Informing or concealing — Dynamics of telling disease-related bad news among family members of older cancer patients: A qualitative study

doi:10.1016/j.ijnurstu.2024.104871

International Journal of Nursing Studies
国际护理研究杂志

Volume 159, November 2024, 104871
第 159 卷，2024 年 11 月，104871

https://doi.org/10.1016/j.ijnurstu.2024.104871IF: 7.5 Q1 B1
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Abstract 摘要

Background 背景介绍

With the dramatic rise in the number of older cancer patients, the question of whether or not to tell older patients of bad news becomes an urgent and common challenge. However, existing studies concentrated on the three types of disclosure decisions and their reasons, including full disclosure, partial disclosure, and avoidance of disclosure, and the evolution process and factors influencing family members' disclosure decisions are unclear.
随着老年癌症患者人数的急剧增加，是否将坏消息告诉老年患者成为一个紧迫而普遍的挑战。然而，现有的研究主要集中在完全告知、部分告知和避免告知等三种告知决策类型及其原因上，家属告知决策的演变过程和影响因素尚不明确。

Objective 目标

Explore the experience and factors of the shift between disclosure and concealment among family members of older cancer patients.
探讨老年癌症患者家属在披露与隐瞒之间转变的经历和因素。

Methods 方法

A qualitative study was employed. Semi-structured interviews were conducted with 33 family members at two general hospitals and one community hospital between December 2022 and June 2023. The interview data were analyzed using a content analysis approach.
本研究采用了定性研究的方法。2022 年 12 月至 2023 年 6 月期间，在两家综合医院和一家社区医院对 33 名家庭成员进行了半结构化访谈。访谈数据采用内容分析法进行分析。

Results 成果

The treatment plan symbolizes the “hope of survival” and it is the fundamental factor for the shift between concealment and disclosure. There are three themes of family members in making decisions during the diagnostic and therapeutic process: (a) When bad news is approaching: Keep calm in the midst of chaos, (b) when a treatment plan is determined: Hope for survival dictates disclosure decisions, and (c) when the patient's disease deteriorated: Finding hope in hopelessness.
治疗计划象征着 "生存的希望"，是在隐瞒和披露之间转变的根本因素。家庭成员在诊断和治疗过程中做出决定有三个主题：(a) 当坏消息临近时：在混乱中保持冷静；(b) 当治疗方案确定时：生存的希望决定了披露的决定，以及 (c) 当病人的病情恶化时：在绝望中寻找希望。

Conclusions 结论

Disclosure and concealment are a complex and dynamic process. The factor of the shift lies in the “hope of survival” symbolized by the treatment plan. The key to disclosure by family members is to give patients enough hope to control or cure a patient's disease, or prolong the life of patients and improve their quality of life.
公开与隐瞒是一个复杂而动态的过程。转变的因素在于治疗方案所象征的 "生存希望"。家属披露的关键在于给病人足够的希望，以控制或治愈病人的疾病，或延长病人的生命，提高他们的生活质量。

Keywords 关键词

Family members

Cancer

Truth disclosure

Dynamics

Qualitative study

家庭成员癌症真相披露动力学定量研究

What is already known 已知信息

•
Most studies have classified family members' decisions toward disclosing bad news into three categories: full disclosure, partial disclosure, and avoidance of disclosure.
大多数研究将家庭成员披露坏消息的决定分为三类：完全披露、部分披露和避免披露。
•
Most studies view family members' disclosure or concealment as absolute rather than dynamic.
大多数研究认为家庭成员的披露或隐瞒是绝对的，而不是动态的。
•
Little is known about the dynamic process and factors between disclosure and concealment that influence family members of older cancer patients.
人们对影响老年癌症患者家庭成员的披露和隐瞒之间的动态过程和因素知之甚少。

What this paper adds 本文的补充内容

•
It regards the disclosure and concealment of the family member as an entanglement and dynamic process.
它将家庭成员的披露和隐瞒视为一个纠缠不清的动态过程。
•
The treatment plan symbolizes the “hope of survival” and it is the fundamental factor for the shift between concealment and disclosure.
治疗计划象征着 "生存的希望"，它是在隐瞒和披露之间转变的根本因素。
•
It reveals three moments of family members in making decisions during the patient diagnostic and therapeutic process.
它揭示了家庭成员在病人诊断和治疗过程中做出决定的三个时刻。

1. Introduction 1.导言

Worldwide, the incidence of cancer diagnoses among the older adults will continue to rise as the aging population is experiencing rapid growth (Pilleron et al., 2021). A study predicts that older adults will account for up to 60 % of all newly diagnosed cancer cases by 2035 (Pilleron et al., 2019). In this process, the question of whether or not to inform older patients of bad news becomes an urgent and common challenge.
在全球范围内，随着老龄化人口的快速增长，老年人的癌症发病率将继续上升（Pilleron 等人，2021 年）。一项研究预测，到 2035 年，老年人将占所有新诊断癌症病例的 60%（Pilleron 等人，2019 年）。在这一过程中，是否将坏消息告知老年患者成为一个紧迫而普遍的挑战。

To date, there is no universal agreement on whether or not to disclose bad news to older cancer patients (Chen et al., 2018). In western countries, the principle of patient autonomy is highly valued (Ling et al., 2019). Moreover, in these regions, people believe that truthful disclosure not only enables patients to make more informed treatment decisions (Zolkefli, 2018), but also prompts patients to organize the affairs of their lives at an early stage, allowing them to have no regrets at the end of life (Lelorain, 2021). Therefore, in these regions, information is disclosed directly and honestly to patients (Raposo, 2019).
迄今为止，关于是否向老年癌症患者透露坏消息，还没有达成普遍共识（Chen 等人，2018 年）。在西方国家，患者自主原则受到高度重视（Ling 等人，2019 年）。此外，在这些地区，人们认为如实披露信息不仅能让患者做出更明智的治疗决定（Zolkefli，2018），还能促使患者及早安排自己的生活事务，让他们在生命终结时不留遗憾（Lelorain，2021）。因此，在这些地区，信息会直接、诚实地披露给患者（Raposo，2019）。

However, in Asian countries like China, considering death taboos and family ethics (Hahne et al., 2020; Pun, 2021), it is often up to the family to decide whether or not to disclose bad news to the patient (Zheng and Tang, 2021). More importantly, this decision can significantly affect the candid communication and trusting relationship between the family and patient, and the patient's quality of life (Tang, 2019; Wei et al., 2016). Therefore, it is essential to explore family members' disclosure decisions and their factors.
然而，在中国等亚洲国家，考虑到死亡禁忌和家庭伦理（Hahne 等，2020 年；Pun，2021 年），是否向患者透露坏消息通常由家属决定（Zheng 和 Tang，2021 年）。更重要的是，这一决定会极大地影响家属与患者之间的坦诚交流和信任关系，以及患者的生活质量（Tang，2019；Wei 等人，2016）。因此，探讨家属的披露决定及其因素是非常必要的。

International studies of the family's disclosure decisions in existing literature can be categorized into three types, and each type's reasons are discussed. The first is full disclosure. The reason is to respect the patient autonomy (Yoshida et al., 2012), to alleviate the family members' psychological burden (Tang Yong, 2019), to reduce the patient's psychological burden (Ehsani et al., 2016), and to foster an open relationship with the patient (Yoshida et al., 2012). The second type is partial disclosure. This is often done to address the patient's uncertainty regarding their disease and to encourage positive self-care behaviors (Tang Yong, 2019). In some instances, partial disclosure may be the only feasible approach when it is impossible to completely hide the illness from the patient (Tang Yong, 2019). Lastly, there is avoidance of disclosure. For patients with low psychological tolerance and poor emotional regulation, family members often choose to withhold information (Chittem et al., 2020). This is done to lessen the patient's psychological burden (van Eechoud et al., 2017) and to prevent non-compliance during treatment (Temraz et al., 2019). Additionally, the opinions of other family members and the absence of effective disclosure strategies can influence the family's choice to conceal the truth (Ayers et al., 2017; Chittem et al., 2020).
现有文献中关于家庭披露决定的国际研究可分为三种类型，并讨论了每种类型的原因。第一种是完全公开。理由是尊重患者自主权（Yoshida et al., 2012）、减轻家属心理负担（唐勇，2019）、减轻患者心理负担（Ehsani et al., 2016）、促进与患者的开放关系（Yoshida et al., 2012）。第二种类型是部分披露。这样做通常是为了解决患者对自身疾病的不确定性，并鼓励积极的自我护理行为（唐勇，2019）。在某些情况下，当无法完全向患者隐瞒病情时，部分披露可能是唯一可行的方法（唐勇，2019）。最后是回避披露。对于心理承受能力低、情绪调节能力差的患者，家庭成员通常会选择隐瞒信息（Chittem et al.）这样做是为了减轻患者的心理负担（van Eechoud et al.此外，其他家庭成员的意见和缺乏有效的披露策略也会影响家人选择隐瞒真相（Ayers等人，2017；Chittem等人，2020）。

