School of Psychology, University of Southampton, Southampton, UK.
Helen & Douglas House Hospices, Oxford, UK.
Palliat Med. 2020 Jun;34(6):689-707. doi: 10.1177/0269216320907065. Epub 2020 Mar 31.
Symptom management for infants, children and young people at end of life is complex and challenging due to the range of conditions and differing care needs of individuals of different ages. A greater understanding of these challenges could inform the development of effective interventions.
To investigate the barriers and facilitators experienced by patients, carers and healthcare professionals managing symptoms in infants, children and young people at end of life.
A mixed-methods systematic review and meta-analysis was undertaken (PROSPERO ID: CRD42019124797).
The Cochrane Library, PROSPERO, CINAHL, MEDLINE, PsycINFO, Web of Science Core Collection, ProQuest Dissertations & Theses Database, Evidence Search and OpenGrey were electronically searched from the inception of each database for qualitative, quantitative or mixed-methods studies that included data from patients, carers or healthcare professionals referring to barriers or facilitators to paediatric end-of-life symptom management. Studies underwent data extraction, quality appraisal, narrative thematic synthesis and meta-analysis.
A total of 64 studies were included (32 quantitative, 18 qualitative and 14 mixed-methods) of medium-low quality. Themes were generated encompassing barriers/facilitators experienced by carers (treatment efficacy, treatment side effects, healthcare professionals' attitudes, hospice care, home care, families' symptom management strategies) and healthcare professionals (medicine access, treatment efficacy, healthcare professionals' demographics, treatment side effects, specialist support, healthcare professionals' training, health services delivery, home care). Only one study included patients' views.
There is a need for effective communication between healthcare professionals and families, more training for healthcare professionals, improved symptom management planning including anticipatory prescribing, and urgent attention paid to the patients' perspective.
由于不同年龄段的患者所患疾病和护理需求的差异，临终婴幼儿、儿童和青少年的症状管理非常复杂且具有挑战性。深入了解这些挑战可以为制定有效的干预措施提供依据。
调查管理临终婴幼儿、儿童和青少年症状的患者、照护者和医护人员所经历的障碍和促进因素。
采用混合方法系统评价和荟萃分析（PROSPERO 编号：CRD42019124797）。
从每个数据库的创建时间起，电子检索 Cochrane 图书馆、PROSPERO、CINAHL、MEDLINE、PsycINFO、Web of Science 核心合集、ProQuest 学位论文与期刊全文数据库、证据检索和 OpenGrey，以获取包括患者、照护者或医护人员的相关数据的定性、定量或混合方法研究，这些数据涉及到儿科临终症状管理的障碍或促进因素。研究进行了数据提取、质量评估、叙事主题综合和荟萃分析。
共纳入 64 项研究（32 项定量研究、18 项定性研究和 14 项混合方法研究），质量为中低水平。生成的主题包括照护者（治疗效果、治疗副作用、医护人员态度、临终关怀、家庭护理、家庭症状管理策略）和医护人员（药物获取、治疗效果、医护人员特征、治疗副作用、专科支持、医护人员培训、卫生服务提供、家庭护理）经历的障碍/促进因素。只有一项研究纳入了患者的观点。
医护人员与家庭之间需要进行有效的沟通，医护人员需要更多的培训，改进症状管理计划，包括预期性处方，以及迫切关注患者的视角。
