Breast cancer
Copyright B 2016 Wolters Kluwer Health, Inc. All rights reserved.
K E Y W O R D S
Breast cancer
Grounded theory
Initial chemotherapy
Psychological process
Yen-Chieh Chen, MSN
Hui-Man Huang, PhD
Chia-Chan Kao, PhD
Cheuk-Kwan Sun, MD
Chun-Ying Chiang, PhD
Fan-Ko Sun, PhD
The Psychological Process of Breast Cancer Patients Receiving Initial Chemotherapy Rising From the Ashes
Background: In Taiwan, breast cancer is the most common cancer in women.
Most breast cancer patients are willing to receive chemotherapy and experience
adverse effects and suffering during the process of chemotherapy. Objectives: The
aim of this study was to explore patients’ psychological process when receiving
initial chemotherapy for breast cancer. Methods: A qualitative grounded theory
approach was used. Data were collected through semistructured interviews of
20 patients who were from 1 district teaching hospital during 2012 to 2013.
Results: A substantive theory was generated to describe the psychological process
experienced by breast cancer patients in their initial treatment. The core category
was ‘‘rising from the ashes.’’ Four categories emerged and represented 4 stages
of the psychological process experienced by breast cancer patients. They were
(1) fear stage: patients are frightened about permanent separation from family,
chemotherapy, and the disease getting worse; (2) hardship stage: patients
experience physical suffering and mental torment; (3) adjustment stage: patients fight
against the disease, find methods for adjustment, and get assistance from supporting
systems; (4) relaxation stage: patients were released from both the physical and
mental sufferings, and patients accepted the disease-related change in their lives.
Conclusion: Each stage is closely related to the other stages, and each is likely to
occur repeatedly. It is important to help patients achieve the relaxation stage.
Author Affiliations: Department of Nursing, National Cheng Kung University The authors have no funding or conflicts of interest to disclose. Hospital (Ms Chen); and Department of Nursing, Chang Jung Christian Uni- Correspondence: Fan-Ko Sun, PhD, Department of Nursing, I-Shou versity, Tainan (Dr Huang); and Department of Healthcare Administration University, No. 8, Yida Rd, Jiaosu Village, Yanchao District, Kaohsiung City (Dr Kao), Department of Emergency Medicine, E-Da Hospital (MD Sun), 82445, Taiwan, Republic of China (sunfanko@isu.edu.tw). and Department of Nursing, I-Shou University, Kaohsiung (Drs Chiang and Accepted for publication October 13, 2015. Sun), Taiwan, Republic of China. DOI: 10.1097/NCC.0000000000000331
E36 n Cancer NursingTM , Vol. 39, No. 6, 2016 Chen et al
Copyright © 2016 Wolters Kluwer Health, Inc. All rights reserved.
Implications for Practice: The results of this study may enhance nurses’
understanding of the psychological process of patients receiving initial chemotherapy
for breast cancer, thereby helping nurses to provide appropriate assistance to improve
the quality of patient care.
G lobally, cancer ranks first among the top 10 causes of death. Breast cancer is one of the most prevalent forms of cancer affecting women. In 2008, an estimated
1 380 000 women in the world had suffered from breast cancer, of which 460 000 women died of the disease.
1 In 2010,
an estimated 20 000 (n = 202 675) new breast cancer cases were diagnosed in the United States, contributing to 18% of all cancers diagnosed in the United States that year.
2 In the latest
statistical data in Taiwan, female breast cancer had the highest incidence in 2012 (n = 10 525), with the median age of pa- tients being 53 years.
3 The incidence of breast cancer in Taiwan
has increased 3-fold in the last 15 years, increasing from 3640 cases in 1997 to 10 525 cases in 2012.
3,4
A benefit arising from the recent increase of cancer screening and advancement in medical technology is that cancer survival rates have gradually risen. In particular, the survival rate of stage 0 breast cancer patients can now exceed 97%. Similarly, stage 1 survival rates can now surpass 95%, and stage 2 survival rates 89%. Stages 3 and 4 survival rates can be maintained at 70% and 25%,
5
respectively. Therefore, early diagnosis and treatment of breast cancer in women are very important for survival.
Aside from patients with stage 0 cancer, most breast cancer patients require chemotherapy.
