SHARE Study - Children with Life-Limiting Conditions Parent Survey

SHARE Study - Children with Life-Limiting Conditions Parent Survey

In this survey, we would really like to hear your experiences and views as a parent of a child with a life-limiting condition, in relation to COVID-19 (which we will call ‘the virus’ throughout the survey). This will help us understand what you are experiencing so that we find the best way to support families.

The survey focusing on children with life-limiting conditions is being carried out by the Martin House Research Centre (www.york.ac.uk/mhrc) and Together for Short Lives (TfSL), who are collaborating with the SHARE study.

If we know what you need and what you worry about, we can:

Information and Consent

We would like to invite you to take part in a research study to help us understand how the virus (COVID-19) outbreak is affecting you and your child with a life-limiting condition. Before you decide whether you can take part, we would like you to understand why the study is being carried out and what it will involve.

 

What is this project about, and do I have to take part?

Do I have to take part?

No, it is up to you. If you choose not to take part, this will not affect your care or treatment.

What will happen if I take part?

Taking part involves you filling in a short survey.

Why are we carrying out this study?

We are interested in your experiences during the virus outbreak, to understand what it is like, what information you might need, and how we can support you and your child.

Who can take part?

We are asking parents/carers of children and young people aged 0-25 with a life-limiting condition to take part. Participants need to be able to understand, speak, and read English.

What will taking part involve?

What will we ask you and what will happen to the information I give you?

The survey information and a questionnaire. All information collected about you will be kept strictly confidential.  For the purposes of this study, you will be given a unique numbered code. Some of what you write in the survey may be taken as direct quotes and included in research reports or publications. These quotes will be completely anonymous so no one will be able to tell the words came from you.

Concerns

What are the possible risks of taking part?

You will be asked to think about things relating to a life-limiting condition and treatment, and how these have affected your life. Some people might find this upsetting. You can always stop completing the survey.

What are the benefits of taking part?

It is hoped that the information you provide will help us understand your experiences and how we can support you and your family.

What will happen to the results of the study?

The study results are likely to be published in a scientific journal and used to develop more support for you and your family.

Who is organising this study?

The Chief Investigator for this study is Professor Anne-Sophie Darlington. The study is sponsored by the University of Southampton. 

Who has checked this study?

Before any research can be undertaken, it must be checked by a group of people called a Research Ethics Committee. This study has been checked and reviewed by the Coventry and Warwick Rec Committee IRAS 282176

What if there is a problem?

If you are unhappy with anything about this study, please let us know. If you have any concerns, you may also contact Anne-Sophie Darlington SHARE.Study@soton.ac.uk

Data Protection Privacy Notice

What will happen to your information?

Only members of the research team (Dr Jo Taylor and Professor Lorna Fraser at the University of York) and responsible members (led by Professor Anne-Sophie Darlington) of the University of Southampton may be given access to your data for monitoring purposes and/or to carry out an audit of the study to ensure that the research is complying with applicable regulations. Individuals from regulatory authorities (people who check that we are carrying out the study correctly) may require access to your data. All these people have a duty to keep your information, as a research participant, strictly confidential and with utmost respect for your privacy.

All electronic data will be stored on a secure, password-protected University of Southampton database server. Strict regulations are in place to ensure appropriate use of the data by the research team at the University of Southampton or in the future by other ethically approved research teams. This will be strictly regulated by the University of Southampton.

The University of Southampton conducts research to the highest standards of research integrity. As a publicly-funded organisation, the University must ensure that it is in the public interest when we use personally-identifiable information about people who have agreed to take part in research.  This means that when you agree to take part in a research study, we will use your information in the ways needed, and for the purposes specified, to conduct and complete the research project. Under data protection law, ‘Personal data’ means any information that relates to and is capable of identifying a living individual. The University’s data protection policy governing the use of personal data by the University can be found on its website (https://www.southampton.ac.uk/legalservices/what-we-do/data-protection-and-foi.page).

This Participant Information Sheet tells you what data will be collected for this project and whether this includes any personal data. Please ask the research team if you have any questions or are unclear what data is being collected.

Our privacy notice for research participants provides more information on how the University of Southampton collects and uses your personal data when you take part in one of our research projects and can be found at http://www.southampton.ac.uk/assets/sharepoint/intranet/ls/Public/Research%20and%20Integrity%20Privacy%20Notice/Privacy%20Notice%20for%20Research%20Participants.pdf 

Any personal data we collect in this study will be used only for the purposes of carrying out our research and will be handled according to the University’s policies in line with data protection law. If any personal data is used from which you can be identified directly, it will not be disclosed to anyone else without your consent unless the University of Southampton is required by law to disclose it.

Data protection law requires us to have a valid legal reason (‘lawful basis’) to process and use your personal data. The lawful basis for processing personal information in this research study is for the performance of a task carried out in the public interest. Personal data collected for research will not be used for any other purpose.

For the purposes of data protection law, the University of Southampton is the ‘Data Controller’ for this study, which means that we are responsible for looking after your information and using it properly. The University of Southampton will keep identifiable information about you for 10 years after the study has finished after which time any link between you and your information will be removed.

To safeguard your rights, we will use the minimum personal data necessary to achieve our research study objectives. Your data protection rights – such as to access, change, or transfer such information - may be limited, however, for the research output to be reliable and accurate. The University will not do anything with your personal data that you would not reasonably expect.

If you have any questions about how your personal data is used, or wish to exercise any of your rights, please consult the University’s data protection webpage (https://www.southampton.ac.uk/legalservices/what-we-do/data-protection-and-foi.page) where you can make a request using our online form. If you need further assistance, please contact the University’s Data Protection Officer (data.protection@soton.ac.uk)

For more Information
If you have any questions, please contact Professor Anne-Sophie Darlington the researcher who is organising the study: SHARE.study@soton.ac.uk
Or
Research Governance Office, University of Southampton, Building 37, Room 4079, University Road, Highfield, Southampton, S017 1BJ, 023 8059 5058, Rgoinfo@soton.ac.uk

 

 

Consent

I understand: