Thiscovery Community Demo

We want to understand the experiences of families after leaving neonatal units. The questions should take around 10–15 minutes to answer. Answering is voluntary throughout: you can skip any question, and you can stop at any time without giving a reason. Your answers are confidential and anonymised for research use.

The survey is being run by researchers at the University of Cambridge. Please read the participant information sheet before you begin.

At the end of the survey, you can enter your details to receive £10 compensation for your time.

A neonatal unit is a specialist area of a hospital that cares for babies who need extra medical care. Babies may need neonatal care for many different reasons, for example because they were born early (premature), were very small or unwell, or needed extra care and treatment after birth.

Neonatal units may have different names, including neonatal intensive care unit (NICU) or special care baby unit (SCBU). In this survey, we use “neonatal unit” to include all of these types of care.

Eligibility

Required

Are you 16 or older? *

Yes No

Required

Do you live in the UK? *

Yes No

Required

What year was your baby in a neonatal unit? *

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.

Consent

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

Required

Please confirm each statement (select all three) *

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

Select at least 3 options.

Section A: Your child's neonatal unit journey

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.

Required

A1. How many of your children required care in a neonatal unit? *

If you had more than one child in neonatal care, answer about the child who spent time in a unit most recently (or who had the most care needs if you had twins or more).

Section A

A2. Was your child born early (premature)? (before 37 weeks)

Yes No

A3. Approximately how long did your child stay in a neonatal unit?

Two days or less More than two days, but less than a week At least a week, but less than one month At least a month, but less than two months 2 months to less than 4 months 4 months or more

A4. Before they were born, did you expect your child to need neonatal unit care?

Yes, I knew neonatal care would be needed I wasn't certain but knew neonatal care might be needed I wasn't expecting my child to need neonatal care Not sure

A5. Is your child still with you today?

Yes My child has died My child is not with me for another reason (for example, following adoption, fostering, or do not have custody)

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.

Section D: In your own words

A6. How old is your child now?

A7. How would you describe your child's health and care needs now?

No additional needs beyond most children of their age Some additional needs, for example with mobility, vision, or learning, managed by occasional extra support (e.g., therapy appointments, specialist equipment, or a support plan at nursery/school) Complex additional needs across several areas of care requiring ongoing or daily support (for example combined physical, medical, and developmental needs, multiple specialists involved, or a formal care/educational plan)

A8. Have you ever been told by a healthcare professional that your child has any of the following serious or persistent health or developmental conditions? (Select all that apply)

A9. Do you have specific concerns about your child's development, even if these are not recognised by health professionals or you have not asked a health professional about them?

A10. To what extent do you feel your child's health needs are being met at the moment?

Completely Mostly Somewhat A little Not at all

Section B: Support after neonatal unit care

B1. Did you discuss your child's long-term health and development with any professionals before leaving neonatal care?

Yes, this was fully discussed Yes, but I still had some questions No, this wasn't discussed

B2. Did you find this discussion helpful overall?

Yes, I was keen to discuss the longer term Somewhat helpful No, I would have preferred to discuss at a later time No, I would have preferred not to have this discussion at all Not sure

B3. Would you have liked to have this kind of discussion before leaving neonatal care?

Yes No I don't know

B4. When you left the neonatal unit, was any follow-up care arranged for your child with any professionals (e.g., hospital, therapists, GP)?

I was given one or more appointments I had contact details but no appointments No, but I would have liked some No, but I didn't feel we needed any Not sure

B5. How supported did you feel with your child's health and care needs by professionals (e.g. doctors, health visitors, social workers) at each of these stages? (choose N/A if it doesn't apply)

	Very supported	Somewhat supported	Neither supported nor unsupported	Somewhat unsupported	Very unsupported	N/A
First few weeks at home
First 6 months at home
6 months – 1 year
Starting nursery/preschool
Starting school

B6. Has your child had a 2-year progress check with a child development team (including for example a paediatrician, occupational therapist, speech and language therapist?)

Yes No Not yet Don't know

B7. Did your nursery/preschool staff know about your child's neonatal unit stay?

Yes, I told them without being asked Yes, they asked me No Not sure My child does not attend nursery/preschool

B8. Has your child had a 4-year progress check with a child development team (including for example a paediatrician, occupational therapist, speech and language therapist?)

