NEW SPARCS2

Thank you for your interest in the SPARCS2 survey. We are currently collecting responses only from parents aged 16 or over whose child has experienced neonatal care in the UK since 2020.

By ticking below, you confirm:

• I agree to participate in this study
• I am able to understand the information provided and make my own decision about taking part
• I have read and understood how my data will be stored and used

We understand that recalling your experiences during and after neonatal care may be difficult for some parents. The survey is intended for any parents who have experienced neonatal unit care and therefore some questions deal with sensitive topics, including loss of a child. You can skip any question, so please only answer what feels comfortable. Organisations that provide support to parents are listed at the end of the survey.

Please answer the rest of this survey about your child who spent time in a neonatal unit most recently. If you had twins, triplets, or more, then answer about your baby who you feel had the most care needs

We are so sorry for the loss of your child and very grateful that you are contributing to our research. You can skip any question, so please only answer what feels comfortable. A list of organisations offering support to bereaved parents is included at the end of this survey.

We are very grateful that you are contributing to our research. You can skip any question, so please only answer what feels comfortable. A list of organisations offering support to parents is included at the end of this survey.

Your experience

All questions are optional — answer as much or as little as you would like.

We want to make sure that our survey represents all families who use neonatal care as far as possible. Therefore, we would like to understand a bit more about you and your family.

Thank you for taking the time to complete this survey. Your responses will help us understand the needs of families with babies who have received neonatal care, and contribute to improving support for future families.

As a thank you for your time, we would like to offer you £10 voucher or bank payment. So we can send you this, please enter your details below:

We'd love to hear more about the experiences of some families in one-to-one interviews, usually online. This is entirely optional and separate from the survey above. The interview would take around 30-60 minutes and would explore more about the support your family received after neonatal unit care. We are offering a £30 voucher to all parents who are selected to take part. If you would be happy for your details to be passed to the University of Cambridge research team to be considered for an interview, then please tick the box below:

Full details are in the Study Information Sheet – Interview.

Our University of Cambridge research team is interested in learning about different aspects of child development and care after neonatal unit stays. If you would be happy for the research team to securely store your contact details for the purpose of contacting you about future studies we are running, then please tick the box below. You will be free to decide whether or not you would like take part in any other studies after full information and discussion.

General support for parents of babies requiring neonatal care

• Bliss: bliss.org.uk/health-professionals/information-and-resources/resources-for-parents
• Contact (for families with disabled children): contact.org.uk
• Living Made Easy (for advice on all types of daily living equipment for disabled adult and children): livingmadeeasy.org.uk
• Genetic Alliance UK (supporting those affected by a genetic condition): geneticalliance.org.uk
• Peeps (for those affected by hypoxic-ischaemic encephalopathy): peeps-hie.org
• Mind (for mental health support): mind.org.uk
• UNICEF UK (Support for Parents): unicef.org.uk/babyfriendly/support-for-parents
• Spoons (private Facebook support group for neonatal parents): facebook.com/groups/SPOONSMCR

Bereavement support

If you have experienced the loss of a baby or child, the following organisations offer information and support.

• Sands (Stillbirth and Neonatal Death Charity): sands.org.uk/support-you/how-we-offer-support
• Child Bereavement UK (Supports families when a baby or child of any age dies or is dying, or when a child is facing bereavement): childbereavementuk.org
• Aching Arms (Charity run by bereaved parents that supports families who have suffered the loss of a baby during pregnancy, at birth or soon after): achingarms.co.uk

If you need help urgently, please contact your GP, call 111, or go to A&E.