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Language
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Use less directive language
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There doesn’t necessarily need to be a concrete definition of meaning. What matters the most for the patient is not the definition we give them, but what they value as the meaning of life themselves. [004]
Each person may have a different interpretation of the meaning of life. I feel like this should be an open discussion, conveying the idea of acceptance and inclusion to the patient. [006]
In terms of the general structure of the manual, you often say, “this is how we defined it, what are your thoughts?” It feels like the manual is telling me that I need to know your definition, even if my definition and your definition might not be the same … I think there are approaches that might work better. For example, you can say, “this is your thought and this is ours, may we reach a compromise?” … I am not sure about how to ask it in a better way, but right now the manual makes me feel like the client has to agree with what the counselor says. [008]
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Replace “teach-back” method with “think aloud” approach for discussions of key MCP terminology
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Use plain, easy-to-understand language
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It’s kind of not so user-friendly for the professionals … Because some of the wording, even though understandable, when it is used [by] the professionals, it will become very, what do you say, very formal, yeah. It is very formal. [001]
If you come up to them and start saying words that sound fancy, first, it's possible that the patients don’t really understand what those words mean. Second, they might feel a little offended - “why are you asking me questions using words that I don’t understand?” ... So, what I am saying is, try to use relatively approachable language or everyday expressions [002]
Being easy to understand is a must. [006]
If you are talking to clients, you need to be more colloquial. This will help you get closer to them, especially because they usually have high levels of anxiety and fear. [007]
If [patients] have a lower literacy level and you don’t ask the question in a way that’s easy to understand, you won’t be able to get much out of them. [012]
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Simplify language, e.g., replace “meaning” with meaning-in-life, “transcendence” with “going beyond oneself”, “limitations” with “barriers”
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Use culturally syntonic language
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So the order of Chinese expression here is more of an English way of expression, and it's not a way of Chinese expression. So then, I changed the order of the words. So when you read them, they sound more Chinese. [001]
I don't usually use “learnings” or “lessons”. For Chinese people, “learning” is something you pass down when you do something good, like when you win an award. It’s something happy. But you won’t really use this word [in the cancer context]. [007]
Even though sometimes you and the client are using the exact same word, such as “value”, you may actually mean different things, right? For example, when you talk about “tradition,” the client may understand the word “tradition” in a completely different way. Some Chinese people would definitely think of it as traditional festivals. They won’t be thinking about family tradition or family values. [007]
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Improve sentence flow and word choices, e.g., replace “lessons” with “what you have learned”, “homework” with “take-home exercises”
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Persons
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Consider region of origin and dialect
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Cantonese people still speak Mandarin … but there are certain vocabularies … [This may work better for] ... these Mandarin-speaking Chinese cultural groups. [001]
When I read this section based on the word order of Mandarin, I feel it flows pretty well, just like any books I read or listen to. But if it is delivered in Cantonese, I think it may be a little difficult to understand the way things are introduced. [003]
Personally, I am from mainland China, but I know that people from mainland China, Taiwan, Hongkong and Macao may talk in different ways. So I'm curious about the target audience, and whether you'd consider a simplified version or a traditional Chinese version. Because even though the content is similar, participants may not have the same language preferences. [008]
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Add cultural adaptation note with examples of how to use self-disclosure to aid the working alliance (e.g., by acknowledging commonalities and/or differences when they apply, such as being a fellow migrant/from a family of immigrants, or sharing the same language)
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Be aware of within-group variability
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Since there’s also a great deal of diversity among Chinese people, it’s also important [for counselors] be open-minded. For counselors who are culturally competent, they may serve the Chinese groups with more flexibility, considering the diversity within the Chinese populations. [002]
I think this is also very different from person to person. Sometimes how we should say a word depends on the patient’s level of education, or their mental status. I think there may be several different words we can use interchangeably. The patient's situation will decide which word is more appropriate. [006]
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Add cultural adaptation notes throughout manual to orient counselors to within-group variability
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Metaphors/Stories
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Be more specific/use more detail in stories and exercises
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Basically, you often need to provide very concrete examples - “okay, what have changed in your life since your diagnosis?” You wanted to ask about limitations and losses, right? You can say, “is there anything you used to do freely that has become difficult for you now? If so, can you give me an example?” [002]
I think it’s better to include more details, instead of being very general about it … By digging deeper into it, the participant can see the logic more clearly. Then, he will be able to self-reflect after the counseling session, or when they are not in the session. [004]
