1. Introduction
Recently, the advance of diagnosis and cure technique for cancers has enabled the patients with cancer survive for long time. The cancer is then considered as one of the chronic diseases. The survivorship of cancer patient, living the entire life from diagnosis until the end of life with cancer by one's own values, has become a primary concept [1]. Cancer patients are susceptible to the effects and complications caused by the cancer and cures for it. Especially, postoperative complications would affect the patient’s quality of life (QOL), depending on the severity of the complications [2,3]. The decreased QOL will lead to the decreased survivorship of the cancer patient. Nurses need to give not only a physical support for patients to care the symptoms but a mental support to enforce the survivorship of cancer patients.
In Japan, the number of cancer patients has increased yearly; especially the number of both men and women with colon cancer has drastically increased [4]. The colon cancer accounts for 18% in all cancers, and its prevalence rate is the second highest [5]. The outcome of colon cancer have so improved that about 65% of patients with colon cancer have obtained the possibility to survive for five years [6]. The rectum is the most commonly infestation site of colon cancers. Treatment for the rectal cancer mainly involves surgery. Low anterior resection (LAR) operation which saves the external anal sphincter is one of the major surgeries against the rectal cancer [7]. Patients who underwent that operation will likely face problems including the defecation function troubles such as frequent bowel movements, soiling or constipation [8,9]. These symptoms are not only physically devastating but also have a negatively effect on patient’s survivorship [10]. The current supports for such postoperative patients are, however, focused on managing defecation function troubles and confirming a regular lifestyle and eating habit. Although those supports are provided, nurses do not fully provide an adequate care on patient’s survivorship.
The purpose of this study was to clarify psychological changes of a patient who had undergone the LAR operation for the rectum cancer, and to obtain clues for supporting patient’s survivorship by analyzing the interview comments of the patient.
2. Methods
2.1 Study design
A qualitative descriptive research design was used to explore cancer patient’s experiences and perception of the therapy including the surgery. Qualitative description is best described as a small-scale naturalistic inquiry that yields a rich description of the patient’s experience and perception in the own words [11].
2.2 Participants
The participant of this study was 56-year-old female. She had been diagnosed with the rectum cancer at an advanced stage and had received the LAR operation in a university hospital 2 years previously. Though she had had defecation function troubles, she had regularly visited to the hospital without other severe complications. After participating twice in a group meeting to support for patients who had undergone the same operation (patients’ meeting), she was examined by an interview method.
2.3 Ethical considerations
Before interview, the participant was informed that she could skip any question or even withdraw from the study at any time, even though the study would be anonymous and independent of the current treatment. Patient’s informed consent was obtained before interviews, including permission to record interviews.
2.4 Data collection
All data collection was performed by the first author. The interviewer had received qualitative research training in a graduate school. The participant took part in face-to-face, semi-structured interviews. An interview guide (Table 1) was used to help the participant articulate the thought and feeling about the personal cancer experience, difficulties and distress in the daily life. The authors developed the interview guide from earlier reports and their clinical experiences. The participant was asked to talk about experiences, difficulties and distress in the daily life. We used the questionnaire to collect demographic information, such as age, family members and so on.
A person centered, open-ended interviewing approach helped elicit detailed responses. The interviews generally lasted for 30 to 60 minutes. During the interview, she freely explained her experiences after the surgery until now. The interview comments were taperecorded by her consent. Obtained data were handled as verbatim records.
The interview comments regarding conditions of her bowel movement function, her lifestyle and personal feeling were selected from all comments using examples of the conditions of the bowel movement function after the LAR operation and factors relevant to lifestyle which were clarified in earlier reports. The selection was focused on the comments regarding the defecation function troubles, activities and events in postoperative life, managements of defecation function troubles which she had done, and her thoughts.
2.5 Data analysis
Data were concurrently collected and analyzed by the first and second authors together. Tape-recorded interviews were transcribed verbatim. We read transcripts repeatedly to obtain a better understanding of the entire interview and extracted significant statements. The statements were open coded using participant’s own words to present the experiences, difficulties and distress in the daily life [12], because the purpose of this study was to describe them.
We used 4 techniques to establish the trustworthiness of this study [13]. First, the first author tried to learn the background of the participant and build trust with her. Second, researchers highly experienced in qualitative research reviewed raw data and extracted statements. Third, we asked the participant to check the draft of findings. Fourth, an audit trail was used to check the representativeness of the extracted statements. We discussed data analysis with coresearchers repeatedly to keep the reliability and validly.