Although published studies described the family members' behaviors and factors when deciding whether to inform an older cancer patient, they tend to view the process as a static, absolute choice. However, disclosure and concealment is a dynamic and complex process (Tang et al., 2017; Wu et al., 2021), and family members' decisions may evolve in response to a variety of factors. Understanding this evolving process and its factors is essential, which can capture the family members' psychological and decision dynamics, and help us to provide families with continuous and effective support during patient diagnosis and the treatment process. In addition, older cancer patients account for 60 % of all cancer cases in China (Chen et al., 2016), family is the basic unit in Chinese society, and family members play a crucial role in the process of diagnosis and treatment for patients (Gan et al., 2018). Therefore, in China, the dynamic process and its factors of family members' disclosure decision have special significance and value. Therefore, we explored the experience and factors of the shift between disclosure and concealment among family members in China.
尽管已发表的研究描述了家庭成员在决定是否告知老年癌症患者时的行为和因素，但这些研究倾向于将这一过程视为一个静态的、绝对的选择。然而，披露和隐瞒是一个动态而复杂的过程（Tang 等人，2017；Wu 等人，2021），家庭成员的决定可能会随着各种因素的变化而变化。了解这一演变过程及其因素至关重要，它可以捕捉家庭成员的心理和决策动态，帮助我们在患者诊断和治疗过程中为家庭提供持续有效的支持。此外，在中国，老年癌症患者占所有癌症病例的 60%（陈等，2016 年），家庭是中国社会的基本单位，家庭成员在患者的诊断和治疗过程中扮演着至关重要的角色（甘等，2018 年）。因此，在中国，家庭成员披露决策的动态过程及其因素具有特殊的意义和价值。因此，我们探讨了中国家庭成员在披露与隐瞒之间转变的经历和因素。

2. Methods 2.方法

2.1. Research design 2.1.研究设计

A descriptive qualitative approach was utilized through semi-structured interviews (Sandelowski, 2000). This method was chosen as it provided an authentic and comprehensive reflection of the experiences and factors in the family disclosure deciding process.
通过半结构式访谈，采用了描述性定性方法（Sandelowski，2000 年）。之所以选择这种方法，是因为它能真实、全面地反映家庭披露决定过程中的经历和因素。

2.2. Setting 2.2.设置

The study was conducted within the oncology wards and outpatient services of two general hospitals, as well as the home bed service of a community hospital in Guangzhou, China.
这项研究在中国广州两家综合医院的肿瘤病房和门诊服务处以及一家社区医院的家庭病床服务处进行。

2.3. Participants 2.3.与会者

Participants were selected using purposive sampling. Inclusion criteria for this study included (a) family members of cancer patients aged 60 years or older, (b) aged 18 years or older, (c) understood the patient's condition, and (d) voluntary participation in the survey and ability to communicate effectively. Participants with severe cognitive, mental, or consciousness impairment and those unable to complete the interview were excluded. All contacted participants agreed to participate in the interviews. The sample size was determined by data saturation, and collection was stopped when no new codes emerged and the data stabilizes (Hennink et al., 2017). After interviewing 33 family members of older cancer patients and analyzing the data, the research team agreed that data saturation had been reached, and data collection was stopped.
参与者是通过目的性抽样选出的。本研究的纳入标准包括：(a) 年龄在 60 岁或以上的癌症患者家属；(b) 年龄在 18 岁或以上；(c) 了解患者的病情；(d) 自愿参与调查并能有效沟通。有严重认知、精神或意识障碍以及无法完成访谈的参与者被排除在外。所有联系过的参与者都同意参加访谈。样本量由数据饱和度决定，当没有新的代码出现且数据稳定时停止收集（Hennink 等人，2017 年）。在对 33 位老年癌症患者的家庭成员进行访谈并对数据进行分析后，研究团队一致认为已达到数据饱和，因此停止了数据收集。

2.4. Data collection 2.4.数据收集

Based on the literature review, we convened research team members to discuss the core objective of exploring the dynamic processes and factors of family members' disclosure decisions, and identified key questions. Then, a semi-structured interview outline was designed to address these questions. The outline was also used to conduct an initial pilot study with three family members to further adapt and refine the interview framework. The finalized interview items were constructed around open-ended questions, which covered three main types: (a) What is the experience of family members regarding the disclosure decision, (b) when do they shift the disclosure decision, and (c) what are the key reasons for this shift.
在文献回顾的基础上，我们召集研究小组成员讨论了探索家庭成员披露决定的动态过程和因素这一核心目标，并确定了关键问题。然后，针对这些问题设计了一个半结构式访谈提纲。该大纲还用于对三名家庭成员进行初步试点研究，以进一步调整和完善访谈框架。最终确定的访谈项目围绕开放式问题展开，主要包括三类：（a）家庭成员在做出披露决定时有何经历；（b）他们何时会转变披露决定；以及（c）转变的主要原因是什么。

The first author presented ideas about the bad news shift process and factors to the research team prior to the study, and all of them showed interest. Next, the first, second, fourth and last authors designed the study. At the same time, the third and fifth authors recruited the informants. All interviews were conducted between December 2022 and June 2023 by the first and second authors, and no one else was present besides the participants and researchers during the interview. They established a close relationship with potential participants during clinical practice. Face-to-face or online semi-structured interviews were used. Family members of inpatients were generally interviewed in the afternoon in the hospital unit, family members of outpatients were interviewed online, and family members of those in the community home bed service were interviewed at home during service hours. Interviews varied in length from 30 to 94 min and were conducted in Chinese. During the interview, audio recordings and note-taking were made by the first author with the consent of the interviewed families.
在研究之前，第一作者向研究团队介绍了有关坏消息转变过程和因素的想法，所有成员都表示出了兴趣。接下来，第一、第二、第四和最后一位作者设计了研究。同时，第三作者和第五作者招募了信息提供者。所有访谈均由第一作者和第二作者在 2022 年 12 月至 2023 年 6 月期间进行，访谈期间除参与者和研究人员外没有其他人在场。他们在临床实践中与潜在参与者建立了密切关系。访谈采用面对面或在线半结构式访谈。住院病人的家属一般在下午在医院病房接受访谈，门诊病人的家属在网上接受访谈，而社区家庭病床服务的家属则在服务时间内在家中接受访谈。访谈时间从 30 分钟到 94 分钟不等，以中文进行。访谈过程中，第一作者在征得受访家属同意后进行了录音和记录。

2.5. Data analysis 2.5.数据分析

The qualitative data were analyzed using a content analysis approach (Graneheim and Lundman, 2004). The data analysis began simultaneously with data collection, and the data collection ended when data saturation was achieved. NVivo (11, QSR) was used to promote encoding the data. Initially, the first, second, and last authors carefully read each interview transcript multiple times for basic understanding, and then highlighted important statements (initial codes or semantic units contained in the interview transcripts regarding the participant's experience of unintentional discrimination). Next, they extracted similar semantic units for semantic clarity and labeled them as themes and sub-themes. Disagreements in coding and the formulation of themes were often resolved by discussion of the entire research team. The last author, with a PhD and extensive experience in qualitative research, ensured that the data were thoroughly covered and described and that the topic was accurately represented. Based on the topics, through discussions among the entire research team, we identified the relationships between them. Besides, we analyzed the dynamic process of how family members disclose bad news and the key factors that influence this process. This analysis led us to construct an explanatory model that provides insights into this dynamic process. The transcripts, codes, categories, and themes were translated into English by the first author, a female nursing graduate with research experience in qualitative research. To maintain study credibility, the interviews were transcribed verbatim within 2 weeks of completion, and transcripts were returned to participants for correction before translation.
定性数据采用内容分析法进行分析（Graneheim 和 Lundman，2004 年）。数据分析与数据收集同时开始，数据收集在达到饱和时结束。使用 NVivo (11, QSR) 对数据进行编码。首先，第一作者、第二作者和最后一位作者多次仔细阅读每份访谈记录，以获得基本的理解，然后突出重要的语句（访谈记录中包含的关于受试者无意歧视经历的初始代码或语义单位）。接下来，他们提取类似的语义单位，使语义更加清晰，并将其标记为主题和次主题。在编码和制定主题时出现的分歧往往通过整个研究小组的讨论来解决。最后一位作者拥有博士学位和丰富的定性研究经验，他确保了数据的全面覆盖和描述，以及主题的准确表达。根据主题，通过整个研究团队的讨论，我们确定了主题之间的关系。此外，我们还分析了家庭成员披露坏消息的动态过程以及影响这一过程的关键因素。通过分析，我们构建了一个解释性模型，对这一动态过程进行了深入分析。访谈记录、代码、类别和主题均由第一作者翻译成英文，她是一名护理专业的女毕业生，拥有定性研究方面的研究经验。为了保持研究的可信度，我们在访谈结束后两周内对访谈内容进行了逐字誊写，并在翻译前将誊写稿返还给参与者进行修改。

