Qualitative study of process in daily life of patients with larynx/pharyngeal cancer before total laryngectomy

doi:10.21203/rs.3.rs-1639804/v1

Download PDF

Research Article

Qualitative study of process in daily life of patients with larynx/pharyngeal cancer before total laryngectomy

https://doi.org/10.21203/rs.3.rs-1639804/v1

This work is licensed under a CC BY 4.0 License

Version 1

posted

You are reading this older preprint version

Read the latest preprint version →

Background: Many patients with larynx/pharyngeal cancer only become aware of the disease in an advanced stage due to hoarseness and a strange feeling upon swallowing. The aim of this study was to discuss what kinds of support are required for these patients by clarifying the process in their daily life prior to total laryngectomy.

Methods: A qualitative study was performed using the Modified Grounded Theory Approach in patients with larynx/pharyngeal cancer before total laryngectomy. In a semi-structured interview, patients were asked to talk freely about their health conditions, problems, and anxieties. Information on age, sex, family members living with the patient, occupation, diagnosis, staging, and subjective symptoms was also obtained in the interview.

Results: The analysis theme of “How do cancer patients live before surgery?” had a storyline centered on {surviving surgery}. The patients had a [strange feeling] caused by a sense of a lump in the throat and pain of hoarseness, as well as [unexperienced anxiety] for their first experience of hospitalization and surgery. The core category and the two categories interacted with each other and recurred. [Unexperienced anxiety] was related to [cannot imagine] daily life after hospital discharge, and transitioned to [not knowing what will happen after surgery] until the time comes. The core category of {surviving surgery} and the three categories interacted with each other and recurred. The patients also had a positive mindset of [having a purpose in life after hospital discharge] and were [looking for positives] at that time, while making a [request of support from physicians] to improve their [strange feeling]. Quality of life (QOL) prior to laryngectomy is influenced by negative mental and physical feelings caused by cancer and by anxieties about postoperative life, but with hope for social support.

Conclusions: Patients experience a “transition” before total laryngectomy, and at this turning point they try to think positively about surviving the surgery, but also feel loneliness, fear, and anxiety. These findings suggest the need for a healthcare team approach for pre- and postoperative support by staying close to a patient, even after hospital discharge.

Larynx/pharyngeal cancer

preoperative

total laryngectomy

daily life

QOL

There were 980,856 patients with cancer in Japan in 2018, and the percentages of Japanese males and females predicted to be diagnosed with cancer during their life were 65.5% and 50.2%, respectively, suggesting that one in two Japanese people may develop cancer [1, 2]. The numbers of patients with oropharyngeal cancer (22,034, 2.2%) and larynx cancer (5,247, 0.5%) [1] are relatively small, but most cases (79.2%) are advanced (stage IV). Thus, many of these patients require multiple and wide-ranging surgeries, such as cervical node dissection and free jejunal surgery, in addition to total laryngectomy [3].

Patients with larynx/pharyngeal cancer have problems including dysphagia and loss of taste and smell, and physical effects such as aphonia and a permanent tracheostoma after total laryngectomy [4, 5]. An explanation of the postoperative situation is given by physicians before surgery, but patients are still likely to be concerned about their postoperative life [4, 6, 7]. This includes difficulty imagining unexperienced events and maintaining an optimistic outlook for the surgery. However, the daily life of patients preoperatively and whether the choice of surgery was based mainly on their own decision have not been examined.

Larynx/pharyngeal cancer is often detected at an advanced stage because patients only visit a hospital after development of physical symptoms, such as hoarseness, a feeling of strangeness in the throat, and other symptoms of common cold, as well as a strange feeling upon swallowing, continuous throat pain, hematemesis, difficulty moving the tongue, ear pain, and tumors in the throat or neck [8]. Patients may also have significant mental stress after diagnosis and upon hearing from a physician that the tumor may enlarge without treatment and cause difficulty with swallowing or undergo lymph node metastasis. However, there have been no studies of the preoperative mental state of patients with larynx/pharyngeal cancer. After total laryngectomy, it is difficult for patients to return to their normal life and they may have problems in social roles, such as loss or change of employment due to permanent loss of voice.

