Caring from a distance -Survey

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Caring from a distance -Survey

Postby wendy » 26 Jul 2014, 08:34

The aim of this study is to look at the views and experiences of people who are providing care from a distance to a relative who is seriously ill, and to understand their needs.
You are being invited to take part in a research study. Before you decide whether or not to take part, it is important for you to understand why the research is being done and what it will involve. Please take time to read the following information carefully.


What is the purpose of the study?

The aim of this study is to look at the views and experiences of people who are providing care from a distance to a relative who is seriously ill, and to understand their needs. Increasingly, people live apart from their close family and relatives. This brings challenges in providing the care and support people wish to provide to relatives who have a life-limiting illness.

For the purposes of this study, we have defined “carer” as a relative who provides any kind of significant care. This is not necessarily hands-on care. Care can also mean calling regularly over the phone, offering emotional support, dealing with health care professionals, organising private or charity care, providing financial support, and so on. When we say “at a distance”, we mean carers who are restricted in how often they can visit because they do not live nearby.

A secondary aim of the study is to explore if and how carers at a distance make use of new technologies, such as the Internet and smartphones, in health services. I would like to explore whether carers at a distance use these kinds of resources, and, if they do, how beneficial this is.

Why have I been invited to participate?

You have been invited to participate because you told us that that you are supporting a relative with a life-limiting illness in a significant way, and that you live at a distance from your relative.

A total of around 200 people will be asked to fill in this survey.

Do I have to take part?

Taking part in this research is entirely voluntary. It is up to you to decide whether or not to take part. If you do decide to take part you will be asked to proceed with this online survey.

If you decide to take part you are still free to withdraw at any time without giving a reason, until such time as the data are analysed. Choosing to either take part or not take part in the study will have no impact on the care that your relative is receiving.

What will happen to me if I take part?

For the first part of my study, I would like to conduct a survey of carers at a distance. I will be looking at people who are providing informal, unpaid care at a distance for a relative with a life-limiting illness. After the survey, I plan to conduct telephone interviews with about 20 to 30 carers to explore these topics in more depth. If more than 30 people express interest in taking part in the interview, I may not be able to interview all of them.

If you decide to take part, you will be asked to proceed with this online questionnaire. Completing the questionnaire should take you around 20 minutes.

At the end of the questionnaire you will be asked if you would be willing to also take part in a telephone interview (or face to face or video-conference if you prefer so). This interview will last around 30 minutes and you will be asked about the same topics in the questionnaire, but in more depth this time.

Your participation in the study will depend on how much you wish to be involved. You can choose to only reply to the questionnaire.

What are the possible benefits or risks of taking part?

There are no direct benefits or risks of taking part in this study. However, you may feel that it is beneficial for you to talk about your role as a family member providing care. The information gained through this study will help us understand the views and experiences of carers at a distance. We hope that this will inform healthcare professionals who provide care to those in similar circumstances to you and your relative. Ultimately, we hope to improve the experiences of others living with life-limiting illnesses and their families.


Equally, there is a chance that you might find talking about these issues upsetting. If this is the case, you may want to contact Carers UK on 0808 808 7777 or visit the Carers UK website on http://www.carersuk.org. In the event that you found the telephone interview distressing, we could stop at any time.


Will what I say in this study be kept confidential?


Yes. Confidentiality, privacy and anonymity will be ensured in the collection, storage and publication of research material.


The results of the study will be written up for a PhD thesis and will also be published in academic journals. Any publication of the findings will be completely anonymous (you will not be identified in any way). No names will be used: if you decide to participate, you will be assigned a numeric code, which will be used in any research material or publications. The findings will also be presented to clinical departments participating in the study and at relevant conferences.


Please note that if the responses to the questionnaire suggest that you might be experiencing significant anxiety or depression issues, I will suggest that you contact your GP about it, who may be able to help you. This is standard research practice. I will not contact the GP myself.


In accordance with Oxford Brookes University’s policy on academic integrity, the data produced in the course of this research will be retained in a secure archive for a period of 10 years after the completion of a research project.


What should I do if I want to take part?

If you want to take part in this study, please complete the survey. You can start by clicking "Next" below.



If you wish to be interviewed after the questionnaire, please provide your contact details in section F. If you only wish to complete the questionnaire, but do not want to be interviewed, please leave that section blank and continue with the rest of the survey. You are free to withdraw at any time, without giving a reason. This would not affect the standard of care that you or your relative receive.


What will happen to the results of the research study?

The results of the research will be used in my PhD thesis. I will also aim to disseminate the results by presenting at relevant national and international conferences, and by publishing in scientific journals.



A copy of the final PhD thesis will be accessible through Oxford Brookes University. At the end of the study, I would like to send you a letter thanking you for your participation in the study. If you would like a summary of the results at the end of the study, please tick the box provided at the end of the questionnaire.


Who is organising and funding the research?


I am conducting this research as a PhD student in the Department of Clinical Health Care, at Oxford Brookes University, under the supervision of Prof Mary Boulton, Prof Eila Watson and Prof Bee Wee.


This PhD is funded by the NHS South East Strategic Health Authority.


Who has reviewed the study?


This research project has been approved by the Faculty Research Ethics Committee, Oxford Brookes University, and by the NHS Research Ethics Committee REC South-Central, Oxford C.


Contact for Further Information



You may contact me or my Director of Studies Prof Boulton, should you have any questions.

Professor Mary Boulton       
+44 (0)1865 485298
mgboulton@brookes.ac.uk



If you have any concerns about the way in which the study has been conducted, you should contact the Chair of the University Research Ethics Committee on heabbott@brookes.ac.uk.
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