Understanding the factors contributing to child deaths is essential not only for supporting bereaved families but also driving systemic improvements in prevention and care. While many countries have implemented child death review (CDR) processes, evidence on effectively engaging parents in a meaningful way remains limited. Here, Dr Joanna Garstang outlines the development of a toolkit to facilitate parental involvement and the recommendations for support that all bereaved parents should receive from healthcare professionals as part of CDR.
Losing a child is devastating for parents as it disrupts the natural order of life.1 In England, approximately 3,500 children die before their 18th birthday each year, with many of these deaths expected due to chronic illnesses or genetic conditions, while others result from acute illnesses.2
Although, in these cases, the diagnosis is often established before the child dies, parents may still have questions about their child’s care. Understanding why their child died is important for grieving parents.3
Child death review (CDR) aims to understand the full reasons for each child’s death, learning from these insights to prevent future deaths alongside supporting families. CDR programmes vary internationally, with most focusing on sudden deaths, but the American Academy of Paediatrics has highlighted the benefit of reviewing deaths of children with chronic illness and disability.4
In England, CDR is mandatory for all child deaths.5 Multiagency holistic CDR meetings, which play a crucial role in the review, take place several weeks after the death and are led by the healthcare Trust responsible for the child’s care. While the meetings are attended solely by professionals, parents should be informed about CDR and allowed to provide feedback and receive updates on the outcomes.
There have been several NHS enquiries into avoidable infant and child deaths that have highlighted clinicians’ failure to listen to parents’ concerns, adequately investigate deaths and communicate effectively with families.6–9 Engaging with families is vital, as their unique knowledge of their child’s care can provide important contributions to the learning process following a death.
All bereaved families should have a key worker assigned to serve as the primary point of contact between parents and the CDR process, guiding them towards bereavement support and other essential services.
Addressing the absence of detailed CDR guidance
Before our project, there was no detailed guidance to facilitate parents’ involvement in CDR. Therefore, we aimed to collaborate with bereaved parents and CDR professionals to co-design a best-practice toolkit that supports parental engagement in CDR.10
We used an experience-based, co-design methodology.11 Our goal was to create a toolkit that addressed parents’ needs while remaining practical and considering the realities of service delivery.
We interviewed 23 bereaved parents from across England, whose children had died following a hospital admission, in a hospice or at home with palliative care between 2021 and 2022. We also interviewed 21 multidisciplinary healthcare professionals involved in CDR from three hospitals and two community palliative care services. We conducted a series of online meetings for parents and professionals to review the interview findings, establish priorities for action and develop the toolkit.
Pinpointing key emotional touchpoints
The analysis of the parents’ interviews identified four key experiences and emotional touchpoints. These were the encounters with professionals that had the most significant impact on their CDR journeys.
The first touchpoint occurred when parents became aware of CDR. It was crucial how CDR was explained to parents. Some only read about it in leaflets, while others received telephone calls from professionals they had never spoken with before.
The second touchpoint involved being asked for input. Parents found it very challenging to provide feedback or ask questions for the CDR meeting, as there was no format or structure for doing so.
The third touchpoint involved the date of the CDR meeting. Parents did not necessarily know the date on which the CDR meeting was to be held. If they did, this often led to increased anxiety leading up to it and distress if the meeting needed to be postponed. This situation was compounded by poor communication.
The fourth touchpoint was receiving feedback after the CDR meeting. Few parents received feedback, but most desired it. Effective communication and bereavement support from key workers were essential to ensuring parents could engage in CDR and to facilitate better care.
The toolkit was designed primarily for key workers, as they have the most contact with bereaved families. We also found that many key workers, while providing good bereavement support, did not fully understand their role in helping parents contribute to CDR.
What does the CDR toolkit comprise?
The toolkit includes training videos, a standardised pathway detailing suggested contacts and timings with bereaved families, template letters to support communication, a feedback form, a contact tracker form, an easy-read leaflet and an animation explaining the importance of involving parents.
Although it was developed for use with the English CDR system, the tools could also support parental involvement in CDR in other nations, as there is limited practice and guidance in this area. The feedback form could be easily utilised to enhance communication with relatives following the deaths of patients of any age.
The pathway for engaging with parents outlines minimal suggested contacts and primarily emphasises communication regarding CDR. Parents were eager that they should not leave the hospital after their child had died without information about their key worker, and that all families should be contacted by their key worker within the first two days following the death.
Some families may need much more support than that described in the pathway, but also other families may not wish to be involved in CDR at all or continue contact with key workers.
Conclusion
The CDR toolkit offers comprehensive and systematic recommendations for healthcare professionals, assuring parents that those providing support are sufficiently trained and equipped to assist them during their most challenging moments.
The toolkit still needs further evaluation but has the potential to lead to greater learning from deaths and help prevent future child deaths. It is freely available to download from the National Child Mortality Database website.
References
- Neugarten BL. Time, age, and the life cycle. Am J Psychiatry 1979;136(7):887–94.
- Healthcare Quality Improvement Partnership National Child Mortality Database. Child Death Review Data Release: year ending 31 March 2023.
- Garstang J, Griffiths F, Sidebotham P. What do bereaved parents want from professionals after the sudden death of their child: a systematic review of the literature. BMC Pediatrics 2014;14(269).
- Batra EK et al. Child Fatality Review. Pediatrics 2024;153(3).
- HM Government. Child Death Review. Statutory and Operational Guidance. London 2018.
- Kirkup B. The Life and Death of Elizabeth Dixon: A Catalyst for Change. 2020.
- Kirkup B. The Report of the Morecambe Bay Investigation. 2015.
- Parliamentary and Health Service Ombudsman. An avoidable death of a three-year-old child from sepsis 2014.
- Ockenden D. Emerging Findings and Recommendations from the Independent Review of Maternity Services at The Shrewsbury and Telford Hospital NHS Trust. HM Stationery Office; 2020.
- Garstang J et al. Developing a toolkit to support parents’ involvement in child death review: an experience-based co-design study. Arch Dis Childhood 2025;110:276–82.
- The Point of Care Foundation. Experience-based co-design. 2020 [Accessed April 2025].
Author
Joanna Garstang MBChB MRCPCH PhD
Clinical associate professor of child protection at the University of Birmingham, and consultant community paediatrician, Birmingham Community Healthcare NHS Trust, UK