To examine understanding of these issues among patients and how they influence quality of life (QOL) and daily life before surgery, we developed four research questions (RQs): ① What was your life like before the surgery? ② What psychosomatic social structure did you have? ③ What was your QOL before the surgery? and ④ What support did you need? Based on answers to these questions, the objectives of the study were to clarify the details of daily life and QOL of patients prior to total laryngectomy, analyze their psychosomatic social structure, and develop an understanding of support required before surgery. The results deepen the understanding of patients before laryngectomy and provide suggestions for nursing care for these patients.

The aim of this study was to discuss what kinds of support are required for patients before laryngectomy by clarifying the process in their daily life prior to performance of this procedure.

A qualitative study was performed using the Modified Grounded Theory Approach (M-GTA) [9–13]. The subjects were patients with larynx/pharyngeal cancer before total laryngectomy and were selected by physicians at research facilities. The physicians informed the subjects that the researchers would explain the study and that there would be no disadvantage to the patient if they chose not to participate in the study. A researcher then gave an oral explanation to the subject using an explanatory booklet, and the subject then provided consent to participation in the study.

The subjects were asked to talk freely about their physical conditions, problems, and anxieties in response to basic questions in a semi-structured interview. We also asked about basic attributes, such as age, sex, family members who lived with the patient, and occupation, and about disease diagnosis, staging, and subjective symptoms. During the interview, notes of answers were made due to possible difficulties with speaking due to hoarseness, and a verbatim report based on the notes was prepared immediately after the interview.

Analysis was conducted using M-GTA. This approach enables development of an original concept while performing an analysis grounded in data, and explains changes and diversity of human behaviors in communications on a certain level [10]. It is also based on behavior clarification theory, which shows a direction of future social interactions. In M-GTA, “researchers” are viewed as an axis in the method [13]. Thus, in M-GTA, recognition, action, emotion, and related factors and conditions may be discussed by examining data in accordance with awareness levels of problems, through highlighting of “researchers” [10].

Data were collected and theoretical sampling was performed with a designated analysis theme to compare similar and opposite data among target subjects of the analysis [13]. In the theoretical sampling, a concept was produced based on interpretation (definition) of a factor in the data for a subject, so that the concept would be understandable to some extent. We then examined whether the concept was valid for other subjects [9, 13] and confirmed whether the core categories and other important categories were covered completely. Theoretical saturation was confirmed by examining completion of concept production on an analysis worksheet, while analyzing specific factors in each event, the importance of each factor for a subject, positive/negative mindset for daily life, and differences between subjects with and without a positive mindset (small theoretical saturation) [10, 13]. We also examined a storyline centered on relationships between categories, and confirmed that the storyline structure was not changed upon addition of data and that internal interactions in the storyline were stable (large theoretical saturation).

The analysis theme was “How do cancer patients live before surgery?” The target subjects were four patients with larynx/pharyngeal cancer before total laryngectomy. The validity of the analysis was confirmed by specialists who developed M-GTA and researchers in larynx/pharyngeal cancer. The validity of the analysis results could not be reviewed by individual subjects due to the COVID-19 pandemic.

For RQ ① (preoperative life of cancer patients), we developed a storyline while comparing relationships among concepts, categories, and core categories, as mentioned above, and prepared a figure to represent the process of preoperative life for the patients. Next, based on this figure, we examined possible relationships between preoperative mindset and physical conditions of the patients to determine factors required to discuss RQ ②‚ (psychosomatic social structure). The figure prepared for RQ ① and the results for RQ ②‚ were then used to examine RQ ③ (preoperative QOL), and finally the results for RQs ①, ②, and ③ were used to develop an analysis of RQ ④ (suggestions for nursing care).

Ethical considerations

The patients were given written and oral explanations of the study, and only those who provided consent were included as subjects. Since the study was performed before surgery, the explanation was given after observation of the patients to take into account their mental and physical conditions. This study was conducted after obtaining approval from the ethical committee (No. 2250) of the Faculty of Medicine, University N.

Examinations of the completion level of the concept on the analysis worksheet and the results, including a storyline centered on relationships between categories, confirmed that the storyline structure was unchanged when data were added and that internal interactions in the storyline were stable. Thus, theoretical saturation was confirmed. The basic attributes are shown in Table 1.