My understanding of this story is that there is an immigrant named Zhang Wei who came from his hometown to the US to pursue a new life, but he was diagnosed with advanced cancer. Even though he really wanted to go home, he was not able to. However, by keeping close contact with his family, he could still feel the love and the meaning of life. He could still express love to his family. He still remembers his favorite dish from his hometown, or something like that. Or, he thinks about the rice dumplings his grandma made. Well, my understanding is that you need to make the participant feel connected to his experiences. Even though he’s far away from where he wants to be, he could still feel connected to these experiences. Then, he will find meaning in life. This is how I think you can explain this story further and be more clear. [008]
I think for patients with lower education levels, they might not know how to answer your questions since the content is very abstract. We can give specific examples when introducing a new point … you can use more examples from literature. I mentioned the book "The Temple of Earth and Me" written by the Chinese writer Shi Tiesheng. Or you can use the examples of some famous people who have succeeded in combatting cancer. Then you can dig deep into their stories. You can say, “Those are the things that represent the meaning of life for them. So, for you, what do you think is the meaning of life?” [013]
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Add more detail to stories and metaphors in manual, e.g., the story of the immigrant Zhang Wei; add concrete examples to experiential exercises, e.g., the exercise on love, beauty, and humor
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Make stories/examples more culturally relevant
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In the Chinese culture, for people who are not Buddhists, Christians, or Catholics, they may think of “Supreme Deity (老天爷)” as “something greater than oneself.” What I am saying is that some people may know what you mean by “something greater than oneself” right away, but not everyone can understand this concept. For those who don’t understand it, we can provide some examples, right? Some people may be familiar with the concept of “the will of the Supreme Deity (天意)”, right? I’m not sure how much detail you can include in the manual, but I think it’s important to find ways to explain the concept of “something greater than oneself” to those patients who don’t understand it. I think it refers to some form of “higher power,” right? Right, then we should explain to them what “higher power” means, right? I am thinking that there may be a counterpart in Chinese, like “the will of the Supreme Deity, (天意).” This may be more comprehensible to Chinese patients. [002]
Sometimes when you are talking about examples involving parents and kids, you could also take into consideration their grandparents, since grandparents are sometimes more involved in a Chinese family. [008]
The example you are using now [Frankl] is based on foreign literature, and the character is a foreigner. But your program is targeting Chinese people. That’s why I think the example you are using, which is Frankl’s experience in the concentration camp, is not in line with what you mentioned earlier ... [Consider] adding] some examples related to the Chinese culture. [013]
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Add culturally syntonic stories/examples and expressions to illustrate MCP concepts, e.g., using the story of a well-known Chinese historian Sima Qian to illustrate “he who has a why to live for can bear almost any how”
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Methods
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Provide orientation to MCP-Ch program
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[Patients] will have questions about what kind of program it is, and they may have different understandings of what the program is … there are many kinds of programs. It could be an activity, a workshop, a research study. So I think we need to explain a little bit here. [001]
Participants will be more confident if the counselor could organize the plan with them, instead of creating goals that are too ambitious to achieve. The plan can be very detailed, even including the things that can be done on that day. By doing so, the participants will feel more empowered, and as if things are not so difficult in the end. [004]
I think it can be stated more clearly that this program is set up for patients with advanced cancer … You can mention at the beginning that we have learnt from past experience that a majority of advanced cancer patients will experience some loss of meaning or have some anxiety about life. And this is what this program is set to help with. I think I'll add a lot of normalizing language first, and then frame it. We can … say less about counseling. For example, don’t say, “I want to heal you,” but rather say, “if you're interested, I can help you explore this together. We understand that meaning exploration helps many people cope with this very difficult time.” [008]
A large part of the Chinese culture is about our connection with our family. Some Chinese patients might not consider participating in such projects if they have a good relationship with their families. You could also mention in the beginning that some of the content of our discussion may be things that we don’t normally share with people outside of the family, and we understand that it might not be something they’re comfortable with in the beginning. [008]
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Refine program introduction to orient the patient to the idea of counseling and discussing potentially private matters with a counselor
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Address potential distress
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I think this topic [roles and responsibilities] may trigger their emotions because they may no longer be able to commit to work, or to handle the responsibilities as a parent. I’m just saying that this topic may be a trigger for them. This topic is certainly important, but you may need to consider this possibility of their emotions being triggered during the counseling process … when you train the counselors, it may be necessary to prepare them for handling this kind of situation if it does come up. [003]
You need to be more alert when exploring trauma remotely. Since most of your topics are meaning centered, if they fall into very deep and sad emotions, you may need to … look out for that. [007]
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Add cultural adaptation notes on suggestions for working with patients who are distressed, e.g., emphasize the fact that the patient survived difficult experiences etc.
