Page 1: Online support group participation and empowerment of individuals living with phantom limb pain

Supervisor: Professor Neil Coulson

Local Researcher:     Jonas Ruud Gravli 

Please read through the following information so that you can understand why the research is being done, why we are asking you to participate and what it will involve for you, and the chance to receive a £20 online voucher.

 

What is the purpose of the study?

We would like to explore whether participating in an online support group could help individuals living with phantom limb pain better manage their condition, to reduce pain or better wellbeing. The background for us undertaking this study, is that less than 10% of people diagnosed with phantom limb pain experience lasting pain relief following treatment. Which can have severe negative effects on one’s health. We are exploring alternative avenues to help the remaining 90% manage their phantom limb pain. We are therefore undertaking the current study in hopes of informing future research and medical practice. 

 

Why have I been invited?

You are being invited to take part because you are living with phantom limb pain, participating in an online support because of phantom limb pain and are 18 years or older. You can therefore give us valuable insight into your experiences with online participation and phantom limb pain. To learn as much as we can, we need as many participants as possible. We are therefore inviting as many participants like you to take part as we can.

 

Do I have to take part?

It is up to you to decide whether or not to take part in this study and you can choose to withdraw from the study at any point. If you decide to take part, you are still free to withdraw at any time and without giving a reason. This would not affect your legal rights. This means you can even withdraw even after completing the study. However, once the data has been analysed, you will no longer be able to withdraw your data. Analysis of the data will occur sometime in July, depending on the recruitment process.

 

What will happen to me if I take part?

You will be asked to take part in a survey exploring factors associated with online support group participation, potential outcomes of participation and phantom limb pain experience. This take between 10 to 15 minutes at most. You will only be asked to take part of this once.
You will be completely anonymous throughout the process and we will not be asking you to include any information that could be used to identify you, as part of the survey. However, to participate in the price draw, we will require an email address at the end o the survey (see “Price draw”). Only the researchers will have access to the recorded data.

 

Prize draw.

As a mean for us to show you our gratitude for participating in the study, we will be giving away five £20 online gift vouchers, equivalent to $26 American. The five people receiving a voucher will be drawn at random on the 18th of August. To be able to participate in the prize draw and potentially receive a £20 online voucher, we do require an email address. This can be filled in at the end of the survey and will only be used to contact you if you win an online voucher. We therefore ask that you provide us with your preferred email address. We will only use this to contact you if you win and will under no circumstances share your email address. Furthermore, you email address will not be stored with your data but on a separate file. 

 

What are the possible disadvantages and risks of taking part?

We will be asking you questions about your amputation, your experience of phantom limb pain and how it affects you in your daily life. For example, during tasks, work, while you are socialising with friends or family and how you experience your life in general. Some people may find this upsetting. This is by no means our intentions and all questions are included out of necessity for the study.

 

What are the possible benefits of taking part?

We cannot promise the study will help you but the information we get from this study may help others experiencing phantom limb pain after going through an amputation. The aim of this study is to potentially improve the care provided for those experiencing phantom limb pain by exploring online support groups and whether they contribute to improved management phantom limb pain. You may also receive a £20 online voucher for participating (see “Prize draw”).

 

What happens when the research study stops?

Data will be collected from yourself and other participants. This will be stored on a password protected hard drive. All data will then be analysed using appropriate statistical analysis before being included in the final research report. We will not be asking anything of you once you have completed the questionnaire.

 

What if there is a problem?

If you have a concern about any aspect of this study, you should contact the researchers by email. The researchers’ contact details are given at the end of this information sheet. If you remain unhappy and wish to complain formally, you can do this by contacting [Professor Neil Coulson of the University of Nottingham at:  lwznsc@exmail.nottingham.ac.uk]

 

Will my taking part in the study be kept confidential?

We will follow ethical and legal practice and all information about you will be handled in confidence. To ensure your anonymity throughout the study you will be asked to generate a unique code (e.g. gulliver123) before accessing the survey. We ask that you keep this code as it will provide us with the means to find your recorded answers if you would like to withdraw after completing the study. While we will ask you for your email address at the end of the survey, you only have to fill this in if you would like to participate in the price draw (see “Price draw”). Outside of this email address, we will not ask you to provide any information that could be used to identify you during the survey. We therefore ask that you do not include any information beyond your email when completing the survey. If this were to occur, the information will be redacted by one of the researchers to prevent identification. Only the researchers will have access to this data. The data itself will be stored on a password protected hard drive and a password protected hard drive only. The drive itself will be kept on the researcher’s person, or in a locked room at all times. Finally, your email address will not be shared.

Under UK Data Protection laws the University is the Data Controller (legally responsible for the data security) and the Chief Investigator of this study (named above) is the Data Custodian (manages access to the data). This means we are responsible for looking after your information and using it properly.

You can find out more about how we use your information and to read our privacy notice at:

https://www.nottingham.ac.uk/utilities/privacy.aspx.

The data collected for the study will be looked at and stored by authorised persons from the University of Nottingham who are organising the research. They may also be looked at by authorised people from regulatory organisations to check that the study is being carried out correctly. All will have a duty of confidentiality to you as a research participant and we will do our best to meet this duty.

 

What will happen if I don’t want to carry on with the study?

If you decide at any point that you no longer want to take part in the study, you are free to withdraw at any time. That means you can exit the study at any point while completing the questionnaire and your data will not be saved anywhere. For this reason, we also ask that you press “Complete survey” at the end if you would like to participate. It is your right as a participant to withdraw at any time without giving a reason to do so. If you would like to withdraw after completing the questionnaire you can email the researcher and using your unique code, we will delete your data. Unless the data has already been analysed, which will occur in July. It is therefore important that you keep your unique code after completing the study, as this will be the only way to link you to your records. However, this will only be possible until July or at the latest the first of August 2019. Depending on when the data is analysed. Finally, if you decide to withdraw, you will also be withdrawn from the price draw.

 

What will happen to the results of the research study?

Once the study is completed, this report will be written up as part of an educational qualification. We will also attempt to get it published in a relevant journal. However, we will be able to send you a summary of the study findings on request. We would like to reiterate that you will in no way be identified in this report/ publication.

 

Who is organising and funding the research?

This research is being organised by the University of Nottingham and is part of the MSc degree for Health Psychology.

 

Who has reviewed the study?

All research in healthcare is looked at by independent group of people, called a Research Ethics Committee, to protect your interests. This study has been reviewed and given favourable opinion by Research Ethics Committee of the Division of Rehabilitation and Ageing, School of Medicine.

 

Further information and contact details

If you have any questions, please contact:

Jonas Ruud Gravli
msxjg7@exmail.nottingham.ac.uk

Professor Neil Coulson
lwznsc@exmail.nottingham.ac.uk