2.6. Ethical considerations
2.6.伦理方面的考虑

This study received approval from the Research Ethics Committee of the First Affiliated Hospital of Jinan University (ref: KY-2022-111). Prior to the interviews, participants were informed of the study's purpose and methods, the principle of confidentiality, and they signed informed consent. All individual and institutional data, as well as other details that could identify participants were excluded from the transcripts. Additionally, interview content was randomly numbered according to the interview order, and citations were used in the Results section.
本研究获得了暨南大学附属第一医院研究伦理委员会的批准（编号：KY-2022-111）。访谈前，参与者被告知了研究目的、方法和保密原则，并签署了知情同意书。所有个人和机构数据，以及其他可能识别参与者身份的细节均不包括在访谈记录中。此外，根据访谈顺序对访谈内容进行了随机编号，并在结果部分使用了引文。

3. Results 3.成果

A total of 33 family members of older cancer patients were included, comprising 16 males and 17 females, aged 26–79. Table 1 presents the detailed demographic characteristics of the participants.
共纳入 33 名老年癌症患者的家庭成员，其中男性 16 人，女性 17 人，年龄在 26-79 岁之间。表 1 列出了参与者的详细人口统计学特征。

Table 1. Participant characteristics (n = 33).
表 1.参与者特征（n = 33）。

Participant 参与者	Age 年龄	Gender 性别	Residence 居住区	Patient age 患者年龄	Live with patient 与病人同住	Relationship to patient 与病人的关系	Diagnosis of patient 病人诊断	Disclosure process (when patient's test results suggest a cancerous lesion–after the treatment was determined–after new treatment was determined) 披露过程（当患者的检查结果显示有癌症病变时-确定治疗方法后-确定新的治疗方法后）
F1	42	Male 男	City 城市	64	Yes 是	Daughter-in-law 儿媳	Breast cancer 乳腺癌	Conceal–conceal–disclose 隐藏-隐藏-公开
F2	42	Male 男	City 城市	60	Yes 是	Son 儿子	Breast cancer 乳腺癌	Conceal–disclose–/ 隐藏-公开-/
F3	44	Female 女性	City 城市	67	No 没有	Daughter 女儿	Breast cancer 乳腺癌	Conceal–disclose–/ 隐藏-公开-/
F4	32	Female 女性	City 城市	60	No 没有	Daughter 女儿	Colon cancer 结肠癌	Conceal–disclose–/ 隐藏-公开-/
F5	32	Male 男	City 城市	61	Yes 是	Son 儿子	Colon cancer 结肠癌	Conceal–disclose–/ 隐藏-公开-/
F6	33	Male 男	City 城市	66	Yes 是	Son 儿子	Rectal cancer 直肠癌	Disclose–disclose–/ 披露-披露-/
F7	44	Female 女性	City 城市	62	Yes 是	Daughter-in-law 儿媳	Rectal cancer 直肠癌	Disclose–disclose–/ 披露-披露-/
F8	45	Male 男	City 城市	63	Yes 是	Son 儿子	Rectal cancer 直肠癌	Conceal–conceal–disclose 隐藏-隐藏-公开
F9	26	Female 女性	City 城市	65	No 没有	Granddaughter 孙女	Gastric cancer 胃癌	Conceal–disclose–disclose 隐藏-公开-公开
F10	42	Male 男	City 城市	63	Yes 是	Son 儿子	Colon cancer 结肠癌	Conceal–disclose–/ 隐藏-公开-/
F11	45	Male 男	City 城市	67	Yes 是	Son 儿子	Colon cancer 结肠癌	Disclose–conceal–disclose 公开-隐瞒-公开
F12	42	Male 男	Rural 农村地区	64	Yes 是	Son 儿子	Colon cancer 结肠癌	Conceal–disclose–/ 隐藏-公开-/
F13	43	Male 男	Rural 农村地区	67	Yes 是	Son 儿子	Rectal cancer 直肠癌	Disclose–conceal–disclose 公开-隐瞒-公开
F14	41	Female 女性	Rural 农村地区	64	No 没有	Daughter 女儿	Rectal cancer 直肠癌	Disclose–conceal–disclose 公开-隐瞒-公开
F15	62	Female 女性	Rural 农村地区	64	Yes 是	Daughter-in-law 儿媳	Rectal cancer 直肠癌	Conceal–disclose–/ 隐藏-公开-/
F16	52	Male 男	Rural 农村地区	74	Yes 是	Son 儿子	Rectal cancer 直肠癌	Conceal–disclose–disclose 隐藏-公开-公开
F17	67	Male 男	City 城市	71	Yes 是	Husband 丈夫	Breast cancer 乳腺癌	Conceal–conceal–conceal 隐藏-隐藏-隐藏
F18	79	Female 女性	City 城市	82	Yes 是	Wife 妻子	Gastric cancer 胃癌	Disclose–disclose–conceal 公开-公开-隐瞒
F19	48	Male 男	City 城市	70	Yes 是	Son 儿子	Lung cancer 肺癌	Conceal–disclose–disclose 隐藏-公开-公开
F20	52	Male 男	City 城市	74	Yes 是	Son 儿子	Gastric cancer 胃癌	Conceal–conceal–conceal 隐藏-隐藏-隐藏
F21	48	Female 女性	City 城市	70	Yes 是	Daughter-in-law 儿媳	Gastric cancer 胃癌	Conceal–disclose–disclose 隐藏-公开-公开
F22	43	Female 女性	City 城市	68	No 没有	Daughter 女儿	Lung cancer 肺癌	Conceal–disclose–conceal 隐藏-公开-隐藏
F23	48	Male 男	City 城市	70	Yes 是	Son 儿子	Lung cancer 肺癌	Conceal–conceal–disclose 隐藏-隐藏-公开
F24	51	Male 男	City 城市	73	Yes 是	Son 儿子	Gastric cancer 胃癌	Disclose–conceal–disclose 公开-隐瞒-公开
F25	58	Female 女性	City 城市	70	No 没有	Daughter 女儿	Gastric cancer 胃癌	Disclose–disclose–conceal 公开-公开-隐瞒
F26	51	Female 女性	City 城市	71	No 没有	Daughter 女儿	Gastric cancer 胃癌	Disclose–conceal–disclose 公开-隐瞒-公开
F27	35	Female 女性	City 城市	64	Yes 是	Son 儿子	Lung cancer 肺癌	Conceal–disclose–disclose 隐藏-公开-公开
F28	35	Female 女性	City 城市	62	No 没有	Daughter 女儿	Lung cancer 肺癌	Conceal–disclose–disclose 隐藏-公开-公开
F29	54	Female 女性	City 城市	78	No 没有	Daughter 女儿	Breast cancer 乳腺癌	Conceal–conceal–conceal 隐藏-隐藏-隐藏
F30	45	Male 男	City 城市	67	Yes 是	Son 儿子	Breast cancer 乳腺癌	Disclose–conceal–conceal 公开--隐瞒--隐瞒
F31	35	Female 女性	City 城市	71	Yes 是	Daughter-in-law 儿媳	Prostate Cancer 前列腺癌	Disclose–conceal–disclose 公开-隐瞒-公开
F32	73	Female 女性	City 城市	75	Yes 是	Wife 妻子	Prostate Cancer 前列腺癌	Conceal–conceal–conceal 隐藏-隐藏-隐藏
F33	68	Female 女性	City 城市	72	Yes 是	Wife 妻子	Prostate Cancer 前列腺癌	Disclose–disclose–disclose 公开-公开-公开

Three themes and six sub-themes were derived from the content analysis. The three themes included: When bad news is approaching: Keep calm in the midst of chaos, when a treatment plan is determined: Hope for survival dictates disclosure decisions, and when the patient's disease deteriorated: Finding hope in hopelessness. These themes and sub-themes are listed in Table 2 and explained as follows.
内容分析得出了三个主题和六个次主题。三个主题包括当坏消息临近时：在混乱中保持冷静；当治疗方案确定时：生存的希望决定了披露的决定；当病人的病情恶化时：在绝望中寻找希望。表 2 列出了这些主题和次主题，并解释如下。

