What kind of care do bereaved parents want? And how can we improve both training and support for health professionals who deliver care?
Around 6,500 parents are bereaved every year when their baby dies either before or shortly after they are born. We at Sands know how devastating this experience is. We have written Guidelines for Professionals, now in their fourth edition, aimed at guiding health professionals in how to care for families when a pregnancy ends or when a baby is either stillborn or dies soon after birth.
While Sands has a wealth of anecdotal information about what bereaved parents found helpful and unhelpful in their bereavement care, there is very little evidence to guide and ensure more standardised practice. Surveys Sands have undertaken suggest that like many aspects of the NHS, bereavement care is a post-code lottery: some units are centres of good practice and others are not. We need evidence to understand the main issues in counselling and bereavement care experienced by women and their partners. What is already done well? How can current care be improved from the parents' perspective? And what are the main challenges in training for staff who care for bereaved parents. How might problems be addressed?
What did the study try to achieve?
The project recruited recently bereaved parents for a study to understand how they felt about the kind of care they received. In-depth interviews with parents consenting to be involved focused on what was done well and not so well, from 'breaking bad news' to issues regarding discussions about delivering the baby, post mortem consent and follow-up consultations several weeks' after their baby's death with their consultants.
Researchers also asked for the opinions of maternity doctors and midwives, to find which bereavement care practices are helpful and associated with better experiences for parents, and which ones are not, and how to improve care with training.
What did the study find?
Thirty-five parents of 21 babies agreed to be interviewed for the study, and 22 obstetricians and midwives took part in group discussions. The interviews and group sessions revealed some consistent findings.
The study found that bereavement care was often not as good as it could have been. Some of the communication with parents was insensitive because the staff lacked training in how to talk to and support parents.
The care of parents when they got to the hospital varied, with some parents having to wait for a long time before their baby’s death was confirmed and action taken.
Once the baby’s death had been confirmed, hospital staff tended to concentrate on the needs of the mother, while the parents were still focusing on their baby.
One area of potential distress was around parents’ request for a Caesarean delivery. While staff tended to dismiss this as a vaginal birth is considered preferable, the study revealed that parents’ reasons for asking for a Caesarean may not have been fully considered by staff.
Parents found it helpful when staff explained the respectful nature and purpose of the post mortem.
After leaving hospital, there was no consistent plan for how follow-up care would be given to the parents. Parents would have liked more information about their next hospital appointment.
Recommendations and learning points from the study
There is a need to educate parents and staff about signs and symptoms for a baby in distress or who has died; systems to support better training of maternity staff are needed.
There is need to train all relevant staff in ultrasound scanning, and in communication and empathic skills.
Staff should have training on how to discuss the type of birth with bereaved parents, and shouldn’t forget that a baby is always a baby (even if he or she has died).
Discussions with all staff influence the parents’ decision more than staff think.
Delays, substandard care, and lack of continuity can be prevented with better care pathways and should not be blamed on investigations such as the post mortem.
Who conducted the research?
The Principal Investigator on the project was Dr Dimitrios Siassakos University of Bristol NIHR Academic Clinical Lecturer in Obstetrics. His team comprised:
- Professor Tim Draycott, Clinical Lecturer in Obstetrics, Bristol University
- Dr Robert Fox, consultant obstetrician, Musgrove Park Hospital, Taunton
- Dr Kathryn Gleeson, Senior Research Midwife, University of Surrey
- Dr Alex Heazell, Clinical Lecturer in Obstetrics, Manchester University
- Mrs Claire Storey, Bristol Sands
- Dr Sue Jackson, Psychologist, University of the West of England
- Mrs Catherine Winter, Psychologist, NIHR Western Comprehensive Local Research Network
The research took place in three different units (Southmead in Bristol, Gloucester and Taunton), and the evidence was analysed and interpreted by several researchers as well as bereaved parents.
The project started in August 2012.