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

Joanna Jane Garstang; Jenna Spry; Gayle Routledge; Anna Pease; Karen L Shaw; Sara Kenyon

doi:10.1136/archdischild-2024-327642

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

Arch Dis Child. 2024 Dec 8:archdischild-2024-327642. doi: 10.1136/archdischild-2024-327642. Online ahead of print.

Authors

Joanna Jane Garstang^{1

2}, Jenna Spry^{3

4}, Gayle Routledge⁵, Anna Pease⁶, Karen L Shaw⁷, Sara Kenyon⁸

Affiliations

¹ School of Nursing and Midwifery, University of Birmingham College of Medical and Dental Sciences, Birmingham, UK j.garstang@bham.ac.uk.
² Children and Families Division, Birmingham Community Healthcare NHS Foundation Trust, Birmingham, UK.
³ University of Bristol, Bristol, UK.
⁴ University of Birmingham, Birmingham, UK.
⁵ A Child of Mine, Stafford, UK.
⁶ Population Health Sciences, University of Bristol, Bristol, UK.
⁷ Institute of Applied Health Research, University of Birmingham, Birmingham, UK.
⁸ Institute of Applied Research, University of Birmingham, Birmingham, UK.

PMID: 39647863
DOI: 10.1136/archdischild-2024-327642

Abstract

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.

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.

Keywords: Health services research; Mortality; Paediatrics; Palliative Care.