Theme1 Lack of significant decision-making support
Stereotyping of breast cancer surgery Patient's own knowledge reserve can support them to make surgical decisions in the best interests, but fewer than half of women undergoing mastectomy have adequate knowledge and skills to make the right surgical decision. They rigidly associate breast cancer with radical mastectomy, and have deep-rooted misconceptions about the surgery of breast cancer.
P6 Got breast cancer must be removed, there is no other way, had to do mastectomy, only this way!
P1 Breast removal is life saving! The breasts left is like a time bomb, and it will recur. It's better to take it off and cut it off, so it won't recur.
P17 There will be no sequelae after mastectomy. It's the safest choice to cut it off!
Unequal knowledge with health professionals Health professional support plays an important role in the surgical decision-making process for Chinese patients who identify with a system that values professional opinions. Health professionals are regarded as authority, and Chinese patient allegiance to authority which result in they respecting and accepting the advice put forward by health professionals. However, due to the knowledge gap between health workers and patients, as well as the lack of expression ability of health workers, patients in our study (n=18) reported a bit of variability in their interactions with physicians. Some women may feel they are being directed to choose radical mastectomy, or if their decision has already been made, feel that the physician has provided tacit approval or agreement. In addition, health professions may have projection bias in the process of decision-making, which means that the provider influences surgical decision making with his/her preferences. This makes it difficult for women to make surgical decisions that maximize their preferences.
P4 The director is an expert in breast cancer, is the authority. I believe in doctors, and listen to them!
P7 My doctor said a lot, but I didn't understand, so I told the doctor that it’s all up to you.
P19 My condition allowed me to have breast-conserving surgery, but I think the doctor's idea was that radical surgery was better. Their experience told me that it is better to choose radical operation.
Without the help of decision aids Women always enlisting the doctor's opinion as the main driving force of treatment decisions, but then solidifying this decision by or opinions from other sources. Generally, women tend to rely on a variety of online sources to obtain information about this process, many of which contain inaccurate or incomplete information. Therefore, they need standardized educational tools such as decision aids that aim to provide information to facilitate better decision making, taking the patient’s own values and preferences into account.
P15 I searched for breast cancer related information on the Internet, but the information on the Internet was a lot of messy, which often misled me.
P6 I don't have a brochure or video from health workers about how to choose surgery.
P18 Sometimes I look up the information about breast cancer surgery on the search engine, but most of the information is obtained in the process of communicating with patients.
Theme 2 Can’t mull under the strike
Immediacy of the decision Due to the limitation of medical resources, decisions regarding the choice of procedure type must often be made shortly after diagnosis, and most patients express they wanted to move to treatment as quickly as possible. But in a short period of time, participants had no established relationship with most of health workers. At the same time, they were dealing with the reality of being ill and learning a new medical vocabulary. So they don’t have a lot of time to think deeply and analyze their own situation.
P21 When I knew I had breast cancer, I thought the hospital had made a mistake. I couldn’t accept the fact that I had breast cancer, I broke down, I collapsed! On the day when the results came out, the doctor would make a preliminary treatment process, and on the third day I had an operation. At that time, I didn't have the ability to think too much and the quickest solution I could think of was to remove the breast.
P10 The doctor calmly said that I needed an operation and asked me if I wanted to choose breast conserving surgery. I immediately felt like it was spinning, very dizzy. I asked my doctor, "do you mean I have cancer? How come it's time to discuss whether to choose breast-conserving surgery? "
Breasts are out of deliberating When they get the diagnosis of the disease, under the information bombardment, their first thought is their longevity and family. They can’t process quantities of information quickly and think about their own needs. Young women with children worry about their life expectancy and question whether they can see their children grow up to be independent. The elderly women are worried about their health and don't want to bring burden to their families due to the deterioration of their health.
P19 At that time, I just thought that life was more important than anything! If health can be achieved by removing a breast, it's very cost-effective. After all, I have two daughters, the younger one is only a few months old.
