Your experience matters: help us learn what happens after a baby leaves neonatal care

We know that having a baby cared for in a neonatal unit can be a whirlwind of emotions - and you are not alone. Every year in the UK, more than 50,000 families experience neonatal unit care.

We warmly invite you to take part in SPARCS2, a research study that aims to understand parents’ experiences after neonatal unit, and where the gaps in support are between leaving neonatal unit and starting school.

We invite you to complete a questionnaire designed by our research team.

The survey is hosted for us by Thiscovery, a secure online research platform. Thiscovery will collect your survey responses and, if you choose to provide them, your contact details, on our behalf. More information about Thiscovery's role is given throughout this information sheet, and in particular under ‘How will you use information about me?’ below.

This information is about the questionnaire part of the study only. If you have also been invited to an interview with the research team, please see the [SPARCS2 interview information sheet - insert link here].  

This study information explains what taking part would involve. Please take your time reading it, and contact us at sparcs-contact@medschl.cam.ac.uk if anything is unclear or you would like more information.

Part 1 tells you what the study is about and what will happen if you take part.

Part 2 gives you more detailed information about how the study is run. This also includes information about Thiscovery, who deliver the survey on our behalf.

What is the study about?

SPARCS2 is a research study designed to understand parents’ experiences and support needs after their baby leaves the neonatal unit, up to the point when their child starts school. You are invited to take part because you are a parent of a child who has experienced specialised neonatal care after their birth.

The survey includes questions about:

• Your child’s neonatal journey
• Support after neonatal unit care
• Family services after neonatal unit care
• Your experience in your own words
• Some background questions about you and your family

Please answer all questions if you can, though any question can be skipped. The survey should take around 10-15 minutes to complete.

Why is this study important?

We know that some babies who need neonatal care can face challenges with their later health, learning and development. We also know that support for families can vary a great deal after they leave neonatal units. We aim to understand parents’ experiences and where the gaps in support for families are. SPARCS2 aims to help find better ways to support families and children in the years between birth and starting school. By surveying parents across the UK we hope to understand more about the range of experiences families have.

Why have I been asked to take part?

We are inviting parents or carers who are 16 years old or over, live in the UK, and have a child who has been admitted to a neonatal care unit at any time since 2020.

Do I have to take part?

No. It is completely up to you to decide whether to take part. If you start the survey, you can stop at any point without giving a reason. Your decision will not affect any care or support you or your child receive, now or in the future.

What would taking part involve?

If you take part, you will be asked to complete a short online survey (around 10-15 minutes) about your experiences since your baby left the neonatal unit. Your contact details (name, email address, and optional telephone number) will be requested so that we can offer you a £10 voucher as a thank you for your time. These details will not be used for any other purpose unless you give additional permission (see below). Contact details are stored separately from your anonymised survey answers and are not linked to them.

The survey is hosted on Thiscovery, a secure digital research platform used for health research. If you provide contact details to receive your voucher, these will be passed securely by Thiscovery to a specialist voucher platform called Ayda. Ayda will then invite you directly to claim your £10 voucher or bank payment. Thiscovery does not collect or hold your bank details and you will provide these directly to Ayda if you choose a bank payment.

At the end of the survey, you can also choose to allow us to store and use your contact details again for:

• taking part in a research interview to share your experiences in more detail
• taking part in future research

These are both entirely separate and optional permissions that you may or may not chose to give.

What are the possible benefits of taking part?

There are no tangible benefits to you personally. However, you will be contributing to our knowledge and research on the specific needs and support of families whose babies have needed neonatal care. We aim to help improve support for future families.  

Can I take a break part way through answering questions?

Yes. You do not have to answer all the questions in one go. If you need to take a break, please use the same device and browser to continue where you left off.

Can I ask for help to complete the questions?

Yes. You can ask a family member or friend to help you navigate the Thiscovery website or answer the questions, if you would like. If you ask for help, please try to answer the questions from your own point of view, rather than the views of the person helping.

What are the possible disadvantages and risks of taking part?

Most questions ask about your personal experiences and carry no known risk. Talking about your child’s time in the neonatal unit, and what came afterwards, can sometimes bring up difficult feelings even when this happened some time ago. You are free to skip these questions, skip that section entirely, or stop the survey at any point.

What happens when the research study stops?  

We plan to save your anonymised information indefinitely, to ensure that we can learn everything possible from this valuable research. See Part 2 for more details on information storage.

What if there is a problem?

Any complaint about the study or any possible harm you might suffer will be addressed. The detailed information on this is given in Part 2. If you experience a technical problem with the survey itself, you can contact the Thiscovery team directly at help@thiscovery.org.

Will my taking part in the study be kept confidential?

Yes. All the information we collect will be handled in strictest confidence. Your data will be referred to by a unique participant number rather than your name, and all data will be anonymised before it is used in any report. Everyone involved in this study will keep your data safe and secure. We will follow all privacy rules. This includes Thiscovery, who host the survey on our behalf and are bound by our agreement with them to protect your information. Part 2 of this sheet tells you more about this

What will happen to the results of the research study?

The anonymised findings from this research may be shared with the general public, for example through the internet, in scientific publications, or in TV or radio broadcasts. They may be also shared with other researchers. No-one will be able to identify you or your family from any results or publications.

What will happen if I don’t want to carry on with the study?

You can stop being part of the study at any time, without giving a reason.  

If you have provided contact details and wish to withdraw your survey answers, you can do so by contacting either the SPARCS2 team at sparcs-contact@medschl.cam.ac.uk or the Thiscovery team at help@thiscovery.org. If you do not provide contact details, we will not be able to identify or remove your individual survey answers, because we will not know which answers are yours.