3. Results
3.1 Summary of postoperative course
The personal events which she experienced for 2 years after surgery, the trend in conditions of defecation function troubles, the change in survivorship were illustrated in Figure 1. Though the defecation function troubles had been improved, she still had fecal incontinence while on the job at the resumption of work, because she couldn't withstand an urge to defecate until she reached a rest room. She felt her family role to play with the newborn grandchild at its birth. When she joined in the first patients' meeting in 10 months after surgery, she decreased desolation and stress by engaging a conversation with members who had experienced same complications and getting information about the coping process of complications. The defecation function troubles lasted for one year and a half after surgery. During this period, she avoided going out such as attending a gathering or eating out in fears of defecation function troubles. One year and 9 months later after surgery, she became to control the defecation, and then gained more confidence to connect with people.
This study focused on the changes in the condition of the bowel movement function, the lifestyle of postoperative days and her personal feeling for 2 years after surgery.
3.2 Conditions of the bowel movement function
She defecated several times in a day after discharge from the hospital. She sometimes suffered from incontinence. In severe condition, she had fecal incontinences intolerantly on the way to the rest room. She had to relieve herself many times a day. She said her discomfort of her condition different from preoperative one, “I had fears about my future. I felt miserably but I couldn’t do anything against the complications of cancer.”
The frequency of defecate were reduced and her weight had increased 5 months later after surgery. She gradually dealt with defecation function troubles and controlled the defecation. She had severe constipation and diarrhea repeatedly 7 months later after surgery. She felt that the recovery had not worked out as intended and was irritated, “I lost my confidence in that time. I hate being the only one to confront such troubles.”
When she joined in first patients' meeting, she felt ease to hear a story of the other participant, “Doctor said that some patient need about 2 years to recover from troubles.”
One year and 9 months later after surgery, she successfully withstood an urge to defecate. She said with smile, “I am gleeful to withstand the urge of defecate and it built my confidence. I became to meet with people for joy and to think to travel with my grandchild.”
3.3 Lifestyle of postoperative days
She resumed work to recover her strength and confidence and to fill her role as a family member. But she was unable to work as her expect because of defecation function troubles and felt agitated. When her grandson was born a few months later after surgery, she reaffirmed her role in the family. She thought “I make an effort for my newborn grandchild.” However, she couldn’t go out, eat out and take a walk with her grandchild as she wished. Such actions became freely taken one year and 9 months later after surgery.
After participating in the first patients’ meeting, she became more positive in outlook. She began to take her grandson out after she successfully withstood an urge to defecate one year and 9 months later after surgery.
3.4 Personal feelings for 2 years after surgery
She lost her self-confidence in carrying out her daily activities because of defecation function troubles. She thought herself miserable and felt sorry for herself. She couldn’t go out and eat out at all. She envied the other friend who had received the surgery for other kind of cancer and could go out on her own will. She felt lonely and deserted. She repeated severe constipation and diarrhea and experienced anxiety for her future life. She said “I lost my confidence terribly at that time. I thought why I am the only one suffering from such symptoms.”
She joined in patients' meeting for the first time and relieved by receiving some information. She alleviated her apprehension of meeting people. She said “I am delightful to have contact with ones who have same diseases. I felt relieved that I am not the only one. But I still have anxiety about my future. The comments from the doctor of a member of the patients’ meeting, that there are some patients who need about 2 years to recover their symptoms, brought reassurance to me.” She felt decreased anxiety and loneness and increased motivation to do daily activities.
When she became to control the defecation, she said with a smile “I got confidence and happiness about my change. I became to meet with people. And I became to think to travel with my grandchild.”
4. Discussion
The results show that she had lived with painful symptoms caused by the complication of the LAR operation. The factors to enhance her survivorship were to control the defecation by herself and to join in the patients' meeting.
4.1 Supports to the patient who has defecation function troubles
In recent years, the LAR operation is aggressively performed and then the number of colostomy is now decreasing. However, the patient who received the LAR operation often has defecation functional troubles because of the damage of defecation sensation, the decreased ability of rectum storage, etc. due to the surgery [9]. The defecation functional troubles will get less severe in half of cases within two years and in 80 percent of the cases within three years. The support for defecation function troubles is required over a long period of time [7,14].