P6 The first thing I thought about was my family when I decided to have an operation. Breast conserving surgery has a higher recurrence rate and requires a longer treatment period. I wanted to recover as soon as possible and fulfilled my family responsibilities.
Escape Breast cancer patients often feel very fearful and stressed when they get their cancer diagnosis. At the same time, they get too much information about breast cancer in a short time. When they don't know what to do in the face of disease, they will choose to escape. Women may tend to take passive roles in treatment decision-making and delegated decision-making to their health professions or family. But for health professions and their family, they pay more attention to curative effect and economic benefit of treatment, survival is usually more important than quality of life in traditional Chinese culture. Therefore, there may be inconsistencies between actual and preferred value.
P3 I know a little bit about breast cancer, but my family knows. I didn't make a choice in the surgical decision-making process. My husband made a choice for me.
P22 I didn’t ask, I didn't want to ask, I was tired of it. The less I knew, the better. The more I knew, the more I though, I couldn’t sleep at night.
Theme 3 Edified by the Chinese culture
Deep family values Culture can influence how individuals respond to cancer diagnosis and treatment. For Chinese people the collective concept of family
is deep-rooted and far-reaching, and they face major events with family as a unit, the body is not only his or her own but also that of the whole family. Therefore, the diagnosis of cancer is not only an individual event, but also a family crisis. Family accompanied patients to medical visits and act as a medium of communication medium between health professions and patients. In the process of making decisions, women tend to give up his or her personal appeal and compromise with family members to reach a common decision.
P13 To be exact, the disease is not on me, but on our family. It's a family responsibility.
P7 I wanted to have breast conserving surgery, but my grandchildren wouldn’t let me. They are very strong advocates of getting mastectomy. They persuaded me with their though and all.
P8 Treatment is painful, but it should be treated positively. After all, there is a family. There are so many people in this world that it doesn't matter if I leave this world. But for a family, if the elders are there, the family will be cohesive. There are too many people in the world, but there are very few in your family.
Hiding concerns about femininity Chinese cultural philosophies, which are completely different from western cultural foundations, shape individual perceptions of disease. Influenced by traditional culture, Chinese people will to hiding their concerns about femininity to avoid disturbing the harmonious equilibrium of interpersonal relationships. In addition, in Chinese traditional culture “survival” is a priority over everything, but the choice of breast conserving surgery is considered "for beauty, not for survival". Especially when other patients choose mastectomy, but participants express that they prefer breast preservation, the surrounding people may comment unfriendly on participants. Therefore, many women will hide their desire for breast and choose radical mastectomy to avoid unfriendly comments from people around them.
P3 Although I wanted to choose breast-conserving surgery, my husband and mother didn’t agree. I didn't tell them what I thought because I didn't want to burden them. Many words can only be buried in their own heart,sometimes I feel like I'm not me when I'm sick.
P16 I felt that I aged, breast cancer patients younger than me had their breasts removed, so it would be very strange if I didn't remove my breasts. If I showed that I wanted to keep my breasts, others might whisper bad things about me.
Conservative character Some of the old Chinese sayings, such as "stop the boiling by taking off the fire strike at the root of the trouble" and "get rid of the weeds by killing the root", affect the choice of breast cancer patients. They believe that breast cancer should be treated with caution and the source of trouble should be removed thoroughly to prevent future problems. To be on the safe side, they prefer mastectomy to reduce the risk of recurrence.
P14 The recurrence rate of breast conserving surgery was high. If it was not completely removed, it might have to be operated again later, I didn't want to take chances! In order to avoid the follow-up trouble, I chose mastectomy.
P9 I didn't know if my cancer cells had gone to other parts of my breast, lumpectomy might not be able to clean up the cancer cells. I finally decided to have a mastectomy. It’s safer, just to make sure all the cancer cells were removed.