Holder Pru, Page Bethan, Hackett Julia, Mitchell Sarah, Fraser Lorna K
Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, London, UK.
Department of Health Sciences, University of York, York, UK.
Health Expect. 2024 Dec;27(6):e70120. doi: 10.1111/hex.70120.
Guidance and principles for involving the public in research or service planning exist but are not specific to the needs of parents of children with life-limiting conditions or bereaved parents.
Review the evidence on involving parents of children with life-limiting conditions and bereaved parents in research, service planning and advocacy, and use this to develop best practice guidance.
Rapid review following the Cochrane Rapid Reviews Methods Group Guidance. MEDLINE and EMBASE were searched for primary studies of any design and literature/systematic reviews, and grey literature searching was conducted. Sources reporting on involving parents of children with life-limiting conditions or bereaved parents in healthcare, research, or charity work in any setting, were included. Data were charted using the UK standards for public involvement in research (PPI). Two PPI consultation workshops were conducted with parents (n = 13) and healthcare professionals/charity representatives (n = 7).
Six sources were included. Four reported benefits of parental involvement and two reported burdens. In relation to best practice, two reported on the importance of inclusive opportunities, three on working together, four on support and learning, three on communications, one on impact, and one on governance. PPI consultation workshops highlighted new factors which were not present in the literature around communication and understanding the impact of involvement.
Organisations working with this group should consider offering inclusive approaches to improve diversity, levelling power imbalances, ensuring flexibility of approach, and appropriate communication and impact.
The study was conducted in collaboration with 13 parents of children with life-limiting conditions and bereaved parents, and seven palliative care professionals. The group were involved at key stages of the review and contributed to the development of the findings and conduct of the review.
虽然存在让公众参与研究或服务规划的指导方针和原则，但并非专门针对患有危及生命疾病儿童的父母或丧亲父母的需求。
回顾关于让患有危及生命疾病儿童的父母和丧亲父母参与研究、服务规划及宣传的证据，并以此制定最佳实践指南。
按照Cochrane快速综述方法组指南进行快速综述。检索MEDLINE和EMBASE数据库，查找任何设计的原始研究以及文献/系统综述，并进行灰色文献检索。纳入在任何环境下报告让患有危及生命疾病儿童的父母或丧亲父母参与医疗保健、研究或慈善工作的资料来源。使用英国公众参与研究（PPI）标准对数据进行制表。与父母（n = 13）和医疗保健专业人员/慈善代表（n = 7）举办了两次PPI咨询研讨会。
纳入六个资料来源。四个报告了父母参与的益处，两个报告了负担。关于最佳实践，两个报告了包容性机会的重要性，三个报告了合作，四个报告了支持与学习，三个报告了沟通，一个报告了影响，一个报告了治理。PPI咨询研讨会突出了文献中未提及的关于沟通和理解参与影响的新因素。
与该群体合作的组织应考虑采用包容性方法，以改善多样性、平衡权力失衡、确保方法的灵活性以及进行适当的沟通和影响评估。
该研究是与13位患有危及生命疾病儿童的父母和丧亲父母以及7位姑息治疗专业人员合作开展的。该群体参与了综述的关键阶段，并为研究结果的形成和综述的开展做出了贡献。
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