Participant Information Sheet (V2 8/05/2017)

I would like to invite you to take part in a research study.   Please read the following information sheet carefully and take time to decide whether or not to participate. Participation is voluntary, If you are happy to participate, you will be asked to sign a consent form to show you agreed to take part. You are free to withdraw at any time, without giving a reason.

 What is the research about?
 
This research study is being carried out as part of a final year dissertation for an MSc in Clinical Leadership in Cancer, Palliative Care, and End of Life, at the Southampton University. 

Physiotherapists have the key skills to enable alleviation of the many side effects encompassed, as well as provide the vitally important skills and knowledge to facilitate increased physical activity However, little is known globally across the profession about the practice and knowledge with individuals affected by breast cancer. 
 
Physiotherapists are commonly cited in the literature as being the profession of choice for referral amongst other health care professionals.  Yet, the literature also states many patients never reach physiotherapists nor are they encouraged to be physically active by health care professionals. 

The study aims to understand more of the:

-       Demographics of physiotherapists who see patients with cancer, and

-       Current physiotherapy practice for people diagnosed with breast cancer  

 
The information obtained for the study will be important as the physiotherapy profession are aware that people living with and beyond a breast cancer diagnosis can benefit from receiving physiotherapy, however, little is known about the access people affected by breast cancer have to physiotherapy across the UK. 

 Why have I been asked to participate? 

You are a physiotherapist with current or recent contact with people affected by breast cancer.

The study aims to understand the demographics and practices of any physiotherapists who come into contact with people affected by breast cancer at all points pre, during and post treatment. 
 
What will I have to do if I choose to take part? 

Should you choose to participate in this study you will be asked to tick the consent box and complete 28 questions within the attached online survey. The survey questions should take approximately 10-15 minutes to complete.  
 
Are there any benefits in my taking part?

Although there will be no direct benefit to you, the information obtained from the study will help to:

-        increase understanding of the current demographics and practices of physiotherapists

-       improve the access of breast cancer patients to physiotherapy professionals

Are there any risks involved?

There should be no risks involved in being part of this study.  The questions have been carefully developed to avoid the possibility of psychological discomfort or distress.

Will my participation be confidential?
 
All information collected during the course of this research study will be kept strictly confidential, anonymised and will comply with the Data Protection Act and the University Policy.  
 
Data will only be accessed by the research team.  Survey Monkey ensures that by law the data collected is securely stored according to their privacy policy.  The function on Survey Monkey where the questionnaire is hosted, that enables participant anonymity will also be turned on. Any emails that are sent will be sent on an individual basis and not via a group method or blind copied in.

Transferable data will be transferred using the university drop off service (dropoff.soton.ac.uk).   Data will then need to be transferred by the researcher and stored on a university space which has an encripted file called “my documents”. This will be password locked and only accessible the researcher. The data will not be used for any future studies.  
 
Once the data is no longer required, the account becomes deactivated and destroyed on Survey Monkey. Anonymised data will be securely retained by the University for 10 years according to the Research Governance Office and the Research Integrity and Academic Conduct Policy.  The data will be stored by the researchers’ supervisor who will be responsible for destroying this data after the 10 year period.  
 

What happens if I change my mind?

You have the right to withdraw at any time.  You do not need to give a reason and your rights are not affected.  Please note, as the data used within the study will be anonymous, individualised data cannot be withdrawn after the questionnaire has been completed.  If you choose to withdraw before completion of the questionnaire, your data will not be used and will be destroyed.   
 
What will happen to the results of the research?
 
Once the results of the questionnaires have been collated, they will be analysed.  It is anticipated the study results will be available through:

-       Interactive Chartered Society of Physiotherapy website

-       Peer reviewed journals

-       presented at relevant conferences.  
 
The anonymised data generated by the study will also be available through the University of Southampton repository.  The research data will be stored for 10 years at the university as per the University of Southampton Policy after which it will be destroyed.  

Where can I get more information?

If you are interested in hearing more about the study and the results, please contact the researcher, Mrs Clare Lait on cel2g13@soton.ac.uk or her supervisor, Ms Beth Sepion on E.J.Sepion@soton.ac.uk 020380596890.
 


What happens if something goes wrong?

If at any time you are unhappy by the survey or it causes distress of any type and you would like to make a complaint, please contact the Research Integrity and Governance Manager, who is also the sponsor for this study, on 023 8059 5058, rgoinfo@soton.ac.uk

The University has insurance in place to cover its legal liabilities in respect of this study.  
 
                                          Thank you for taking the time to read this information sheet and considering taking part in the research.

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