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Consider using a more active approach
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I want to put more emphasis on what can be done now and in the future. This can motivate the participants to practice on their own when they leave the session. What they have learned in the session should not be something that only exists in their imagination. They can have a to-do list for the day or for the week, which can better motivate them to act. [004]
We can [lead] them … [to show how] meaning emerges. The patient may say, “The reason I’ve been working so hard is because I saw my parents working very hard. That’s why I think...” Then, I would say, “Oh, so you’ve inherited this value from your parents. That’s why you’ve kept on working hard.” And then, after we tell them about this legacy, we can say, “Actually when you’re working hard, you’re also influencing your friends at the same time. You have created something unintentionally. Though you don’t know the meaning of your work, you may hear feedback from other people around you. This is a kind of gain as well.” We can give some examples like this to illustrate that meaning can emerge from experiences. [009]
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Add a list of questions as a guide for patients to share their life story with others
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Provide culturally appropriate education about cancer
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Another difficult reality is that some doctors do not like it when I talk about traditional Chinese medicine concepts. But there are also those who are supportive of traditional medicine. Some medical experts invite traditional Chinese medicine practitioners to their lectures. [005]
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Include resources on traditional Chinese medicine, cancer facts and common misconceptions
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Importance of therapeutic alliance/relationship building
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But first, the therapist needs to understand the cancer patients better ... If the therapist can get in touch and understand the patient first, instead of just forcing our knowledge onto them, the process will be more natural. [004]
Even if we speak the same language, the quality of the meeting still depends on a lot of other factors, such as if you can understand clearly what your patient is talking about. It’s also about the therapist’s attitude. If you can continue to build a relationship with the patient, you may still overcome the language limitation. [009]
I will give them a lot of validations. I will try to understand them, understand why they can’t process those positive things. I will validate and try to understand their feelings and tell them that those feelings are normal. Only when they have been accepted, heard, supported, and cared about, will they start to feel like, “Okay, life is not that terrible after all... at least my counselor is here with me and listening to me.” [011]
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Emphasize the role of a therapists as a learning partner and a witness to the patient’s life story
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Use of interpreters
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I object to delivering MCP via interpreters, because I always believe that it’s not simply a language barrier issue. It’s also a cultural competency issue. As we discussed before, I don’t believe someone without cultural competency can explain clearly what the sense of meaning and purpose means ...Additionally, explaining these concepts in culturally relevant ways is not the job of the interpreters. Interpreters only interpret what the counselors have said word by word, so they can’t serve the role of cultural clarifier. [002]
But if the alternative is no treatment, I think this [delivering therapy through an interpreter] is still much better than nothing ... It’s really difficult, but it doesn’t necessarily mean that it cannot be done well … The dynamics will be changed by the presence of the interpreter … However, there are definitely ways to work with this dynamic. For example, there are some training courses on how to perform treatments with the assistance of an interpreter. [014]
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Provide training for both interpreters and interventionists; discuss role of interpreter in initial session and in discussions about patient-counselor confidentiality
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Remote delivery
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I think telehealth interventions may be difficult for Chinese patients. Most of them prefer in-person interventions. Especially for patients who are more sensitive and vulnerable, they may hope that you can give them a hug, hand them a tissue, or at least be physically present. They may feel more comfortable this way. Also, counselors can observe the patient’s current status more directly. [003]
I do a lot of remote work. Especially when the clients are in different places, it’s sometimes very difficult to meet with them face-to-face …. I think you need to assess the appropriateness case by case. Especially for those whose conditions are very serious, for example, those with suicidal ideations, telehealth-delivered interventions might not be safe and effective for them. [011]
Maybe more people have gotten more used to telehealth after COVID-19. Telehealth is also very convenient. It provides an option for people who have trouble moving around. [015]
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Provide orientation on telehealth delivery
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Provide peer support
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When people with the same condition come together, the strength of the group will motivate individuals to share ... It is very important for patients to inspire, comfort, and heal each other. [007]
I also think that it would be better to incorporate peer support in the program. Patients do not just see the counselor in one-one-one sessions, but also meet other cancer patients. [015]
