Name of Researcher:  Ellie Johnson

Invitation paragraph

You are being invited to take part in a research project. 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 or not you wish to take part. You are welcome to discuss this project with others if you wish before you make your decision. Please contact [email protected] if there is anything that is not clear or if you would like more information.

What is the purpose of the study?

The primary purpose of this study is educational as completion of a dissertation is a part-requirement of my programme of study. There is currently little research that addresses what families go through when a loved one is diagnosed with encephalitis, consequently, it is my aim to gain a deeper understanding on the family experience of encephalitis.

Why have I been invited to take part?

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

Do I have to take part?

 It is up to you to decide whether or not to take part. 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 affecting any benefits that you are entitled to in any way. You do not have to give a reason. If you do withdraw you should, however, note that the University will continue to process the information you have already provided. It will only do this for research purposes and in an anonymised way and in a way that you cannot not be identified.

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 and is expected to last approximately 45 minutes. During the interview you will be asked about your experiences during the time of your loved one's diagnosis of, and recovery from, encephalitis. 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 interview will be recorded using the software's "record" function, and will be stored in a file on a password protected computer which is only accessed by the researcher and supervisor. 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 recording of the interview will then be transcribed for analysis. The audio and/or video recordings of your activities made during this research will be used only for analysis and for illustration in conference presentations and lectures. 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.

Expenses and payments?

There are no payments for taking part in this study.

What are the possible disadvantages and risks of taking part?

 Whilst it is not anticipated that taking part in the interview will be upsetting, the interview will address a difficult time in your life, therefore, before participating you should be fully aware of the aims of the study and discuss any concerns you may have with myself in order to inform your decision about taking part. You may decline to answer any question you feel may feel you do not wish to answer, and you may terminate the interview at any time without prejudice. You will find a helpline number at the end of this information sheet should you feel you need to talk to someone further about your experiences.

 What are the possible benefits of taking part?

 We cannot promise the study will help you but the information we get from the study will help to increase understanding of the broader impact of a diagnosis of encephalitis – Your participation in this research helps to do that.

 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 Lynne Marrow by email: [email protected]

 If the matter is still not resolved, please forward your concerns to Dr Linda Dubrow-Marshall, Co-Chair of the Health Taught Ethics Panel, Allerton Building, Frederick Road Campus, University of Salford, Salford, M6 6PU, [email protected], or Dr Rod Dubrow-Marshall, Acting Co-Chair of the Health Taught Ethics Panel, Allerton Building, Frederick Road Campus, University of Salford, Salford, M6 6PU, [email protected]

 

 Will my taking part in the study be kept confidential?

 Although this will be an anonymous interview, you will be asked your age, gender, and relationship to the patient. All information which is collected about you during the course of the research will be kept strictly confidential. The recordings of the interviews for the study will be only accessible to the researcher. These digital recordings will be kept on a password protected drive owned by the University of Salford and accessed only by the researcher. Your data will be given a code number and will not be stored alongside your name. The dissertation will be written in such a way, that the identity of any individual will not be apparent. Any data transported using a USB memory stick will be identifiable only to the researcher by the participant’s code. Following University guidance, your data will archived for a minimum of 3 years, after the graduate award has been made, to allow verification of data from external sources if necessary, after which time it will be destroyed.

 Please note that your anonymized data (including any personal data and special categories of personal data processed according to conditions of article 6 (paragraph 1(a)) and article 9 (paragraphs 2(a) and 2(j)) of the General Data Protection Regulation (GDPR) 2018 respectively) will be used in the researcher’s data analysis and dissertation as part of a degree course, and potentially in any related publications or conference presentations/further research in the future.

 What will happen if I don’t carry on with the study?

 If you withdraw from the study, we will destroy all your recorded interviews, but we will need to use the data collected up to your withdrawal.

I may keep the data and use it in future studies. If this occurs, it will only be in a completely anonymised fashion.

What will happen to the results of the research study?

 The interview will be transcribed and analysed by Interpretative phenomenological analysis. The information you provide will be collated with that from other participants to be written up as a dissertation which is a part-requirement for an Honours Degree in Psychology. If you are interested in finding out the results of the study, a copy of the final dissertation could be made available to you following a formal request.

 Who is organising or sponsoring the research?

 The University of Salford

 Further information and contact details:

 

[email protected]