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Details of Particulars of Benefit Finding through the Experiences of Breast Cancer Patients Analysis on Breast Cancer Journals Written by Patients

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DOI: 10.4236/ojn.2017.71009    793 Downloads   1,075 Views  

ABSTRACT

This study aims to analyze the descriptions in breast cancer journals written by patients and to understand the experience of benefit finding among patients with breast cancer. We selected 22 such breast cancer journals written by patients published after 2000 in Japan. The extracted statements related to benefit finding of patients experiencing breast cancer from the 22 journals were subjected to a qualitative analysis, and the following seven benefit finding elements were extracted: “Gratitude toward others”, “Benefits due to cancer”, “Happiness at living a normal life”, “Realization of and satisfaction with my growth”, “Awareness of the meaning of my existence”, “Hopes for life”, and “Willingness to contribute to others”. These benefit findings suggest that these particulars fulfill cultural, practical, spiritual, and social meanings, and lead to self-revaluation in daily life.

1. Introduction

The incidence and mortality of breast cancer in Japan is increasing [1] . Patients with breast cancer live with an awareness of the “disease” for a long time because there is a risk of recurrence and metastasis of the cancer for ten years after surgery, the common initial treatment. For this reason, it has been anticipated that they will suffer from pain of various kinds and many studies have addressed physical and mental pain after surgery for breast cancer [2] [3] [4] . Further, Taylor [5] and Wand [6] have addressed the benefit finding (BF) that improves the will to live of patients with breast cancer. However, this topic is not well studied in Japan. Benefit finding encompasses the positive changes in attitudes brought about by the “experience of a disease”, and is considered a cognitive response for patients to adjust to stressful circumstances [7] . We expect that an analysis of the conditions and the background where BF occurs, also among Japanese patients with breast cancer, will make it possible to identify ideas to assist in the support of patients so that they can lead a more comfortable life without deterioration in the quality of life during the long periods of life with the disease.

This study analyzes data obtained from “narratives by patients”. Since 1998 when a study on Narrative Based Medicine by Greenhalgh and Hurwiz [8] attracted attention, research of “narratives by patients” has come to be regarded as an important method to promote patient-centered health care. Patients face the issues themselves by talking about their experience, and health care professionals show understanding of the patients and family by listening [9] and through this exchange the parties involved gain ideas to think about the clinical care. With this background, breast cancer journals written by patients (Journals) have been analyzed and utilized in research studies.

As concepts similar to BF, resilience, and post traumatic growth are also concepts known as adjustments to stress and trauma. In this study we perform an analysis using the concept of BF as the actual intensities and degrees of stress and trauma at surgery for breast cancer are not clear.

2. Purpose

This study aims to understand details of BF for patients with breast cancer experience arising from the “disease”, and to gain ideas useful in the support of patients with breast cancer, based on the data from an analysis of descriptions in journals published in Japan.

3. Methods

3.1. Definition of Terms

Breast cancer journals written by patients (Journals): here defined as “private records where patients describe the process of struggling with a disease” as defined by Kadobayasi [10] .

Benefit finding (BF): defined as personal positive changes brought about by the experience of breast cancer (and a cognitive response in adjusting to stressful circumstances).

3.2. Research Period

Data were collected from May to December, 2013.

3.3. Literature Reviewed

We searched books related to breast cancer in the Web database of “Paramedica”, a second-hand bookstore specializing in private volumes where patients describe the process of struggling with a disease, and identified 199 volumes. Of these 166 were available as of August 25, 2012, and excluding 61 volumes published before 2000, we reduced the number to 105. Of the 105 we excluded 22 volumes that met the following exclusion criteria: 1) lack of cognitive and mental descriptions, 2) the author is not a patient, 3) the author is not Japanese, and 4) includes cases of other kinds of cancers. After examining the content of the remaining 83 volumes, we chose and analyzed 22 which were determined to have been written well enough to be analyzed. In Japan most laws related to dealing with cancer issues were established in the present form after the year 2000. Considering this background, in the paper we decided to focus on and analyze the books published in 2000 or later.

3.4. Analysis

Having read through the 22 volumes, we extracted statements that express positive changes brought about by the experience of breast cancer. After coding the statements and paying attention to similarities, we assigned categories and sub- categories.