6 There are 2 types of chemo-
therapy: adjuvant chemotherapy after a surgical operation and neoadjuvant chemotherapy before surgical operation. Adjuvant chemotherapy is aimed at reducing the chance of relapse and relocation following surgical operation. At present, the chemo- therapeutic drugs more commonly used include CEF (cyclo- phosphamide, epirubicin, 5-fluorouracil), AC (adriamycin, cyclophosphamide), and EC (epirubicin, cyclophosphamide). CEF is the most commonly used drug in adjuvant chemother- apy following surgery and in neoadjuvant chemotherapy before surgery. A course of chemotherapy requires an injection around once every 21 days for a total of 3 to 6 injections, which depend on participants’ pathology report. Therefore, a course of chemo- therapy is slow and requires approximately 4 to 5 months
7,8
The long duration of the chemotherapy process can entail multiple symptoms including (1) fatigueVapproximately 99% of breast cancer patients receiving chemotherapy report fatigue, and greater than 60% of chemotherapy patients experience mild to severe fatigue; the duration of fatigue can be several months to years, influencing patient capabilities and standard of living
9Y11 ;
(2) insomniaVapproximately 65% of patients experience a reduced quality of sleep after receiving chemotherapy; the quality of sleep is particularly worse on the first night of the chemotherapy
12 ;
(3) nausea, vomiting, and loss of appetiteVapproximately 6% to 74% of these women experience loss of appetite
13 ; and (4)
hair lossVhair loss begins 2 to 4 weeks following chemotherapy. Common psychological symptoms reported by women in
treatment with breast cancer include (1) worryVpatients were
faced with uncertainty regarding treatment results, relapse, and future living arrangements since the beginning of the disease. All breast cancer patients gave worry-related responses; of these, 28% were mildly worried, 50% moderately worried, and 22% indicated severe anxiety
14,15 ; (2) anxietyVpatients experienced
moderate to severe anxiety at the beginning of the diagnosis. Their anxiety levels were relatively lowered after their diagnosis was confirmed and decreased gradually after the first treatment
16 ;
(3) depressionVstudies have revealed that approximately 16% of breast cancer patients are mildly depressed, 11% moderately depressed, and 3% severely depressed. Those with severe de- pression reported suicidal ideations or attempts. Some patients developed severe levels of depression within the first month of diagnosis
13 ; (4) sadnessVcommonly associated with a perceived
loss such as losing their hair. 17
Much of the current breast cancerYrelated research focuses on patient fatigue after chemotherapy,
10,11,18 the adverse
effects of chemotherapy, 19,20
and quality of life during chemo- therapy.
21,22 However, studies in relation to the psychological
aspects of chemotherapy patients are rare. Therefore, in the current study, the psychological experience of breast cancer pa- tients during their first chemotherapy was explored to help generate new understanding of this experience for first-time chemotherapy breast cancer patients.
n Methods
Grounded theory (GT) focuses on describing theory or ex- plaining the stages of experience.
23 Because the current study
aimed at generating a theory to describe the psychological stages of breast cancer patients during their first chemotherapy, GT using the approach of Glaser
24 was the most suitable for this study.
Sample Breast cancer patients were recruited from a teaching hospital in southern Taiwan. The criteria for participant sampling included (1) intravenous chemotherapy patients; (2) any breast cancer stage but patients would need to have finished the first course of chemotherapy (a course has 3Y6 injections); the interview was to take place within 6 months of finishing the first course of chemo- therapy; (3) female breast cancer patients; (4) 20 years or older; (5) speaker of Mandarin or Taiwanese language; and (6) signed the agreement to participate in this study. Patients excluded from this study included those (1) experiencing a recurrence and (2) who were weak and unable to talk during the interview.
Twenty breast cancer patients were invited to participate in the study, and no one refused. Their age range was 39 to 62 years (mean, 49.8 years). Seventeen participants were married;
Psychological Process of Breast Cancer Patients Cancer NursingTM , Vol. 39, No. 6, 2016 n E37
Copyright © 2016 Wolters Kluwer Health, Inc. All rights reserved.
20 participants were religious. The religions were mostly folk religion, Taoism, and Buddhism. Eighteen participants were em- ployed, and the remaining 2 were housewives. Nine participants had stage 2 breast cancer, 7 had stage 3, 2 stage 4, and 2 had stage 1 breast cancer. Six participants received adjuvant CEF combined chemotherapy injections 3 times, 4 participants received adjuvant CEF combined chemotherapy injections 6 times, 3 participants received adjuvant CEF combined chemotherapy injections 4 times, 4 participants received AC combined chemotherapy injections 4 times, 2 participants received neoadjuvant CEF combined che- motherapy injections 4 times, and 1 participant received neo- adjuvant CEF combined chemotherapy injections 3 times (Table).
