The International Access, Rights and Empowerment (IARE) Study

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Document Title: Carer information sheet letter (Version 2 16/02/2012)
The International Access, Rights and Empowerment (IARE) Study
Carer information sheet
Background to the research
You are being invited to take part in a research study. Before you decide, we would like you to understand why the research is being done and how it would involve you. Please take time to read this information sheet very carefully. We will talk through this information with you and answer any questions you might have. Please ask if there is anything that is not clear or if you would like more information. The following information might help you decide whether you want to join the study. Take your time to decide whether or not you wish to take part.
What is the purpose of the study? The purpose of this study is to better understand the needs of people and their caregivers in order to improve access to palliative care services.
Why have I been chosen to take part? You have been chosen because you might be able to help us to find out more about the barriers and facilitators for palliative care access in a hospital environment, and about what has or hasn’t helped the independence, autonomy and the needs of the person you care for whilst accessing or trying to access specialist palliative care in the hospital.
What’s involved?
What will happen if I take part? If you agree to participate, you will be invited to take part in up to two interviews about barriers and facilitators in relation to palliative care within the hospital, and to understand more about what has or hasn’t helped the independence, autonomy and needs of the person you care for whilst accessing or trying to access palliative care in the hospital. Your interview will be recorded to make sure we capture accurately the information that you share.
After the interview, your recording will either be typed out and transferred into a computer programme for analysis, or the recording will be modified to make sure you can’t be identified and then it will be transferred into a computer programme for analysis. This might involve changing the pitch or tone of your voice.
If you agree to take part, we will ask you to sign a consent form at the end of the interview. We will discuss this consent process to make sure you have understood what’s involved before you sign the form.
When and where will the interview take place? We can organise the interview around your needs and it can take place in a location suitable to both you and the researcher. During the interview we can take breaks whenever you need to. You can stop at any time if you want to. If there is any question you don’t want to answer you don’t have to. You can let the researcher know whenever you are tired.
How long will it take? Each interview will take about 60 minutes to complete.
Do I have to take part?
No. It is entirely up to you to decide whether or not to take part. Even if you agree to participate you are free to withdraw at any time, without giving a reason. If you do withdraw from the study, we may still use the information collected up to the point of your withdrawal as once your information is combined with other information it is very difficult to withdraw your contribution.
Carer information letter_Version 2_16022012

What will happen to me or the person I care for?
This research will not affect the standard of care you or any person related to you in anyway might receive, their care options, or any relationships you have with any staff or researchers.
What will happen to the information I provide?
All information about you will be treated confidentially and we will follow ethical and legal practice guidelines to make sure this happens. Your information will be anonymised which means you or anyone else will NOT be able to be identified from what you’ve shared. The information you share will be stored in a safe place with any information that identifies you kept separately. Information about you which leaves the hospital will have your name and address removed so that you cannot be recognised.
What about the results?
What will happen to the results of the study? The findings of this study will published in scientific journals. A lay summary of the results for wider dissemination will be sent to policy makers, staff, and individual users of services, their caregivers and charities. If you wish we can send you a copy of the results.
Need more information or want to talk to someone else?
More information: All research is looked at by an independent committee of people called a Research Ethics Committee, to protect your interests. This study has been reviewed by the National Research Ethics Service Committee London – Dulwich and it has been given a favourable opinion. However, if you have a concern about any aspect of this study, you should ask to speak to the researchers who will do their best to answer your questions. Their contact details are included at the end of this information sheet.
Concerns: If you remain unhappy and wish to complain formally, you can do this via the Patient Advice and Liaison Service (PALS) at:
King’s College Hospital (Telephone: 020 3299 3625/3601);
St Thomas’ Hospital (Telephone: 020 7188 8801);
Guy's Hospital (Telephone: 020 7188 8803).
Any complaint about the way you have been dealt with during the study or any possible harm you might suffer will be addressed.
The funders and organisers: This study is funded by the Cicely Saunders Institute and the Atlantic Philanthropies. It is led by study teams from Kings College Hospital (London), Beaumont Hospital and Mater Misericordiae University Hospital (Ireland), and Mt Sinai Medical Centre (New York City).
Become involved: We welcome any suggestions that you have to improve this research. We are happy to share the findings of the research with you regardless of whether you participate or not. Thank you very much for taking the time to read this sheet. Please contact us for more information.
Researcher contact details
Name _______________________ Telephone _______________ Email _______________________
King’s College London, Cicely Saunders Institute, Department of Palliative Care, Policy and Rehabilitation, 6 Bessemer Road, Denmark Hill, London SE5 9PJ; Telephone: +44 (0)20 7848 5565; Fax: +44 (0)20 7848 5517.
Thank you
Carer information letter_Version 2_16022012

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The International Access, Rights and Empowerment (IARE) Study