3.5. Reliability and Validity

Through discussion with co-researchers during the process of the analyses, we ensured reliability and validity.

3.6. Ethical Considerations

In using data of struggles with diseases published and openly available in such journals, we took care to handle the matters reported not to violate copyright, not to harm the persons and personalities appearing there, or bring dishonor to the authors.

4. Results

Table 1 details the 22 breast cancer journals written by patients (Journals). All the authors were women, aged 33 to 70 when the journals were published, and two were published after the authors had passed away. The duration of the struggle with the disease till the publication was from one year and seven months to 30 years. Extracting statements that were considered to be related to benefit finding (BF) from the 22 journals and performing a qualitative analysis, we extracted seven categories: “Gratitude toward others”, “Benefits due to the cancer”, “Happiness at living a normal life”, “Realization of and satisfaction with my growth”, “Awareness of the meaning of my existence”, “Hope for life”, and “Willingness to contribute to others”. The results of this analysis are discussed in the following sections by category and are shown in Table 2. For notation style, double single marks (‘) are used for category names, angular brackets (<>) for sub-categories, square brackets ([]) for code names, and italics (italics) for quotations from the narratives.

Table 1. Overview of the journals.

*As the publisher has no English name, we spelled the name based on the sound of Japanese letters.

4.1. ‘Gratitude toward Others’

This category is generated from four sub-categories and describes situations related to overflowing feelings of gratitude and deepening relationships with closely related persons, family and patients with the same disease. The sub-cate- gory <happiness in deepened family ties> includes codes identified by [I realized my family’s kindness after developing cancer], which shows awareness of members of the family who accepted the patient, and [I noticed myself as needed by my family] which expresses that the experience of family relationships had deepened and that there were feelings of satisfaction with time spent with the family. <Presence of a partner that became more important to me> expresses an Table 2. Positive changes due to cancer experience.

Table 2. Positive changes due to cancer experience.

awareness and sense of ease when the patient is in the company of the family, specifically the husband. The patient realized or discovered kindness and new aspects of the relationship with the husband, as shown by the statement that the person who follows me with the warmest heart is my husband, always staying with me. Patients tried to create time that was spent where husband and wife were alone, something which usually becomes possible after retirement, and they became aware of this as a fulfilling time for the couple. This category also includes the awareness that the existence of the husband eases the psychological burden on patients. <Realization of and gratitude toward people who accept me> expresses the awareness that the patient feels supported by people other than family, and the patients realized they became more considerate of the feelings of others after developing cancer.

[Kind support from others is an unexpected gift arising from gratitude] expresses that patients were aware of feelings of gratitude towards consideration shown by others, and discovered that support from others have an effect on both parties (the patient and others). <importance of words spoken by those with the same experience> expresses that the words help alleviate mutual feelings of distress which is possible only because both have experienced the same kind of cancer.

4.2. ‘Benefits Due to the Cancer’

This category is generated from two sub-categories which describe the experience where patients felt “benefits” clearly in their daily life due to the disease, cancer. <Activities to be engaged in after a cancer diagnosis> includes cases where hobbies patients had thought about for themselves, considering the pre- sent and future health conditions, now became enjoyable activities in daily life and not only for coping with cancer. <What I think was lucky> includes situations such as that [I decided to think that I was able to quit smoking as a reward for the amputation of the breast(s)]. This code also represents the thought that this (the diagnosis) had a better effect than had been expected, implying “a bonus unexpectedly earned” (former ideas) and “an active effort to decide to regard something previously unfavorable as a reward” (latter).

4.3. ‘Happiness at Living a Normal Life’

This category generated from the two sub-categories describes an awareness that patients recognize the value of things and matters in daily life that are taken for granted and which they had not noticed before developing cancer. <Pleasure in doing things that are taken for granted> expresses situations where patients feel happy to see annual events such as the new year and birthdays, recognizing that being able to be a part of all of such daily activities as a source of joy and happiness. <A feeling of peace recognized through experiencing pain> depicts situations where patients have noticed how happy and carefree life without physical pain was through experiencing the physical pain due to cancer, things they had taken for granted before experiencing cancer.

4.4. ‘Realization of and Satisfaction with My Growth’

This category is generated from two sub-categories describing situations where patients became aware that they had the ability to cope with cancer and overcome hardships.<My growth achieved through the cancer experience> describes situations where patients became aware that their perspective had changed through the experience of cancer, and realized that they themselves were able to develop despite the cancer and felt appreciation for the change.<Pleasure in re-recognizing my own skills> occurs when patients recognized that they themselves have developed skills after making efforts to cope with the distress due to cancer. As shown by the code [I would not have been able to make such efforts if I had not had this negative experience], patients recognized that pain and distress due to cancer had drawn out and helped develop their abilities.

4.5. ‘Awareness of the Meaning of My Existence’

">This category describes the positive awareness displayed by patients in relation to their existence. This awareness comes from many different experiences that the patients had, such as noticing something new and feeling happy. As this category is generated from one sub-category, we assigned the same name to both the category and the sub-category. The following statements represent this situation: I sometimes feel the meaning of my existence, thinking that suffering from cancer was not just a waste when I listened to the problems of someone else and the person thanked me, and I feel that I have come to appreciate myself more than before I developed cancer.

4.6. ‘Hopes for Life’

This category is generated from five sub-categories and describes an awareness of the meaning of being alive and the thought that I have to make the best effort to the last minute.<Importance of life recognized through experiencing cancer> expresses situations where patients realized the significance of their life more deeply, knowing the profound meaning of life as described by [I realized the joy of living] even through the cancer that makes patients think about death and brings much distress.<Willingness to make the most of life> is the situations where patients try to concentrate energy on the time they are alive with an awareness that the time they have left is limited.<Time given by cancer to start life again> expresses the awareness that patients had second thoughts on how to live until the moment of death, and tried to complete their lives in a satisfactory manner, as described by [I want to cherish every moment of my life while preparing for death].<Appreciation for experiencing cancer in the present age> shows gratitude at being able to live positively with hope because the development of cancer treatment makes physical pain less severe than it used to be.<Awareness of living with cancer> shows that patients changed their ideas about cancer, regarding it as a partner to live together with rather than an enemy to fight.

4.7. ‘Willingness to Contribute to Others’

This category is generated from two sub-categories and describes the inclination that patients want to assist and contribute to the lives of others by making use of the cancer experience.<Cancer experience that impels me to take advantage of> expresses the sense of mission of what the patients would like to or feel a need to (an urge to) make use of their experience of cancer to assist others who suffer from the same distress.<Improved understanding of the attitudes of healthcare providers toward patients> expresses the decision of the authors of the report here who are healthcare providers to make use of their experience with cancer patients in providing care.

5. Discussion

Like the authors of the breast cancer journals written by patients (Journals) analyzed in this study, it can be inferred that many women who undergo amputation of the breast(s) are subject to severe psychological trauma as they notice their change in appearance and feel lost and imperfect as humans. The published journals may be an expression showing that the authors who experienced to live with the disease while facing and suffering from this condition desired to contribute a record of their experience to society. This section examines benefit finding (BF) as extracted from the journals by category, and finally provides a discussion of BF.

5.1. ‘Gratitude toward Others’

Examining the matters of the codes in Table 2, two types of awareness appear in relation to family, husband, and other close persons, and these can also be observed in all of the four sub-categories. One type is an awareness of the relationship patients had before developing cancer, and the patients became better aware of the meaning and value of the relationships after developing cancer. The other is the awareness of a strengthening of relationships and changes triggered by being diagnosed with cancer, and an awareness of new relationships with previously unknown people. Here, the relationships involve changes in or improvements of the quality. In either case, patients became aware of their own role in the relationship, and realized that they are supported by the relationships and appreciate the relationships.

After the amputation of the breast(s), changes in appearance as well as functional disorders occur, and patients are subject to these physical changes feeling that they have been deprived of a feminine trait. This experience may cause a crisis in or loss of self-image. In this case patients become aware that they are supported and needed by the family, and they come to feel they can be themselves in their family. These discoveries may remind them of the value that they have in themselves. It can be inferred that support by the husband makes them realize that they are wives and females even though they have had their breasts removed, giving them a secure and strong sense of safety and pleasure. Therefore, it is suggested that becoming aware of <Other sides of the partner’s personality> is a discovery in the relationship of the couple, and the relationship becomes deeper and stronger. The pleasure obtained when patients realize that they have remained the same and are still playing their roles in the family, and that their ways are not inferior to what it was before losing their breast(s) would be a significant factor to improve their resilience as patients with breast cancer. Although there is a similar awareness in the relations to friends and close persons other than family, patients experience new facets in relationships. It can be inferred that they may have many opportunities to feel thankful for support provided by the people surrounding them in writing and publishing the breast cancer journals.

