Changes in the Participation Status of Laryngectomized Patients in a Self-Help Group After Hospital Discharge

Objectives: To elucidate the participation of laryngectomized patients in a self-help group during the first year after hospital discharge.

Methods: Forty-seven patients (39 men [83.0%] and 8 women [17.0%]) aged 64.2 (range, 46-82) years who underwent total laryngectomy for cancer in or near the larynx and consented to participate in the study responded to a questionnaire survey regarding registration and participation in a self-help group. The questionnaire was administered before and 3, 6, and 12 months after hospital discharge. Survey items were basic attributes (age at surgery and sex), self-help group registration and participation status, and reasons for not participating the group. The questionnaire sheet for the predischarge survey was handed to each patient and collected from the patient before discharge. For the postdischarge survey, questionnaire sheets were distributed and returned by mail. Basic attributes in the data were analyzed using descriptive statistics. Registration, participation status, and reasons for nonparticipation in each patient were chronologically listed to look for any changes in participation status and associated factors. This study was approved by the Ethics Committees of Juntendo University and the affiliated hospital. The participants were informed in writing that their participation in the study is voluntary, that they would not be treated unfairly due to their refusal to participate in the study, and that completing the consent form or returning the survey form would be considered as agreement to participate in the study. 

Results: Mean age at surgery was 64.2 years. About participation status of the self-help group, 27 patients (57.4%) became the member by the end of first year after hospital discharge, and only 9 patients were registered before discharge. Most patients who were not registered before discharge gave it by the reason of “thinking of joining the self-help group after discharge” or “because of poor physical condition “. Seventeen patients (36.2%) registered with the self-help group by the end of the first year after discharge. On the other hand, 3 patients (6.4%) who were registered before discharge resigned because of “no need to join the group” during the 3-month period after discharge.

  2 patients (4.3%) completed their registration during the 3–6-month period. One of the latter could not register before the end of the 3-month period because the self-help group was closed for summer vacation. Another patient was waiting and contemplating the time to register at postdischarge month 3, was a member of the self-help group at postdischarge month 6, but was no longer a member at postdischarge month 12 because of poor physical condition.

  The remaining 4 patients (8.5%) registered with the self-help group between 6–12 months after discharge, because they had all postponed the registration due to poor physical condition, noting that they were “waiting for the recovery of physical strength” or “feeling that the recovery of the throat was not sufficient.” During this period, one patient (2.1%) who was registered before discharge resigned because he doesn’t advance esophageal speech method.

  Twenty patients (42.5%) never attended the self-help group during the first year after discharge. Of these patients, 1 (2.1%) noted “no need to join the group because I live alone and don’t have opportunities to talk to others” and “it’s just not in my nature,” indicating a lack of necessity. Another 6 patients (12.7%) pointed out the long distance of the commute to the meeting place as the reason for nonparticipation. On the other hand, 11 patients (23.4%) mentioned before discharge that they were “thinking of joining the self-help group after discharge as soon as they regain physical strength,” showing their intention to join the group, but they had not felt fully recovered and thus had not yet registered with the group. Furthermore, there was the patient who cannot participate to the self-help group by economic reasons or because he was busy with his work.

Discussion: In these patients who underwent total laryngectomy, participation status in the self-help group during the first year after discharge strongly depended on their physical recovery, regardless of the time during the year. The reason for not yet feeling fully recovered despite the passage of time after the surgery and the stabilized incision site may involve eating and swallowing difficulties, which take up all their physical strength, and the adverse effects of postoperative chemotherapy. To support laryngectomized patients who are willing to join the self-help group, it is important to develop a continuous support system that meets the physical needs of individual laryngectomized patients, and a way of the activity of the self-help group that meets the lifestyle and the economic conditions after discharge. Although acquisition of esophageal speech is the major activity provided by self-help groups in Japan, the findings in this study suggest that the content and methods of the current activities should be reviewed to meet the wide range of needs that laryngectomized patients develop after hospital discharge.