In the sections below, the core category, category, and concept are shown with { }, [ ], and “ ”, respectively.

Preoperative life

The analysis theme of “How do cancer patients live before surgery?” had a storyline centered on {surviving surgery}. The storyline is shown in Fig. 1. The patients had a [strange feeling] caused by sensing a lump in the throat and pain due to hoarseness, as well as [unexperienced anxiety] for their first experience of hospitalization and surgery. The core category and two categories interacted with each other and recurred. [Unexperienced anxiety] was related to [cannot imagine] daily life after hospital discharge, and transitioned to [not knowing what will happen after surgery] until the time comes. The core category of {surviving surgery} and the three categories interacted with each other and recurred. The patients also had a positive mindset for [having a purpose in life after hospital discharge]. In addition, they were [looking for positives] at that time, while making a [request of support from physicians] to improve their [strange feeling].

In preoperative life, the patients could not eat anything or even drink liquids, and had a “feeling of having a lump in the throat” when they tried to swallow their saliva, in addition to decreased physical strength. They also had severe “pain of hoarseness” and difficulty speaking due to severe hoarseness, which led to a [strange feeling] that they had not experienced before. At the same time, they had [unexperienced anxiety] for the future as they had no experience with severe disease. They [cannot imagine] life after surgery, despite receiving an explanation from physicians about the postoperative conditions, and thus, they had a “vague image of postoperative life.” They also had no detailed information on available support services after hospital discharge, and “do not know about social resources,” causing a feeling in which subjects cannot imagine postoperative life. However, although [not knowing what will happen after surgery] until the time comes, they changed their mindset to focus on {surviving surgery}. Further details are given in the following sections.

[Strange feeling]

This category included the concept of a “feeling of having a lump in the throat”, with comments: “I have a feeling of having a lump in the throat upon swallowing saliva,” “I became unable to eat and drink a short while ago, and I am struggling with this situation,” and “I have a feeling of a lump in the throat and have not been able to eat or drink anything other than a small amount of water for the past few days. I am physically spent.” For “pain of hoarseness”, one comment was: “Severe hoarseness is painful and I cannot speak much.”

[Unexperienced anxiety]

This category included the concept of “anxiety due to no experience”, with comments: “I have no experience in visiting a hospital because I have not previously had a severe disease. This is my first experience of hospitalization and surgery, and I am anxious about my future life.” The concept of “anxiety about social activities after hospital discharge” included the following comments: “I have to think about postoperative life in which I may be unable to speak. Since I am an interior decorator, I have to communicate with my customers,” “I have been engaged in volunteer activities, and I worry about whether I can continue these activities after hospital discharge,” and “Since I feel numbness in my hands, I worry about whether I can communicate with other people through writing after the surgery.”

[Looking for positives]

This category included the concept of “better in present situation”, with the comment: “I feel better today, although I sometimes have a cough and a hoarse voice.” “Looking for merits of smoking cessation” was indicated by: “I began smoking cessation two weeks ago, and since then, my taste is better.” The patients could not imagine their future life due to difficulties in daily life and first experiences. This was affected by the tumor, which had grown larger in the esophagus, vocal cords, or respiratory route in the cervical area. They tried to have positive thoughts, such as cessation of smoking, but had symptoms, such as hoarseness and coughing on a daily basis. They had not previously experienced discomfort and had anxiety and “cannot imagine” for postoperative life.

[Cannot imagine]

The concept of “do not know about social resources” included the comments: “Although I know about home nursing visits, I did not know when I can use this service,” “I will refer to the guidebook on surgical costs and available services, and this guidebook is a reassurance for me,” “I cannot imagine my life with loss of my voice until the time comes, because I have no experience in losing my voice. After the surgery, I may be able to communicate with others by writing or gestures, but this will not allow my thoughts to be expressed sufficiently. Communication will be totally different from that at present, and I am not good at writing. Thus, I cannot imagine postoperative life.” A “vague image of postoperative life” included the comment: “I received an explanation of postoperative life at the outpatient department, but I have no idea about the postoperative situation until the time comes.”