People who have experienced breast cancer confirm and revaluate themselves in terms of triple-structured relationships with husband, family, and other close persons. They may reconstruct their identity, something which has nearly entirely been taken away from them, in the three kinds of relationships after experiencing the disease, cancer, and surgery, having maybe felt as if their identity had been lost. We think that this pleasure and appreciation as regaining an identity once almost lost is the central concept of this category.

5.2. ‘Benefits Due to the Cancer’

The sub-category, <What I think was lucky> includes humorous expressions such as regarding the success in quitting smoking as a “reward” for the amputation of the breast(s), and a comment such as that [I thought that I was lucky to have a right to sit in priority seats (in public transport) thanks to the cancer]. These expressions could show the intention the authors try to think of their hardships as BF through different perspectives as well as by their own trying to do the best to survive.

Humor is defined as something people need by nature, and something they cannot live without [11] . Frankl has stated that “It is well known that humour, more than anything else in the human make-up, can afford an aloofness and an ability to rise above any situation, even if only for a few seconds” ( [12] , p. 35). We think humor can create an “objectivity” to look out over all of life and ourselves even in serious situations. It is not clear whether the authors developed the scope to become objective while writing the journals or the objective perspective was acquired through the help of humor in fighting against cancer. However, assuming that people who experienced breast cancer have a sense of humor would be a key to understand their psychological condition. Johnson analyzed the narratives of women with breast cancer and reported that humor is a significant coping strategy [13] . This leads us to believe that humor is a viewpoint that deserves more attention in the development of nursing sciences.

5.3. ‘Happiness at Living a Normal Life’

The sub-category,<Pleasure in doing things that are taken for granted> includes cultural, practical, and spiritual aspects rooted in Japanese traditional life-styles, such as “welcoming the new year”, where patients appreciate the day-to-day routines they have lived with before developing cancer. Culture is defined as sense of value and belief that is learned and passed down [14] , and people have lived in the culture by learning many things since we were born. Culture links the individual person and society firmly. The experience to notice that we can be in the same culture as before seems to help us confirm our feeling of comfort, leading to a sense of relief and convincing each of us that even now I am good enough really. Therefore, “what is taken for granted” can be assumed to be an extremely valuable awareness for people experiencing breast cancer.

5.4. ‘Realization of and Satisfaction with My Growth’

This category describes how patients realize that they have developed based on the cancer experience and how strong they have become overcoming the distress of cancer. As the codes in Table 2, patients became aware that they developed as persons because they have overcome the hardships of cancer, and have even shown appreciation for the cancer experience.

Post Traumatic Growth (PTG) is defined as the “experience of development as a person growing out of pain and mental struggles due to a very adverse condition” [15] . ‘Realization of and satisfaction with my growth’, one BF identified by the analysis in this study is the awareness that patients were able to develop themselves by their own ability to overcome the distress of or by overcoming the hardships of cancer. This is very similar to PTG, and we will examine the correlation between PTG and BF that results in benefits in future studies.

5.5. ‘Awareness of the Meaning of My Existence’

The statement that I sometimes feel the meaning of my existence, thinking that suffering from cancer was not just a waste when I listened to the problems of someone else and the person thanked me implies that patients questioned themselves about the reason for their existence after developing cancer. It is natural that experience of a sense of loss due to the disease and surgery makes a gap between the ideal self before experiencing cancer and actual self now, and there will be gaps and shifts in self-cognition. Endo suggests that such gaps will bring individuals into emotional conflict [16] . Many people who experience breast cancer may suffer different kinds of conflict. However, realizing that they are of help to others and understanding that their experience will be empowering is important for them to reconsider themselves positively and reconstruct an ideal self.

5.6. ‘Hopes for Life’

The four sub-categories that generated this category depict process from where patients became aware of death till they determined how they wished to live till death intrudes. All the codes extracted in this study describe situations where patients question themselves as to what they can do and how they want to live to the very last moment considering the time left, facing these obstacles in conjunction with the awareness of cancer, and in the unavoidable fear of death. We interpret ‘Hopes for life’ as BF to strive towards self-realization, powerfully after suffering anguish with fear of death. This BF may be unique in that it is generated when patients are forced to realize that they suffer from a disease that it is difficult to be cured from like a cancer is and that there is only a limited time left before death.