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n/a, consider adding peer support element in future iterations
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Content
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Address religious beliefs
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Some Chinese Christian patients might feel like God has slowly left them since they got cancer. Or, in the past, the patient was a very firm believer, but since they have gotten sick, they felt like “God has gradually left me”. But... of course you would only hear things like this from the Christian or the Catholic community. I think for most Chinse patients, if they don’t believe in those two religions, it might be difficult for them to feel what you describe here. They might not know what prayers are. Is it a wish, or is it some hope for changes in life? [004]
Personally, I don't have any religious beliefs, but I think when exploring the meaning of life, this is a very important aspect to consider ... I think “karma” is a very important concept, and people with different religious beliefs will have different understandings ... I would suggest having at least a note in the manual, saying that if the participant has religious beliefs, they could talk about their religious beliefs’ impact on their understanding of the meaning of life. [008]
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Add cultural adaptation notes to orient therapists when introducing concepts like “transcendence” and “something greater than oneself”
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Address role of family
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During the visit, one patient told me that he thought he was useless because he wasn’t able to do anything and had always been a burden to the family. Then I would say, "Indeed, your disease is very difficult, but if you have a positive mindset, that would be your contribution to your family.” Even after we pass away, our family members might still face other difficulties, and they might also feel anxious and worried at some point. However, if they can think about their mom or dad or whomever and recall how brave and calm they were when facing such difficulties in life, they would feel encouraged to face any challenges in their own lives. That's how you contribute to your family ... How they face this critical challenge of life is one contribution they can bring to others. [005]
In the literal sense, meaning is about what you have left for the world, right? But for some clients, meaning is about whether they have left something for their families and children … A lot of Chinese people feel that they don’t have enough time to say goodbye or grieve for their loved ones. Especially when they talk about the deaths of their parents, it is usually very touching, because they are facing the same thing now themselves. [007]
A large part of the Chinese culture is about our connection with our family. Some Chinese patients might not consider participating in such projects if they have a good relationship with their families. [008]
Why do some people fulfill their responsibilities? Because they live for their family. They want to fulfill their responsibilities. That’s because of their love. But when some family members fulfill the responsibilities to take care of the patient, they may not do it out of love. They may do it just for their own peace of mind. So, you will see that some people aren’t really willing to take care of their family because they don’t have strong love for their family. On the other hand, some patients themselves want to die. They want to die because of their love for others. They don’t want to be a burden for their family. [012]
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Add cultural adaptation notes to emphasize the importance of considering collectivistic cultural values; add examples/stories that center on responsibility and love for the family
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Goals
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Taboos around discussing death/end-of-life planning
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Because in my experience, I found that for many cancer patients, especially when they have not yet completed their first six cycles of chemotherapy, maybe they’re only at the second or the third cycle, they would not want to use the word “cancer”, they are a bit resistant about this. They would just say, “Oh, I have a disease”, or “there is something wrong with my body.” So I think it’s a bit psychologically unacceptable to raise the question of whether their cancer can be cured or not before the patient has completed all six cycles of chemotherapy. [004]
So, some people may be very sensitive when they hear the word legacy because Chinese people are usually conservative, and don’t want to talk about life and death. [012]
I just think that mentioning “legacy” to Chinese people when they are still alive is kind of like a taboo. They may not be willing to use that word. Patients may already know that they are dying, but they may not be willing to think about death or start end-of-life planning. Or, they may be more concerned about financial legacies. “Spiritual wealth” may be a bit more euphemistic ... Legacy makes it sound like this session is about inheritance planning. Legacy may not be appropriate since some people are very sensitive. [015]
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Ask the patient about how they would like to be remembered or what they wish to leave behind instead of using the term “legacy”
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Differences in prognostic awareness
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I’m not sure about your patients, but over here, a lot of family members don’t want the patients to know their illnesses, and they don’t want the patients to know that they are dying. Even if the patients have a tumor, their family don’t tell them that the tumor has metastasized … Based on the patients’ conditions, the answers they give you may be different. The answers from people who know they are sick are drastically different from those who don't know how their illnesses may impact their lives ... So, you need to adjust your plan based on the patients’ condition ... Make your therapeutic goal relevant to patients' situations. Otherwise, you may only get an “official” answer from the patients because they just want to be polite. [012]
