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。
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。
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 |
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 |
(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 | |
(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 |
Fig. 1. Dynamics and factors of disease-related bad news disclosure among family members.
图 1.家庭成员间披露与疾病相关的坏消息的动态和因素。
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.(F4)
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。
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.(F5)
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。
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.(F5)
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。
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.(F16)
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。
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.(F13)
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。
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.(F13)
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。
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.(F21)
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。
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.(F9)
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。
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.(F28)
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。
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.(F27)
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。
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.(F24)
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。
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.(F24)
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。
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.(F18)
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。
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.(F18)
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。
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.(F18)
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。
Finally, we discovered a hospital that could perform surgery for my husband. With this new hope, we share that positive news with him.(F18)
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。
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.(F31)
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。
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.(F18)
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。
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.(F32)
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。