General Information

Thank you for your interest in the online exhibitions, ‘Exhibiting Pain’. I would be grateful if you could read this information, and complete and return the consent form. This would be really helpful so that I can use your comments in my research.

What is the Exhibiting Pain project?

Exhibiting Pain will consist of two online exhibitions, using a private Facebook group page and a WordPress blog. These form part of my PhD research which is looking at using creativity to communicate what it’s like to live with long-term physical pain. Please see below to find out more and/or get in touch with me.

What is the aim of ‘Exhibiting Pain’?

I hope to explore how helpful creativity can be to explain long-term physical pain. I will be using the audience responses to the exhibitions to see how they interpret the works, whether the creative pieces help them to understand long term pain in a way that they didn’t before. If creativity proves to be helpful, I hope to promote this as an option for patients to use in medical consultations, to help them communicate with clinicians and doctors. It may also help friends and loved ones to understand. I would like to see pain management clinics promote the potential of creativity to be used to manage pain, and for clearer communication.

I don’t have persistent pain, can I take part?

Yes, you don’t need to have persistent pain, or be an artist, carer or health professional to take part. If you are interested in participating – that’s enough! As an audience member you will play an important part in the ‘Exhibiting Pain’ project.


How long will the exhibitions be available?

It is expected that the exhibitions will be available online until the completion of my PhD. However, the data gathering process will be for a minimum period of 3 months, and a maximum of 6. It will be made clear in the exhibitions when data gathering is ending and reduced monitoring of the sites occurring.

What will happen during the exhibitions?

I will be encouraging people to talk about their interpretations of the pieces exhibited and how these relate to long-term physical pain. I do not intend to ask audiences to assess whether they consider the piece to be ‘good’ or ‘skilled’ or not.

The audience will be asked things like, ‘what does the piece tell them about living with pain?’, ‘what do you think the creator is expressing about pain in this piece?’, ‘do you think the creative piece communicates something to you about the person’s pain that you may not have understood from them talking about it?’, ‘would you like to ask the creator anything, having seen this piece?’, ‘how does the work make you feel?’.

How will you use the audience discussion?

The audience interpretations and discussions will be used to write my research about creativity and communicating pain. I may wish to quote you, in which case a pseudonym would be used.

What if someone posts a comment that I disagree with or don’t like?

Everyone posting to the exhibitions will be advised to be respectful of others and to use appropriate language. They will also be made aware that offensive posts will be removed. If you are offended by someone’s post, please notify me. If you disagree with someone’s comment, you are welcome to share the reason why and get into a friendly discussion about it. I will be checking comments regularly and will remove any that I feel are unsuitable.

Can I change my mind?

Yes, until the publication of any findings you are able to withdraw from the project. Data you have contributed in discussions may still be used for analysis purposes but you will not be quoted. Your contribution may still be used for analysis if it forms part of a discussion, e.g. if someone else has responded to your comment(s). Where this is not the case, your data will be destroyed.


How will you use my contribution?

Your comments and feedback on the works will be used to form part of the data contributing to this study, the copyright of which belongs to The Open University. The discussions will be analysed to try to understand how interpretations are formed about the works and the pain they represent. There are no ‘right’/’wrong’/’good’/’bad’ interpretations or comments. Quotations may be used in the final thesis and/or academic journals.


What are the risks and benefits of taking part?

It is possible that you may find the viewing of creative works about persistent pain, and the accompanying discussions, to be emotionally distressing. However, the experience of sharing thoughts in response to the works and learning more about living with long-term pain may be interesting and rewarding for you. You may also enjoy taking part in a PhD research study. There are sources of information and support listed on the following page.


 Useful contacts and resources

If you would like to learn more about long-term pain and how to manage it, or are distressed by viewing the exhibitions and would like someone to talk to, please see below for relevant organisations.

Pain Concern

Charity supporting people with long-term pain

Helpline:0300 123 0789

Pain Toolkit

Supporting pain management

Enquiry form

British Pain Society

Professional organisation supporting healthcare professionals who support people with pain

For people with pain:

Resources and further contacts available


Confidential service allowing you to talk with someone


08457 909090

Any questions?

If you have any queries or concerns about the project you are welcome to get in touch with me directly. Alternatively, you can contact one of my supervisors.

Researcher contact details:

Susanne (Sue) Main

PhD Candidate

Faculty of Health & Social Care                              T: 01908 655606

The Open University                                              E:

Milton Keynes, MK7 6AA


Lead Supervisor:

Dr. Caroline Holland

E:     T: 01908 654680


Additional supervisors:

Prof. Emerita Rose Barbour          E:

Dr. Joan Simons                               E: