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

Area of Science:

• Pediatric Healthcare
• Bereavement Studies
• Health Services Research

Background:

• Understanding child mortality is vital for parental support and healthcare system enhancement.
• Parental involvement in child death reviews (CDRs) is currently underexplored.
• Existing CDR processes lack standardized methods for engaging bereaved parents.

Purpose of the Study:

• To develop a toolkit supporting parental involvement in the child death review (CDR) process.
• To address the need for improved communication and resource provision for parents during CDRs.
• To enhance the experience of bereaved parents within the CDR framework.

Main Methods:

• A survey of pediatric intensive care units (PICUs) and palliative care services identified study sites.
• Semi-structured interviews were conducted with healthcare professionals and bereaved parents.
• Experience-based co-design workshops were utilized to develop the toolkit.

Main Results:

• Key parental concerns included awareness of CDR meetings, input opportunities, scheduling, and feedback.
• Co-design workshops involved 10 parents and 23 professionals.
• The developed toolkit includes training videos, standardized pathways, template letters, feedback forms, an easy-read leaflet, and an animation.

Conclusions:

• Experience-based co-design successfully facilitated the creation of a sensitive toolkit.
• Significant support from bereavement organizations and researchers was essential.
• Further evaluation of the toolkit's effectiveness is recommended.