Developing a toolkit to support parents' involvement in child death review: an experience-based co-design study

Background Understanding why children die is important for grieving parents and for informing system improvements aimed at prevention and future care. Many countries have child death review (CDR) process, but little is known about how best to engage parents. The aim of this study was to use experience-based co-design to create a toolkit to support parental involvement in CDR.Methods A survey of English paediatric intensive care units (PICUs) and palliative care services explored practices and identified a diverse sample of sites for professional interviews. Bereaved parents were recruited through charities, hospitals and social media. Semistructured interviews were held with parents and professionals followed by co-design workshops to develop the toolkit.Results There were 29 survey responses, 13 out of 21 from PICUs and 16 out of 34 from palliative care. 21 multidisciplinary healthcare professionals were interviewed. 23 bereaved parents of children who died aged 0-18 years in 2021-2022, either during hospital admission or under palliative care were, interviewed. 10 parents and 23 professionals participated in co-design meetings. Key emotional touchpoints identified from parents' experiences were: becoming aware of CDR meetings, being asked for input, knowing the date and receiving feedback. All agreed on the importance of involving parents, with clear communication, and need for resources and training for key workers. The toolkit includes training videos, a standardised pathway including template letters, feedback form, easy-read leaflet and an animation explaining the importance of involving parents.Results There were 29 survey responses, 13 out of 21 from PICUs and 16 out of 34 from palliative care. 21 multidisciplinary healthcare professionals were interviewed. 23 bereaved parents of children who died aged 0-18 years in 2021-2022, either during hospital admission or under palliative care were, interviewed. 10 parents and 23 professionals participated in co-design meetings. Key emotional touchpoints identified from parents' experiences were: becoming aware of CDR meetings, being asked for input, knowing the date and receiving feedback. All agreed on the importance of involving parents, with clear communication, and need for resources and training for key workers. The toolkit includes training videos, a standardised pathway including template letters, feedback form, easy-read leaflet and an animation explaining the importance of involving parents.Results There were 29 survey responses, 13 out of 21 from PICUs and 16 out of 34 from palliative care. 21 multidisciplinary healthcare professionals were interviewed. 23 bereaved parents of children who died aged 0-18 years in 2021-2022, either during hospital admission or under palliative care were, interviewed. 10 parents and 23 professionals participated in co-design meetings. Key emotional touchpoints identified from parents' experiences were: becoming aware of CDR meetings, being asked for input, knowing the date and receiving feedback. All agreed on the importance of involving parents, with clear communication, and need for resources and training for key workers. The toolkit includes training videos, a standardised pathway including template letters, feedback form, easy-read leaflet and an animation explaining the importance of involving parents.Results There were 29 survey responses, 13 out of 21 from PICUs and 16 out of 34 from palliative care. 21 multidisciplinary healthcare professionals were interviewed. 23 bereaved parents of children who died aged 0-18 years in 2021-2022, either during hospital admission or under palliative care were, interviewed. 10 parents and 23 professionals participated in co-design meetings. Key emotional touchpoints identified from parents' experiences were: becoming aware of CDR meetings, being asked for input, knowing the date and receiving feedback. All agreed on the importance of involving parents, with clear communication, and need for resources and training for key workers. The toolkit includes training videos, a standardised pathway including template letters, feedback form, easy-read leaflet and an animation explaining the importance of involving parents.Results There were 29 survey responses, 13 out of 21 from PICUs and 16 out of 34 from palliative care. 21 multidisciplinary healthcare professionals were interviewed. 23 bereaved parents of children who died aged 0-18 years in 2021-2022, either during hospital admission or under palliative care were, interviewed. 10 parents and 23 professionals participated in co-design meetings. Key emotional touchpoints identified from parents' experiences were: becoming aware of CDR meetings, being asked for input, knowing the date and receiving feedback. All agreed on the importance of involving parents, with clear communication, and need for resources and training for key workers. The toolkit includes training videos, a standardised pathway including template letters, feedback form, easy-read leaflet and an animation explaining the importance of involving parents.Conclusions Co-design has successfully supported the development of a toolkit of resources in a sensitive area. It required considerable support from bereavement support organisations and researchers. Future evaluation is required.Trial registration number ISRCTN14790455.