5.7. ‘Willingness to Contribute to Others’

This category can be interpreted as a BF that comes from awareness of social roles which patients can play only because they have experienced breast cancer or because it is a mission the patients feel a need to do.<Discovery of the significance of words of a person who has had a similar experience> included in ‘Gratitude toward others’ expresses that advice and words from persons who have experienced the same affliction with breast cancer was valuable. In case of a ‘Willingness to contribute to others’, it seems that patients who experienced breast cancer desire to use their experience to help others, contributing their experience to persons who are at a loss with the disease like they themselves used to be. It can also be interpreted as a genuine desire to help others to avoid suffering from the hardships they went through.

A study of BF among patients with collagen diseases in Japan has reported a characteristic that was expressed as “I was getting to desire to help others” [7] , and a study of BF among patients with psychiatric disorders has identified a desire to help others, reporting “finding a new role in society” [17] . ‘Willingness to contribute to others’ can be a BF unique to the Japanese who experience diseases, because it has not been reported as a BF in studies from outside Japan as the two studies cited above pointed out. However, it is not probable that an awareness of contributing to others has not occurred because volunteer activities are actively conducted in Western culture. Future studies need to explore this difference comparing cultural areas.

As described above, this study examined each category separately, and found that the authors of the journals felt appreciation for “common practices”, “living”, and “others” and had hopes to make the most of life again, while pondering on themselves and the discontinuity in their lives. The findings also suggest that patients revaluate themselves and find meaning in their existence while developing an appreciation of others. Pain and distress due to diseases generate irregularities in daily lives and routines. Therefore, we think that patients are motivated by trying to find meaning in the adverse event, trying to understand the event intentionally, and alter their world view, and eventually BF is the result. This study cannot determine the process of trying to find meaning in the surveyed journals, because we focus on BF identified as a result of analysis. However, as patients who recognize BF due to diseases do revaluate and reconstruct themselves, it can be inferred that they improve in resilience by positively making efforts to find meaning in their experience.

Journals were written by authors who “wished to write”, and included statements that express the desires of the authors, including the helping of others by publishing their personal experience of breast cancer or by contributing their experience to the wider society. For this reason, extracting BF may have been relatively easy in this study. However, we believe that positive changes through the experience of cancer do occur. As a study has reported that patients will be better adapted to life with cancer five to eight years later if they achieve BF in the year they were diagnosed with breast cancer [18] , it is necessary for healthcare providers to pay attention to BF at the early stages of the diagnosis. The present study does not clearly establish whether all patients with breast cancer experience positive changes in their lives. To understand the various and complicated total pain experienced by breast cancer patients is important and meaningful and we, nurses, should not interact with patients on the assumption that they will obtain BF. However, breast cancer patients have the potential to survive while struggling with the disease by obtaining BF under specific conditions. We are well aware that it is necessary to examine these conditions in future studies, and believe that BF due to a disease is a worthwhile subject that needs to be addressed further as a key element for patients with cancer thinking about how to survive.

6. Conclusion

This study analyzed the contents of 22 breast cancer journals written by patients focusing on positive changes, and seven categories were identified. The findings suggest that these seven positive changes were self-revaluation made in the process of living after the patients underwent surgery, by trying to find the meanings of each event in daily life while relating the occurrences to the social context or the context of illness trajectory.

Acknowledgements

We wish to thank Mr. Takehiko ITO, Ms. Michiko KADOBAYASHI, and Ms. Mikiyo SATO for their cooperation in the analyses. We are deeply grateful to authors of breast cancer journals for valuable messages. This work was supported by MEXT/JSPS KAKENHI (Grant-in-Aid for Scientific Research (C), No. 24593307).

Conflicts of Interest

The authors declare no conflicts of interest.

Cite this paper

Nakada, M. , Shiromaru, M. and Mizutani, S. (2017) Details of Particulars of Benefit Finding through the Experiences of Breast Cancer Patients Analysis on Breast Cancer Journals Written by Patients. Open Journal of Nursing, 7, 98-110. doi: 10.4236/ojn.2017.71009.

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