Title of the study: An exploration of the experience of stigma amongst people who have an acquired brain injury

 We would like to invite you to take part in a research study. This sheet will explain why the research is being done and what would happen if you took part. Someone will go through the information sheet with you and answer any questions you have before you decide if you want to take part. This should take around 30 minutes

Criteria for the study:

  • You must have acquired their brain injury at 18 years old or above
  • You must be at least 18 months post injury
  • You must not be currently undergoing active rehabilitation (medication usage is fine)
  • You must not have an obvious physical disability (i.e. wheelchair users)
  • You must be able to speak fluent English, be able to consent to the research and participate in a semi-structured interview

What is the research about?

This research is interested at looking at how individuals with a brain injury feel that they have been treated since their injury by their family, friends and the wider community, and how this made these individuals feel. It also interested in looking at whether people believe these experiences to be positive or negative and whether they believe anything has changed for them personally as a result of how they have been treated by people. I would like to invite you to consider taking part in this study. 

Why is the research being done?

This research is part of the Clinical Psychology training programme at the University of Hull. It is hoped this research will help to further understand how people with a brain injury feel that they are treated by their family, friends and community after their injury and whether these experiences are believed to be positive or negative. This research may be able to help inform strategies that will help people with a brain injury reintegrate into society and will aid the understanding of how people are treated after their injuries and how this makes those with a brain injury feel.

Why have you been asked to take part?

You have been asked to take part as you have experienced a brain injury and will have valuable knowledge and experience about what this is like and how people have treated you since your injury. A maximum of 8 individuals will be asked to take part as this is the recommended number of people to recruit for exploratory studies undertaken whilst on the university course.

Do I have to take part?

No. It is up to you whether you want to take part. The researcher (Emma Minns) will tell you about the research and go through this information sheet. If you agree to take part, you will then be asked to sign a consent form. You will be given a copy of the information sheet and the signed consent form.

What will happen if I take part?

If you would like to take part, you will be invited to an interview with the researcher which will last an hour or two. The interviews will take place either at your own home or somewhere else which is convenient for you. The interview will be at a date and time that are suitable for you. Interviews can also be conducted over the telephone or via Skype.

During the interview, you will be asked questions about how you feel that you have been treated since your head injury, how this made you feel and whether you think you have changed because of been treated this way.  You can answer all the questions or choose not to answer some if you don’t want to.

The interviews will be recorded so that they can be listened to and typed up later. All of the recordings and typed up interviews will be kept locked away and have no personal details on them.

What are the possible disadvantages/risks involved in taking part in this study?

As this research requires you to speak about how you have been treated since your brain injury, you may find this upsetting or distressing. If this happens, you will be provided with information about where you could go for support. You will be given this after the interview. However, you can also stop the interview at any time if you no longer want to continue. If the researcher becomes concerned about your well-being/safety they may share this information with your GP, but this will be discussed with you first. This information may also be shared with members of the team from The Encephalitis Society so you can be supported by them too but again this will be discussed with you first.

What are the possible benefits of taking part in this study?

Although there will be no direct benefit or payment as a result of your involvement in this study, some people find it useful to talk about their experiences. By taking part in this research you are also helping to add to the understanding of how individuals are treated by their family, friends and society and how this makes them feel. This may be able to help inform strategies that will help people with a brain injury reintegrate into society following their injuries. 

What will happen if I no longer want to take part in the research?

If you agree to take part in the research but then change your mind, that will not be a problem and you do not need to give a reason for this. You will just need to let the researcher know before they start analysing the data.

What if there is a problem?

If you are worried about any part of this study, you can speak to the researcher (Emma Minns: 07926566489) who will try to answer your questions. If you are still unhappy and want to speak to someone else, you can contact either of the researcher’s supervisors (details listed below) or the Associate Dean for Research, Faculty of Health and Social Care, University of Hull, Cottingham Road, Hull, HU6 7RX. 01482 463 342.

Will my details be kept confidential?

  • All of the information will be kept strictly confidential and anonymised so it will not be possible for anyone to know who you are.
  • All of your information will be stored securely in a locked cabinet at the University of Hull and eventually destroyed.
  • As this research is being used for a university course, this means that the research will be sent for assessment to the University of Hull. The research will also be sent to a journal, which means that anybody else who is interested in the research will be able to read it but this information will be anonymised beforehand.
  • The only time confidentiality may need to be broken is if the researched becomes concerned about your safety or somebody else’s.  The researcher will talk to you about this first, and think about who may need informing.

What will happen to the results of the study?

After the study is completed the results will be written-up as part of the researcher’s thesis and may be submitted for publication in an academic journal or presented at conferences. Some direct quotes from your interview may be used in the write-up but none of your personal details or any identifiable data will be included.

Who is organizing and funding the study?

The researcher is a doctoral student in Clinical Psychology at the University of Hull who is also employed by the Humber NHS Foundation Trust. This study is part of the university course. Research expenses are being provided by the University of Hull.

Who is reviewing this research?

All research at the University of Hull is checked by a group of people, called a Research Ethics Committee. This study has been looked at and agreed by the Faculty of Health and Social Care Research Ethics Committee.

I am interested in participating and would like further information

If you are interested in participating please:

  • Contact the researcher via the details on the following page.
  • The researcher will then contact you to arrange an initial telephone conversation where they will check your eligibility for the study, go through the information sheet and provide an opportunity for questions.  Following this, you will have up to 2 weeks to decide whether you want to participate or not. If the researcher has not heard back from you after two weeks they will contact you via your preferred means to see if you wish to take part and arrange a meeting.

Further information and contact details

If you would like any further information about this research, please contact me (the researcher):

Emma Minns

The Department of Health and Psychological Wellbeing

Aire Building, University of Hull

Cottingham Road

Hull

HU6 7RX

Telephone: 07926566489 (please leave a message if the call is not answered and the researcher will get back to you)

E-mail: [email protected]

This research project is being supervised by:

 Dr Tim Alexander and Dr Pete Fleming

The Department of Health and Psychological Wellbeing

Aire Building, University of Hull

Cottingham Road

Hull

HU6 7RX

Telephone: Tim Alexander: 01482 464030; Pete Fleming: 01482 464117

E-mail: [email protected]; [email protected]