New research published this week in BJOG: An International Journal of Obstetrics and Gynaecology confirms what Sands has known since the charity started supporting parents in 1978: bereaved parents do not always receive high-quality aftercare and support after their baby is stillborn.
The Sands-funded INSIGHT study, led by Dr Dimitrios Siassakos from Southmead Hospital, involved interviewing 35 parents of 21 babies stillborn in three South West maternity units in 2013. This was complemented by focus group discussions of bereavement care and experience involving 22 obstetricians and midwives. Relevant hospital practices were also audited.
The INSIGHT study found that care experienced by parents varied greatly. Some bereaved parents had endured long delays before the death of their baby was confirmed and action taken. Staff communications and actions were, in some instances, thought insensitive by parents.
A particular issue was staff moving to prioritise the needs of the mother while the parents remained focused on their baby. The need for midwives to be able to communicate effectively with bereaved parents and ‘look them in the eye’ was very important to them.
Parents were more likely to opt for a post mortem if staff took time to explain the respectful nature of the investigation, the purpose and the timescale.
Well-designed bereavement suites in hospitals were considered critically important for good bereavement care.
The INSIGHT study also highlights the disconnect between follow-up care experienced by parents of stillborn babies, which was inconsistent, and the importance to parents of clear information and follow-up appointments with their maternity team.
Dr Clea Harmer, Chief Executive at Sands (Stillbirth and neonatal death charity), said: “INSIGHT shows there is still a lot of work that needs to be carried out to improve the care, advice and information parents receive when they are given the devastating news that their baby has died. The communication lines between parents and healthcare professionals are of paramount importance and I would welcome further research on the subject.”
Dr Dimitrios Siassakos, Consultant Senior Lecturer in Obstetrics in Bristol, and Chief Investigator, said: “The INSIGHT study has shown that care for parents with stillbirth is not always as good as it could and should be. No parent should experience ‘torture’ (actual word used by parents refused a Caesarean delivery) because we failed to understand their needs or to provide them with adequate information.
“No member of staff should be ‘scarred for life’ after trying to care for bereaved parents without having specific training first. No maternity unit should fail to support parents in their difficult journey because there is no bereavement care pathway in place. Let’s listen to every voice, let’s learn from every baby’s death, and let's design better care together with parents, urgently.”
This in-depth study is the first of its kind to investigate the experiences but also the recommendations of bereaved parents and the staff who care for them.
Further research is necessary to understand and improve bereavement care globally.
Notes to editors
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Sands is the leading stillbirth and neonatal death charity in the UK. They work nationally to reduce baby deaths through promoting better maternity care and funding research. They have a programme of training and a wide range of resources designed to support professionals to improve the bereavement care they provide following the death of a baby, and they provide a comprehensive bereavement support service both nationally through their helpline and locally through around 100 regional support groups based across the UK. Find out more about Sands.
Stillbirth is the death or a baby before or during birth after 24 weeks of pregnancy. In 2015, there were 3,434 babies stillborn in the UK – Office for National Statistics (ONS). While the causes of stillbirth are wide ranging and poorly understood, supporting staff to follow best practice at all times would help to avoid some deaths.