[Not knowing what will happen after surgery]

The concept of “ I have no idea about postoperative life” included the comments: “I have no idea about postoperative life (with a slightly drawn face),” and “I have prepared for the surgery and I think I have very little choice. I have no idea about postoperative life until the time comes.” The patients could not imagine what would happen after surgery, despite having received an explanation, because they had no experience; no idea until the time comes; and increasing anxiety about the postoperative situation because it was an unknown world for them. However, they thought that they had little choice and were prepared for surgery. They also hoped for safe surgery and tried to concentrate on {surviving surgery}.

{Surviving surgery}

This concept included comments of “I have no choice other than to concentrate on the surgery (with a slightly drawn face),” “Well, I hope that the surgery will be over without any problems. Honestly, I have no idea about the postoperative situation, including loss of voice, until the time comes. Since I have no experience in losing my voice, I have no idea about loss of voice until the time comes.” The concept of “request for support from physicians” included: “I cannot eat anything or even drink liquids due to a feeling of a lump in the throat these days. I have had a breakdown. Because I cannot eat, I feel that my physical strength has decreased. When I asked my hospital about this situation by phone, they said that I should visit the hospital, so I am here now. If I have a problem again before admission, they said that I can be given an intravenous injection, so now I feel a modicum of relief.” Regarding “having a purpose in life after hospital discharge”, the comments included: “I hope to participate in a meeting (of a patient advocacy group) to think about future life,” “Firstly, I hope that the surgery will be over without any problems. I mentioned earlier that I wish to work in the fields again.”

Psychosomatic social structure

The target subjects felt physical pain due to difficulty in speaking due to hoarseness and decreased physical strength, in addition to difficulty with eating and drinking due to the advanced cancer causing a feeling of a lump in the throat. Thus, the patients tried to improve their symptoms by consulting with their physicians and to decrease difficulties in their daily life as much as possible. The consultation with a physician was a request for social support. The patients also understood that only resection of their cancer would improve their daily life, and that they had no choice other than to undergo surgery. Although they were given an explanation about loss of voice caused by the surgery, they could not imagine life without a voice because they had no experience in losing their voice. Thus, they had cannot imagine their postoperative life and felt increasing anxieties due to the possibility that they might lose their job and social activity. However, they made an effort to keep a mental and physical balance and think positively to survive the surgery, since keeping such a balance allowed them to follow think about objectives in postoperative life.

In the psychosomatic social structure, we found a relationship in which patients wanted social support due to their physical symptoms, and a psychosomatic relationship in which patients could not imagine unexperienced events, while having anxieties and fears due to physical symptoms caused by cancer. However, there was another structure in which patients changed their mindset to take social actions so that they could move forward and survive the surgery by overcoming anxieties about postoperative social rehabilitation.

Preoperative QOL of patients before laryngectomy

The concept of preoperative QOL of patients who were going to undergo laryngectomy was defined as a negative psychosomatic condition caused by a feeling of strangeness due to cancer, and anxiety from the fact that they could not imagine their postoperative life, for which they hoped for social support.

Patients who were going to undergo laryngectomy had pain and decreased physical strength due to difficulty with eating and drinking. Their psychological state due to this pain caused a situation in which they imagined death. After a physician provided an explanation about laryngectomy, the patients felt more risks for their life. They faced the question of whether they could survive, and then heard from a physician that they had to undergo an unexperienced surgery and lose their voice permanently after the surgery. They vaguely understood that they could not return to normal after the surgery, but could not imagine or felt a fear of imagining postoperative life with no voice because they had no experience in losing their voice. This was shown in the comment, “I have no idea about future life and no choice.”

The mental state of the patients included shock and confusion about having to end past living habits, but this also caused a transition [14]. This transition reflects “changes” from the past living environment and mental conditions [14], as a process from the “end” of past life to the beginning of something new, through a neutral period with confusion and pain [14]. The situation with no vision of postoperative life is in the neutral period with shock and pain, in which patients had no idea of where they are going (disorientation) [14]. They experienced loss of the identity that they had developed for nearly 60 years (disidentification) [14], and thus they had increasing anxieties about future life. At this turning point, they felt confused, but had to decide whether they should maintain their regular lifestyle or make major changes. This blank neutral period with confusion, in which they could not go forward or backward, is important. During this period, patients can gain true wisdom by repeatedly reviewing their life [14]. Patients who are going to undergo laryngectomy have three options: death with no surgery, death during surgery, and permanent loss of voice after surgery. The patients feel fear for oncoming death and loneliness. After changing their mindset so that they could be released from pain, they had a motivation for {surviving surgery} and resolving the crisis.