Table 2. Summary of the themes, sub-themes and codes.
表 2.主题、次主题和代码摘要。

Themes 主题	Sub-themes 次主题	Codes 代码
When bad news is approaching: Keep calm in the midst of chaos 当坏消息来临时：在混乱中保持冷静	Organize family meetings to discuss coping strategies 组织家庭会议，讨论应对策略	(1) A bolt from the blue (1) 晴天霹雳
		(2) Convene family meetings (2) 召开家庭会议
		(3) Seek the best possible treatment (3) 寻求最佳治疗
	Show an illusion of harmony in the presence of the patient 在病人面前表现出和谐的假象	(1) Give a response (1) 作出回应
		(2) Pretend nothing has happened in front of the patient (2) 在病人面前假装什么都没发生过
When a treatment plan is determined: Hope for survival dictates disclosure decisions 确定治疗方案时：生存希望决定披露决定	Disclosure with hope 披露希望	(1) Treatment plans: a sign of hope (1) 治疗计划：希望的象征
	Disclosure with hope 披露希望	(2) The power of hope: disclosing temporarily (2) 希望的力量：暂时披露
	Concealment without hope 没有希望的隐瞒	(1) No treatment, no hope (1) 没有治疗，就没有希望
	Concealment without hope 没有希望的隐瞒	(2) Coping with hopelessness: selective concealment (2) 应对绝望：选择性隐瞒
When the patient's disease deteriorated: Finding hope in hopelessness 当病人病情恶化时在绝望中寻找希望	Terror arrives again, seeking hope 恐怖再次降临，寻求希望	(1) Bad news arrives again, conceal or disclose? (1) 坏消息又来了，隐瞒还是公开？
		(2) Struggle to accept the patient's deteriorating condition (2) 努力接受病人不断恶化的病情
		(3) Finding new treatment plans (3) 寻找新的治疗方案
	Face the condition rationally and make the decision 理性面对病情，做出决定	(1) Decision-making based on new treatment plan (1) 根据新的治疗计划做出决策
		(2) Do everything they can for the patients (2) 竭尽全力为病人服务

The study created a trajectory model to better understand that dynamics and factors of the shift in the family disclosure (Fig. 1). Specifically, when a patient's test result reveals a cancerous lesion, it marks the beginning of the family members' disclosure decision. As the treatment plan is determined, the family members' disclosure decision follows two distinct paths. Some family members choose to inform the patient of their true condition when the patient enters the “with treatment plan” stage. However, for other patients who may transition to a “without treatment plan” stage, the family members choose to conceal the truth. As the patient's disease further deteriorates, those who originally with the treatment plan may gradually move into the “without treatment plan” stage, prompting the family members to re-evaluate and conceal the patient's new condition. For patients who originally without the treatment plan and can only experience the disease deterioration, the family members bear immense psychological burden and seek relief through new treatment plans at other hospitals. Once a new treatment plan is found, the family members will choose to inform the patients of their new condition.
该研究创建了一个轨迹模型，以更好地理解家庭披露转变的动力和因素（图 1）。具体来说，当患者的检查结果显示出癌症病灶时，就标志着家庭成员披露决定的开始。随着治疗方案的确定，家庭成员的信息披露决定遵循两条不同的路径。一些家庭成员选择在患者进入 "有治疗计划 "阶段时告知患者其真实病情。然而，对于其他可能过渡到 "无治疗计划 "阶段的患者，家庭成员则选择隐瞒真相。随着患者病情的进一步恶化，原本有治疗计划的患者可能会逐渐进入 "无治疗计划 "阶段，这就促使家庭成员重新评估和隐瞒患者的新病情。对于原本没有治疗方案而只能经历病情恶化的患者，家属会承受巨大的心理负担，并通过在其他医院寻求新的治疗方案来缓解病情。一旦找到新的治疗方案，家属会选择告知患者新的病情。

3.1. When bad news is approaching: keep calm in the midst of chaos
3.1.当坏消息来临时：在混乱中保持冷静

When the patient's test results suggest a cancerous lesion, it marks the beginning of disease-related bad news. Faced with this stark reality, family members quickly gathered to discuss strategies. They usually agree to make disclosure decisions based on the forthcoming diagnosis and the treatment strategy. However, to stabilize the patient's mood, family members have to give a response to them and even intentionally create a harmonious atmosphere.
当病人的检查结果显示有癌症病变时，这标志着与疾病相关的坏消息的开始。面对这一严峻的现实，家庭成员迅速聚集在一起商讨对策。他们通常同意根据即将到来的诊断结果和治疗策略做出披露决定。然而，为了稳定患者的情绪，家庭成员必须给予他们回应，甚至有意营造一种和谐的氛围。

3.1.1. Organize family meetings to discuss coping strategies
3.1.1.组织家庭会议，讨论应对策略

When the patient's test results revealed cancerous lesions, family members were struck unexpectedly by a bolt from the blue. Faced with this abrupt crisis, the family resolved to convene a meeting and reached a consensus that the most important thing is to arrange everything for the patient, and the disclosure decision would be contingent upon the evolving circumstances. Following the meeting, the family committed to seeking the most viable treatment options for the patient.
当患者的检查结果显示为癌症病变时，家人猝不及防，如遭晴天霹雳。面对这突如其来的危机，家人决定召开一次会议，并达成共识：最重要的是为病人安排好一切，而披露决定将取决于不断变化的情况。会后，家属承诺为病人寻求最可行的治疗方案。

3.1.1.1. A bolt from the blue
3.1.1.1.晴天霹雳

Cancer is frequently perceived as an irreversible and terminal illness. Consequently, when a patient's test results show cancerous lesions, families are often extremely shocked, frightened and overwhelmed:
癌症通常被视为不可逆转的绝症。因此，当病人的检查结果显示为癌症病变时，家属往往会感到非常震惊、恐惧和不知所措：

Cancer is indeed a terminal illness. When I first got the result showing that my dad could have cancer, I couldn't believe it. I was extremely shocked and afraid.
癌症确实是一种绝症。当我第一次得到我父亲可能患有癌症的结果时，我简直不敢相信。我非常震惊和害怕。
(F4)

3.1.1.2. Convene family meetings
3.1.1.2.召开家庭会议

Faced with this abrupt crisis, families think that the whole family needs to face it together, and they often convene a family meeting with close family members. At the meeting, members fully express their views and eventually reach a consensus. They believe that the current priority is to arrange everything they could for the patient, including raise funds and find subsequent treatment options. Additionally, considering that the diagnosis and treatment plan is not yet clear, the family feels that information is insufficient to support them in making informed decisions, and premature decision-making can lead patients and families into deeper confusion and bewilderment. Therefore, they decided that the disclosure decision would depend on the subsequent conditions:
面对突如其来的危机，家庭认为需要全家人共同面对，往往会召集关系密切的家庭成员召开家庭会议。会上，家庭成员充分发表意见，最终达成共识。他们认为，当务之急是为患者安排好一切力所能及的事情，包括筹集资金和寻找后续治疗方案。此外，考虑到诊断和治疗方案尚不明确，家属认为信息不足以支持他们做出明智的决定，过早做出决定会让患者和家属陷入更深的困惑和迷茫。因此，他们决定根据后续情况来决定是否披露信息：

It pertains to our whole family. I promptly gathered my brothers for a discussion. We all shared our thoughts and decided that securing the necessary funds and identifying a suitable treatment should be our first steps. At that juncture, the diagnosis and treatment options were still unclear. With insufficient information, making a hasty decision could lead to chaos for all of us. Thus, we resolved to make the decision once the treatment plan is determined.
这关系到我们整个家庭。我立即召集我的兄弟们进行讨论。大家畅所欲言，决定首先要筹集必要的资金，并找到合适的治疗方法。当时，诊断和治疗方案还不明确。在信息不充分的情况下，仓促做出决定可能会给我们所有人带来混乱。因此，我们决心在确定治疗方案后再做决定。
(F5)

3.1.1.3. Seek the best possible treatment
3.1.1.3.寻求最佳治疗

After the meeting, the family is committed to seeking the best possible treatment for the patient. Families believe that general hospitals are more likely to provide effective treatment because they usually have advanced facilities and technology. Therefore, they will read reviews about hospitals and doctors online, and seek recommendations from friends about general hospitals. Their goal is to identify a general hospital that can provide the patient with a more precise and effective treatment plan:
会后，家属承诺为病人寻求最好的治疗。家属认为综合医院更有可能提供有效的治疗，因为它们通常拥有先进的设施和技术。因此，他们会在网上阅读有关医院和医生的评论，并寻求朋友推荐综合医院。他们的目标是找到一家能为病人提供更精确、更有效治疗方案的综合医院：

We believe that general hospitals possess a high level of expertise, so we read numerous reviews about general hospitals online, inquiry our friends if they were acquainted with any reputable general hospitals. We wanted to find the best possible treatment for my dad.
我们相信综合医院拥有高水平的专业技术，因此我们在网上阅读了大量关于综合医院的评论，并询问朋友们是否认识任何声誉良好的综合医院。我们希望为我父亲找到最好的治疗方法。
(F5)

3.1.2. Show an illusion of harmony in the presence of the patient
3.1.2.在病人面前表现出和谐的假象

After discussing the countermeasures together, the family members had to respond to the patient because the patient had undergone numerous medical examinations. After that, they pretend nothing has happened in the patient's presence, with the intention of safeguarding the patient's mental well-being.
在共同商讨对策后，家属们不得不对病人做出回应，因为病人接受了多次医疗检查。之后，他们在病人面前假装什么也没发生，目的是保护病人的精神健康。

