Stage two take part
The PEACE-COS study is undertaking a series of interviews with family members of people who have died in critical care within the past two years. We are interested in hearing first-hand accounts of people’s experiences of end-of-life care in critical care to find out what matters to patients and their families in end-of-life care.
At the moment, researchers use a range of different measures (‘outcomes’) to evaluate end-of-life care. For example, research may look at how long patients stayed in critical care or what treatments patients received. Few studies, however, look at outcomes from the patient or family perspective. We don’t understand which outcomes matter most to the person at the centre of the care (the patient) or their family. Person-centred care includes both the patient and their family.
If you have experience within the last two years of a family member who has received end-of-life care in critical care or died in critical care and are willing to be interviewed about your experience, please read our detailed participant information below before contacting us.
To be eligible for the study, there are some conditions that you must meet. These include being:
- aged 18 years or over
- able to remember the end-of-life care process
- able to participate in one telephone or online interview
Your experience of end-of-life care is highly valued in this research and could lead to improvements in future research.
Participant Information Sheet
Person-centred outcome measures in End-of-life cAre in Critical carE
(PEACE-COS)
Invitation
Please accept our condolences on your bereavement.
We are inviting families of people who have died in or experienced end-of-life care within critical care (also known as intensive care or ICU) in the past two years to take part in a research study led by the University of Hertfordshire. The study aims to find out what matters to patients and their families in end-of-life care to help develop a core outcome set.
Before you decide whether or not to participate it is important that you understand why the research is being done, what it will involve for you and how we will use the information we collect from you.
Please take time to read the following information carefully. You may discuss it with others if you wish. A blank page at the end of this information leaflet is provided for you to make any notes or list any questions that you might have.
Please ask us if there is anything that is not clear, you would like more information or the information in an alternative format. A member of our research team will go through the information sheet with you and answer any questions you have. Thank you for taking the time to read this information and considering taking part in the PEACE-COS study.
Why is this study needed?
We are interested in defining person-centred outcomes in end-of-life care in critical care. This study is using a four stage process. This interview study is the second stage of the PEACE-COS study where we want to know what matters most to patients and their families.
At the moment, researchers use a range of different measures (‘outcomes’) to evaluate end-of-life care. For example, research may look at how long patients stayed in critical care or what treatment a patient received. Few studies, however, look at outcomes from the patient or family perspective. We don’t understand which outcomes matter most to the person at the centre of the care (the patient) or their family. Person-centred care includes both the patient and their family.
By finding out which outcomes matter most to critical care patients and their families, we can make recommendations to develop person-centred outcome measures for future research studies that accurately reflect what matters most to the patient and their family, as well as improving quality of care. The outcomes identified in this stage of the study will inform stage three where people will be invited to rate the importance of each outcome.
Why have I been invited?
You have been invited to participate in this study because within the past two years a family member has received end-of-life care in critical care. We want to understand what is important in end-of-life care from your experience. To be eligible for the study, there are some conditions that you must meet. These include being:
- aged 18 years or over
- able to remember the end-of-life care process
- able to participate in two in person, telephone or online interviews to capture the changing nature of grief.
Your experience of end-of-life care is highly valued in this research and could lead to improvements in future research.
Do I have to take part?
No. It is up to you to decide whether or not to take part. This information sheet will describe the research study and help you decide. You can also discuss taking part with your friends and family.
If you decide to take part, you are still free to withdraw at any time and without giving a reason. A decision to not take part in this study or to withdraw at any time will not affect the care you receive from any relevant services or your legal rights.
Organisation and funding
The research is being organised and run by the University of Hertfordshire. The study is led by Sally Humphreys, a PhD research student at the University of Hertfordshire and NHS critical care research nurse. She is supervised by Professor Natalie Pattison and Dr Rosemary Godbold at the University of Hertfordshire and Dr Nazir Lone at the University of Edinburgh, all of whom have extensive experience in conducting research.
The day-to-day conduct of the study will be managed by Sally Humphreys and the study will contribute towards Sally’s PhD thesis.
Expenses and payments
None of the study team are paid for you participating in this study. You will not be paid for participating in this study. Participation is entirely voluntary.
What will happen if I take part in the study?
We ask you to complete your contact information and return it to the study team.
We will contact you to answer any questions you may have and to arrange a suitable interview time. Your interviews will be conducted in person, by telephone, or online via TEAMS or Zoom.
