National Children’s Hospitals Bereavement Network standards for supporting families following the death of a child
Intended for healthcare professionals
Evidence and practice    

National Children’s Hospitals Bereavement Network standards for supporting families following the death of a child

Francis Edwards Retired Lead Nurse for Children’s Palliative Care and Bereavement Support Team, Bristol Royal Hospital for Children, University Hospitals Bristol NHS Foundation Trust, Bristol, England

Why you should read this article:
  • To enhance your understanding of the processes that take place after the death of a child

  • To enable you to communicate sensitively and effectively with bereaved families and assist them to understand the next steps that need to be taken

  • To support you to develop your own local policy and standard operating procedure for this important aspect of care, in accordance with best practice and statutory guidance

In England, a child death review process must be undertaken when a child dies, regardless of the cause of death. Scotland and Wales have their own version of the child death review process, while it is the author’s understanding that Northern Ireland are still developing their process. An important aspect of this process is family engagement and bereavement support.

This article is an introduction to the bereavement support standards developed by the National Children’s Hospitals Bereavement Network, a newly formed group of specialist children’s nurses and allied health professionals interested in bereavement care. These standards translate the statutory requirements into practical guidance for healthcare professionals working in children’s hospitals in the UK or district general hospitals that offer services for children and families. They also apply to NHS trusts that care for children and need to develop a local policy and workforce with the appropriate skills to provide bereavement care, thereby improving the experiences of families and healthcare professionals. The standards would also be applicable to other NHS trusts and healthcare services in the UK who want to develop an approach to bereavement care and support for families.

Nursing Children and Young People. doi: 10.7748/ncyp.2020.e1336

Peer review

This article has been subject to open peer review and has been checked for plagiarism using automated software

Correspondence

Francis.worth33@gmail.com

Conflict of interest

None declared

Edwards F, on behalf of the National Children’s Hospitals Bereavement Network (2020) National Children’s Hospitals Bereavement Network standards for supporting families following the death of a child. Nursing Children and Young People. doi: 10.7748/ncyp.2020.e1336

Published online: 23 September 2020

Introduction

The death of a child has a devastating effect on their family and becoming a bereaved parent has been described as ‘joining a club that no one wants to belong to’ (Tonkin 2008). Dominica (1997) stated that: ‘To live through the death of your child is perhaps one of the most painful experiences known to humankind… The death of your child leaves you feeling helpless, guilty, powerless and broken.’ In 2009, the then prime minister Gordon Brown said in the House of Commons, ‘every child is precious and irreplaceable, and the death of a child is an unbearable sorrow that no parent should ever have to endure’ (Hansard 2009).

In England, a child death review process must be undertaken when a child dies, regardless of the cause of death (Department of Health and Social Care (DHSC) and Department for Education (DfE) 2019). The DHSC and DfE (2019) guidance develops the statutory requirements set out in the Working Together to Safeguard Children guidance (DfE 2015). Of the devolved nations, Scotland (Scottish Government 2014) and Wales (Public Health Wales 2020) have their own version of the child death review process. It is the author’s understanding that Northern Ireland is still developing its process.

The child death review process applies to every live birth and young person up to their 18th birthday. For the purposes of this article, the term ‘child’ includes neonates, infants, children and young people up to their 18th birthday.

The term ‘family’ includes parents, siblings and grandparents, as well as step-parents or partners, adoptive parents, foster carers and guardians, or those with a significant close relationship to the child who has died, such as teachers and friends.

Most child deaths take place in acute care settings. Of the 3,575 child deaths reviewed in England in the year ending 31 March 2017, 2,444 were in an acute hospital, 153 were in a hospice and 148 were in public spaces (DfE 2017). Therefore, healthcare professionals and acute trusts have a responsibility to ensure there are services in place to support these families, as well as to support healthcare professionals in providing this aspect of bereavement care.

It is essential that all nurses, healthcare professionals and trusts involved in the care of children understand the implications for clinical practice of the child death review process, as set out in the statutory guidance (DHSC and DfE 2019) and have a clear local policy in place for the delivery of this guidance in clinical practice. One important aspect of this process is family engagement and bereavement support.

This article provides an overview of the National Children’s Hospitals Bereavement Network (2020) bereavement support standards for children’s hospitals in the UK or district general hospitals that offer services for children and families, which were developed to translate the statutory requirements into practical guidance for healthcare professionals and trusts.

