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Methods: Subjects were 893 laryngectomized patients who agreed to participate in this research among 1,828 laryngectomized patients registered in self-help groups in Tokyo and Kyushu-Okinawa region in Japan. Survey content was basic attributes (age, sex, the number of years after undergoing laryngectomy, occupation at the time of investigation, family structure, and the main method of conversation) and the experience of participation in self-help groups. We mailed questionnaires to every subject. We conducted mail questionnaire survey in this study.
We calculated descriptive statistics about basic attributes. For conducting a significance test the types of communication methods of laryngectomized patients and family structure were separated into two groups: patients who mainly used either esophageal speech or tracheoesophageal shunt speech and patients who used other methods for communication, and those who live alone and those who live with other family members, respectively. A t-test was conducted on the experience of participation in self-help groups and age (p < 0.05). A χ2 test was conducted on the experience of participation in self-help groups, communication methods, occupation, and family structure (p < 0.05).
This research was approved by Ethical Review Committee of a university authors belonged to. We explained to subjects the purpose of this research, voluntary participation in this research, and the policy that the signing of the letter of consent or the returning of questionnaires was treated as an agreement to participate in the research.
Results: The average age of subjects was 70.8 years (ranging from 39 to 95 years, the lower quartile is 65 years old). 90.7% of subjects were male. Those who underwent laryngectomy more than 5 years ago were 562 (65.8%). The subjects who had occupation were 263 (31.4%) and who lived alone were 75 (8.6%). The main methods of communication (multiple answer) were as follows: those who used esophageal speech, tracheoesophageal shunt speech, electrolarynx, conversation by writing, and gesture were 565 (63.3%), 20 (2.2%), 244 (27.3%), 189 (21.1%), and 99 (11.1%), respectively. There were also a few people who used PCs, cellphone's email, fax machines, and the movement of lips as medium of communication.
On participation in self-help groups, participation was 274 (33.4%) and non-participation was 547 (66.6%). The average age of participation and non-participation was 69.7 years old and 71.2 years old, respectively. 568 subjects (69.2%) used esophageal or shunt speech and 253 subjects (30.8 %) used other communication methods. Those who had occupation were 250 (31.2%) and those who live alone were only 69 (8.3%).
A t-test showed that the average age of those who participated in self-help groups was younger than those who did not (p = .02). A χ2 test showed that the former were more likely to use esophageal speech or tracheoesophageal shunt speech than the latter at a statistically significant level (p = .0006). There was no statistically significant relationship between the participation in self-help groups and occupation. On family structure those who lived alone were less likely to participate in self-help groups than those who lived with family members at a statistically significant level (p = .033).
Conclusion: Laryngectomy which is considered to be radical treatment of larynx cancers and cervical esophageal cancers causes a loss of voice to patients. Therefore, laryngectomized patients were forced to acquire a new communication method after surgery. Self-help groups of laryngectomized patients in Japan are the places for exchange on the training of communicative methods such as esophageal speech and electrolarynx as well as the places for sharing one another's experience and talking to each other about one's problems such as the life after surgery. In this study we found that patients who use esophageal speech or tracehoesophageal shunt speech were more likely to participate in self-help groups. It is considered that this is due to their current activities.
Participants in self-help groups tended to be younger than non-participants. About 25 percent of subjects in this research were below 65 years. Japanese people at this age usually have jobs and assume a vital role in social activities. This suggests that participants in self-help groups include those who try to be reemployed by acquiring esophageal speech. Yet, in this research there was no association between occupation at the time of investigation and participation in self-help groups at a statistically significant level. This suggests that although patients are likely to participate in self-help groups for gaining communication skills with others by esophageal speech for rehabilitation in society, participation in self-help groups does not necessarily promote their extensive social participation such as their reemployment or the recovery of their previous vocational status. Previous studies show that about 20 percent of laryngectomized patients lost their job by the loss of a voice after surgery in Japan (Kotake, et al. 2005). Therefore, we need to examine factors which promote their social participation in future research.
This research also found out that patients who lived alone were less likely to participate in self-help groups than patients who lived with family members, implying that the level of daily exchange with family members might promote their social participation. It also suggested that laryngectomized patients who lived alone were less likely to gain support not only from their family but also peers. It is reported that laryngectomized patients suffer not only from physical problems such as the increase of cough and phlegm due to the change of breathing route and the change of swallowing function and appearance (Armstrong et al. 2001) and problems of daily life but also from the increase of mental disorder (Bussian et al. 2010), showing the necessity to examine the support system for laryngectomized patients who live alone.