One important factor in the study is the absence of a vision of postoperative life. Patients who decide to undergo laryngectomy, as the only survival option, will have decreased QOL in postoperative life, and it may take one year after hospital discharge to regain their preoperative QOL [4, 5]. Thus, there is a need to provide information and mental support to these patients to decrease their loneliness as much as possible. Factors promoting psychological orientation of laryngectomees include “informal” support by families and patient associations and “formal” support by medical staff, including delivery of information and mental support [7]. Thus, it is important to stay close to patients who have anxiety about an unpredictable life after surgery, and to provide support so that they can choose to undergo laryngectomy based on a concrete vision of their postoperative life.

Support for decision-making of patients can be provided by a team of nurses, clinical psychotherapists, nutritionists, social welfare workers, and care managers of outpatient departments, hospital wards, and regional liaison offices, in addition to support by physicians. Based on the decision-making of patients who can imagine postoperative life and the possibility of postoperative transition, it is important to identify the neutral period. Professionals need to understand the loneliness and fear of patients in the blank neutral period and stay close. “Being with the patient” is equal to “Not doing, but being” [15], which suggests the need to be interested in and think kindly of the patients. If this is achieved, the patients will feel someone close to them with warmth. For the patients, it is important to feel that someone is close and concerned about them, even if they do nothing. Patients who feel a peaceful atmosphere can be released from pain, even for a second, and in this atmosphere, the patients can change their mindset to step forward, causing a transition.

It is also important that patients learn about themselves and decide on future directions in a peaceful atmosphere during the blank neutral period. The transition may develop several times, not once. If a team can support the patient to meet their needs in each development of the transition in accordance with individual situations, the patient can end their regular life and step forward into future life. Saunders [15] suggested that spiritual pain, including loneliness and fear for multifaceted problems, could be improved by support from a team of professionals [15]. The current study showed that QOL can be improved with support from a medical care team pre- and postoperatively, and even after hospital discharge.

One limitation of this study was that contrary opinions over time could not be obtained because the interview was performed on the day before surgery. A future task is to examine the effects of a team for preoperative life support on decision-making of patients.

The analysis theme of “How do cancer patients live before surgery?” had a storyline that centered on {surviving surgery}. The patients had a [strange feeling] caused by the sense of a lump in the throat and pain due to hoarseness, as well as [unexperienced anxiety] about their first experience of hospitalization and surgery. The core category and two categories interacted with each other and recurred. [Unexperienced anxiety] was related to [cannot imagine] of daily life after discharge, and transitioned to [not knowing what will happen after surgery] about postoperative life until the time comes. The core category of {surviving surgery} and the three categories interacted each other and recurred. However, the patients also had a positive mindset for [having a purpose in life after hospital discharge], and were [looking for positives] while making a [request of support from physicians] to improve their [strange feeling].

We found that patients wanted social support, and a psychosomatic structure in which patients could not imagine unexperienced events, with anxieties and fears due to the physical symptoms of cancer. However, there was another structure in which patients changed their mindset to move forward and survive the surgery by overcoming anxieties for postoperative social rehabilitation. Preoperative QOL included negative mental and physical conditions due to a feeling of strangeness and anxieties about no idea of postoperative life. The patients experienced a “transition” before surgery, and at this turning point, they tried to have a positive mindset to survive surgery, despite feeling loneliness, fear, and anxiety. These findings suggest that a medical care team is needed to provide pre- and postoperative support by staying close to a patient, even after hospital discharge.

Acknowledgements

We are grateful for the cooperation of the patients in this study.

Authors' contributions

KK designed this research plan, collected and analyzed the data. KK wrote the manuscript. KH and MK interviewed patients. IO and HU explained to the patients and asked for their cooperation. IK and YS analyzed the data. YK supervised the validity of the results of the analysis. KK, KH, MK, IO, HU, IK, YS, YK, KI, YI, YH and YA discussed the draft paper.

Funding

Japan Society for the Promotion of Science and Technology Scientific Research Fund (Grant-in-Aid for Scientific Research (B), No. 19H03937).

