儿科安宁疗护中共同决策的阻碍因素与应对策略的定性研究  

Barriers and coping strategies of shared decision-making in pediatric palliative care:a qualitative study

作　　者：蔡思雨 周翾[2] 成磊[3] 王瑞欣 彭晓霞[1] Cai Siyu;Zhou Xuan;Cheng Lei;Wang Ruixin;Peng Xiaoxia(Center for Clinical Epidemiology and Evidence-based Medicine,Beijing Children′s Hospital,Capital Medical University,National Center for Children′s Health,Beijing100045,China)

机构地区：[1]国家儿童医学中心,首都医科大学附属北京儿童医院临床流行病与循证医学中心,北京100045 [2]国家儿童医学中心,首都医科大学附属北京儿童医院血液病中心,北京100045 [3]复旦大学护理学院

出　　处：《护理学杂志》2024年第20期35-40,共6页Journal of Nursing Science

基　　金：国家自然科学基金青年基金项目(72204171);北京市属医院科研培育项目(PG2022023);2022年度慢性病防治与健康教育科研项目(BJMB0012022028024)。

摘　　要：目的探索儿科安宁疗护共同决策的阻碍因素及其应对策略,以推动我国儿科安宁疗护领域共同决策干预的开发和实践的完善。方法采用描述性定性研究法,对11个省15所医院的儿科安宁疗护团队27名医务人员(包括医生14名、护士7名和社工6名)进行深度访谈,以渥太华研究应用模式作为理论指导和分析框架,从实践环境、潜在采纳者和基于证据的变革3个层面分析共同决策的实践阻碍以及应对策略。结果实践环境的阻碍涉及文化、政策、知识体系和机构4个层面。潜在采纳者包括安宁疗护团队、父母和患儿。医务人员层面的阻碍为缺乏相关知识技能,应对策略为共同决策培训。父母参与共同决策的阻碍来自对患儿病情的认知、情绪问题和既往共同决策经验;应对策略:对父母进行清晰的病情告知;在父母情绪平稳时制定决策;提供有针对性的宣教。患儿层面的阻碍包括缺乏病情认知,以及决策能力受到年龄、认知水平和决策经历的限制;应对策略:支持家庭进行病情沟通;为患儿制订个性化的决策参与模式。变革层面的阻碍来自缺乏干预辅助工具和结构化的干预流程;应对策略:构建本土化辅助工具和干预流程。结论从实践环境、潜在采纳者和基于证据的变革3个层面分析的共同决策的实践阻碍以及应对策略可为我国儿科安宁疗护领域共同决策干预的开发和完善提供重要理论依据,并为医务人员的共同决策实践提供理论指导。Objective To explore the barriers and coping strategies in shared decision-making(SDM)within pediatric palliative care in China,and to advance the development and implementation of SDM interventions in pediatric palliative care field in China.Methods This research employed descriptive qualitative methods.Semi-structured,in-depth individual interviews were conducted with pediatric palliative care teams from 15 hospitals across 11 provinces,including 14 doctors,7 nurses,and 6 social workers.The Ottawa Model of Research Use was utilized as both the theoretical framework and the analytical lens.The study analyzed barriers of SDM practice and coping strategies at three levels:practice environment,potential adopters,and evidence-based innovation.Results Barriers within the practice environment encompassed cultural,policy,knowledge system,and institutional dimensions.Potential adopters consisted of palliative care teams,parents,and children.Healthcare providers faced barriers due to a lack of relevant knowledge and skills,with the coping strategy being SDM training.Parents encountered barriers in engaging in SDM due to their understanding of the child′s condition,emotional challenges,and past SDM experiences;coping strategies included transpa-rently informing parents about the severity of the child′s condition,making decisions when they are emotionally stable,and providing tailored education.Barriers at the child level included a lack of illness awareness and constraints on decision-making ability based on age,cognitive level,and decision-making experience;coping strategies involved supporting families in discussing the illness and developing personalized decision-making models for children.Barriers at the evidence-based innovation level were related to the absence of support tools and structured intervention processes;coping strategies centered on creating localized support tools and intervention processes.Conclusion This study systematically analyzed the barriers to SDM practice from such 3 levels as practice envi

关 键 词：安宁疗护 儿童 共同决策 阻碍因素 应对策略 医务人员 渥太华研究应用模式 定性研究 

分 类 号：R473.72[医药卫生—护理学]