INFORMATION SHEET

You are invited to participate in this study using a process called group concept mapping. This process requires you to generate, sort and rate your views on the culture of rehabilitation within critical care. This study forms part of a larger research project exploring rehabilitation culture within critical care.

Before you decide whether or not to participate, it is important for you to understand why this research is being done and what it will involve. Please take time to read the following information carefully and discuss it with others if you wish. Please ask if anything is not clear or if you would like more information. Take time to decide whether or not you wish to take part.

What is the purpose of the study?

Physical activity and rehabilitation are considered core components of recovery from critical illness. There is an increasing understanding that physical activity and rehabilitation within the critical care unit can improve patient outcomes. We know from research that the culture of a critical care unit plays an important role in facilitating physical rehabilitation for patients recovering from critical illness, but we do not understand enough about this.

The ACTIVE-ICU study aims to explore culture within adult general critical are units, and how culture effects the implementation and promotion of physical activity and rehabilitation for patients recovering from critical illness.

This group concept mapping study will allow us to generate a working theoretical model of rehabilitation culture in critical care, informed by the views and perspectives of those who both work, and have experienced a stay, critical care.

Why have I been chosen?

You have been chosen because you are a qualified healthcare/medical professional who currently delivers frontline care to adult patients in critical care in the UK. Your experience will have given you a perspective on physical activity, rehabilitation, and movement in critical care unit. Your views are important to this study.

Do I have to take part in the study?

No, it is completely up to you to decide. This information sheet will explain the study to you and the researcher will answer any additional questions you may have. If you decide to take part and then change your mind, you can withdraw without giving a reason by contacting the researcher, or not completing the next stage of the study. You can do this at any time during the process of your involvement. If you decide not to take part, or change your mind at any time, there will be no adverse consequences.

What happens next?

The study requires your involvement in at least one of three stages of participation via a web-based platform called groupwisdom™. You will be asked to register with an email address of your choice. Please note that although you may be identifiable from your chosen email address (i.e. work email), this information is only stored and used to contact you about your participation in the study and will not be included in any data collection, analysis or publication. You will be asked to provide participant information such as your age, profession and years of experience in critical care.

Stage 1 – Idea generation / brainstorming - *This stage has been completed*

In this stage, you will be asked to respond to a single statement called a focus prompt. This is in the form of an open-ended sentence. You will be encouraged to complete the sentence repeatedly until all your views on the topic have been expressed. During this stage, you will be able to view all the ideas that have been generated by participants before you, and likewise, participants who complete this stage after you will be able to view your ideas. These will appear as anonymous statements, and there will be no identifiable information displayed.

Stage 2 – Organising (sorting and rating) - *You are entering at this stage*

Once the ideas from the first stage have been analysed by the researcher and supervisory team, you will be contacted to participate in the second stage of the study. In this stage, you will be invited to complete two activities. The first will involve sorting the refined list of ideas/statements and sorting them into groups or themes, based on whether you feel the ideas are similar or very different. There is no one way to organise the statements, and you will be encouraged to sort them in any way you see fit.

In the second stage, you will be asked, first, to rate each statement according to how important you feel the idea is in relation to physical activity, rehabilitation, and movement in critical care. You will also be asked to rate each statement on how present you feel each statement is in your critical care organisation, or the critical care unit in which you experienced a stay. Each rating activity will be completed using a simple 4-point rating scale.

1. How important is this behaviour or value for promoting physical activity, rehabilitation, and movement in the critical care unit?

2. How present is this factor currently in the critical care unit where I work?

The results from these sorting and rating activities will be used by the researcher to construct a range of visual representations of the concept of rehabilitation culture, based on the perspectives and views of all the participants. The analysis and map construction will be undertaken using the groupwisdom™ web application.

Stage 3 – Interpretation

In this stage, visual maps representing the concept of rehabilitation culture in critical care will be shared with you. You will be asked to provide further feedback in order to enable a deeper understanding of the collective views of participants and to inform the next stages. It is hoped that the results of this study will be used to develop a working theoretical model of rehabilitation culture in critical care, that will be refined further through a period of observational research in critical care (ethnography).

What are the possible disadvantages and risks of taking part?

Because of the nature of the study, we do not expect there to be any risk of harm or injury whilst participating in the study.

What are the possible benefits of taking part?

There can be no assurances of direct or immediate benefits to you if you contribute to this study. However, it is hoped that you may find the reflection and sharing of experiences beneficial.  Your participation in the study will contribute to understanding how to shape a positive culture of rehabilitation for survivors of critical illness in critical care and may impact positively on future practice.

How will my information be used?

We will follow ethical and legal practice and all personal information about you will be handled in complete confidence, in accordance with University policy and General Data Protection Regulation (GDPR). The information collected in the studies will not be linked back to you as an individual.

We will need to use information from you for this research project. People will use this information to do the research or to make sure the research is being done properly. The information will be limited to the email address you choose to register for the study with and will only be used to contact you about your participation during the study. Once we have finished the study, we will keep some of the data so we can check the results. We will write out reports in in a way that no-one can work out that you took part in the study.

It is intended that the findings will be disseminated to the participating critical care teams, communicated through relevant critical care forums and through journal and conference presentation. The research findings will also be written at length within the researcher's PhD thesis written to support the Doctorate programme of study.

How will my data be stored and how long will it be stored for?

We will keep all information about you safe and secure. All data will be stored in accordance with University guidelines and GDPR. Your personal information (your email address) will be deleted when the study ends. The doctoral study is due to complete in November 2023. Once all data has been analysed and the PhD officially completed, all written and recorded information will be confidentially destroyed after a further seven years.

What are my choices about 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 a specific way for the results to be reliable. This means we will not be able to let you change the data we hold about you.

The legal basis for processing the personal infomation required for the purposes of this study is that the research is being conducted in the public interest (GDPR Article 6(1)(e)). Under GDPR, you have the right to:

·       Access a copy of the information comprised in your personal data.  

·       In certain circumstances, have inaccurate personal data rectified.

·       Object to decisions being taken by automated means. It is not anticipated that any automated decisions will be made during the course of this research.

You also have the right to complain to the Information Commissioner’s Office if you are dissatisfied with the University’s processing of personal data.

Where can I find out more about how my information is used?

You can find out more about how we use your information

·       by asking one of the research team

·       by sending an email to dp.officer@northumbria.ac.uk

·       by ringing us on 0191 2156355

·       at: www.northumbria.ac.uk/about-us/leadership-governance/vice-chancellors-office/legal-services-team/gdpr/gdpr---privacy-notices

What if there is a problem?

If you are unhappy with the research, please contact the researcher, or another member of the research team, and we will do our best to resolve your concerns.

Who is organising and funding this study?

The study is being conducted by Clare Wade, PhD researcher and Lecturer in Physiotherapy in the Faculty of Health and Life Sciences, Northumbria University and Advanced Physiotherapist at The Newcastle upon Tyne Hospitals NHS Foundation Trust. This study is part of Clare’s Doctoral research which has been funded and supported by Northumbria University. The research team consists of Clare and her academic and clinical supervisors, details of whom are provided below.

Who has reviewed this study?

The research project, submission 11948 has been approved by the Faculty of Health and Life Sciences Research Ethics Committee at Northumbria University. It has been reviewed in order to safeguard your interests.

Contact details

If you have any concerns or would like further information about the study, please feel free to contact:

Clare Wade

Lecturer in Physiotherapy and PhD researcher

Faculty of Health and Life Sciences, Department of Sport, Exercise and Rehabilitation, Northumbria University, Coach Lane Campus, NE7 7XA

0191 215 6355

c.wade@northumbria.ac.uk 

Data Protection Officer at Northumbria University:

Duncan James

dp.officer@northumbria.ac.uk 

Additional points of contact:

Jason Scott (Principal Supervisor)   Jason.scott@northumbria.ac.uk  0191 215 6566

Stephen Wright (Supervisor)      Stephen.wright19@nhs.net

Katherine Baker (Supervisor)     katherine.baker@northumbria.ac.uk

Lisa Robinson (Supervisor)        lisa.robinson25@nhs.net