this area. 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.
You may give your contact details at the end of the questionnaire, if you wish to receive a summary of the results or if it would be agreeable for the research team to contact you for further information. These details will be kept separately from the questionnaire itself to retain anonymity.
Who has reviewed this study?
The Tizard Centre Research Ethics Committee at the University of Kent, where Professor Oliver is a member of faculty, reviewed this research project and gave permission for this information sheet to be given out to professional carers. This does not mean that you have to take part; it is completely your choice.
Professor David Oliver
University of Kent
Canterbury CT2 2NF
Tel: +44 (0) 1227 827373
If you have a complaint or any concerns about this research project please contact: Jo Ruffells, Tizard Centre, Cornwallis North East, University of Kent, Canterbury, CT2 7NF.
Tel: +44 (0) 1227 827955
By starting the questionnaire you will be deemed to have given consent.