The relationship between proxy decision-making content and cues by families of patients with malignant brain tumor: A descriptive qualitative study  

恶性脑肿瘤患者家属代理决策内在机制的质性研究

作　　者：Runa Tokunaga Fumiyo Ishikawa Runa Tokunaga;Fumiyo Ishikawa

机构地区：[1]Division of Nursing,National Defense Medical College(NDMC),Saitama,Japan [2]Faculty of Human Sciences Department of Nursing,Sophia University,Tokyo,Japan

出　　处：《International Journal of Nursing Sciences》2025年第2期169-175,共7页国际护理科学(英文)

摘　　要：Objectives This study aimed to clarify the relationship between the content of proxy decision-making made by families of patients with malignant brain tumors regarding treatment policies and daily care and the cues leading to those decisions.Methods Semi-structured personal interviews were used to collect data.Seven family members of patients with malignant brain tumors were selected to participate in the study by purposive sampling method from June to August 2022 in the Patient Family Association of Japan.Responses were content analyzed to explore the relationship between the content of decisions regarding“treatment policies”and“daily care”and the cues influencing those decisions.Semi-structured interviews were analyzed by using thematic analysis.Results The contents of proxy decisions regarding“treatment policies”included implementation,interruption,and termination of initial treatments,free medical treatments,use of respirators,and end-of-life sedation and included six cues:treatment policies suggested by the primary physician,information and knowledge about the disease and treatment obtained by the family from limited resources,perceived life threat from symptom worsening,words and reactions from the patient regarding treatment,patient’s personality and way of life inferred from their treatment preferences,family’s thoughts and values hoping for better treatment for the patient.Decisions for“daily care”included meal content and methods,excretion,mobility,maintaining cleanliness,rehabilitation,continuation or resignation from work,treatment settings(outpatient or inpatient),and ways to spend time outside and included seven cues:words and thoughts from the patient about their way of life,patient’s reactions and life history inferred from their preferred way of living,things the patient can do to maintain daily life and roles,awareness of the increasing inability to do things in daily life,family’s underlying thoughts and values about how to spend the remaining time,approval from family m目的阐明恶性脑肿瘤患者家属制订“治疗政策”和“日常护理”的代理决策内容与导致这些决策线索之间的关系。方法于2022年6月至8月,采用目的抽样方法,在日本患者家庭协会中选取7例恶性脑肿瘤患者的家属参与研究。采用半结构访谈方法收集资料,并用主题分析法对访谈内容进行分析。结果关于“治疗政策”的代理决策内容包括实施、中断和终止初始治疗;免费医疗;使用呼吸器和临终镇静,并包括6条线索。“日常护理的代理决策内容:膳食内容和方法;排泄;活动能力;保持清洁;康复;继续或放弃工作;治疗环境(门诊或住院)以及户外活动的方式,并包括7条线索。结论对于“治疗政策”,医疗专业人员的指导是关键线索,而对于“日常护理”,患者日常生活中的习惯则是代理决策的线索,可能是由于家庭缺乏可用的信息以及与患者讨论的时间有限,导致恶性脑肿瘤患者家属在不确定的条件下反复使用多种线索进行代理决策。因此,支持代理决策的护士应评估患者的家庭情况,并提供线索,以促进患者家属知情和自信地做决定。

关 键 词：Brain neoplasms FAMILY Nurses CUES Proxy decision-making 

分 类 号：R473.73[医药卫生—护理学]