Parents who face the heartbreaking loss of their child should get a specific keyworker to support them through bereavement, wherever they are in the country, according to a set of recommendations informed by new research.
In an academic paper published in Archives of Disease in Childhood today, bereaved parents and academic experts from the University of Birmingham, University of Bristol and Birmingham Community Healthcare NHS Foundation Trust have outlined their recommendations for support that all bereaved parents should receive as part of the Child Death Review (CDR) process. The aim of Child Death Review is to learn from deaths and improve quality of care for children and families.
The Child Death Review toolkit has been endorsed by the national charity Child Bereavement UK and shared with the Royal College of Paediatrics and Child Health and includes recommendations for parents having a named bereavement support key worker contact them within 24 to 48 hours after their child has died.
The recommendations follow a study funded by the National Institute for Health and Care Research involving interviews with 21 multi-disciplinary healthcare professionals and 23 bereaved parents of children who died in 2021-22, during hospital admission, or under palliative care. The study outlined key experiences that parents went through during the CDR process including how they were told about reviews, professionals not understanding about the parents' role, and not having a specific key worker to support them during the process. Bereaved parents, healthcare professionals and bereavement support charities worked together to design the toolkit to enable better support for families and improved communication about Child Death Review.
The toolkit also includes key suggestions to help clinicians receive appropriate training for supporting bereaved parents and provides a structured format for parents to ask questions, give feedback to professionals and learn the outcomes of Child Death Reviews:
Dr Joanna Garstang, Clinical Associate Professor of Child Protection at the University of Birmingham, Consultant Community Paediatrician, Birmingham Community Healthcare NHS Trust and principal investigator of the study said:
"As a parent, losing a child is probably the most traumatic experience and causes unimaginable pain. Parents should be met with the greatest care and compassion and be able to contribute to Child Death Reviews, where professionals seek to learn from and understand what factors led to that child's death.
"Sadly, many families around the country face a postcode lottery of uneven models of personal support and at times a lack of communication about the nature of a review which can lead to feelings of guilt, frustration and abandonment.
"Our study and work on the Child Death Review toolkit sought to learn from the experiences of parents and healthcare professionals that have gone through this process. Our findings show that many families have not had a level of care and support to understand what to do in a CDR and their role and voice in the process. Our toolkit provides practical and systematic recommendations for healthcare professionals, assuring parents that those providing them support are trained and equipped in the aftermath of their darkest moments."
'Forever missing a piece' – parent perspective on losing their child
Hannah Johnston and her husband Keith faced their "world falling apart" after tragically losing their youngest son, William who died after being taken ill suddenly in 2021. William, who was 21 months and had never shown any signs of serious illness, had a seizure and went into cardiac arrest and was rushed urgently to a local hospital in an ambulance.
Hannah recalls: "It was like a scene from a medical drama. There were 20 people in the room. Lots of people introducing themselves to us. Keith and I were just stood there like a deer in in headlights, not being able to quite process what was happening here. And they said that we would need to be moved to a paediatric intensive care unit."
William was then taken with his mum to a Paediatric Intensive Care Unit and placed on life support with 24-hour care. Sadly, he died four days after first being admitted.
"We left the hospital that day and at the time the only aftercare we received was being handed a booklet called When a Child dies. I felt like I had taken a bullet to the chest. To be given this book and being put into a taxi, with nothing. No number to call, no support. How do you tell a five and a six-year-old that their brother has died? What language do you use? How much about death do they understand?"
For Hannah and her family, the offer of support came slowly and their experience of the Child Death Review didn't provide them with any answers or sense of support:
"We waited seven weeks for a first face-to-face meeting, but even after that there were still a lot of unanswered questions. The Review itself took place six months after William had died but before genetic testing had come back so the whole picture wasn't there at that point. A lot of key agencies didn't attend which was really disappointing and disheartening. Your child is dead. They don't have a voice. They can't leave their mark on the world anymore, and it's almost as if to the people who cared for him, it didn't matter anymore."
Hannah recalls that she was offered support from a local hospice and the charity SUDC that provided bereavement care.
Hannah took part in the study as she recognised that advocacy and sharing her son's story was part of her own family's grief journey and to do it in memory of William.
"I knew a lot of families wouldn't be able to do what I'm doing. Sit and share their story, advocate for other families. I really wanted to do something positive and hopefully make a difference in his name going forward.
"I know that there's pockets all over the country where some families receive exceptional care and other families don't have anything, and I just want for there to be consistency across the board for any family who goes through the worst, most unimaginable pain."
Child Bereavement UK, a charity which supports children and young people when someone important to them has died or is not expected to live, and parents and the wider family when a baby or child of any age dies or is dying, has worked alongside Dr. Joanna Garstang and the National Child Mortality Database to develop training for professionals involved in Child Death Reviews and in how to best use the Toolkit with families affected by the death of a child.
Maninder Hayre, Director of Services and Partnerships at Child Bereavement UK said:
"When a baby or child dies suddenly or unexpectedly, lives are shattered. Families we support at Child Bereavement UK tell is that their world is turned upside down. There are often so many agencies, procedures and people involved such as the hospital, doctors, nurses, coroners, and sometimes even the police, that it can be overwhelming for parents and carers to take everything in. It may be some time before they face a post-mortem and a coroner's report and they ultimately put their grief on hold, waiting for answers; in some cases they may never know why their child died.
"It is vital that parents and carers have the opportunity to process what is happening and have a voice. Child Bereavement UK welcomes the Child Death Review Toolkit for clinicians and we fully endorse the recommendations of this study to ensure that bereaved parents have a key worker to help guide and support them through what is undoubtedly the darkest time in their life."
Nikki Speed, CEO and Co-Founder of SUDC UK said:
"Every family who loses their child deserve a compassionate, trained key worker. SUDC UK were privileged to be involved in this pivotal project that has created an evidence base for change."
Paul Dimitri, Vice-President for Research at the Royal College of Paediatrics and Child Health said:
"The loss of a child is an unparalleled tragedy, bringing immense sorrow to parents, carers, and families. The Child Death Toolkit from the Birmingham team is a commendable resource, offering vital support to clinicians as they guide grieving families through this immensely difficult time."