This article can only discuss some aspects of the standards, and readers can access the full document at: tinyurl.com/SL-bereavement-standards

Key points

  • The care that is provided to bereaved families at the time of a child’s death and in the following days and weeks should be considered as important as the care that is provided in the child’s life; the end of life does not mean the end of care

  • The National Children’s Hospitals Bereavement Network (2020) bereavement support standards can assist healthcare professionals in providing care and communicating with bereaved families following the death of a child

  • Every family needs to have a key worker or point of contact in the NHS trust, so that the family know who to communicate with

  • A standard operating procedure or guidelines for supporting families following the death of a child should be in place and families should be aware of what services are available to them

Developing the bereavement support standards

In October 2015, a group of specialist children’s nurses and allied health professionals with an interest in bereavement issues from across the UK held an exploratory meeting in Birmingham, England, to discuss whether a national network group would be useful. There was unanimous agreement that it would be and the National Children’s Hospitals Bereavement Network was subsequently established.

Since 2015, there have been many changes and developments about the child death review process in England. There has been a review and new guidance published (DHSC and DfE 2019), a national database has been developed to collect uniform data across the country, and there has been guidance on the support of bereaved families following the death.

It became clear from the group’s discussions that there were varying levels of bereavement support being provided among children’s hospitals and in other NHS hospitals where children are cared for. It became evident that there was a requirement for standards to be developed to ensure that healthcare professionals working in areas where a child may die provide a minimum level of bereavement support and follow-up care to families, in accordance with the statutory guidance (DHSC and DfE 2019). This includes support during the initial days and weeks following the death of a child, as well as ongoing support. In the author’s clinical experience, early intervention with bereaved parents can have a positive effect on their long-term outcomes and may prevent them from needing to use the complaint process or litigation to obtain the information they need. However, this is an area that requires further research.

The bereavement support standards were developed by the National Children’s Hospitals Bereavement Network through an iterative process that took place over two years and they are now ready for national and local use. They have been reviewed by the Association of Chief Children’s Nurses and the Paediatric Intensive Care Society and have received verbal approval. The group felt that these are the two main organisations relevant to child death in the acute setting and are therefore the most likely to find these standards useful in their clinical practice and the development of policy.

Bereavement support standards

The bereavement support standards outline the recommended minimum level of bereavement support and follow-up care that healthcare professionals working in acute children’s hospitals in the UK should provide to families who have experienced the death of a child. They also apply to district general hospitals that offer services for children and families. The standards are underpinned by the model of support recommended in the National Institute for Health and Care Excellence (NICE) (2019) guideline on end of life care for infants, children and young people, particularly in the section on care and support for parents, carers and healthcare professionals in relation to the death of any child or young person.

The bereavement support standards apply regardless of the circumstances of the child’s death. They suggest the level of bereavement care that acute trusts should provide to families – including the provision of information on what the family should expect before they leave hospital – and who should provide this care. The standards also define the roles of various individuals in local services, including key workers and case managers. They aim to ensure bereaved families receive best practice by providing a robust, standardised framework for bereavement care that is equitable across the NHS trust.

The bereavement support standards translate the statutory requirements that must be followed into guidance that healthcare professionals and trusts can use in clinical practice, with the aim of:

  • Improving the experiences of bereaved families and healthcare professionals following the death of a child.

  • Assisting parents to understand the events leading up to the death of their child and offering them the opportunity to ask any questions they may have, which can enable them to grieve.

  • Ensuring that information from the child death review process is systematically captured in every case to enable learning, prevent future deaths and develop local services.

Box 1 provides examples of bereavement support that healthcare professionals can provide.

Box 1.

Examples of bereavement support that healthcare professionals can provide

Bereavement support may include:

  • Information on who to inform of the death

  • Supportive conversations with healthcare professionals, social care staff and, in some cases, the police, about the child death review process and next steps that need to be taken

  • Supportive conversations with the child’s school or college

  • Practical support, such as advice on arranging a funeral and talking with siblings

  • Information on what to do with equipment and medicines

  • Supportive conversations with health and social care staff

  • Signposting to support from voluntary, community and faith sectors

  • Information about local support services, telephone helplines, national and online support organisations

  • In some cases, referral to specialist support from trained bereavement counsellors or mental health professionals

(Adapted from National Children’s Hospitals Bereavement Network 2020)

Model of bereavement services for families

The bereavement support standards suggest a three-tiered pyramid model that is adapted from Craft and Killen’s (2007) model. The model outlines the levels of support that should be available, who is likely to need support, and who should provide it. It also details what the effective provision of care for bereaved families entails. Figure 1 shows the three-tiered model of bereavement services for families after the death of their child.

