Frequently asked questions
What is Stillbirth Stories?
Stillbirth Stories is an online, audio archive funded by Wellcome. It is a unique collection of interviews with parents and clinicians talking about their experiences of stillbirth.
In 2015, one in every 227 babies delivered in the UK was stillborn: a baby born with no signs of life after 24 weeks of pregnancy. It can conservatively be estimated that more a third of a million women living in the UK today have experienced a stillbirth; with an even greater number of bereaved fathers, family members and friends all affected by the experience.
Located at www.stillbirthstories.org, the website features 22 interviews which can be listened to in full or as short clips, searchable by theme. Parental themes include: Being told your baby has died, Deciding about a post-mortem and Pregnancy after loss. Clinician themes include: Showing emotion, First experiences and Talking to and supporting families.
The archive offers alternative peer support to bereaved families and serves as a learning resource for clinicians. Interviewees’ experiences span five decades, from the 1960s to the present day. There are 17 interviews from bereaved parents and five from clinicians of different medical backgrounds – from student midwife to senior obstetric consultant.
The testimonies are authentic, compelling and poignant. They illustrate both the immediate and long-term impact stillbirth can have personally and professionally.
How is Stillbirth Stories funded?
Stillbirth Stories is funded by Wellcome, which is a global charitable foundation that exists to improve health for everyone by helping great ideas to thrive. It is both politically and financially independent and supports scientists and researchers.
Tom Ziessen, Engaging Science Manager at Wellcome, says: “We are happy to be supporting Stillbirth Stories as a platform sharing personal experiences of loss, with perspectives from parents and clinicians, and hope this project will lead to increased understanding of stillbirth and contribute to improvements in bereavement care.”
How did you find and select the interviewees?
We limited the number of people we interviewed at this initial stage: 22 interviewees – 17 parents and five clinicians. We selected this figure because it gave us scope for a diversity of perspectives and was a realistic number of interviews to undertake, given the funding available.
We approached the majority of our parent interviewees working with St Mary’s Hospital in Manchester, where our co-applicant, Professor Alex Heazell is based. This allowed us to ensure that there was appropriate follow-up support available should any of our parent interviewees want it. Also, working closely with one maternity unit allowed us to trial a methodology that we hope to roll-out to other units in the future to broaden the archive.
To reflect the differences in bereavement care in maternity units across the country, we interviewed some parents who gave birth to their stillborn child at another hospital but received subsequent care at St Mary’s. We selected our clinician interviewees from different hospitals and professional grades – from student midwife to senior obstetric consultant.
One challenge we encountered selecting interviewees was a difficulty finding a sufficiently representative group of parents willing to be interviewed. We felt strongly that diversity was essential to the value of the archive, so some parent interviewees responded to a request we posted on social media. We found two of our historic interviewees – a married mother and father – via a newspaper article.
Can I upload my story?
No, not currently. Within the remit of our present grant we do not have the resources to increase the number of testimonies in the archive. Our long-term ambition for Stillbirth Stories is to expand the archive. We are keen to explore ways for people to upload their own experiences onto the website in the future.
Can I contact an interviewee?
We are unable to put people in touch with interviewees featured in the archive. We cannot mediate these requests and in this most sensitive of areas, we have a duty of care to the people who have shared their stories.
There are links to national support organisations on the footer of our website pages for those seeking additional support and advice.
If you have a media request, please visit the Contact us section, of the website where Emma Beck and Nicola Gibson can be contacted directly.
Can I download the interviews?
Yes. Each individual interviewee or couple – if both parents were interviewed – has their own page on the website where you can listen to their complete interview. Alternatively you can download the interview as an mp3 file by clicking on ‘Download mp3’ under each audio timeline.
There is also the option of listening to short, edited clips from the interviews. Clips are grouped together and searchable under headings in the Themes section.
Are transcripts of the interviews available?
Yes. Each individual interviewee or couple – if both parents were interviewed – has their own page on the website where you can listen to their complete interview by clicking on the icon. You can also read a full transcription of the interview by clicking on ‘read transcript with time code’ under the audio timeline, which opens a full, scrolling transcription of the interview. Click on the orange timecode reference (e.g 0.40) to skip to that part of the interview.
Can I share interviews via social media?
Yes. Each individual interviewee or couple – if both parents were interviewed – has their own page on the website. These individual pages can be shared via Facebook and Twitter by clicking on ‘share story’ under the audio timeline.
How were the interviews recorded?
The interviews were conducted in the oral history tradition. Interviews took place in surroundings familiar to the interviewee – most at home and some clinicians at their workplace. We used a small hand-held, broadcast quality recorder and sat in a relaxed manner giving the interviewee the best opportunity to talk as naturally and fully as possible.
Parents were invited to talk about their hospital experience, clinical care, access to bereavement services and additional clinical care offered during subsequent pregnancies, as well as their personal feelings. Clinicians were invited to reflect on their personal feelings in response to stillbirth and bereavement, as well as their experiences of training and their professional role and duties.
It was important to us that interviewees found the interview experience constructive; throughout we were aware of the ethical considerations involved. We ensured that everyone we contacted was given clear information about the intentions of the project and issues around consent.
Will you be developing the archive and increasing the number of interviews?
As it exists now, this initial phase of Stillbirth Stories is a pilot project funded by Wellcome. Having assessed the use and reach of the archive in its current form we intend to apply for secondary funding to increase the number of interviews. We are particularly keen to record more historic testimonies to offer insight into changes in maternity and bereavement care over the last 50 years.
We are also keen to explore how we might make the archive more interactive so that parents and clinicians can upload their own stories in the future. Another ambition is to work in partnership with professional bodies, NHS England, charities and organisations to develop the archive into a formal educational and training resource.
We are animating some of the edited audio clips to be shareable via social media.
How do I express interest in sharing my story?
We don’t currently have a fixed time frame for developing the website. However when applying for future funding, it would be good to demonstrate people’s interest in sharing their stories. If you would be keen to share your experience in the future please complete a form here. Please note that this is an informal expression of your interest only.
Thank you for contacting us, but at present we are only a team of two, so it may take us some time to respond to you directly. We appreciate your patience.
Are the producers available to talk about Stillbirth Stories at events / conferences?
Please visit the Contact us section on the website to register your request.