The results of Listening to Parents, the first national survey of bereaved parents ever undertaken, have been launched today, 9th April, at the Royal Society of Medicine.

Around 700 parents were surveyed, in order to understand the experiences of individual women and their partners about the stillbirth or death of their baby in the neonatal period. The work was led by a team at the National Perinatal Epidemiology Unit (NPEU) in Oxford with the support of Sands and baby charity Bliss, and its aim is to improve care for families in the future. 

While the study found that the quality of care provided to parents at this devastating time was generally good, there were cases in which it was varied, with some women experiencing poor and insensitive care.

Questionnaires were sent to women in England who had a stillborn baby or a baby who died as a newborn in two three-month periods in 2012. There were separate questionnaires for women whose baby was stillborn and for those whose baby died shortly after birth, and 473 and 248 women responded, respectively. The surveys covered the care the women and their partners received during pregnancy, labour and birth, around the time their baby died and afterwards.

The responses showed the aspects of care from midwives and doctors that were most valued, and that parents wanted to be treated with kindness and respect as individuals, and to feel that their needs were understood. They wanted their baby to be recognised as an individual, cared for and treated with respect. And most of all, they wanted their worries and concerns to be listened to.

The survey responses showed that generally the majority of women felt they’d received good care and had been treated with kindness. However, at each point from pregnancy through labour and birth, a significant proportion of women and their partners felt their worries hadn’t been listened to, they hadn’t been taken seriously or they hadn’t been wholly involved in treatment decisions.

While almost all women were given a private or single room after the stillbirth or death of their baby, in up to half of cases, this was within earshot of healthy, crying babies.

Neal Long, Sands chief executive, said: 'The value of this survey is that it identifies best practice, and the huge difference it can make to women and their partners at this most terrible time. But it also shows that access to high-quality support and facilities remains a bit of a lottery.'

A report by BBC health reporter, Philippa Roxby, is featured online today at http://www.bbc.co.uk/news/health-26889862

To read Oxford University’s press release, visit https://www.npeu.ox.ac.uk/listeningtoparents/