Page 1: Information and Consent

Information Sheet

LIVERPOOL HOPE UNIVERSITY

RESEARCH INFORMATION SHEET


Outline of the research

The cause and psychological effects of Behçets disease are still yet to be fully understood. The diagnostic criteria for the disease are still being developed and patients are frequently misdiagnosed. These aspects of Behçets disease result in unique combinations of cognitive and emotional components of illness perception.Illness perception has been shown to have a significant impact on the way patients with long-term conditions cope with their illness.

To understand the psychological factors underlying illness perception in people with Behçets symptoms, it is important to study these symptoms not only from a medical point of view, but also from the patients’ perspective. By examining how people suffering from Behçets disease perceive their health status and how they try to cope with pain, depression and anxiety will help to define typical behavioural characteristics for adaptive and maladaptive coping. This will enable us to advise GP’s and clinical practicioners who work with patients about the underlying psychological factors that impact on  this disease which could be used to help develop specialised programmes to support Behçets disease patients and their families.

 

Who is the researcher?

Names: Alla Yankouskaya, Jane McCagh, Funmi Adeyo

Institution: Liverpool Hope University

Researcher’s University email addresses: yankoua@hope.ac.uk, mccaghj@hope.ac.uk, 17010354@hope.ac.uk

 

What will my participation in the research involve?

You will be asked to fill out an online questionnaire that will assess the severity of your symptoms, affect, your coping stratergies and how you perceive your health status.

 

Will there be any benefits to me to taking part?

There will not be any direct (one-to-one) benefit to you for taking part in this study. However, this project will contribute to further research, particularly the updating of Behçets Syndrome Society Medical Fact Sheets, and will further develop understanding of the psychological mechanisms underlying Behçets disease. This will then help patients and health providers to work together to improve quality of life. 

 

Will there be any risks to me in taking part?

There will be minimal risks to you taking part in this study.

 

What happens if I decide that I don’t want to take part during the actual research study, or decide that the information given should not be used?

It is up to you to decide if you would like to take part in this study. By going on to answer the questions on the survey you will be confirming that you:

-Have read and understood this information page for the project,

-Understand that your participation is voluntary and that you are free to withdraw at any point without giving any reason,

-Agree to take part in the research project and for the anonymised data to be used as the researcher sees fit, including publication.

 

You can contact us via email (yankoua@hope.ac.uk, mccaghj@hope.ac.uk, 17010354@hope.ac.uk) or withdraw at any point without giving a reason.

 

Will I know the results of this study?

Yes. Once the data is collected and analysed, the researchers will provide  access to the results. We will present the results in non-scientific words and will invite you to discuss these results via a forum. Your opinion is very important to us and all your suggestions will be taken into account.

 

How will you ensure that my contribution is anonymous?

The results from all individuals will be collected and analysed across  the group. This will allow us to identify the relationship between affect and perceived heath status in Behçets’ disease and whether there is a mediation effect of coping strategies.

It will not be possible to identify you in any report. Immediately after the study, your data will be coded and all personal information will be destroyed.

 

Please note that your confidentiality and anonymity cannot be assured if, during the research, it comes to light that you are involved in illegal or harmful behaviours which I may need to disclose to the appropriate authorities.

1.1. I confirm that I have read and understand the information sheet for the research project and have had the opportunity to ask questions. Required
2.2. I understand that my participation is voluntary and that I am free to withdraw at any time, without giving any reason. Required
3.3. I agree to take part in this research project and for the anonymised data to be used as the researcher sees fit, including publication Required