If you want to stop being part of the study during the interview, we will ask whether we can keep the parts of the conversation you’ve already shared or whether you would like this deleted. After your interview, you can still contact us to delete your interview at sparcs-contact@medschl.cam.ac.uk, text us on XXXXXXXXX or leave us a message to call you back.  

However, once your interview has been anonymised (it no longer has your name or details attached) and included in our analysis, it may no longer be possible to identify and remove your individual data.  

How will you use information about me?

We will need to use your name, email and/or telephone number that you provide.  People will use this information to do the research. 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.

The University of Cambridge is the sponsor of this research. The University of Cambridge is responsible for looking after your information. We will share your information related to this research project with the following types of organisations:

• Academic collaborators
• Commercial collaborators

Research data will be shared with external partners only after your personal identifying information has been removed, hence, it will be impossible for them to identify you.

We will keep all information about you safe and secure.

• The security of storage will fulfil all regulatory requirements for the control of personal information.  
• Electronic documents will be stored in password protected computers and files  

We may share or provide access to data about you outside the UK for research related purposes to:

• Perform specialised analysis
• Compare to other international data

If this happens, we will only share the data that is needed. We will also make sure you can’t be identified from the data that is shared where possible. This may not be possible under certain circumstances – for instance, if you have a rare illness, it may still be possible to identify you. If your data is shared outside the UK, it will be with the following sorts of organisations:

• Academic collaborators

We will make sure your data is protected. Anyone who accesses your data outside the UK must do what we tell them so that your data has a similar level of protection as it does under UK law. We will make sure your data is safe outside the UK by doing the following:

• Some of the countries your data will be shared with have an adequacy decision in place. This means that we know their laws offer a similar level of protection to data protection laws in the UK
• We use specific contracts approved for use in the UK which give personal data the same level of protection it has in the UK. For further details visit the Information Commissioner’s Office (ICO) website: https://ico.org.uk/for-organisations/uk-gdpr-guidance-and-resources/international-transfers/
• We do not allow those who access your data outside the UK to use it for anything other than what our written contract with them says
• We need other organisations to have appropriate security measures to protect your data which are consistent with the data security and confidentiality obligations we have. This includes having appropriate measures to protect your data against accidental loss and unauthorised access, use, changes or sharing
• We have procedures in place to deal with any suspected personal data breach. We will tell you and applicable regulators when there has been a breach of your personal data when this is legally required. For further details about UK breach reporting rules visit the Information Commissioner's Office (ICO) website: https://ico.org.uk/for-organisations/report-a-breach

How Thiscovery collects and stores your data

When you take part, Thiscovery collects your survey answers, including your name, email address and/or telephone number.

• Thiscovery separates your contact details from your survey answers, and passes your name, email address and/or telephone number to the University of Cambridge in a separate table, but only where you have given your consent for us to contact you.
• The University of Cambridge then stores your name and contact details in a separate Study Link Table, held on the University's Secure Research Computing Platform, and only ever links them to your anonymised survey answers via a unique study ID. Access to this table is restricted to named study coordinators and the Chief Investigator.
• Thiscovery takes appropriate steps to keep your information secure. However, no method of transmitting information over the internet is completely secure, so Thiscovery cannot guarantee the security of information you submit online.
• You can find out more about how Thiscovery processes your personal information, and how to manage your Thiscovery account, in Thiscovery's privacy policy.

How will you use information about me after the study ends?

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. We will keep your study data for a maximum period of 10 years. The study data will then be fully anonymised and securely archived.

Thiscovery retains a copy of your survey data for up to two years after collection, after which it is deleted from Thiscovery’s systems. Your anonymised data continues to be retained by the University of Cambridge as described above.

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. You have the right to ask us to access, remove, change or delete data we hold about you for the purposes of the study. You can also object to our processing of your data. We might not always be able to do this if it means we cannot use your data to do the research. If so, we will tell you why we cannot do this. 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.

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

You can find out more about how we use your information via the study website, by asking one of the study team, by sending an email to sparcs-contact@medschl.cam.ac.uk or by calling us on XXXXXX. For questions specifically about the Thiscovery platform, or technical problems with the survey, you can contact the Thiscovery team at help@thiscovery.org.  If you have any concerns about the use of your personal data you can contact the University’s Data Protection Officer: Information Compliance Office, University of Cambridge, The Old Schools, Trinity Lane, Cambridge, CB2 1TN, telephone 01223 764142, or data.protection@admin.cam.ac.uk

Who is organising and funding the research?

This study is organised by the University of Cambridge and funded by UKRI R&DMAP - Opportunity Mission.

Who has reviewed the study?

The scientific case for performing the study was assessed by UKRI who sent the study description to external experts for review. The ethics of the study was assessed by an independent group of people, the XXXX Research Ethics Committee. Their role is to protect your safety, rights, wellbeing and dignity. Both the scientific case and ethics of the study have been reviewed and given favourable opinion.  

Contact for Further Information  

Professor Catherine Aiken

If you have a concern about any aspect of this study, you should ask to speak to the researchers who will do their best to answer your questions (email to sparcs-contact@medschl.cam.ac.uk or telephone XXXXX). If you remain unhappy and wish to complain formally, you can do this through XXXXX.

If your concern relates to the Thiscovery platform itself, you can also contact the Thiscovery team at help@thiscovery.org.

Who insures the study?  

The University of Cambridge will arrange insurance for negligent harm caused as a result of protocol design and for non-negligent harm arising through participation in the study.