Page 1: Participant Information Sheet

Title: Is there a significant relationship between psychological flexibility, executive functioning and psychological distress in a population with acquired neurological conditions?

Student: Nicola Wilson, Trainee Clinical Psychologist, Teesside University

Chief Investigator and Academic Supervisor: Dr Richard House, Teesside University

Principal Investigator and Field Supervisor: Dr Geoff Hill, South Tees Hospital NHS Foundation Trust

Hello, my name is Nicola Wilson and I am studying for Doctorate in Clinical Psychology in the School of Social Sciences, Humanities and Law at Teesside University.  As part of my course, I am undertaking a research project and I would like to invite you to take part.  Before you decide if you want to please read the following information and discuss it with others if you wish.  Please contact me, or my supervisor, if you have any questions:

Nicola Wilson, Trainee Clinical Psychologist, w9126401@live.tees.ac.uk

Dr Richard House, r.house@tees.ac.uk, 01642 384131

What is the purpose of the study?

This research focusses on understanding the relationship between executive functioning and psychological flexibility. Executive functions are everyday skills involved in planning, organising and carrying out tasks. Psychological flexibility refers to a set of six processes that help us to be open to our thoughts and feelings and take action in line with our values. These both relate to mental health and wellbeing in everyday life and therapy interventions. Executive functioning, psychological flexibility and psychological wellbeing will be compared for individuals with acquired neurological conditions, those with long-term health conditions and individuals without either condition. 

Why have I been invited to take part?

You have been invited to participate because you are over 18 and meet the criteria for one of the three groups; individuals with acquired neurological conditions, long-term health conditions and those without either condition.

Do I have to take part?

No, it is up to you if you want to take part or not. Choosing not to take part will not disadvantage you in any way. You may have received information regarding this study from a medical professional, however this study is not linked to your care and will have no impact on any care you may be receiving.

What would I have to do if I decide to take part?

If you decide to take part, you will be provided with the online link to the initial questionnaires on the University Jisc website. You can request paper forms if you prefer. There will be four questionnaires for you to complete in total and send back. Overall, the questionnaires take around 15 mins. There is one questionnaire each that asks about:

  1. Your age, gender, education and details about any conditions you may have.
  2. Psychological flexibility; your openness to your thoughts and feelings
  3. Your mental health and psychological wellbeing over the last week
  4. Executive functioning; everyday skills relating to organising and planning

In the online link after completing the first 3 questionnaire’s you will be asked to enter your email to receive an invite to complete the final 4th questionnaire. Due to copyright reasons, we are not able to put it in the Jisc online platform. You will then receive an email for PARiConnect inviting you to complete the final questionnaire.

What are the possible benefits of taking part?

There are no direct benefits to taking part. This research has the possibility to improve our understanding of psychological flexibility and therapy for those with acquired neurological conditions and long-term conditions.

What are the possible disadvantages of taking part?

This research includes answering questions about your daily functioning and psychological well-being, some people may find completing these types of questions distressing. This is no more than would be typically expected in any medical appointment.

If you do need support, please contact:

  • Your GP
  • A member of your care team
  • If you are feeling suicidal, you are advised to speak to a healthcare professional or contact your local NHS crisis resolution and home treatment team. You can also contact the Samaritans (116 123, free phone).
  • If you are in immediate danger and unable to stay safe, please contact 999 immediately or attend your local emergency department.

How will we use information about you? 

We will need to use information provided by you for this research project. This information will include your contact details, your email for the online completion of questionnaires or your address if you have requested a paper version.  This information will only be used to send the questionnaires to you.

Your data will have a code number which will be written on the questionnaires for you. We will keep all information about you safe and secure. 

For the online platform for the final questionnaire, you will be asked to provide an email address. If you chose to provide your email, this will be entered into the Psychological Assessment Resources (PAR), Inc. PARiConnect site along with your participant code number, age, gender and the onset date of your injury or illness, if this applies to you. PAR-Inc hold the rights to this site.  They must follow our rules about keeping your information safe. 

Electronic data once taken from the online platforms will be stored on a protected server at Teesside University. Paper copies returned to the research team will be stored at Teesside University in a locked filling cabinet. No identifiable information will be stored as your address will be deleted once used. Your email address will be stored on the two online platforms Jisc and PARiConnect. These will be deleted as soon as data collection is completed.

For more information on how your data is stored on PARiConnect please see their private policy at https://www.parinc.com/PARiConnect-Privacy-Policy

Once we have finished the study, we will keep some of the data so we can check the results. We will write our reports in a way that no-one can work out that you took part in the study. In the event that the study is published in a scientific journal, any information published will only have a code number and no one will know it is information relating to you.

What are your choices about how your 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. 

Where can you find out more about how your information is used?

You can find out more about how we use your information 

·       at www.hra.nhs.uk/information-about-patients/

·       by asking one of the research team using the emails provided at the top of this page

·       by contacting Teesside University Data Protection Officer email: dpo@tees.ac.uk phone: 01642218121

What would happen if I started, but changed my mind?

Your answers are given a special code and kept separate from any information that could identify you. It will only be possible to withdraw your data by contacting the research team stating your special participant code number, given to you when completing the online questionnaires. Once the data has all been collected it will no longer be possible to withdraw.

What if I am unhappy or there is a problem?

If you are unhappy or there is a problem please contact me or my supervisor. If you remain unhappy, or there is an issue which you do not wish to talk to me or my supervisor about please contact:   

Matthew Cotton, Professor of Public Policy, School of Social Sciences, Humanities and Law at Teesside University M.Cotton@tees.ac.uk, 01642 342312

If you would like a summary of the results once the study is completed, please contact Nicola Wilson, Trainee Clinical Psychologist, w9126401@live.tees.ac.uk

Who has approved the research?

This research has been approved by the Teesside University School of Social Sciences, Humanities and Law Research Ethics subcommittee and Health Research Authority Nottingham 1 Research Ethics Committee (REC). IRAS ID: 297768. 

By completing and submitting the questionnaires is it assumed that you consent to take part in this study. Please take the time to read the study information and to contact the researcher to ask any questions. You can stop at any time during the completion of the questionnaires, and you do not have to submit them if you change your mind

Please click here to confirm you have read and understood the above information and consent to take part Required