Data Collection This study primarily used semistructured interviews to collect data during 2012 to 2013. The actual answers provided by the participants during the interviews were used to guide the in- terview into a deeper exploration of the psychological processes of breast cancer patients during their first chemotherapy. The interviewer had worked as a specialized nurse in a surgical ward for 7 years and had extensive knowledge regarding breast cancer chemotherapy. Interviews were conducted in an interview room in the hospital, which provided a comfortable, quiet, and un- disturbed environment. Each participant was interviewed once, and each interview lasted 30 to 60 minutes.
Three breast cancer patients who had undergone their first chemotherapy with at least 3 injections were selected to partic- ipate in a pilot study that was aimed at learning of problems that could arise during the interviewing process and details that required attending to and if interview guidelines needed to be
Table & Demographic Details of the Sample
refined based on the interviewee’s answers. After the pilot study, the open-ended grand tour interview questions became as follows: (1) What was on your mind before receiving chemo- therapy? How were your mood and feelings? (2) During chemo- therapy, what was on your mind? How were your mood and feelings? (3) After chemotherapy, what was on your mind? How were your mood and feelings? (4) How did the chemotherapy affect your life? (5) During chemotherapy, did you encounter any problems or difficulties? How did you adjust? Guided by participants’ interview content, the researcher would ask ques- tions linking to emergent concepts, subcategories, or categories in order to contribute to theoretical sampling and to reach the- oretical saturation. For example, the participant would be asked a question concerning physical suffering experienced as a result of receiving chemotherapy.
Ethical Considerations This study was approved by the institutional review board in a hospital (EMRP-101-030). Prior to participant enrollment, the interviewer explained in detail to the participants the aim of the study, the methods to be used, and the rights that the partic- ipants had. An agreement to participate in the study was signed only if the participant wished to join the study following the detailed disclosure about the study. Even after the agreement was signed, participants could request to opt out of the study at any time without providing reasons. During the interviews, in- terviewees had the right to decide on the details of the infor- mation shared. After the interviews were conducted, interviewees still could ask to delete any information provided. All interview data were processed based on anonymity; thus, privacy of the
Patient Age, y Marital Status Religion Occupation Breast Cancer Staging Chemotherapy
1 48 Married Folk religion a
Businesswoman T2 N3 M0 IIIC CEF � 6 2 57 Married Folk religion
a Service industry T1 N1 M0 IIA AC � 4
3 50 Married Taoism Construction worker T1c N1 M1 IIA AC � 4 4 45 Married Taoism Labor T2 N2 M0 IIIA CEF � 3 5 49 Married Folk religion
a Labor T1c N0 M0 I CEF � 6
6 41 Married Folk religion a
Labor T2 N2 M0 IIIA CEF � 4 7 47 Married Taoism Labor T1c N0 M0 I CEF
b � 3 8 62 Widow Buddhism Farmer T4 N3 M1 IV CEF � 3 9 51 Married Folk religion
a Self employed T1c N1 M0 IIA AC � 4
10 59 Married Other Insurance Saleswoman T2 N2 M0 IIIA CEF � 3 11 43 Divorce Buddhism Businesswoman T2 N0 M0 IIA CEF � 6 12 52 Married Taoism Labor T2 N3 M0 IIIC CEF
b � 4 13 50 Divorce Taoism Construction worker T2 N0 M0 IIA CEF � 6 14 39 Married Buddhism Service industry T3 N1 M0 IIIA CEF � 3 15 47 Married Catholicism Government employee T1b N1 M0 IIA CEF � 4 16 59 Married Other Government employee T1c N2 M0 IIIA CEF � 3 17 45 Married Buddhism Service industry T2 N1 M0 IIB CEF � 3 18 46 Married Folk religion
a Labor T2 N1 M0 IIB AC � 4
19 56 Married Taoism Housewife T4 N2 M1 IV CEF b � 4
20 50 Married Folk religion a
Housewife T1c N1 M0 IIA CEF � 4
Abbreviations: AC, adriamycin (doxorubicin), Cytoxan (cyclophosphamide); CEF, Adjuvant chemotherapy, Cytoxan (cyclophosphamide), Ellence (epirubicin), 5-FU (5-fluorouracil). a A mix of Taoism and Buddhism
b CEF, neoadjuvant chemotherapy, Cytoxan (cyclophosphamide), Ellence (epirubicin), 5-FU (5-fluorouracil).
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participants was protected. Participants who exhibited intense emo- tional reactions during the interviews were comforted by the inter- viewer. In this study, only 1 participant required comfort from the interviewer, but no participant required a referral to a psychiatrist.
Data Analysis Data analysis involved open and theoretical coding processes to achieve data conceptualization. Coding involves analyzing every word and sentence in the text data and identifying important, outstanding, and repetitive messages during data analysis.