3.1.2.1. Give a response 3.1.2.1.给出答复

As patients undergo numerous medical testing, they are often curious about their health. To alleviate this anxiety, some family members may choose to tell white lies. Others may prefer to provide a succinct explanation of the test results, allowing the patient to have a fundamental grasp of their health condition:
患者在接受大量医学检查时，往往会对自己的健康状况感到好奇。为了缓解这种焦虑，一些家庭成员可能会选择说白色谎言。而另一些人则会选择简明扼要地解释检查结果，让病人从根本上了解自己的健康状况：

My dad went through a lot of medical tests and was really eager to know the results. To ease his worries, we told him it was just a minor intestinal issue.
我爸爸做了很多医学检查，非常想知道结果。为了打消他的顾虑，我们告诉他这只是肠道的小问题。
(F16)

My dad was really anxious and wanted to know what was going on. So we told him the results, and let him have a basic understanding of his condition.
我父亲非常焦虑，想知道到底发生了什么。于是我们把结果告诉了他，让他对自己的病情有了基本的了解。
(F13)

3.1.2.2. Pretend nothing has happened in front of the patient
3.1.2.2.在病人面前假装什么都没发生过

After providing a brief response to the patient, the family typically refrains from expressing negative emotions and discussing the issue, and shields the patient from cancer-related burden. In a word, they attempt to preserve the facade that the cancer diagnosis has not happened for the patient's psychological protection:
在对患者做出简短回应后，家属通常会避免表达负面情绪和讨论这一问题，并将患者从与癌症相关的负担中解脱出来。总之，为了保护病人的心理，他们试图维持癌症诊断没有发生的假象：

In my father's presence, I put on a brave face, kept my worries to myself, and didn't bring up the topic. I do this to protect his mental state.
当着父亲的面，我装出一副勇敢的样子，把担忧藏在心里，不提这个话题。我这样做是为了保护他的精神状态。
(F13)

3.2. When a treatment plan is determined: hope for survival dictates disclosure decisions
3.2.确定治疗方案时：生存希望决定披露决定

When the treatment plan was determined, family members would hold another family meeting to reach a new consensus: When a treatment plan presents hope for survival—meaning it is able to control or cure the patient's illness, or to extend the patient's life and enhance their quality of life—the family will choose to tell the patient the truth. Conversely, if the treatment plan holds little hope for survival, families will choose to conceal.
当治疗方案确定后，家庭成员会再次召开家庭会议，以达成新的共识：当治疗方案给患者带来生存的希望，即能够控制或治愈患者的疾病，或延长患者的生命并提高其生活质量时，患者家属会选择告诉患者真相。相反，如果治疗方案带来的生存希望渺茫，家属就会选择隐瞒。

3.2.1. Disclosure with hope
3.2.1.披露希望

3.2.1.1. Treatment plans: a sign of hope
3.2.1.1.治疗计划：希望的象征

When there is an effective treatment plan, they would hold another family meeting to reach a new consensus: the effective treatment plan represents hope that the patient's condition may be controlled or cured. Furthermore, even if this treatment plan can only extend the patient's life and ease their suffering, it symbolizes hope for the family:
当有了有效的治疗方案时，他们会再次召开家庭会议，达成新的共识：有效的治疗方案代表着病人的病情可能得到控制或治愈的希望。此外，即使这个治疗方案只能延长病人的生命，减轻他们的痛苦，它也象征着家庭的希望：

The doctor told us my dad could receive surgery. We talked it over and thought which gave us hope that his condition could be managed and even be cured.
医生告诉我们，我父亲可以接受手术治疗。我们反复讨论和思考，这给了我们希望，他的病情可以得到控制，甚至治愈。
(F21)

When the doctor said my dad could have chemotherapy and it might help him eat and sleep better, we talked it over and felt a real sense of hope.
当医生说我父亲可以接受化疗，这可能会让他吃得更好、睡得更香时，我们商量了一下，感到了真正的希望。
(F9)

3.2.1.2. The power of hope: disclosing temporarily
3.2.1.2.希望的力量：暂时披露

When families hold the belief that there is “hope for survival”, their concerns about revealing the truth diminish and they experience relief and courage. They no longer view the cancer diagnosis as entirely negative news. Instead, they see it as positive news because the patient can continue living and their suffering can be alleviated. Families believe that information can make the patient feel more at ease, which is beneficial to achieve therapeutic effects. Consequently, when there is “hope for survival”, families gain the courage to share this information, and often frame it as good news:
当家属抱有 "生存希望 "的信念时，他们对揭露真相的顾虑就会减少，并体验到解脱和勇气。他们不再将癌症诊断视为完全负面的消息。相反，他们认为这是一个积极的消息，因为病人可以继续活下去，他们的痛苦可以减轻。家属认为，信息可以让病人感到更安心，这有利于达到治疗效果。因此，当病人有 "生存的希望 "时，家属就有勇气分享这一信息，并常常将其视为好消息：

We think our dad feels a lot better when he has hope. It also gives him the confidence to fight this disease, so I dare to share the news with him.
我们认为，父亲有了希望，心情就会好很多。这也给了他与病魔抗争的信心，所以我才敢把这个消息告诉他。
(F28)

I felt hopeful about my dad condition, recognizing that instead of merely waiting for the end, he now had the potential to live on. We considered this positive news and chose to tell it to him.
我对父亲的病情充满希望，认识到他现在不再只是等待死亡，而是有可能继续活下去。我们考虑了这个积极的消息后，决定告诉他。
(F27)

3.2.2. Concealment without hope
3.2.2.没有希望的隐藏

3.2.2.1. No treatment, no hope
3.2.2.1.没有治疗，就没有希望

When there is no treatment plan, family members would hold another family meeting to reach a new consensus: no treatment plan means that the patient's disease cannot be effectively controlled or cured, and it also implies that the patient would not last long and the hope of the patient's quality of life cannot be ensured:
在没有治疗方案的情况下，家庭成员会再次召开家庭会议，达成新的共识：没有治疗方案，意味着病人的疾病无法得到有效控制或治愈，也意味着病人的生命不会长久，病人的生活质量希望无法得到保证：

The doctor informed us that my father has no treatment plan. We re-discussed and thought that means there is no prospect of my father's recovery; his life expectancy is limited, and any hope for improvement has been extinguished.
医生告诉我们，父亲没有治疗计划。我们重新讨论后认为，这意味着我父亲没有康复的希望，他的预期寿命有限，任何好转的希望都已破灭。
(F24)

3.2.2.2. Coping with hopelessness: selective concealment
3.2.2.2.应对绝望：选择性隐瞒

Family members believe that disclosing the truth without hope for survival could cause the patient struggles to face the reality and even lead to emotional collapse and despair. They even fear that the patient, in their despair and helplessness, might suffer greatly, possibly resorting to suicide. Thus, if there is no hope, the family may withhold the news:
家人认为，在没有生还希望的情况下披露真相，可能会使病人在面对现实时陷入挣扎，甚至导致情绪崩溃和绝望。他们甚至担心，病人在绝望和无助中会痛苦不堪，可能会选择自杀。因此，如果没有希望，家属可能会隐瞒消息：

If we told them without giving them any hope, it could exacerbate their psychological burden, potentially leading to an emotional breakdown and despair, isn't that akin to sentencing them to death? Therefore, in such circumstances, we choose to say nothing.
如果我们告诉了他们，却不给他们任何希望，可能会加重他们的心理负担，有可能导致他们情绪崩溃、绝望，这不是等于给他们判了死刑吗？因此，在这种情况下，我们选择什么也不说。
(F24)

3.3. When the patient's disease deteriorated: finding hope in hopelessness
3.3.当患者病情恶化时：在绝望中寻找希望

The deterioration of a patient's condition often means bad news arrives again. In such scenarios, families encounter a decision-making challenge again and are beset by uncertainty. Concurrently, they endure distress and despair and struggle to accept the patient's deteriorating condition. In this complex state, families often seek new treatment options to improve that negative situation, and shift emotions and decisions based on whether or not to find new treatment. Regardless of the outcome, families committed support and assistance to the patients.
病人病情恶化往往意味着坏消息再次降临。在这种情况下，家属会再次遇到决策难题，并被不确定性所困扰。同时，他们还要忍受痛苦和绝望，努力接受病人不断恶化的病情。在这种复杂的状态下，家属往往会寻求新的治疗方案来改善这种不利的状况，并根据是否找到新的治疗方法来改变情绪和决策。无论结果如何，家属都会为病人提供支持和帮助。

