How long is the trial?
Each participant will be in the trial for 12 months, so if you receive a Care Partner you will see them for up to a maximum of 12 months. The whole trial is expected to take about 2 years, as different people will be starting the trial at different times.
What will happen if I don’t get a Care Partner?
50% of the participants in the PARTNERS2 study will not receive a Care Partner. If you are in this group you will continue to have your usual care. The people in this group are just as important as the people receiving a Care Partner, as we need both to show whether or not the PARTNERS Service works. If you are in this group we will be in contact with you at the start of the trial to take informed consent, and to take some information about your health and well-being through an interview and questionnaires. We will then contact you again 10 months later to repeat this to see how your health and well-being has changed. This is so that we can compare this information to that provided by the people who do receive a Care Partner.
What is informed consent?
Informed consent is when a participant agrees to take part in a trial, after having been given enough information to be confident they fully understand what will be happening.
This is very important for both us as researchers, and for you. During this process, you will be given information, and asked to talk about it with people important to you. We will then ask you to meet us at a convenient time and location, where a researcher will go through this information with you, and answer any questions you may have. You will then be asked to sign forms stating you are happy with the information received and want to take part.
How often will I have to speak to the research team?
Someone from the research team will meet with you at the beginning of the trial and again at 10 months. This first meeting will be to explain the trial to you, so that you can give informed consent, and to do an interview and questionnaires about your health and well-being. The second meeting will be to repeat the same interview and questionnaires, to see how things have changed over the ten months.
However, if you would like to speak to the research team at any time, we will be very happy to chat with you. You will be provided with our contact details, so you can get in touch with the researcher working with you directly.
Will I be identified as a participant of the study in any documents?
All information we collect will be kept confidential and anonymous. This means that no one will be able to identify you in any documents.
Can I drop out of the trial?
You can leave the trial at any time regardless of whether or not you have received a Care Partner. If you choose to leave the trial this will not affect the care you receive from your GP or secondary care.
If you wish to leave the trial you will be able to do this by contacting the researchers and saying you would like to withdraw consent. The research team will ask you why you want to leave the trial as this can be useful information, but you do not have to tell them if you do not want to.
If you have received a Care Partner but no longer want to see them, you can choose to do this without dropping out of the trial – this means that you would still meet with a member of the research team at month 10 to give some information on your health and well-being, but would no longer see the Care Partner. The research team will ask you why you no longer want to see the Care Partner, but you do not have to tell them.
What happens if I have a complaint about the trial?
If you have a complaint about the trial, please contact us. We will be happy to discuss this with you, and will work to resolve it. If you are still unhappy with the way your complaint has been handled, you can contact your local Healthwatch. Their details can be found on the Healthwatch website.