25 Each
interview was recorded using audio tape, and the interview verbatim was prepared within 3 days. Every word and sentence was then analyzed immediately to seek out important and re- petitive message code to form concepts. Similar concepts were then grouped into subcategories using the constant comparative method. Similar subcategories were grouped into categories. Software package NVivo 10 (QSR International Pty Ltd, Australia) was used to assist in the grouping of concepts, subcategories, and categories.
26,27 A purposive sampling was used initially for emerg-
ing concepts, and then theoretical sampling was used to select additional participants until categories were saturated.
28 For
example, when the category of ‘‘relaxation stage’’ began to emerge from the data, an additional 3 breast cancer patients were selected to elicit more data about relevant properties (subcategories) and to reach saturation of this category. Analysis became saturated with concepts after the number of participants reached 20. At this point, no new concepts were discovered, and consequently, participant
recruitment was terminated. At the end of the analysis, 4 categories and 10 subcategories and a core category were derived from the data; the process of ‘‘coding family’’ was used to link each category with the core category,
24 which led to the theory
generation of describing the psychological process of breast cancer patients in their initial treatment (Figure).
Rigor Five methods were used to enhance the credibility of the current study.
29 They were (1) prolonged engagementVthe researcher
would participate in the care of the participants during their hospitalization and the continuing care of the patients during their follow-up visits to establish a good therapeutic relationship; (2) persistent observationVthe researcher continued to observe the verbal and nonverbal expressions of participants during their follow-up visits to understand their actual situation; (3) peer briefingV3 breast cancer psychological experts with experience in qualitative research were invited to collaborate in reviewing and discussing the categories, subcategories, and concepts obtained from the analysis. This was to ensure that the results would be consistent; (4) member checkV2 participants were invited to check the categories, subcategories, and concepts obtained by the researcher in order to determine if the results represented their actual situation; (5) use of a reflective journalVthe researcher used the reflective journal to help with self-awareness for cor- recting interview techniques. This enabled more detail and actual research data to be obtained.
Figure n A theory to describe the psychological process of breast cancer patients in their initial treatment.
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n Results
Four categories and a core category resulted. Using these 4 cate- gories, ‘‘the psychological process of breast cancer patients re- ceiving initial chemotherapy’’ was concluded. Four psychological processes were identified: the fear stage, hardship stage, adjust- ment stage, and relaxation stage. The core category was ‘‘rising from the ashes’’ (Figure). The 4 stages are described in the following sections, followed by a description of the GT con- structed around the core category.
Stage 1: Fear Stage In the first stage, breast cancer chemotherapy patients experienced the fear stage. The participants worried that the disease would be incurable and that they could no longer live with their family. They expressed fear at the thought of suffering adverse effects from the chemotherapy, cancer cell metastasis, and disease dete- rioration. Therefore, this category was classified into 3 subcategories.
FEAR OF PERMANENT SEPARATION FROM FAMILY
Many participants expressed fear about any possible, unfortu- nate event that could happen because of their breast cancer because their children were still minors or still required parental support. They also feared that their own parents would be worried when they were eventually informed about the cancer. Furthermore, the participants feared that their parents would think they were ill fated and worry that they would have to experience their child’s death before their own. Two participants had this to say:
I would think that if I really passed away, how would my child cope? I was the one who managed everything at home such as the child’s education. If I really passed away, my child and husband do not have a close relationship compared to me. I fear my child would not have anyone to talk to anymore. (Participant 1)
Since I am the only daughter at home, my father favors me the most. Therefore, I know he would be the one feeling hurt the most because of my cancer. I dare not to tell him about my cancer. I fear he would worry. (Participant 6)
FEAR OF CHEMOTHERAPY
Many participants knew there might be multiple adverse effects associated with the chemotherapy that could cause discomfort. Therefore, they were fearful of chemotherapy and wanted to look for alternative therapy. They also feared that chemotherapy would affect their body, and they would be unable to work. Three participants expressed their experiences as follows:
I am afraid when I hear about chemotherapy! This is my first time, I have heard from others that I may vomit. (Participant 18)
Before receiving chemotherapy, my husband suggested that I take herbal medicine to treat the breast cancer. (Participant 7)
Before receiving chemotherapy, I was very worried because I really wanted that job and would like to have
kept working. I worried that my body would become weak and be unable to work. I still need to earn money to support my family. (Participant 11)
FEAR OF THE DISEASE GETTING WORSE
Many participants received chemotherapy to kill off the cancer cells because they wanted to be completely cured from breast cancer, but they also feared that if the chemotherapy was un- successful, the cancer cells could spread, their lives could be cut short, and the disease could become incurable. Therefore, they were very worried about a possible relapse and their cancer metastasizing:
I fear of the possibility of cancer metastasis. I have heard others say that even if it is confirmed you have breast cancer, other cancers such as lung adenocarcinoma can arise. I am worried. (Participant 11)
During the chemotherapy treatment period, if I do not have to work and am lying on bed the whole day, I would think about anything, and they would usually be the negative side of things. I would worry about having a relapse or something similar. (Participant 18)
Stage 2: Hardship Stage After the participants began to receive chemotherapy, adverse effects began, and their bodies started to feel the strain. Their capability of performing daily chores was affected; they would start to feel the psychological strain as well. When both types of hardship combined, it became hard for the participants to withstand the suffering. This category was classified into 2 subcategories.
