Researchers from the Social Policy Research Unit at the University of York are conducting a study in your area. This study is funded by the National Institute for Health Research. It has been reviewed and approved by [name of case site] Primary Care Trust Research and Development Office, and the Research Ethics Committee for Wales.
Before you decide if you wish to take part, it is important for you to understand why the research is being done and what it will involve. Please read this information carefully and take your time to decide if you wish to take part.
What is the purpose of the study?
We are looking at services in your area that co-ordinate care for people with neurological conditions. We want to know how far they are able to meet people’s needs. The research is looking at the support provided by the [name of integrated community team] and what people who use the [name of integrated community team] expect from receiving this support.
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We are interested to hear about the type of goals you might want to achieve and how the team supports you in working towards them.
Why have I been contacted?
You have been sent this pack because we understand you receive support from the [name of integrated community team].
What are the benefits of this research?
The information you provide will help us to understand what teams like the [name of integrated
community team] can offer people with a neurological condition. This information will be used to develop a checklist of issues that staff need to think about when they are supporting you. The checklist will be about issues that people, who use community teams like the [name of integrated community team], have told us are important to them.
The checklist will be used by the team to make sure that they are thinking about the things that are important to their clients. We also hope that it can be used to show the benefits that teams like the [name of the integrated community team] can have on the lives of people with neurological conditions.
Will my taking part in this study be kept confidential?
Your involvement in the study, and the information that you provide, will be kept confidential. Everyone who takes part will be given a personal number so that they cannot be identified and all information provided will be anonymised. We will hold all data in line with the 1998 Data Protection Act and University of York Ordinances.
There are rare circumstances where the researcher is required to disclose someone’s participation to a doctor, nurse or other health care professional. However, this will only happen if the researcher is
extremely concerned about the participant’s well-being. We will not tell the professional anything that was said in the interview unless it is directly related to the reason we were concerned.
Will taking part in this study affect my care?
No, taking part will not affect your care or the services you receive in any way. Likewise, if you decide not to take part, your care will not be affected in any way. It is up to you whether or not you decide to take part and your decision will be kept completely confidential.
What will taking part involve?
If you would like to take part, you will need to complete the response form and return it to me in the freepost envelope. Please keep this information sheet.
I will then contact you to answer any questions you may have and to arrange a time and place that suits you, to conduct the interview.
On the day of the interview, you will be able to ask more questions and raise any concerns. If you are still happy to go ahead, I will ask you to complete a consent form (and give you a copy of it to keep). The interview will take about 45 minutes and give you an opportunity to describe your views fully. It will be audio-recorded (with your permission). Recordings will be destroyed when the research is complete. If you do decide to take part, you are still free to withdraw at any time and without giving a reason.
What if I choose not to take part?
Taking part in this research is entirely voluntary. If you choose not to take part, just complete the top half of the response form indicating your choice and return it to me in the freepost envelope so that I do not contact you again. You do not have to give a reason or complete the demographic form, but doing so would help me to understand why you did not want to take part, which might help when planning future
studies. (Note:your reasons will be recorded anonymously. If you have decided not to take part, please do not give your name.)
If you have any questions or would like more information, please contact [name of researcher] on [telephone number] email [email address].
Thank You.