Yes No Not yet Don't know

B9. Were any of the following offered to help your child transition into school? (Select all that apply)

School visits Transition meetings/events Shared information between nursery and school Phased/gradual start A transition document about my child's needs A named contact at the school Special educational needs coordinator involvement in planning None of the above was offered Not sure

Section C: Family services after neonatal unit care

C1. Since leaving the neonatal unit, have you used any of the following for your child? (Select all that apply)

Breastfeeding support Other infant feeding, weaning or nutrition support Advice/services for my child's health, including sleep Playgroups, play sessions or baby classes Advice/services for my child's disability or learning needs Parenting support or classes None of these

C2. Which best describes why you didn't access these services (check all that apply)?

I didn't feel I needed this support I wanted it but wasn't offered I wanted it but wasn't aware it existed I tried but couldn't access it (e.g. waiting list, not available locally) What was on offer wasn't suitable for us Other

C2. Other (please specify)

C3. Please tell us how much support you received, of the different kinds listed below, since leaving the neonatal unit (One answer per row.)

	Received enough	Received some but not enough	Received none	Didn't need this	Prefer not to say or not sure
GP reviews
Paediatrician reviews
Developmental reviews
Health visitor reviews
Physiotherapy
Occupational therapy
Speech and language therapy
Feeding support (lactation/dietician)
Sleep support
Parenting guidance
Parent emotional/mental health support
Financial or practical support
Respite or short breaks
Peer/parent community support
Support for siblings/other children
Social work support
Educational support (e.g. SEN co-ordinator)

C4. For the services you felt you needed but didn't receive, what got in the way? (Select all that apply)

I didn't know about this service I tried, but couldn't access this service The waiting list was too long I was told we were not eligible The service was too far away The cost was too much Other Not sure

C5. What difficulty did you have with accessing services?

C6. For any support you had to wait for, roughly how long was the longest wait?

Less than 1 month 1–3 months 3–6 months 6–12 months Over a year Not applicable

Section D: In your own words

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

D1. Looking back, what's one thing you wish had been different about the support you and your child received?

D2. Is there anything else about your experience since your child left the neonatal unit you'd like to share?

D3. What do you think is most important for doctors to research about children who have been in a neonatal unit? (Select up to 3)

Long-term physical health Long-term learning and educational needs Emotional and mental health for the child Impact on the wider family (parents, siblings, relationships) Financial or practical impact on the family How different services communicate and work together Genetic and medical predictors of long-term outcomes Something else (please specify) Not sure

D3. Something else (please specify)

D4. Please tell us about any sources of support that have been helpful to you since your child was born. These might be professional services such as Health Visitor or GP, or support from friends or family, remotely or in person.

Section E: About your family

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.

E1. What is your relationship to your child?

Mother Father Carer or other

E2. What was your age when your child was born?

Younger than 18 18 – 24 years 25-34 years 35-44 years 45 years or older Prefer not to say

E3. What is your ethnic group?

E4. What part of the UK do you currently live in?

E5. What best describes what you are doing at the moment?

Employed (full time) Employed (part time) Self-employed Parental leave Unemployed Student Looking after home/family Long-term sick/disabled Other

E6. What is your highest educational qualification?

University Higher Degree – Doctorate (PhD) University Higher Degree – Master's Degree (MA, MSc, MPhil) University Degree – (e.g. BA, BSc) Higher education diploma A / AS / S levels (or education to 18 years) O level / GCSE (or education to 16 years) Other academic qualifications None of these qualifications

Compensation and optional follow-up

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

Name

Email

Phone (optional)

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 ~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.

Interview opt-in

Yes, I would be happy to be contacted about taking part in an 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 to take part in any other studies after full information and discussion.

Future studies opt-in

Yes, I would be happy to be contacted about taking part in future studies

General support for parents of babies requiring neonatal care

Bliss: bliss.org.uk
Contact: contact.org.uk
Mind: mind.org.uk
UNICEF UK Baby Friendly: unicef.org.uk/babyfriendly

Bereavement support

Sands: sands.org.uk
Child Bereavement UK: childbereavementuk.org
Aching Arms: achingarms.co.uk

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

SPARCS2

Eligibility

Consent

Section A: Your child's neonatal unit journey

Section A

Section D: In your own words

Section B: Support after neonatal unit care

Section C: Family services after neonatal unit care

Section D: In your own words

Section E: About your family

Compensation and optional follow-up

General support for parents of babies requiring neonatal care

Bereavement support

Legals

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