3.3.1. Terror arrives again, seeking hope
3.3.1.恐怖再次降临，寻求希望

When a patient's condition deteriorates, this often signals the bad news arrives again. Faced with this stark reality, families grapple with a decision-making dilemma and uncertainty. At the same time, they suffer great pain and despair. In this complex state, families often seek new treatment options to improve that negative situation.
当病人病情恶化时，这往往预示着坏消息再次降临。面对这一严峻的现实，家属们陷入了决策困境和不确定性之中。同时，他们也承受着巨大的痛苦和绝望。在这种复杂的状态下，家属往往会寻求新的治疗方案来改善这种不利的状况。

3.3.1.1. Bad news arrives again, conceal or disclose?
3.3.1.1.坏消息又来了，隐瞒还是公开？

The worsening of a patient's condition indicates that the bad news arrives again. In these moments, families are faced with the difficult decision once more: whether to inform or conceal the new condition. On the one hand, they felt that they should tell the truth so that they could talk openly and leave no regrets. On the other hand, the new treatment plan had not yet been clarified, and the patient cannot be misled by the lack of information. That result in families' struggle between disclosure and concealment:
病人病情恶化意味着坏消息再次降临。在这种时刻，家属再次面临艰难的抉择：是告知还是隐瞒新的病情。一方面，他们觉得应该如实告知，这样才能开诚布公，不留遗憾。另一方面，新的治疗方案尚未明确，病人不能被缺乏信息所误导。这就造成了家属在公开与隐瞒之间的挣扎：

My husband has started vomiting. When we sought medical advice, the tests revealed a dramatic spike in various health indicators. In this situation, I felt that we should tell him so that we could talk openly and leave no regrets. But, the new treatment plan remains uncertain, and he cannot be misled by the lack of information.
我丈夫开始呕吐。当我们求医时，检查结果显示各种健康指标急剧上升。在这种情况下，我觉得我们应该告诉他，这样我们就可以敞开心扉，不留遗憾。但是，新的治疗方案仍不确定，他不能被缺乏信息所误导。
(F18)

3.3.1.2. Struggle to accept the patient's deteriorating condition
3.3.1.2.努力接受病人不断恶化的病情

Concurrently, family members are consumed by torment and unease as they watch the patient's condition deteriorate and endure their suffering. Additionally, they think patients may be approaching the end. However, within family hearts lie a multitude of unspoken emotions and unfulfilled desires. Therefore, at this time, the family is hard to accept this fact and eager to do something to improve the situation:

My husband was in unbearable agony, and it broke my heart. I fear that he might not overcome this ordeal. We had so many plans and dreams that I longed to fulfill together. It's been utterly overwhelming, to the point where I feel I can't bear it.
我丈夫的痛苦难以忍受，这让我心碎。我担心他无法战胜这场磨难。我们有那么多的计划和梦想，我渴望一起去实现。这让我不堪重负，甚至觉得自己无法承受。
(F18)

3.3.1.3. Finding new treatment plans
3.3.1.3.寻找新的治疗方案

In this complex state, the family often searches for new treatment plans, which symbolizes renewed hope for survival. They think that the new treatment plan can ease the patient's physical distress. Besides, it can also empower the family with the knowledge to make informed decisions and mitigate their emotional burden:
在这种复杂的状态下，家属往往会寻找新的治疗方案，这象征着重新燃起生存的希望。他们认为新的治疗方案可以减轻病人的身体痛苦。此外，新的治疗方案还能让家属获得做出明智决定的知识，减轻他们的精神负担：

We are searching for new treatments with the hope that it will provide some relief for my husband, and alleviate our emotional burden and empowers us with the knowledge to make informed decisions.
我们正在寻找新的治疗方法，希望它能缓解我丈夫的病情，减轻我们的精神负担，并让我们掌握相关知识，做出明智的决定。
(F18)

3.3.2. Face the condition rationally and make the decision
3.3.2.理性面对条件，做出决定

When the new treatment option is determined, families are often divorced from their complex emotions and recalibrate their decision-making. Besides, they are dedicated to offering support to the patient, demonstrating their deep sense of duty and love.
当新的治疗方案确定后，家属往往会从复杂的情绪中抽离出来，重新调整决策。此外，他们还致力于为病人提供支持，体现出深深的责任感和爱。

3.3.2.1. Decision-making based on a new treatment plan
3.3.2.1.基于新治疗方案的决策

After relentless search, some families may discover new treatment options, bringing them joy and relief. Upon confirming that the patient has renewed hope for survival, they would decide to share this new information with the patient. Conversely, for those who have not found an effective treatment plan, their hearts are clenched by despair, and they may conceal this new condition:
经过不懈的探索，一些家庭可能会发现新的治疗方案，这给他们带来了喜悦和宽慰。在确认病人重燃生存希望后，他们会决定与病人分享这一新信息。相反，对于那些没有找到有效治疗方案的人来说，他们的心被绝望紧紧揪住，他们可能会隐瞒这一新情况：

Finally, we discovered a hospital that could perform surgery for my husband. With this new hope, we share that positive news with him.
最后，我们找到了一家可以为我丈夫实施手术的医院。带着新的希望，我们与他分享了这个好消息。
(F18)

We visited numerous hospitals, but unfortunately, they all concurred that there was no treatment. In the end, to comfort my mother, we told her that this is a very common problem among older adults.
我们去了很多家医院，但遗憾的是，他们都认为无法治疗。最后，为了安慰母亲，我们告诉她这是老年人的常见病。
(F31)

3.3.2.2. Do everything they can for the patients
3.3.2.2.竭尽全力为患者服务

Regardless of the success in finding a new treatment option, family members are dedicated to doing everything for the patient. For family members who found a new treatment, they will stay by the patient's side, attending to their daily needs. For those who have not found effective treatments, they often seek traditional Chinese medicine or folk remedies, hoping to provide some comforts and relief to the patient:
无论能否成功找到新的治疗方案，家人都会尽心尽力地为病人做好每一件事。对于找到新疗法的家属，他们会守在病人身边，照顾他们的日常起居。对于那些没有找到有效治疗方法的患者，他们往往会寻求传统中医或民间偏方，希望能给患者带来一些安慰和缓解：

My husband now has the opportunity for surgery, my son takes turns to visit the hospital to be with him, offering his company and conversation.
我丈夫现在有机会做手术，我儿子轮流去医院陪他，陪他聊天。
(F18)

Many hospitals state that there is no treatment plan for my wife. So I've sought out traditional Chinese medicine and explored remedies from our village to provide her with comfort.
很多医院都说没有适合我妻子的治疗方案。因此，我寻找传统中医，并从我们村子里探索治疗方法，希望能给她带来安慰。
(F32)

4. Discussion 4.讨论

The study explored the experience and factors of the shift between disclosure and concealment among family members of older cancer patients, and created a trajectory model about it. We found that concealment and disclosure are not static, but rather a complex and dynamic process. The factor of this shift lies in “hope for survival”. Furthermore, in this complex and dynamic process, the state and behavior of family members in making disclosure decisions shift at three specific moments: when a patient's test results suggest a cancerous lesion, when the treatment plan is determined, and when the patient's disease deteriorated, the new treatment plan is determined.
该研究探讨了老年癌症患者家属在披露与隐瞒之间转变的经历和因素，并建立了一个相关的轨迹模型。我们发现，隐瞒和披露并非一成不变，而是一个复杂的动态过程。这种转变的因素在于 "生存的希望"。此外，在这一复杂而动态的过程中，家属在做出披露决定时的状态和行为会在三个特定时刻发生转变：当患者的检查结果显示有癌症病灶时、当治疗方案确定时、当患者病情恶化时，新的治疗方案也随之确定。

