背景:招募晚期癌症患者对于癌症护理的护理研究至关重要。然而,护士研究人员经常面临各种社会文化挑战,特别是在中国大陆,围绕死亡的文化禁忌构成了重大障碍。在这种情况下,一个未被探索的制约因素是中国家庭成员在患者医疗决策中发挥的关键作用。这一研究差距强调需要更深入地了解中国家庭成员对晚期癌症患者参与护理研究的观点。
目的:探讨家属对晚期癌症患者招募和参与护理研究的看法和担忧。
方法:进行了定性的描述性研究。
方法:中国大陆三家肿瘤医院。
方法:18个家庭成员的目的样本,由晚期癌症患者的子女或配偶组成,被招募为参与者。
方法:在2022年9月至2023年1月之间进行了半结构化访谈,以收集数据。采用专题分析法对数据进行分析。
结果:确定了三个主题:没有事先参与,家庭成员不愿促进患者参与,以及鼓励患者未来参与的策略。家庭成员犹豫是否允许他们患有晚期癌症的亲属从事护理研究,主要是由于对痛苦患者的担忧,使用潜在的敏感语言,污名,以及参与的风险。为了解决这些问题,他们强调了在患者纳入之前获得家属批准的重要性.他们强调了家庭代表患病亲属参与研究的必要性,主张纳入广泛的患者,而不是针对特定的亚组。他们还重申了选择合适的参与时间和避免使用“癌症”等敏感术语的重要性,\'垂死\',与病人接触时的死亡。此外,他们提议由值得信赖的专业人士招募患者,缩短研究活动的持续时间,简化研究程序。
结论:这项研究提供了新的见解,以了解家庭成员在护理研究中招募和参与晚期癌症患者的观点。它强调必须解决他们的关切和建议,在以家庭为中心的护理和围绕死亡的文化禁忌的背景下,帮助护士研究人员制定对文化敏感的招募策略,并促进晚期癌症患者在护理研究中的包容性参与。
BACKGROUND: Recruiting advanced cancer patients is crucial for nursing research in cancer care. However, nurse researchers often face various socio-cultural challenges, particularly in mainland China, where cultural taboos around death pose significant obstacles. An unexplored constraint in this context is the pivotal role Chinese family members play in patients\' healthcare decision-making. This research gap underscores the need for a deeper understanding of Chinese family members\' perspectives on the engagement of advanced cancer patients in nursing research.
OBJECTIVE: To explore the perceptions and concerns of family members regarding the recruitment and participation of advanced cancer patients in nursing research.
METHODS: A qualitative descriptive study was conducted.
METHODS: Three cancer hospitals in mainland China.
METHODS: A purposive sample of 18 family members, consisting of children or spouses of advanced cancer patients, was recruited as participants.
METHODS: Semi-structured interviews were conducted to collect data between September 2022 and January 2023. The thematic analysis method was used to analyze the data.
RESULTS: Three themes were identified: The absence of prior participation, Family members\' reluctance to facilitate patient involvement, and Strategies to encourage patients\' future participation. Family members were hesitant to allow their relatives with advanced cancer to engage in nursing research, primarily due to concerns about distressing patients, the use of potential sensitive language, stigma, and the risks involved in participation. To address these concerns, they emphasized the importance of gaining family approval prior to patient enrolment. They highlighted the need of family involvement on behalf of sick relatives in research, advocating for the inclusion of a wide range of patients rather than targeting specific subgroups. They also reiterated the significance of choosing the right time for participation and avoiding using sensitive terms such as \'cancer\', \'dying\', and \'death\' when engaging with patients. Moreover, they proposed the recruitment of patients by trusted professionals, shortening the duration of research activities and simplifying research procedures.
CONCLUSIONS: This study provides fresh insights into the perspectives of family members concerning the recruitment and engagement of advanced cancer patients in nursing research. It emphasizes the importance of addressing their concerns and recommendations, aiding nurse researchers in developing culturally sensitive recruitment strategies and fostering the inclusive participation of advanced cancer patients in nursing research within the context of family-centered care and cultural taboos surrounding death.