Iten Rebecca, O'Connor Moira, Cuddeford Lisa, Gill Fenella J
School of Nursing, Faculty Health Sciences, Curtin University, Perth 6102, WA, Australia; Perth Children's Hospital, Child and Adolescent Health Service, 15 Hospital Avenue, Nedlands 6009, WA, Australia.
School of Population Health, Faculty Health Science, Curtin University, Perth 6102, WA, Australia.
J Pediatr Nurs. 2023 May-Jun;70:e22-e31. doi: 10.1016/j.pedn.2022.11.014. Epub 2022 Nov 30.
To characterise the care management trajectories of infants with life-limiting conditions, who died before 12 months, including clinical decision-making processes, identification of triggers that led to changes in care management from cure-orientated to palliative care and specialist palliative care team involvement.
Retrospective patient health record review of infants with life-limiting conditions who died before 12 months of age and received care at three hospitals in Western Australia. Two data analysis methods; directed content analysis and process mapping.
A total of 45 patient health records were reviewed. Process mapping led to typology of care management encompassing four trajectories; early de-escalation due to catastrophic event; treatment with curative intent throughout; treatment with curative intent until a significant point; and early treatment limits. Standardised advance care planning processes were used for just over 10% of infants. There was specialist palliative care team involvement for 25% of infants.
Only a proportion of infants received early integration of palliative care principles and practices. Infants and their families may benefit from earlier integration of palliative care, and standardised processes for advance care planning that are done in parallel to treatment.
There is opportunity to further enhance the delivery of palliative care to infants with life-limiting conditions and optimise the experience for families through education for health professionals, implementation of advance care planning and standardisation through policies and clinical practice guidelines.
描述12个月前死亡的患有危及生命疾病的婴儿的护理管理轨迹，包括临床决策过程，确定导致护理管理从以治愈为导向转变为姑息治疗的触发因素以及专科姑息治疗团队的参与情况。
对12个月前死亡且在西澳大利亚州三家医院接受治疗的患有危及生命疾病的婴儿的患者健康记录进行回顾性研究。采用两种数据分析方法；定向内容分析和流程映射。
共审查了45份患者健康记录。流程映射得出了护理管理的类型，包括四种轨迹；因灾难性事件早期降级；全程以治愈为目的进行治疗；以治愈为目的进行治疗直至某个重要节点；以及早期治疗限制。仅略多于10%的婴儿使用了标准化的预先护理计划流程。25%的婴儿有专科姑息治疗团队参与。
只有一部分婴儿早期整合了姑息治疗原则和实践。婴儿及其家庭可能会从姑息治疗的早期整合以及与治疗并行进行的标准化预先护理计划流程中受益。
有机会通过对卫生专业人员进行教育、实施预先护理计划以及通过政策和临床实践指南进行标准化，进一步加强对患有危及生命疾病的婴儿的姑息治疗，并优化家庭的体验。
