What will I be like?
The video recording of patients after head and neck cancer treatment being used to assist prospective patients in decision making.
Thank you for indicating that you are willing to partake in the video recording of yourself as a patient or carer for those having had head and neck cancer. The video recording will take place remotely for the purposes of being uploaded to the website so future patients and carers can consider what you are like after treatment. The information gained from this study will also be used to research the impact on patients and carers by the hospital as well as being viewed by patients. Before you decide it is important for you to understand why we are doing this research and what is involved. Please take time to read this information sheet carefully and discuss it with others if you wish. Please ask us if there is anything that is not clear to you or if you would like more information.
What is the purpose of the study?
There is evidence that the emotional impact on patients and carers of patients who have been given a diagnosis of head and neck cancer is large and a major concern of all parties is what the expected outcome will be. We do not have usable, accessible, visible evidence as to what patients will be like after surgery and in order to allay fears video recordings have been suggested as a medium to do so. This has various advantages as viewers can see what appearances, speech quality and demeanour are. Videos will be logged as to the site, stage and treatment of their condition so a patient can search for their own scenario so as close a match as possible can be made. Research will be conducted from the information gathered from the videos for academic purposes; especially to address the impact of such surgery and to see if there can be any lessons learnt.
Am I eligible?
We wish to include head and neck cancer patients who have had surgery or medical treatment and are willing to be videoed.
What will happen to me if I take part?
Once you have agreed to the terms and conditions, and have received your 'token', you will be be contacted by one of our team who will ask you to complete a quality of life assessment form and be videoed. You will be given some prompts, such as "say your first name only", or "your site of cancer, treatment and what it was staged at". You should refrain from naming your doctor who cared for you and it would be best to state how long ago you were treated rather than in what year.
What are the side effects and risks of taking part?
As regards the side effects to you physically there are none but some patients may not find it appropriate to reflect on what they are like after treatment as this may cause them some distress. For others, the experience about talking about your experience of cancer and sharing that for the benefits of new patients will be very positive and cathartic, even empowering. So it is important that you reflect on your willingness to participate. If you do feel upset during the videoing you may withdraw at any time without giving us a reason.
What are the possible benefits of taking part?
The study may not benefit you but some patients on reflection of when they had their treatment may have a clearer picture of where they are now and are therefore more content. For some, talking about your experience of cancer and sharing that for the benefits of new patients may be very positive and cathartic Anecdotal evidence suggests that patients prior to treatment have asked what they will be like and have benefitted from knowing. Their recovery is aided by realistic expectations and stress is reduced improving their quality of life. Following this, research information may be gained to be shared to a wider audience of patients, carers, clinicians and psychologists.
Will my taking part in this study be kept confidential?
Obviously viewers will be able to see who you are but it is up to you as to what you wish to disclose. Your personal hospital clinical details will not be disclosed and your video will be anonymously related to them. You will be given instructions on how to create an anonymous email alias that we will use to contact you if you do not wish to use your regular email. You can communicate with us via our contact page, and identify yourself using your 'token', which keeps you completely anonymous. Of course this is optional, and you are welcome to use your normal email fi you so choose.
Who is organising and funding this?
The project is funded by the Head and Neck Cancer Research forum of Aintree University Hospital.