  • Level 1 – the foundation of services that are offered to all families.

  • Level 2 – these form most bereavement services required by families.

  • Level 3 – support offered by specialist bereavement counselling services and mental health services.

Figure 1.

Three-tiered model of bereavement services for families after the death of their child

ncyp.2020.e1336_0001.jpg

The National Children’s Hospitals Bereavement Network (2020) guidance acknowledges that every family is different and will require different levels of support at different times. In their clinical experience, the group members have found that families whose child has died unexpectedly may need additional support in the early days because of the nature of the death.

It is expected that all inpatient paediatric services will be able to provide level 1 support as a minimum to all families in the early hours and days following a child’s death. It is thought that tertiary children’s hospitals would be able to offer levels 1 and 2 support and provide assistance to families during the child death review process and any other processes that may need to take place, for example a post-mortem or coroner’s investigation. There will be some hospitals that are able to offer levels 1, 2 and 3 support or have access to level 3 services that they can refer families to.

Workforce roles

The bereavement support standards state that the workforce should include: a bereavement key worker; a bereavement medical lead; a named clinical lead; and a case manager (National Children’s Hospitals Bereavement Network 2020).

The standards emphasise that every family needs to have a key worker or point of contact in the NHS trust, so that the family know who to communicate with. This role is known as a family engagement person in Scotland. The key worker will be able to manage the processes surrounding the child’s death, coordinate support for family meetings, and ensure the family know who they can contact when necessary.

Once the family has left the hospital, the key worker can continue to offer bereavement support, make onward referrals to other services as required, provide an ongoing and open link to the hospital, and provide a supportive and information-gathering role. Appendix 5 of the statutory guidance provides further information about the key worker’s responsibilities and competencies (DHSC and DfE 2019).

Every family should also have a named bereavement medical lead, who would usually be the most appropriate consultant. The bereavement medical lead will work closely with the key worker to make sure the family are supported and offered follow-up sessions to discuss any clinical issues and ensure transition to local care, GPs or local paediatricians, as appropriate.

In some instances, for example if there is a patient safety investigation or the family make a formal complaint, a case manager should be allocated. This person should have an oversight of procedures and work closely with the key worker to coordinate the ongoing sharing of information. A member of the hospital’s management team or the patient safety team will usually take on this role, depending on the circumstances.

The National Children’s Hospitals Bereavement Network (2020) guidance emphasises that each trust or service should also have a named clinical lead, whose main role is to oversee the service and ensure it is being delivered in accordance with local policy, as well as supporting the various roles in the local service. The clinical lead should also assure equity of delivery so that all families are receiving the same core support (level 1).

Standard operating procedure

A standard operating procedure and/or guidelines for supporting families following the death of a child should be in place and families should be aware of what services are available to them. This will vary across the UK because of the varying resources, demographic and types of services that are available. It is important that there is information for families about the local sources of ongoing bereavement support.

An example of a standard operating procedure based on the bereavement support standards is available at: tinyurl.com/SL-bereavement-standards

Principles of bereavement care

The care that is provided to bereaved families at the time of a child’s death and in the following days and weeks should be considered to be just as important as the care that is provided in the child’s life; the end of life does not mean the end of care. It is essential that this care is compassionate, and that all communication with families experiencing the death of a child is empathic, honest, sensitive, non-judgemental and parent-led. Communication should be in plain, understandable language, and sensitive information should be delivered in a quiet space, with families given adequate time to process this information. Healthcare professionals should also be aware that the family may not retain the information given before they leave the hospital, so it should be reiterated in subsequent meetings by the bereavement key worker and provided in writing where necessary.

The environment in which the family can view and spend time with their child should be suitable, private and staffed appropriately in accordance with local policy. The needs of siblings should also be considered, and the team may be able to refer parents to bereavement support services for siblings and schools if required. Parents should be informed of the next steps that need to be taken and the ongoing bereavement support that is available to them which, in some cases, will involve specialist bereavement services. NHS trusts should be aware of the local and national bereavement support groups that are available.