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Add cultural adaptation notes on how to work with patients differently based on their prognostic awareness
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Need for meaning in contemporary Chinese culture
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Nowadays, generally speaking, there is a lack of the sense of meaning ... in the generation of our grandparents, everything they did was connected. The place you worked was also where your kids went to school, where you took a shower, where you lived with your good friends. It all took place in a dormitory. These things were all connected and concrete. The farmers ate what they grew. They knew where the meal was coming from. But in our current society, there is no such thing anymore ... Based on my observation, most Chinese immigrants bury themselves in their jobs, in their efforts to live a so-called good and happy life, and in building a better future for their children. These become their meaning. But suddenly when their bodies are faced with this existential struggle, many of their previous sources of meaning are suspended. Then it's easy for them to start contemplating the questions of “why I’ve been living this way?” [014]
I think “meaning” may not have been adequately addressed in this population. Most people think about planning for financial inheritances ... Most people prioritize survival, including how to fight cancer, how to feel better, and how to manage pain. Not many people think about spiritual legacy. I think it’s also helpful to provide opportunities for them to gain a sense of closure. [015]
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n/a
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Promote hope/acceptance
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I think we need to adjust and change the way we interact with them and deliver hopeful messages to them. Even when you are dying, you are leaving with hope, not despair. [005]
Yes, I think we can incorporate acceptance. But of course, making a change will be the best-case scenario, right? Changes from negative to positive, that is definitely the best. But then, they need to accept it first, and then slowly change their attitude into a positive one based on their own pace, right? [007]
In my view, as a counselor, we definitely want to make the clients feel like, “Oh, I am still doing good.” We want to help them find hope and the meaning of life during this very difficult period of time, instead of making them feel like everything is dark and hopeless. From the perspective of counselors, we need to bring our clients hope. [011]
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Establish the connection between “transcendence” and “acceptance”
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Concepts
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Some MCP concepts/material difficult to understand
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It’s hard to connect with “creativity”, or maybe it’s a bit abstract, very philosophical. It doesn’t connect with their daily life in a practical sense … So Viktor Frankl’s theory is very philosophical by itself. However, we have to express it in a practical way, so that the audience can get what you are trying to ask, and they can answer your questions, telling you what they think about meaning in their minds. [001]
And then, I think people may feel confused about the author’s name being brought up during the counseling session. Based on the Chinese population I have worked with before and their educational backgrounds, I think they may feel confused when they hear a long name like Viktor Frankl. [003]
I would actually focus more on letting them know what it feels like to have a sense of meaning. When a person has a sense of meaning, he would feel fulfilled, right? Feeling relieved, right? Although fear is still there, we have our inner strength. These are all brought by meaning. So I think it’s better not to use words like greatness and transcendence. [007]
I think the concept of meaning can be very broad, but if you change it to the meaning of life, it may be a little easier for people to understand. [008]
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Add concrete examples and metaphors; recommend “think aloud” approach to elicit associations the patients have made to the material
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Clarify/draw connections between MCP concepts
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Every session has a theme, but these themes are all related to each other. So, when you explain it in the very first session, you should convey this idea first. You need to make it clear to the patient about why we are doing … You have 4 sources of meaning: meaning from what you’ve inherited, from attitudes, from creativity and experience. There are connections among these 4 sources. You need to let the patient know why we need to talk about legacy and attitude towards life limitations, and why we need to talk about creativity. Creativity is related to responsibilities. We are talking about creativity, courage, and commitment, right? These are all related to the roles that a person has in society, which are also related to their experiences and life limitations in the past, present, and future. These ideas are all connected. [009]
Your legacy project is also about creating things, like writing journals and making a photo album ... this legacy project can be a part of creativity, or it can be derived from creativity. This way, the patient will be clear about the relationship between those two things. [013]
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Add cultural adaptation notes to emphasize the difference between the creative and experiential source of meaning
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