Pregnancy or newborn baby loss research project
Project title: Pregnancy or newborn baby loss research project
Lead Researcher: Caroline Killpack
We are looking for volunteers to take part in a research project. Before you decide if you might like to take part it is important for you to understand why the research is being done and what it will involve. Please take time to read the following information carefully and discuss it with others if you wish. Ask us if there is anything that is not clear or if you would like more information.
What is the research about?
As the independent health and social care regulator in England, the Care Quality Commission (CQC) listen to people using services to help highlight where care is good and where it needs to be better. This research study is exploring how the experience of people who have experienced pregnancy or newborn loss can be gathered to help improve maternity services in England.
Whilst individual hospitals do ask people to share their experience with them, there isn’t a standard approach across England for parents to give their feedback, and for changes to be made to healthcare services.
People share their feedback in different ways, but CQC would like to understand the best ways for those who have experienced pregnancy or newborn loss to tell them about their care.
To do this, CQC need to speak to people with lived experience.
How do I express my interest in taking part?
If you would like to register your interest in taking part, please click the button at the bottom of this page.
When registering your interest, you will be asked to complete a short form about you and your availability. A researcher will be in touch with you shortly afterwards.
We may not be able to interview everyone who registers their interest, due to the number of interviews planned for this research. Thank you, in advance, for your understanding.
I’m interested in taking part: what will happen if I do take part?
If you are invited to take part, you will chat with a researcher from Picker to talk about your experience which could take about an hour. During the discussion, our researcher will chat with you about ways parents might want to share their experience. We’ll also spend some time talking about why it’s important to hear the experience of parents and what could be learnt. You can share as much or as little as you want to during the discussion. You can also stop the discussion at any point. We recognise that everyone is different and your experience is unique.
The discussion will be via video conferencing, or telephone or in person if you’d prefer. Once the discussion is complete you will be given a £50 Amazon or ‘Love2Shop’ voucher as a thank you for your time.
What are the benefits of taking part?
By participating in this research, your views will help shape the recommended approach for services to hear from parents, and to support improvements where they may be needed.
Do I have to take part?
- No – it is up to you whether or not you decide to take part.
- You can decide not to take part in the research at any time – even after it has started, without giving a reason.
- Taking part in the research or declining to take part will not affect the NHS care or support you receive now or in the future in any way.
Will what I say in this study be kept confidential?
- Yes – your views will be kept entirely confidential.
- We will report your views anonymously, ensuring no one can link your comments to you.
- The discussion will be recorded, with your permission. We record discussions because it is hard to take notes of what people say, listen carefully and think all at the same time.
- The recording will be held on a secure, access restricted network folder only accessible by the researchers carrying out the discussions.
- The recording will be securely destroyed one month after the discussion.
- A written copy of the recording will be produced and analysed using software. Anything that you tell us which may identify you, will be deleted from the written copy.
- No identifying information (such as names) will be shared with anyone who provides your treatment or care.
- You will be asked to complete a consent form that will be used only by researchers to confirm you have chosen to take part.
What will happen to the information that I share?
The information that you share will be used to inform an evaluation report for CQC. This report will present recommendations to CQC about the way in which parents want to give their feedback, and what they want to give feedback about. What you tell us will not be shared with anyone who has been involved in your or your baby’s care, either now or in the future.
Picker complies with the Data Protection Act 2018 and the Market Research Society’s (MRS) Code of Conduct by maintaining certifications from the International Standardisation of Organisations. Any sensitive or confidential material is stored securely in line with our data protection policy.
Ready to take part?
If you would like to register your interest, please click the button below.
Contact Details
For any questions about the research please contact Caroline Killpack, Lead Researcher, on caroline.killpack@pickereurope.ac.uk or 01865 208116.
For any information governance queries, please contact Nicola Porter on Nicola.porter@pickereurope.ac.uk.
Where to find support
We understand that this may be difficult to talk about. If at any point during the research you need some support, please reach out to one of the following organisations to access their support networks:
Sands provides support to anyone who has been affected by the death of a baby before, during or shortly after birth. To contact them please see: Support for you | Sands – Saving babies’ lives. Supporting bereaved families. Or call their helpline on 0808 164 3332.
The Miscarriage Association provides support and information to anyone affected by miscarriage, ectopic pregnancy or molar pregnancy. To contact them please see: Miscarriage and pregnancy loss support – The Miscarriage Association). Or call their Monday- Friday support line (9am-4pm): 01924 200799.
Tommy’s provide support for anyone who has experienced or is experiencing baby loss. To contact them please see: Baby loss information and support | Tommy’s (tommys.org) . Or call their midwife-led bereavement helpline on 0800 0147 800.
Picker is an independent health and social care research charity (www.picker.org.uk) working with the Care Quality Commission (CQC, www.cqc.org.uk).