Garstang Joanna Jane, Spry Jenna, Routledge Gayle, Pease Anna, Shaw Karen L, Kenyon Sara
School of Nursing and Midwifery, University of Birmingham College of Medical and Dental Sciences, Birmingham, UK
Children and Families Division, Birmingham Community Healthcare NHS Foundation Trust, Birmingham, UK.
Arch Dis Child. 2025 Mar 19;110(4):276-282. doi: 10.1136/archdischild-2024-327642.
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.
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.
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.
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.
ISRCTN14790455.
了解儿童死亡原因对于悲痛的父母以及为预防和未来护理而进行的系统改进都很重要。许多国家都有儿童死亡审查（CDR）程序，但对于如何最好地让父母参与其中却知之甚少。本研究的目的是利用基于经验的共同设计来创建一个工具包，以支持父母参与儿童死亡审查。
对英国儿科重症监护病房（PICUs）和姑息治疗服务进行了一项调查，探讨了相关做法，并确定了一个多样化的专业访谈地点样本。通过慈善机构、医院和社交媒体招募了失去亲人的父母。对父母和专业人员进行了半结构化访谈，随后举办了共同设计研讨会以开发工具包。
共收到29份调查问卷回复，其中21份来自儿科重症监护病房的回复中有13份，34份来自姑息治疗的回复中有16份。采访了21名多学科医疗保健专业人员。采访了23位在2021年至2022年期间孩子在0至18岁之间死亡的父母，这些孩子要么在住院期间死亡，要么在接受姑息治疗期间死亡。10名父母和23名专业人员参加了共同设计会议。从父母的经历中确定的关键情感接触点包括：了解儿童死亡审查会议、被征求意见、知道日期以及收到反馈。所有人都认同让父母参与的重要性、沟通要清晰，以及关键工作人员需要资源和培训。该工具包包括培训视频、一个标准化流程，其中包括模板信件、反馈表、易读传单以及一个解释让父母参与的重要性的动画。
共同设计成功地支持了在一个敏感领域开发资源工具包。这需要丧亲支持组织和研究人员提供大量支持。需要进行未来评估。
ISRCTN14790455。