The family's disclosure decision and psychological state shift at these three specific moments. When faced with the patient's cancerous lesions, family members are hit with shock and fear, and they may give the patient a response. But, they often have not reached a conclusive decision. When the treatment plan was determined and bring patients “hope for survival”, they may exhibit optimism and courage and will disclose the truth. Conversely, if there is no hope, they will become worried and anxious and choose to conceal. When the patient's disease deteriorated, the family may become hopeless and helpless. If a new treatment option arises, they can become positive again and choose to inform the patient's new condition, but the absence of it may lead to profound despair and concealment of the patient's new condition. Previous studies on the family's disclosure decision always view that as a static, absolute choice (Ayers et al., 2017; Chittem et al., 2020). Although few studies have recognized the evolving nature of family informing decisions, they have not yet pinpointed the specific timing and factors involved (Tang et al., 2017). Moreover, existing research has concentrated on the factors that influence family members' disclosure decisions, such as the patient's personal circumstances and the disease's characteristics (Zheng Lanping et al., 2021). However, it lacks differentiation between the dominant factors at various stages, which complicates the timely and targeted support for families' decision. This study has delineated the timing and identified the dominant factors at those three moments. That clarification can enhance the support tailored to the family members' decision-making process. Besides, previous studies on the family's psychological state have found that family members are as affected as patients when bad news is disclosed (Postavaru et al., 2023) and face challenges in dealing with negative emotions (Mosher et al., 2016). They suggest that healthcare professionals offer emotional support during this critical period (Matthews et al., 2019; Postavaru et al., 2023). However, these studies do not address the full spectrum of family members' state. The recommendations also do not consider the emotional dynamics at different stages, which complicates the consistent and targeted support for families' state. This study digs deeper into the entire process of psychological changes in family members and the family members' emotional nuances at three moments, facilitating a more accurate and sustained support to the family. Consequently, medical professionals should identify the predominant factors and state at each juncture, and provide targeted support to the family members. Specifically, when test results indicate the cancerous lesions, medical staff should help the family buffer immediate shock, and realize the family's disclosure decision may hinge on the patient's curiosity about their health status. When treatment options were determined but the patient's condition worsens, medical staff should realize that determining new treatments may stabilize the family's emotions, reducing the need for constant worry. They also need to realize the family's disclosure decision is influenced by the “hope for survival”. Conversely, if without an ineffective treatment plan, medical staff should intensify emotional support and assist the family in exploring new treatment options.
在这三个特定时刻，家属的信息披露决定和心理状态都会发生变化。面对患者的癌症病变，家属会感到震惊和恐惧，他们可能会给患者一个答复。但是，他们往往还没有做出结论性的决定。当治疗方案确定并给患者带来 "生存的希望 "时，他们可能会表现出乐观和勇气，并会透露真相。相反，如果没有希望，他们就会变得忧虑和焦虑，选择隐瞒。当病人病情恶化时，家属可能会变得绝望和无助。如果出现了新的治疗方案，他们可以重新变得积极，选择告知病人的新病情，但如果没有新的治疗方案，他们可能会陷入深深的绝望，隐瞒病人的新病情。以往关于家属披露决定的研究总是将其视为一种静态的、绝对的选择（Ayers 等人，2017 年；Chittem 等人，2020 年）。虽然有少数研究认识到了家庭告知决定的不断变化性，但尚未明确指出其中涉及的具体时间和因素（Tang 等人，2017 年）。此外，现有研究主要集中于影响家庭成员披露决定的因素，如患者的个人情况和疾病特征（郑兰萍等，2021）。然而，这些研究缺乏对不同阶段主导因素的区分，这使得为家属的决定提供及时和有针对性的支持变得更加复杂。本研究对这三个时刻的时机进行了划分，并确定了主导因素。这可以加强针对家庭成员决策过程的支持。此外，以往有关家属心理状态的研究发现，当坏消息被披露时，家属与患者一样会受到影响（Postavaru 等人，2023 年），并且在处理负面情绪方面面临挑战（Mosher 等人，2016 年）。他们建议医护人员在这一关键时期提供情感支持（Matthews 等人，2019 年；Postavaru 等人，2023 年）。然而，这些研究并未涉及家庭成员的全部状态。这些建议也没有考虑到不同阶段的情感动态，这就使得为家庭成员的状态提供一致且有针对性的支持变得更加复杂。本研究深入挖掘了家庭成员心理变化的全过程以及家庭成员在三个时刻的细微情绪变化，有助于为家庭提供更准确、更持续的支持。因此，医务人员应明确每个时刻的主导因素和状态，为家属提供有针对性的支持。具体来说，当检查结果显示为癌症病变时，医护人员应帮助家属缓冲即时的震惊，并意识到家属的公开决定可能取决于患者对自身健康状况的好奇心。当确定了治疗方案但患者病情恶化时，医务人员应认识到确定新的治疗方法可能会稳定家属的情绪，减少持续担忧的需要。他们还需要认识到，家属披露信息的决定受到 "生存希望 "的影响。相反，如果治疗方案无效，医务人员应加强情感支持，协助家属探索新的治疗方案。

Additionally, it reveals the factor of the shift in the family's disclosure decision and their psychological state, namely the “hope for survival”. When hope is present, it brings relief and courage within families. They believe that disclosure with hope is not just psychologically comforting, but also therapeutically motivating for patients. Previous studies have underscored the significance of hope in family disclosure decisions (van Eechoud et al., 2017). Some studies reveal that the family regards hope as a fundamental element in making disclosure decisions (Matthews et al., 2019), and a disclosure with hope aligns with traditional Chinese values and perspectives on mortality (Xiao et al., 2014). Moreover, medical staff have also recognized the importance of hope in the delivery of bad news (Platas et al., 2021). However, maintaining hope while remaining honest becomes a major challenge (Platas et al., 2021). Some healthcare professionals may even give patients or families false hope out of fear of blame (Tanco et al., 2015), leading patients or families to choose aggressive treatment and delay the key financial or social decision (Enzinger et al., 2015). To address this challenge, we need to understand the meaning of hope. This study further explores the specific role of hope in family informing decisions. Hope can empower families with courage, easing their disclosure concerns. Families are convinced that disclosure with hope can dispel patient despair, instilling them with courage and confidence, and enhancing the quality of life.
此外，它还揭示了家庭披露决定和心理状态转变的因素，即 "生存的希望"。当希望出现时，会给家庭带来宽慰和勇气。他们认为，带着希望进行信息披露不仅能给患者带来心理安慰，还能激发他们的治疗动力。以往的研究强调了希望在家庭披露决定中的重要性（van Eechoud 等人，2017 年）。一些研究显示，家属将希望视为做出披露决定的基本要素（Matthews 等人，2019 年），而带有希望的披露符合中国传统价值观和对死亡的看法（Xiao 等人，2014 年）。此外，医务人员也认识到希望在传递坏消息时的重要性（Platas 等人，2021 年）。然而，如何在保持希望的同时保持诚实成为一大挑战（Platas 等人，2021 年）。一些医护人员甚至会因为害怕受到责备而给患者或家属虚假的希望（Tanco 等人，2015 年），导致患者或家属选择积极治疗，延误关键的经济或社会决策（Enzinger 等人，2015 年）。为了应对这一挑战，我们需要了解希望的意义。本研究进一步探讨了希望在家庭知情决策中的具体作用。希望可以增强家庭的勇气，缓解他们对信息披露的担忧。家属们相信，带着希望进行信息披露可以消除患者的绝望情绪，为他们注入勇气和信心，提高生活质量。

5. Limitations 5.局限性

The study has several limitations. First, we visited fewer families in rural areas. To achieve meaning saturation which is when no further dimensions, nuances, or insights of issues can be found, larger samples are needed to fully account for complex phenomena. Additionally, to avoid potential emotional and actual burdens on participants, this study conducted only one interview. In the future, it is necessary to increase the number of interviews and retain participants to capture longer-term decision trajectories.
这项研究有几个局限性。首先，我们走访的农村家庭较少。要达到意义饱和，即无法发现问题的更多层面、细微差别或见解，就需要更大的样本来充分说明复杂的现象。此外，为了避免对参与者造成潜在的情感和实际负担，本研究只进行了一次访谈。今后，有必要增加访谈次数并留住参与者，以捕捉更长期的决策轨迹。

6. Conclusion 6.结论

This study found family members' state and behavior in making disclosure decisions that shift at three specific moments: when a patient's test results suggest a cancerous lesion, when the treatment plan is determined, and when the patient's disease deteriorated, the new treatment plan is determined. It also revealed the key factor of those shifts lies in the “hope for survival”. The findings promote professionals' understanding of the family members' dynamic disclosure process, and provide a reference to better guide clinical practice.
这项研究发现，在病人的检查结果显示癌症病灶、确定治疗方案以及病人病情恶化、确定新的治疗方案这三个特定时刻，家庭成员在做出信息披露决定时的状态和行为会发生转变。研究还发现，这些转变的关键因素在于 "生存的希望"。研究结果促进了专业人员对家庭成员动态披露过程的理解，为更好地指导临床实践提供了参考。

Funding 资金筹措

This study was financially supported by the National Social Science Fund of China (grant number 21CSH026).
本研究得到了国家社会科学基金的资助（基金号：21CSH026）。

CRediT authorship contribution statement
CRediT 作者贡献声明

Xiaoyu He: Writing – review & editing, Writing – original draft, Visualization, Software, Project administration, Methodology, Investigation, Formal analysis, Data curation, Conceptualization. Jiagui Liang: Writing – review & editing, Visualization, Validation, Supervision, Project administration, Methodology, Formal analysis, Data curation, Conceptualization. Hanchang Liang: Writing – review & editing, Visualization, Resources, Investigation. Peng Yue: Conceptualization, Data curation, Formal analysis, Methodology, Project administration, Supervision, Validation, Writing – review & editing. Dumin Zeng: Formal analysis, Investigation, Resources, Writing – review & editing. Ni Gong: Writing – review & editing, Validation, Supervision, Resources, Project administration, Methodology, Funding acquisition, Formal analysis, Data curation, Conceptualization.
何晓宇写作--审阅和编辑、写作--原稿、可视化、软件、项目管理、方法论、调查、形式分析、数据整理、概念化。梁家贵：写作-审阅和编辑、可视化、验证、监督、项目管理、方法论、形式分析、数据整理、概念化。梁汉昌：写作--审阅和编辑、可视化、资源、调查。彭越概念化、数据整理、形式分析、方法论、项目管理、监督、验证、写作 - 审核与编辑。曾德敏正式分析、调查、资源、写作 - 审核与编辑。龚妮写作 - 审核与编辑、验证、监督、资源、项目管理、方法论、资金获取、形式分析、数据整理、概念化。