The patient couldn’t do anything against the complication of the LAR operation even if she tried to accept, “It was caused by the cancer.” The complication inflicted on her not only physical pain but emotional misery. This was an obstacle of her life. She lost her selfconfidence and vitality [14]. These resulted in her anxiety about her future. She avoided the gathering her former friends with the fear of defecation function troubles. She felt desolation and couldn’t dissipate her stress [9,15,16].
One year and 9 months later after surgery, she became to control her defecation, regained self-confidence and became positive. Sato et al. suggest, judging from the relationship between the QOL and actions to function troubles of patients with the rectal cancer within 1 year after surgery, a concrete support to promote patients to keep company with many different people are necessary to enhance their QOL [17]. It may be also an important factor for attaining QOL of the patients with the LAR operation to participate in the society and to contact with others [15,16,18]. But to do that, defecation dysfunction must be reversed to a certain extent. We need to aggressively help patients who underwent the LAR operation until the time of controlling their defecation [8,19].
One year and 9 months has passed before she became to control defecation function troubles. During this period the patients tended to visit a clinic less frequently because she didn’t need to get emergency procedure and to have the decreasing chances to communicate with other patients. This strengthened a sense of desolation. Consequently, we need to create a better system to give long term and continued support to such patients, for example, to set up a chance when patients can keep company with, pour out one's feelings in a friendly manner and exchange mutual information about conditions and coping process of complications.
4.2 Psychological effect of patients' meeting
Nurses have provided support for the patient with cancer and its family to live better life. However, in order for the patient with cancer to make a living with cancer, just the support that the nurses have provided is insufficient [17]. In addition to the specialist's support, the mutual help of those who had the same experiences is indispensable [20]. As chance to spread out such patients' network, there are a group meeting for self-support named as patient’s meeting, an exchange meeting where patients have a talk in each thought and so on [21]. In such meetings the patients with common experience gather, talk together, notice that the own personal experiences support the others, and then are also supported by them. This is the principle, Helper Therapy Principal, that by helping the others, the provider itself also gets the important profits.
The patient joined in the patients' meeting and she obtained the information about condition and coping process of the disease from the members or medical profession. She felt ease and reduced anxiety about complications. A story of other patient and information from medical profession might reduce her anxiety and comfort her [8].
As it stands now, supports for patients who underwent the LAR operation are not done sufficiently provided. Patients’ meeting supports them as a chance of exchanging mutual information and sharing their mind. This may enable the patient with cancer easily accept the change as a new person, readily survive on facing to cancer, and then enhance the survivorship.
The indication of the LAR operation has become wide due to the improvement of stapled anastomosis. In Japan, the proportion of the LAR operation was 66 percent among the operation against the rectal cancer in 2005 [22]. It would not be an overstatement to say that the LAR operation is the standard one against the rectal cancer. However, the research on and care against the defection function troubles are less well understood compared with the urination troubles [23]. Thus, adequate supports from nurses would be important to make the survivorship of the cancer patient higher.
4.3 Implications for clinical practice
The defecation function troubles are lasted for 2 years after the LAR operation. Getting a sense of accomplishment for becoming to control the defecation and attending a patients’ meeting are one of the important factors to enhance the survivorship of patient with cancer. A long-lasting support for defecation function troubles and an encouragement to participate in a patients' meeting are necessary for patients who underwent the LAR operation.
5. Limitations
This study focused on a patient with the LAR operation. The findings are not generalizable to all cancer survivors with the LAR operation. This study, however, fosters an understanding of cancer survivor’s perception that will form the basis for future research. Further studies with larger participants are needed to clarify the necessary support to patients who undergo the LAR operation.
6. Conclusion
Supports for patients with defecation function troubles as the complications of the LAR operation should be continued until they become to control such troubles. Particularly, we should provide a chance for patients to contact with other patients with same disease and medical profession, so that they exchange mutual information and share their mind. Encouragement to participate in a patients' meeting will help them greatly to enforce the survivorship of the patient with cancer.
Competing Interests
The authors declare that they have no competing interests exits.
Author Contributions
All the authors substantially contributed to the study conception and design as well as the acquisition and interpretation of the data and drafting the manuscript.
Acknowledgments
We warmly thank the participant in this study for understanding and participating in this study.