PHYSICAL SUFFERING
All participants complained about the various adverse effects of the chemotherapy, including hair loss and the worry that others would perceive them differently. Many participants expressed that after the chemotherapy they had symptoms such as nausea, vomiting, loss of appetite, insomnia, and inactivity due to fatigue. Some reported numbness in their limbs, a higher rate of infection due to weaker immunity, and poor memory. The following 5 par- ticipants shared their experiences:
After the chemotherapy, all my hair had fallen out; I locked myself at home because I was afraid of going out. This included when I needed to get some food for lunch, my husband had to manage that for me. When my husband was really tired, I would wear a wig out. I would consistently stare at people to see if anyone noticed that I was wearing a wig! (Participant 14)
After the chemotherapy, it made me lazy, and I did not want to move because I was so tired. Then, I had no appetite because my sense of taste changed. It was so different that I couldn’t taste the food. Everything was different in my body. (Participant 15)
I can usually fall asleep very easily, as in whenever I want to sleep, I can just go to bed and sleep. During chemotherapy, I felt very uncomfortable, tired, and sleepy, but I couldn’t fall asleep no matter what! (Participant 17)
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Because of the adverse effects of chemotherapy, my fingertips felt very numb. I went to do electrotherapy rehabilitation for a couple of weeks. My skin became red and itchy, and this led to infection. Because of this, I needed to get my own electrotherapy stickers. (Participant 12)
During the chemotherapy period, my memory wasn’t as good, and I often forgot things. I often forgot I had already gotten the things I wanted. (Participant 17)
MENTAL TORMENT
Many participants described feeling depressed when it was close to the next chemotherapy injection session because they did not want to suffer the adverse effects from chemotherapy. They felt that it was too hard to live and contemplated suicide. Some participants even blamed themselves for having done something wrong that caused the cancer. Two participants expressed:
I didn’t feel much from the first injection. In the second one, I felt very depressed. The discomfort could last for 4 to 5 days. I was thinking that if I had to suffer this much, I would rather not have had the chemotherapy. But my husband told me to be patient for a bit. In my third injection, I got even more depressed and uncomfortable. I was thinking that if I had to suffer this much to live, I would rather not live! (Participant 9)
My daughter had just given birth, so I made sesame oil chicken and fish soup for her. But she didn’t eat much, so I helped her eat it. I suspect that I ate too much and that it made me ill. My whole armpit was swollen, so I went to see the doctor. (Participant 12)
Stage 3: Adjustment Stage The psychological process of breast cancer patients during che- motherapy entailed both physical and mental suffering. They needed to adjust their mindset toward cancer using different positive coping methods such as exercise to surpass the suffering caused by chemotherapy. They also required help from friends, medical professionals, and religion to adjust themselves to with- stand the cancer treatment. This category was classified into 3 subcategories:
FIGHT AGAINST THE DISEASE
Most of the participants expressed that they had to live for their families and thus had to be brave in facing their disease. They had to adhere to the medical professionals’ instructions on how to treat their disease. Moreover, they had to fight for their lives by forcing themselves to eat, even when they were unable to eat. They had a desire to surpass their disease so that they could continue living. Two participants had this to say:
During chemotherapy, I felt that I had to fight this disease. I thought that I might as well try to fight it to see if I could live for a few more years! Besides taking the advice from doctors, I needed to depend on my own mental strength. After that, I tried to do as much exercise as possible and eat normally to help my body heal. (Participant 8)
After having chemotherapy, I couldn’t eat when I got home. But, I would think of some ways to eat something more nutritious. For example, when I cooked fish, I would add an egg in it. I would try to eat as much as I could. But if I couldn’t eat, I would make some fruit juice to drink. I don’t want to leave my child and his father behind! I will be brave and keep on living! (Participant 2)
