Participant Information Sheet
Hi my name is Shaneela Malik and I am conducting this research study as part of my doctoral programme in Clinical Psychology at Lancaster University, Lancaster, United Kingdom.
What is the study about?
This research is investigating the communication styles in consultations between people who have an amputated limb and their prosthetist. It will also investigate how satisfied the person is with the communication style employed by their prosthetist, and whether this then impacts on quality of life.
Why would you like me to be involved?
We are interested in collecting information from individuals who have an amputated limb, and who have accessed or still are accessing, consultations with a prosthetist. Below is a list of inclusion criteria for this study. If you meet all of the criteria, we would be very grateful if you could take the time out to complete this survey.
- Adults of any gender, ethnicity and nationality, aged 18 or over, who have lost a limb through amputation, or who have congenital limb absence / deficiency
- Have gone through a prescription consultation process
- Are able to read and understand English and are willing to take part in the research
Is it compulsory for me to take part?
No. It is entirely your choice whether you decide to partake in this research. If you decide to participate, it is still possible to change your mind at any point prior to completing the survey. Any data that has been entered in the survey will be included in the final analysis and once the survey is complete, it will not be possible to take out the data. Your care and relationship with your healthcare providers will not be adversely affected if you decide not to participate in the study.
What will be required of me if I take part?
By taking part in this research, you will be asked for your demographic information, and to complete a number of questionnaires relating to the communication style between you and your prosthetist, your satisfaction with this, and your general wellbeing and quality of life. The duration of the survey should take no longer than 20 minutes, although the exact time taken will vary from person to person.
Will my information be confidential?
All the information provided by you will be kept confidential. All data collection will be stored on a secure network at Lancaster University, and the only people who will have access to this information is the researchers themselves. The data will be kept for 10 years after which, deleted.
Limits to confidentiality: As the survey will be completed online, it will be unlikely that researchers will be able to monitor the wellbeing of yourself or others. However, if there is any email communication which would concern the researchers about your welfare and that of those around you (e.g. a deterioration in mental state and/or an increase in harm to self and/or others), the researchers would need to communicate such concerns with a support or health agency (general practitioner). If you are having any difficulties managing your physical and/or emotional health, we encourage you to contact your local health provider.
What will you do with my data?
Your data will be merged together with that of other participants. The data will then be analysed and written up as part of a doctoral thesis, and then examined by Lancaster University. The results may also be published in a professional or academic journal, and verbally presented to organisations, research and/or health teams who work in the field of amputation and prosthesis. If participants request, a brief summary of the findings will be made available to them. Please get in touch with the principal researcher if you would like this, by emailing: email@example.com
What are the risks to taking part in this research?
There are no anticipated risks to being involved in this study. However, following participation, if you notice an increase in distress, it is advisable that you terminate the study and contact your general practitioner or health provider in your area.
Sources of support
Here are some organisations that will be able to offer you support for emotional wellbeing, if at any point, you feel you need it. These services provide support are internationally located, please see their website for further details.
Befriender's Worldwide (http://www.befrienders.org)
'Providing emotional support to prevent suicide worldwide - we listen to, and help people without judging them'
The Amputee Coalition (http://www.amputee-coalition.org)
'(We aim) to reach out to, and empower people'
Who can I contact if I wish to gain furtherinformation about the study?For further information, please contact the principal researcher Shaneela Malik on the following email: firstname.lastname@example.org
ComplaintsIf you have any concerns or if you wish to make a complaint about any aspect of this study and would prefer to speak to someone not directly involved in the research, please contact:
Programme Director: Professor Bill Sellwood
Tel: +44 1524 593998
Division of Health Research
If you wish to speak to someone outside of the Clinical Psychology Doctorate Programme, you may also contact:
Associate Dean for Research: Professor Roger Pickup
Tel: +44 (0)1524 593746
Faculty of Health and Medicine
(Division of Biomedical and Life Sciences)
Thank you for taking the time to read this information. Please ensure that you take adequate time to consider your participation before following the link below to the survey.