Participant Information Sheet

Understanding difficult emotions about yourself in the cancer treatment journey

My name is Selane Rigby and I am conducting a study as a trainee clinical psychologist at Lancaster University, Lancaster, United Kingdom. I am interested in the feelings people have about themselves during cancer treatment. I am looking for volunteers to take part in a study which will involve talking to me on a one to one basis about these feelings. However, before making any decisions about whether you might want to be interviewed, I would like to ask that you read the study information below, to ensure that any decision to participate is right for you.

What is the study about?

The study is concerned with how we feel about ourselves during treatment for any cancer. How we feel about ourselves can affect how we are able to live our lives or behave. Some people can find that they experience difficult feelings, such as guilt, shame, or disgust about themselves, throughout the course of their cancer treatment.

People who experience difficult emotions about themselves can, at times, think of themselves in negative ways and can also feel that others avoid them as a result. I am interested in the personal stories of people who have experienced these emotions at any point within their cancer treatment journey.

Why have I been approached?

You have been approached because the study requires information from people who: -

  • have experienced difficult emotions about themselves (described above)
  • are over the age of 18
  • are no longer in active treatment for cancer.

Do I have to take part?

No. It's completely up to you to decide whether or not you take part. The researcher is completely independent from any organisation involved in your care and your decision whether or not to take part will not affect any services you receive in any way. If you do decide to take part, but then change your mind, you can withdraw from the study up to the point when the research is written up ready for submission.

What will I be asked to do if I take part?

If you decide you would like to take part, you would be asked to take part in an interview at a time and date and venue to suit you. I will ask if you have any special requirements before the interview to make your experience comfortable. The interview will be recorded, with your permission, on a dictaphone and will usually last around 60 minutes. You will be asked to share your story about your experience of emotions throughout your cancer journey. It will be up to you to decide how much or little you would like share. At the end of the interview you will have a chance to ask questions and feed back your experience of the interview. The interview will then be typed up by the interviewer. Any information that could lead yourself or others being identified will be anonymised.

Will my data be identifiable?

The information you provide is confidential. Direct quotes from participants in this study may be used when it is written into a report. The source of the quote will not be attributed to you. The interview will be turned into a written account and will be stored securely and only the researchers conducting this study will have access to it:

  • Audio recordings will be destroyed and/or deleted once the project has been submitted for publication/examined.
  • The computer files will be encrypted (that is no-one other than myself will be able to access them) and assess to university computers will be password protected.
  • At the end of the study, electronic copies of transcripts will be kept securely for ten years. At the end of this period, they will be destroyed.
  • The typed version of your interview will be made anonymous by removing any identifying information and replacing your name with a pseudonym of your choosing. Anonymised direct quotations from your interview may be used in the reports or publications from the study. If this happens, a pseudonym name will be attached to them.
  • All your personal data will be confidential and will be kept separately from your interview responses.
There are some limits to confidentiality: if what is said in the interview makes me think that you, or someone else, is at significant risk of harm, I will have to break confidentiality and speak to my supervisor about this. This will be discussed with you, though.

What will happen to the results?

The results will be summarised and reported in a dissertation/thesis. The results of the research may be submitted for publication in an academic or professional journal. A summary of the results will be made available for participants who would like these.

Are there any risks?

There are no risks anticipated with participating in this study. However, if you experience any distress following participation you are encouraged to inform the researcher and contact the resources provided at the end of this sheet.

Are there any benefits to taking part?

Although you may find participating interesting, there are no direct benefits in taking part. However the information from this study may lead to benefit others who face the cancer journey and health professionals working with people also affected.

Who has reviewed the project?

This study has been reviewed and approved by the Faculty of Health and Medicine Research Ethics Committee, at Lancaster University.

Where can I obtain further information about the study if I need it?

If you have any questions about the study, please contact the main researcher:

Selane Rigby
Tel: 07508 375655
Email: s.rigby1@lancaster.ac.uk
Faculty of Health and Medicine
(Division of Health Research)
Lancaster University
Lancaster
LA1 4YG

Complaints

If you wish to make a complaint or raise concerns about any aspect of this study and do not want to speak to the researcher, you can contact:

Professor Bill Selwood
Tel: (01524) 593998
Email: b.sellwood@lancaster.ac.uk
Doctorate in Clinical Psychology Programme Director
Division of Health Research
Faculty of Health and Medicine
Lancaster University
Lancaster
LA1 4YG

If you wish to speak to someone outside of the Division, you may also contact:

Professor Roger Pickup
Tel: +44 (0)1524 593746
Email: r.pickup@lancaster.ac.uk
Chair of the Faculty of Health and Medicine Research Ethics Committee
Faculty of Health and Medicine
(Division of Biomedical and Life Sciences)
Lancaster University
Lancaster
LA1 4YG

Thank you for taking the time to read this information sheet.

Resources in the event of distress

Should you feel distressed either as a result of taking part, or in the future, the following resources may be of assistance:

Contact your GP or Health Care Professional who works with you.

You may wish to contact MIND (available Monday to Friday, 9am to 6pm) 0300 123 3393 or visit www.mind.org.uk Or Macmillan Cancer Support (available Monday to Friday, 9am-8pm) 0808 808 00 00 or visit www.macmillan.org.uk.

Alternatively, you can contact regional cancer charities and support groups, Cancercare on 01524 381820 (24 hour answer service) or visit www.cancercare.org.uk, The Rosemere Foundation Trust on 01772 522 913 or visit www.rosemere.org.uk, and Gentle Approach on 01772 865024 or visit www.gentleapproach.org.uk