Declaration of Competing Interest
竞争利益声明

There are no potential conflicts of interest regarding the research, authorship, and/or publication of this article.
本文的研究、作者和/或发表不存在潜在利益冲突。

Acknowledgments 致谢

We would like to thank the families of older cancer patients for their time, interest, and thoughtful insights into this study. We would like to thank the healthcare providers at the three hospitals.
我们要感谢老年癌症患者的家属为本研究付出的时间、兴趣和深思熟虑的见解。我们还要感谢三家医院的医护人员。

Data availability 数据可用性

Data cannot be shared because participants are informed and agree to use their non-identifiable content only for publications.
数据不能共享，因为参与者已被告知并同意仅将其不可识别的内容用于出版物。

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Cited by (3)

Latent profile analysis of spousal information concealment in patients with cancer: A cross-sectional study
癌症患者配偶信息隐瞒的潜在特征分析：横断面研究
2025, Asia-Pacific Journal of Oncology Nursing
2025年，《亚太肿瘤护理杂志》
This study aimed to investigate spousal information concealment in patients with cancer and analyse its influencing factors.
Between April and July 2024, 371 spouses of patients with cancer were surveyed using the Demographic and Clinical Characteristics Questionnaire, the Information Concealment Scale for Caregivers, Fear of Progression Questionnaires for Partners, and the Medical Coping Modes Questionnaire. Influencing factors were analysed using latent profile analysis.
Based on the degree of information concealment, spouses of patients with cancer were categorised into three subgroups: the low concealment - low control (19.14%), medium concealment (50.40%), and high concealment - high dissimulation group (30.46%). Multivariate logistic regression analysis revealed that sex, age, educational level, disease stage, fear of disease progression, and medical coping modes were the influencing factors of the information concealment subgroups (P＜0.05).
Information concealment among spouses of patients with cancer has individualized characteristics. Analysing the demographics, disease features, and psychological conditions of spouses in different information concealment subgroups can help medical staff formulate more targeted and personalized interventions and reduce the degree of information concealment among patients' spouses.
The congruence and interrelationships of family resilience in couples coping with colorectal cancer: A cross-sectional study from a dyadic perspective
应对结直肠癌夫妇的家庭复原力的一致性和相互关系：从夫妇角度进行的横断面研究
2025, European Journal of Oncology Nursing
2025年，《欧洲肿瘤护理学杂志》
To assess the congruence and interdependent impacts of family resilience in colorectal cancer couples using the Walsh Family Resilience Model, focusing on coping domains of the shared beliefs system, organizational patterns, and communication/problem-solving.
220 colorectal cancer couples were recruited from two hospitals in China, assessing family resilience, hope, family sense of coherence, spiritual well-being, social support, and couple communication quality. Congruence was assessed using intraclass correlation coefficients and paired t-tests. Pearson correlations, multiple stepwise linear regression, and structural equation modeling examined the effects of coping domains on family resilience. Actor-Partner Independence Model was used to further explore actor and partner effects of these coping domains on family resilience in colorectal cancer couples.
Moderate congruence in family resilience was observed, with spousal caregivers reporting higher family resilience. Key coping domains, including shared beliefs system (hope, family sense of coherence, spiritual well-being), organizational patterns (social support), and mutual communication/problem-solving, were significant predictors of family resilience. Importantly, both patients' and spousal caregivers’ coping domains exhibited notable actor and partner effects on family resilience of their own family resilience and partners.
This study highlights the interdependent influences on family resilience in colorectal cancer couples, supporting family-centered interventions to strengthen positive coping mechanisms.
Ethical Dilemmas Among Oncology Nurses in China: Cross-Sectional Study
中国肿瘤科护士的伦理困境：横断面研究
2024, Asian Pacific Island Nursing Journal
2024 年，《亚太岛国护理杂志》
Effective communication about cancer prognosis is imperative for enhancing the quality of end-of-life care and improving patient well-being. This practice is sensitive and is heavily influenced by cultural values, beliefs, and norms, which can lead to ethical dilemmas. Despite their significance, ethical challenges in nursing related to prognosis communication are understudied in China.
This study aimed to examine the ethical dilemmas relating to cancer prognosis communication and their associated factors.
A cross-sectional design was employed to survey 373 oncology nurses in mainland China. Data were collected on ethical dilemmas, attitudes, barriers, experiences with prognosis communication, sociodemographics, and practice-related information. Ordinary least squares regressions were used to identify factors contributing to ethical dilemmas.
Participants reported a moderate level of ethical dilemmas in prognostic communication (mean 13.5, SD 3.42; range 5‐20). Significant predictors of these dilemmas included perceived barriers (P<.001), experiences with prognosis communication (P<.001), and years of work experience (P=.002). Nurses who perceived greater communication barriers, had more negative experiences with prognosis communication, and had less work experience were more likely to encounter ethical dilemmas in prognosis-related communication.
Chinese oncology nurses frequently encounter ethical dilemmas, as well as barriers, in communicating cancer prognoses. This study’s findings emphasize the importance of culturally tailored communication training. Collaborative interprofessional training, particularly through physician-nurse partnerships, can perhaps enhance the proficiency of cancer prognosis-related communication.

¹: These authors have contributed equally to this study.
这些作者对本研究做出了同等贡献。

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Y. Zolkefli
The ethics of truth-telling in health-care settings
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Informing or concealing — Dynamics of telling disease-related bad news among family members of older cancer patients: A qualitative study告知或隐瞒--老年癌症患者家属告知疾病相关坏消息的动力：定性研究

Abstract 摘要

Background 背景介绍

Objective 目标

Methods 方法

Results 成果

Conclusions 结论

Keywords 关键词

What is already known 已知信息

What this paper adds 本文的补充内容

1. Introduction 1.导言

2. Methods 2.方法

2.1. Research design 2.1.研究设计

2.2. Setting 2.2.设置

2.3. Participants 2.3.与会者

2.4. Data collection 2.4.数据收集

2.5. Data analysis 2.5.数据分析

2.6. Ethical considerations2.6.伦理方面的考虑

3. Results 3.成果

3.1. When bad news is approaching: keep calm in the midst of chaos3.1.当坏消息来临时：在混乱中保持冷静

3.1.1. Organize family meetings to discuss coping strategies3.1.1.组织家庭会议，讨论应对策略

3.1.1.1. A bolt from the blue3.1.1.1.晴天霹雳

3.1.1.2. Convene family meetings3.1.1.2.召开家庭会议

3.1.1.3. Seek the best possible treatment3.1.1.3.寻求最佳治疗

3.1.2. Show an illusion of harmony in the presence of the patient3.1.2.在病人面前表现出和谐的假象

3.1.2.1. Give a response 3.1.2.1.给出答复

3.1.2.2. Pretend nothing has happened in front of the patient3.1.2.2.在病人面前假装什么都没发生过

3.2. When a treatment plan is determined: hope for survival dictates disclosure decisions3.2.确定治疗方案时：生存希望决定披露决定

3.2.1. Disclosure with hope3.2.1.披露希望

3.2.1.1. Treatment plans: a sign of hope3.2.1.1.治疗计划：希望的象征

3.2.1.2. The power of hope: disclosing temporarily3.2.1.2.希望的力量：暂时披露

3.2.2. Concealment without hope3.2.2.没有希望的隐藏

3.2.2.1. No treatment, no hope3.2.2.1.没有治疗，就没有希望

3.2.2.2. Coping with hopelessness: selective concealment3.2.2.2.应对绝望：选择性隐瞒

3.3. When the patient's disease deteriorated: finding hope in hopelessness3.3.当患者病情恶化时：在绝望中寻找希望

3.3.1. Terror arrives again, seeking hope3.3.1.恐怖再次降临，寻求希望

3.3.1.1. Bad news arrives again, conceal or disclose?3.3.1.1.坏消息又来了，隐瞒还是公开？

3.3.1.2. Struggle to accept the patient's deteriorating condition3.3.1.2.努力接受病人不断恶化的病情

3.3.1.3. Finding new treatment plans3.3.1.3.寻找新的治疗方案

3.3.2. Face the condition rationally and make the decision3.3.2.理性面对条件，做出决定

3.3.2.1. Decision-making based on a new treatment plan3.3.2.1.基于新治疗方案的决策

3.3.2.2. Do everything they can for the patients3.3.2.2.竭尽全力为患者服务