Participant Information Sheet

Study title: Being supplied with an artificial limb following amputation: Exploring people's psychological needs

My name is Katy Hughes and I am conducting this research as a trainee clinical psychologist as part of the Doctorate in Clinical Psychology programme at Lancaster University, Lancaster, United Kingdom.

What is the study about?

The purpose of this study is to find out about people's experiences of being supplied with an artificial limb following amputation. We know that this stage of rehabilitation is important and we want to find out more about what this process is like for people. The study aims to find out more about the type of psychological support people might want or need during this process with a goal of improving things for people who have experienced amputation.

Why have I been approached?

You have been approached because the study requires information from people who have experienced limb amputation and then been through the process of having an artificial limb or 'prosthesis' supplied as part of their rehabilitation.

Do I have to take part?

No. It is completely up to you to decide whether or not you take part. You have been given this 'Participant Information Sheet' along with a copy of a consent form so that you can spend some time thinking about whether or not you would like to take part. You can take as long as you want to decide but it is best practice for me as a researcher that you have at least 24 hours to think about it before making a decision. Sometimes people want to ask questions about the study before they decide. Other times people decide that they do not want to take part. Both of these options are completely fine and it will not affect your rights or access to services in any way. If you decide that you do want to take part but then later you change your mind, you can do that too up until the point where final results are reported.

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

If you decide you would like to take part in the study, you would be asked to take part in an interview with me lasting approximately one hour, depending on how much you wish to share about your experiences of being supplied with an artificial limb. The interview can take place via telephone, online via video calling (such as Skype) or in person if that is more convenient for you. Please note that if you chose to take part in the interview via Skype, it cannot be guaranteed that this method is completely secure.

When you decide that you want to take part I will fully explain the details of the study to you and see if you have any questions. If you still wish to take part I will then ask you to provide your consent via one of the following methods:

  • verbally, right at time start of the interview I will ask you to confirm that you have read and understand this information sheet and the consent form and that you consent to take part in the study;
  • via email, by returning a copy of the consent form via your email account;
  • or, in writing, by returning a copy of the consent form using a freepost envelope which I will provide on request.
You can choose which way you would like to provide your consent. We will also arrange a convenient date and time for the interview. I will record the audio from all of the interviews I undertake and afterwards I will transcribe them (type up the things we talked about during interview) and look at the overall results to see if similar topics or themes stand out.

Will my data be Identifiable?

The information you provide is confidential in so far that your personal details will not be shared with anyone unless there are significant reasons such as a risk to you or someone else. Information about you and audio recordings of your interview will be stored securely on Lancaster University's secure server for the minimum amount of time necessary to transcribe your interview. As soon as your interview has been transcribed, the audio recording will be deleted and your information will be anonymous. The things that you talk about during your interview will be recorded and when I am writing the report on my findings I may use direct quotations from people who have taken part in the study. The quotes will be anonymous which means that identifiable details such as your name are not attached. However, the fact that they are your words means that complete confidentiality cannot be guaranteed for this study.

The data collected for this study will be stored securely and only the researchers conducting this study will have access to this data:

  • Audio recordings will be transcribed and anonymised and the original recordings will be stored securely on Lancaster University's secure server.
  • Hard copies of consent forms will be kept in a locked cabinet.
  • Any study files on the computer, including audio recordings, will be encrypted (that is no-one other than the researcher will be able to access them) and stored on Lancaster University's secure server and the computer itself password protected.
  • At the end of the study, hard copies of consent forms will be kept securely in a locked cabinet 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 including your name. Anonymised direct quotations from your interview may be used in the reports or publications from the study and as such your name will not 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 leads me to believe that you, or someone else, are at significant risk of harm, I will have to break confidentiality and speak to my supervisor about this. If possible, I will inform you about who I will share information with and for what reason.

What will happen to the results?

The results will be summarised, reported and submitted as part of my accreditation on the Doctorate in Clinical Psychology programme at Lancaster University. Results may also be submitted for publication in an academic or professional journal. I will also share my results with the Limbless Association who kindly agreed to help me to advertise this study. You will receive a summary of the overall findings when I have submitted my report to Lancaster University. You are also welcome to request a full copy of the report.

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 contact me or any of the other contacts 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 although some people find it helpful to talk about their experiences. Some people experience participation in research as positive through the potential for research to improve our understanding and perhaps services. Unfortunately I am not able to offer any financial reward or other incentives for taking part.

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 me at any time:

Katy Hughes, Trainee Clinical Psychologist
Please text or phone me on: 07908 613796
Or email me on: k.hughes4@lancaster.ac.uk
Or write to me at: Doctorate in Clinical Psychology
Faculty of Health and Medicine
Division of Health Research
Lancaster University
Lancaster LA1 4YG

Or alternatively, if you prefer to speak to someone other than me, please contact:

Dr Fiona Eccles, Research Supervisor
Phone: 01524 592807
Email: f.eccles@lancaster.ac.uk
Doctorate in Clinical Psychology
Faculty of Health and Medicine
Division of Health Research
Lancaster University
Lancaster LA1 4YG

Dr Craig Murray, Field Supervisor
Phone: 01524 592730
Email: c.murray@lancaster.ac.uk
Doctorate in Clinical Psychology
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:

Dr Anna Daiches, Programme Director
Phone: 01524 594406
Email: a.daiches@lancaster.ac.uk
Doctorate in Clinical Psychology
Faculty of Health and Medicine
Division of Health Research
Lancaster University
Lancaster LA1 4YG

If you wish to speak to someone outside of the Doctorate in Clinical Psychology programme, you may also contact:

Professor Roger Pickup, Associate Dean for Research
Phone: 01524 593746
Email: r.pickup@lancaster.ac.uk
Faculty of Health and Medicine
Division of Biomedical and Life Sciences
Lancaster University
Lancaster
LA1 4YG

Resources in the event of distress

I have also included some resources in the event that you feel some additional support would be helpful. Please note that you may also speak to your GP if you prefer.

Limbless Association - Providing support to amputees and the limb loss community
http://www.limbless-association.org
Email: enquiries@limbless-association.org
Phone: 0800 644 0185

The Samaritans - 24 hour confidential support to talk through any problems
http://www.samaritans.org
Freephone: 116 123
Email: jo@samaritans.org

Thank you for taking the time to read this information sheet