Availability of data and materials

The data that support the findings of this study are available from The Medical Ethics Review Committee of Nara Medical University but restrictions apply to the availability of these data, which were used under license for the current study, and so are not publicly available. Data are however available from the authors upon reasonable request and with permission of The Medical Ethics Review Committee of Nara Medical University.

Ethics approval and consent to participate: This study was conducted with approval from the ethical committee (No. 2250) of the Faculty of Medicine, University N. Patients received written and oral explanations of the study prior to giving consent to participation.

Consent for publication: Not applicable

Competing interests: The authors declare that they have no competing interests.

National Cancer Incidence Data (2016-2018), Cancer statistics, cancer infromation service. https://ganjoho.jp/reg_stat/statistics/stat/summary.html. Accessed 25 Jan 2022.
2021 Cancer statistics in Japan. https://ganjoho.jp/public/qa_links/report/statistics/pdf/ cancer_statistics_2021.pdf. Accessed 25 Jan 2022.
Kotake K, Kai I, Iwanaga K, Suzukamo Y, Takahashi A, Haba K, et al. Causal relationship between six factors of psychological adjustment of laryngectomized patients: Chronological changes from before discharge from hospital to twelve months after it. In: 9th International Nursing Research Congress by Honor Society of Nursing, Sigma Theta Tau International. Melbourne; 2018.
Kotake K, Kai I, Iwanaga K, Suzukamo Y, Takahashi A. Effects of occupational status on social adjustment after laryngectomy in patients with laryngeal and hypopharyngeal cancer. Eur Arch Otorhinolaryngol. 2019,276:1439-46.
Singer S, Danker H, Guntinas-Lichius O, Oeken J, Pabst F, Schock J, et al. Quality of life before and after total laryngectomy: results of a multicenter prospective cohort study. Head Neck. 2014;36:359-68.
Kotake K, Yamada M, Suzukamo Y, Iwanaga K, Haba K, Takahashi A. Difficulty of realities on daily life of laryngectomized patients with hypopharyngeal cancer for a year after discharge: a qualitative study. J St. Luke's Soc Nursing Res. 2016;20:27-34.
Kotake K, Suzukamo Y, Kai I, Iwanaga K, Takahashi A. Social support and substitute voice acquisition on psychological adjustment among patients after laryngectomy. Eur Arch Otorhinolaryngol. 2017;274:1557-65.
Cancer information services: Head and Neck. https://ganjoho.jp/public/cancer/index.html#tab-list1. Accessed 25 Jan 2022.
Kinoshita Y. Modified Grounded Theory Approach: Regeneration of qualitative experimental research: Koubundou Publishers Inc.; 1999.
Kinoshita Y. Practice of Modified Grounded Theory Approach: An invitation to qualitative research: Koubundou Publishers Inc.; 2003.
Kinoshita Y. Qualitative study and significance of descriptions: M-GTA/Case/Ethnography: Koubundou Publishers Inc.; 2009.
Kinoshita Y. Live lecture on M-GTA: Practical qualitative research: Modified Grounded Theory Approach: Koubundou Publishers Inc.; 2007.
Kinoshita Y. Authentic text M-GTA: Qualitative research method for theorization of practices: Igaku-Shoin Ltd.; 2020.
Bridges W, Kuramitsu O, Kobayashi T. Transitions: Making Sense of Life's Changes, vol. 18: Pan Rolling Inc.; 2014.
Saunders CM, edited and translated by Komori Y.: Cicely Saunders in “Nursing Times”: Terminal care staying with dying people “Watch with me” (pp. 114-127) “Should a patient know…?” (pp.13-18) Kitaohji Shobo Co., Ltd. (Reprinted from Nursing Times, pp. 1615-1617, 1965, pp 994-995. 1959, London); 2017.

Table 1 is available in the Supplementary Files section.

No competing interests reported.

Table1.jpg

Download PDF

Version 1

posted

You are reading this older preprint version

Read the latest preprint version →

Qualitative study of process in daily life of patients with larynx/pharyngeal cancer before total laryngectomy

Status:

Version 1

Abstract

Figures

Background

Methods

Results

Discussion

Conclusion

Declarations

References

Tables

Additional Declarations

Supplementary Files

Status:

Version 1