Study title: The impact of perception of illness and coping style on anxiety and depression in Lupus SLE (systemic lupus erythematosus) patients

Invitation paragraph

We would like to invite you to take part in our study. Before you decide, we would like you to understand why the research is being carried out and what it would involve for you. The researcher, Munaza Zafar, will be available to answer any questions you may have. Please take time to review the information provided in this pack and decide upon your participation. We would normally advise a 24-hour period before consenting to any research project. This information sheet tells you the purpose of this study and what will happen to you if you take part.

What is the purpose of the study?

There has been various research which has found that depression and anxiety is prevalent in SLE patients. Whereas research has not focused on why this is the case. This research study will focus on perception of illness and coping style in SLE patients as possible reasons for the prevalence of depression and anxiety

Do I have to take part?

Participation is entirely voluntary. It is up to you to decide whether or not to join the study. If you agree to take part, you will need to sign an informed consent form prior to the starting the survey.  

What will happen to me if I take part?

If you agree to take part, you will be directed to the consent form. Once the consent form has been filled out; you will be directed on screen to the first questionnaire. After all four questionnaires are completed, the debrief form will be displayed. All data will be stored securely. Identities will be kept confidential at all times and data will not be shared with any other party.

If you would like to receive a short summary of the results, please leave your contact details at the end of the questionnaire. A short summary of the results will be e-mailed to you once the analysis is completed.

Expenses and payments

You will not receive any payment for participating in the study.

What will I have to do?

At the end of the information sheet, a link providing access to the survey is displayed. Simply click on the link and you will be redirected to a secure and dedicated website. The survey consists of a set of questionnaires. The questions only need simple clicks. You will be asked to indicate the degree of agreement on each. The questionnaire should take no longer than 15 minutes to complete.

What are the possible disadvantages and risks of taking part?

Given the sensitive nature of the study, it is possible that you may feel emotional.   Should you feel distressed, please stop answering the survey and contact one of the following: the researcher on 21424936@student.uwl.ac.uk or the UWL wellbeing team on 02082312739 or wellbeing@uwl.ac.uk. Or your personal GP, or the lupus society https://www.lupusuk.org.uk/

What are the possible benefits of taking part? 

The study might not help you directly. The results from this study will be used to identify potential interventions that may be used to assist individuals suffering from depression and anxiety while being treated for SLE.

 What if there is a problem?

If you have a concern about any aspect of this study, please speak to the researcher who will do her best to answer your questions. Any complaint about the way you have been dealt with during the study or any possible harm you might suffer will be addressed.

You can contact either one of these:

-        The researcher on 21424936@student.uwl.ac.uk

-        Anne Manyande (supervisor) on anne.manyande2@uwl.ac.uk

-        The UWL wellbeing team on 02082312739 or wellbeing@uwl.ac.uk.

-        Or your personal GP

-        The lupus society https://www.lupusuk.org.uk/

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

If you change your mind and decide that you do not want to participate in the study, you can withdraw at any time. You do not need to give a reason and your legal rights will not be affected. If you withdraw from the study, we will completely remove your data from our records.

Will my taking part in this study be kept confidential?

Yes. We will follow ethical and legal practice and all information about you will be handled in confidence. Your identity and all the information about your participation will be kept confidential. The identity of your healthcare professional will be kept confidential too. We will take care to respect your confidentiality throughout the project. If you join the study, we will choose a unique code number for you and use that instead of your name in all future documents.

All the information we collect for the study - consent forms, recordings and so on - will be stored carefully. The custodian of the data will be the researcher, Munaza Zafar, from the University of West London.

Involvement of the General Practitioner/Family doctor (GP)

Your GP will not be informed of your participation in the study.

What will happen to the results of the research study?

We will report the results of the study in a research report, which may be published as a paper in a journal and in conference presentations. A brief summary of the study results will be available. If you are interested in getting a summary of the results, please talk to the researcher and we will send you a copy.

Who is organising and funding the research?

The work is being carried out as part of a master’s dissertation at the University of West London.

Who has reviewed the study?

This study has been reviewed and approved by the University of West London Ethics Committee.

If you want to contact us.

If you want to contact us, you can do so by:

Email: 21424936@student.uwl.ac.uk

What now?