Name of Researcher:  Ellie Johnson, Manchester Metropolitan University


  1. Invitation paragraph

You are being invited to take part in a research project. This would involve a short interview over the phone or online, to discuss your experiences with encephalitis support systems. Before you decide on whether to take part, it is important for you to understand why the research is being done and what it will involve. Please take time to read the following information carefully before you decide whether you wish to take part. You are welcome to discuss this project with others if you wish before you make your decision. Please contact Ellie Jo

  1. What is the purpose of the study?

The primary purpose of this study is for the completion of a dissertation is a part-requirement of my programme of study, and I am stemming this from my previous research from my BSc Psychology (Hons) degree.

There is currently little research that addresses families experience of the support systems available once a diagnosis of encephalitis has been proclaimed. It is my aim to gain a deeper understanding on the topic area.


  1. Why have I been invited to take part?

You have been invited to take part in this study because of your experience as a relative of a family member diagnosed with encephalitis.


  1. Do I have to take part?

Participation is voluntary. Please read this information sheet carefully to help you decide. If you have any questions, I will be happy to answer them and can be contacted on the email address above. If you do decide to take part, you will be given this information sheet to keep (and be asked to sign a consent form) and you can still withdraw at any time without it hnson at the e-mail [email protected] if there is anything that is not clear or if you would like more information.

affecting any benefits that you are entitled to in any way. You do not have to give a reason and have 2 weeks to withdraw from the end of the interview. You must contact the principal investigator via email, should you wish to withdraw after the interview. This time restriction is in place to also give you adequate time to reflect on the interview, but not impact the investigation process.


  1. What will happen to me if I take part?

If you decide to take part, a time and date convenient for you to attend the interview will be agreed with the researcher. Immediately prior to the interview you will be asked to sign the consent form which indicates that you understand and agree to the study. The interview will be arranged to take place online via Microsoft Teams/Over the phone and is expected to last approximately 45 minutes. During the interview you will be asked about your experiences during the time of your relative’s encephalitis experience, the help you received and your opinions on the topic. Questions will be open-ended (you can answer as much/little as you want).

If you feel uncomfortable at any time during the interview you are free to refuse to answer any questions or to terminate the interview. For the purposes of analysis, the online interviews will be recorded using "record" function on Microsoft Teams and will be stored as a file on a password protected computer which is only accessed by the researcher and supervisor. Over the phone interviews will using an encrypted recording device.

You will only be required to attend one scheduled interview. Following the interview, you will be debriefed on the study and any questions you may have will be answered.

 The audio and/or video recordings of your activities made during this research will be used only for reports/dissertation and/or publications. The recording of the interview will then be transcribed for analysis. Direct quotes of the interview will be used in the analysis write-up of the dissertation but will be anonymised. No other use will be made of them without your written permission, and no one outside the project will be allowed access to the original recordings.


9.  What if there is a problem?

If you have a concern about any aspect of this study, you should ask to speak to myself by email [email protected] who will do their best to answer your questions.

Following this, if you have any issues or complaints, you may contact the research supervisor Dr Iryna Culpin by email: [email protected]

If you have any concerns regarding the personal data collected from you, our Data Protection Officer can be contacted using the [email protected] e-mail address, by calling 0161 247 3331 or writing to Data Protection Officer, Legal Services, All Saints Building, Manchester Metropolitan University, Manchester, M15 6BH.

You also have a right to lodge a complaint in respect of the processing of your personal data with the Information Commissioner’s Office as the supervisory authority. Please see: or email the Chair of the Faculty of H&E Research Ethics and Governance Committee, Dr Claire Fox, at [email protected]