Before the interview starts we will read each statement of the consent form out loud to you. You will be asked to confirm that you agree or disagree with each statement.
We will ask you to tell us in your own words about your experience of end-of-life care. We will explore which outcomes you think are important. The interview will last up to an hour.
We will take notes and make an audio recording of your interview. Your interview will be written up (transcribed) and the recording deleted from the recorder.
If requested, we will send you a copy of your completed consent form either via email or post.
If you agree at the end of the interview, we will phone you the following week to ensure that you are OK.
Your Interview will last up to an hour maximum and you can stop or take a break during either interview at any time without giving a reason.
Your involvement in the study will finish following your interview. We will write up the results and may use direct quotes in publications.
If we discover a serious concern, the interviewer will stop the interview immediately. Information may be shared in line with the law and local safeguarding procedures.
Possible benefits
Participating in this study may not help you directly but will allow us to develop a clearer understanding about what end-of-life outcomes truly matter to patients and their families, which will improve future research together with patient and family care.
Possible disadvantages
We understand that thinking about and talking about end-of-life care and the death of your loved one is likely to be emotional or stressful experience for you. It can make you feel upset, angry, sad and cry. These powerful feeling can occur before, during or after the interview.
Each interview will be conducted in a sensitive manner by a researcher who has appropriate training to minimise the risk of painful memories, or you becoming distressed by talking about your experience. If you do feel upset or distressed at any point, we can pause the interview, take a break or stop altogether depending on your wishes. There are no right or wrong answers to the questions and you do not have to answer any question that you do not want to.
Support services
If you wish, we can provide you with a list of bereavement support services. This is also freely available on the study website.
What if there is a problem?
If you have any concerns about any aspect of the study then you can speak with the researchers in the first instance who will do their best to answer your questions or concerns.
If you have any complaints or concerns about any aspect of the way you have been approached or treated during this study, you can also write to the University’s Secretary and Registrar at the following address:
Sharon Harrison-Barker Secretary and Registrar, University of Hertfordshire, College Lane, Hatfield, Hertfordshire, AL10 9AB.
How we use your data
In this research study we will use information from you. We will only use information that we need for the research study. We will let very few people know your name or contact details, and only if they really need it for this study. Everyone involved in this study will keep your data safe and secure. We will follow all privacy rules.
At the end of the study we will save some of the data in case we need to check it and for future research. We will make sure no-one can work out who you are from the reports we write.
We will need to use information from you for this research project. This information will include your name and contact details. People use this information to do the research or check your records to make sure that the research is being done properly.
People who do not need to know who you are will not be able to see your name or contact details. Your data will have a code number instead. We will keep all your information about you safe and secure.
Once we have finished the study, we will keep some of the data so we can check the results. We will write our report in a way that no-one can work out that you took part in the study.
What are my choices in how my information is used?
You can stop being part of the study at any time, without giving a reason, but we will keep information about you that we already have.
We need to manage your records in specific ways for the research to be reliable. This means that we won’t be able to let you see or change the data we hold about you.
If you agree to take part in this study, you will have the option to take part in future research using your data saved from this study in the secure University data systems. Your data will be anonymous, meaning you will not be identified.
More information
You can find out more about how we use your information
- at www.hra.nhs.uk/information-about-patients
- by asking a member of the research team
- by sending an email to dataprotection@herts.ac.uk
Who has reviewed the study?
To protect your interests this study has been looked at by an independent group of people, called a Research Ethics Committee (REC). All the study information has been reviewed and given a favourable opinion by North East – Tyne & Wear South REC and the Health Research Authority (HRA). It has also been reviewed by the University of Hertfordshire Health, Science, Engineering and Technology Ethics Committee with Delegated Authority.
Study results
The results of the study will be written up and published in a professional journal and will form part of Sally Humphreys’ PhD thesis. The results will also be presented at conferences. The data will be anonymous, meaning none of the people involved in the study will be identified in any report or publication.
If you would like a copy of the overall study results, or publication, please let a member of the research team know.
Our contacts
You are encouraged to ask any questions you wish, before during or after the study. If you have any questions or require further information about the study please contact one of the following people:
Lead Researcher
Primary Supervisor
Independent Contact
Sally Humphreys
Natalie Pattison
Melanie Handley
PEACE-COS 