Bereaved families may require different support depending on the nature of the death. For example, there will be significant differences between neonatal death and children who have died in traumatic or unexpected circumstances (National Children’s Hospitals Bereavement Network 2020). Therefore, care and support should be individualised and adapted to meet each family’s needs.

Conclusion

The death of a child is a devastating loss, bringing an unimaginably painful and challenging time for parents and the whole family. It can also be a confusing time for families, who may be unsure of the processes that take place after a child has died and the next steps that need to be taken. The National Children’s Hospitals Bereavement Network (2020) bereavement support standards aim to make this time less confusing for families and offer a coordinated approach to this essential aspect of care in acute NHS trusts.

The standards aim to ensure bereaved families and carers receive optimal care by providing a robust, standardised framework for bereavement care that is equitable across the NHS trust. They combine best practice from across the UK via the National Children’s Hospitals Bereavement Network and in accordance with the statutory requirements that must be followed after the death of a child. The standards also clarify how individual healthcare professionals and NHS trusts involved in child death reviews should contribute to these processes and support families at this challenging time with core support.

Further resources

NHS England (2018) When a Child Dies. A Guide for Parents and Carers

tinyurl.com/NHSE-when-a-child-dies

Childhood Bereavement Network

www.childhoodbereavementnetwork.org.uk

National Children’s Hospitals Bereavement Network standards

tinyurl.com/SL-bereavement-standards

For further information about the National Children’s Hospitals Bereavement Network, you can contact Catherine Le Roy, the chair of the group, at Catherine.leroy@nhs.net

References

  1. Craft A, Killen S (2007) Palliative Care Services for Children and Young People in England. http://nsf.no/Content/662668/PALLIATIVE%20CARE%20SERVICES%20FOR%20CHILDREN.pdf (Last accessed: 7 August 2020.)
  2. Department for Education (2015) Working Together to Safeguard Children. The Stationery Office, London.
  3. Department for Education (2017) Child Death Reviews: Year Ending 31 March 2017. http://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/627206/SFR36_2017_Text.pdf (Last accessed: 7 August 2020.)
  4. Department of Health and Social Care, Department for Education (2019) Child Death Review: Statutory and Operational Guidance (England). The Stationery Office, London.
  5. Dominica F (1997) Just My Reflection: Helping Parents to Do Things Their Way When Their Child Dies. Darton, Longman & Todd, London.
  6. Hansard (2009) Daily Hansard – Debate. https://publications.parliament.uk/pa/cm200809/cmhansrd/cm090225/debtext/90225-0002.htm (Last accessed: 7 August 2020.)
  7. National Institute for Health and Care Excellence (2019) End of Life Care for Infants, Children and Young People with Life-Limiting Conditions: Planning and Management. NICE guideline No. 61. NICE, London.
  8. National Children’s Hospitals Bereavement Network (2020) Bereavement Support Standards for Children’s Hospitals within the UK or District General Hospitals that Offer Services for Children and Families. http://www.togetherforshortlives.org.uk/resource/bereavement-support-standards-for-childrens-hospitals/ (Last accessed: 7 September 2020.)
  9. Public Health Wales (2020) Child Death Review Programme. http://phw.nhs.wales/services-and-teams/child-death-review/ (Last accessed: 19 August 2020.)
  10. Scottish Government (2014) Child Death Review Report: Scottish Government Child Death Review Working Group. http://gov.scot/publications/child-death-review-report-scottish-government-child-death-review-working-group/pages/1/ (Last accessed: 19 August 2020.)
  11. Tonkin L (2008) Coping with the Impossible, In Our Own Words: Parents Talk About Life After Their Child Has Died of Cancer. CLIC Sargent UK, London.

Share this page

Related articles

Criteria for initiating end of life treatment in cancer critical care
As survival rates for patients with cancer improve, more...

Moral choices in end of life care for children
This article aims to demonstrate the extent to which end of...

How play specialists can reduce use of anaesthesia during radiotherapy
Radiotherapy practice is complex and daunting for children....

Parents’ spiritual and religious needs in young oncology
Aim To identify the spiritual and religious needs of young...

Social aspects of bereavement
The death of a family member is one of the most stressful...