Self-care and emotions in young people with type 1 diabetes

Information Screen

Introduction

I am a Trainee Clinical Psychologist and as part of my Doctorate I am conducting a research study investigating self-care in diabetes. Before you decide whether you would like to participate, you need to understand why the research is being done and what it will involve for you. Please take the time to read the following information carefully and talk to others about the study if you wish.

What is the purpose of the study?

Self-care through taking the right medication at the right time, as well as making lifestyle adjustments is vital for people with type 1 diabetes. However, many struggle with their self-care and it is important to find out more about this in order to know how best to support people to stay healthy. This research aims to look at the role of emotions in self-care.

Who can take part?

To take part you should be between the ages of 16-25, able to read and understand English and have a diagnosis of type 1 diabetes.

Do I have to take part?

No, you do not have to participate. You can also choose to withdraw at any time without giving a reason.

What will my involvement require?

You will be asked to complete a short online questionnaire. This asks questions about your emotions along with a few demographic questions about yourself (e.g. age, gender). We also ask for your most recent Hba1c level reading (though you can still take part if you don’t know it), along with a series of questions about medication routine and lifestyle. Participation will take around 15 minutes.

What will I have to do?

If you would like to take part, please read the consent statements on the next page. If you agree with these, please indicate this by clicking “Yes” and the questionnaire will appear on the next page. If you would like more time to decide whether you want to participate, you can come back to this page when you feel ready.

What are the possible disadvantages or risks of taking part?

As the research is looking at emotions, some questions require you to “look inwards” and think about your own mood and state of mind. It is possible that some people may find this upsetting. You are encouraged to only take part if you are happy to think about, and answer questions about your emotions. If after filling out the questionnaire you do have concerns about your emotional wellbeing, or diabetes self-care we would see this as an opportunity for you to seek support, by speaking to your regular healthcare specialist. Advice on how to find additional services that can offer support are included on the debrief screen, which will appear after you have completed the questionnaire. At the end of each section of questions you will be asked if you would like to continue; by clicking “No - withdraw from the study now” you can choose to withdraw from the study and skip straight to the debrief screen.

What are the possible benefits of taking part?

It is unlikely that you will benefit directly but your participation may give us vital information that contributes towards helping others with their self-care.

What happens when the research study stops?

No further participation is required after the online questionnaire. The questionnaire is for research purposes only, and as such you will not be able to access your individual scores. However, interested participants can opt to be emailed a summary of the study, highlighting its findings, once it is complete. Email addresses will not be linked with individual questionnaire answers and will be destroyed once we have sent out summaries.

What if there is a problem?

Any complaint or concern about any aspect of the way you have been dealt with during the course of the study will be addressed; please contact the research supervisor: Dr Laura Simonds: : l.simonds@surrey.ac.uk.

Will my taking part in the study be kept confidential?

Yes. All of the information you give will be anonymised so that those reading reports from the research will not know who has contributed to it.

All participants will be assigned a number in place of their name to ensure confidentiality. All research data will be stored securely in a database and then destroyed after 10 years. Data collection and retention will be in accordance with the Data Protection Act (1998).

Contact details of researcher and supervisor:

Principal Researcher: Alice Turland

Email: a.turland@surrey.ac.uk

Research Supervisor: Dr Laura Simonds

Email l.simonds@surrey.ac.uk

Address: School of Psychology

University of Surrey

Stag Hill Campus

Guildford, GU2 7XH

Phone number: 01483 686936

Who is organising and funding the research?

This research is being completed as part of the PsychD training in Clinical Psychology at the University of Surrey. It will form part of the researcher’s portfolio, and efforts will also be made to publish in an academic journal, and through the charity Diabetes UK.

Who has reviewed the project?

The study has been reviewed and received a Favourable Ethical Opinion (FEO) from the University of Surrey Faculty of Arts and Human Sciences Ethics Committee.

Thank you for taking the time to read this Information Screen.



