“Let them be”: Family members' perspectives on the participation of advanced cancer patients in nursing research: A qualitative descriptive study

Abstract

BackgroundRecruiting 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. ObjectiveTo explore the perceptions and concerns of family members regarding the recruitment and participation of advanced cancer patients in nursing research. DesignA qualitative descriptive study was conducted. SettingsThree cancer hospitals in mainland China. ParticipantsA purposive sample of 18 family members, consisting of children or spouses of advanced cancer patients, was recruited as participants. MethodsSemi-structured interviews were conducted to collect data between September 2022 and January 2023. The thematic analysis method was used to analyze the data. ResultsThree 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. ConclusionsThis 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.