Table 3.
Questionnaire Answers
| |
No. of respondents (%) |
|
||
|---|---|---|---|---|
| No. of times participating in the event | First time (n = 23) | Multiple times (n = 24) | Total times (N = 47) | p |
| (2) At what times are you available to attend these sessions? (multiple answers allowed) | ||||
| 10 a.m.–12 p.m. | 4 (17.4%) | 5 (20.8%) | 9 (19.2%) | <0.001 |
| 1 p.m.–3 p.m. | 10 (43.5%) | 16 (66.7%) | 26 (55.3%) | |
| 3 p.m.–6 p.m. | 15 (65.2%) | 16 (66.7%) | 31 (66.0%) | |
| 6 p.m.–8 p.m. | 6 (26.1%) | 5 (20.8%) | 11 (23.4%) | |
| (3) For how long do you want to participate in a session? (multiple answers allowed) | ||||
| 30 minutes | 4 (17.4%) | 0 (0%) | 4 (8.5%) | 0.001 |
| 1 hour | 19 (82.6%) | 23 (95.8%) | 42 (89.4%) | |
| 1.5 hours | 8 (34.8%) | 4 (16.7%) | 12 (25.5%) | |
| 2 hours | 1 (4.4%) | 1 (4.2%) | 2 (4.3%) | |
| (4) How many times a month do you want to participate? | ||||
| Once a month | 12 (52.2%) | 16 (66.7%) | 28 (59.6%) | 0.001 |
| Twice a month | 9 (39.1%) | 8 (33.3%) | 17 (36.2%) | |
| Four times a month (weekly) | 2 (8.7%) | 0 (0%) | 2 (4.2%) | |
| (5) Do you want to attend another online session? | ||||
| Yes | 19 (82.6%) | 24 (100%) | 43 (91.5%) | |
| No | 0 (0%) | 0 (0%) | 0 (0%) | NA |
| Unknown | 4 (17.4%) | 0 (0%) | 4 (8.5%) | |
| Provide a score out of 10. The highest score is 10 (exceeded expectations) and the lowest score is 0 (did not meet expectations). | ||||
| (6) NPS (Do you want to invite your acquaintances to the online program?) | 52 | 71 | 62 | NA |
| Mean (SD) | ||||
| (7) Was the online program what you expected? | 8.0 (1.66) | 8.3 (1.20) | 8.2 (1.43) | NA |
| (8) How did you feel about the online program? | 8.5 (1.04) | 8.5 (1.14) | 8.5 (1.08) | NA |
| (9) Did the online program help you cope with your disease? | 8.6 (1.08) | 8.4 (1.44) | 8.5 (1.27) | NA |
| (10) Were you satisfied with the online program? | 8.7 (1.02) | 8.8 (1.15) | 8.7 (1.07) | NA |
| (11) Do you find it is easier to attend the program online compared to face-to-face? | 8.7 (1.49) | 8.7 (1.94) | 8.7 (1.72) | NA |
| Please tell us if you have any topics you want to discuss in future Online AYA Hiroba sessions. | ||||
| Physical problems How to cope with treatment What you started to do to improve your health or what you are taking care of in your daily life Usual infection prevention behavior Change in appearance (how did you cope with the change in your appearance? For example, have you been using a wig or a hat?) Social problems Incentive to work and how to approach work Job assistance, disclosure of the cancer diagnosis to family members and friends, and communication with family members How to cope with work When to return to work How to work and get married To what extent do we use social resources, such as the health insurance system and health support system Problems associated with return to work, including conflicts between the expectations of coworkers and my poor physical condition Relationships and communication How to disclose the cancer diagnosis to family members and friends; how specific should the explanation be Disclosure of the cancer diagnosis to family members and friends, and communication with family members Other Positive things patients have experienced from having cancer Delicious foods sold at convenience stores in NCCH Basically, I would like to have an open conversation I think there is no problem with how the sessions are currently conducted. I can discuss the topics that the other participants want to talk about. Changes in your life before and after the onset of cancer, including your way of thinking, values, and human relationships I would like to provide useful information to the other participants. | ||||
| Please write down your requests or suggestions for improvement with respect to Online AYA Hiroba, if applicable. | ||||
| Content I wish I had an opportunity to talk with other patients who have the same cancer as me. The advantage of an online program is that we can attend from anywhere. However, the Zoom session was more difficult than a face-to-face meeting for those like myself who are not familiar with using Zoom. I thought that it could be easier to talk with the other participants about some topics after disclosure of their disease, if they do not mind. I felt the meeting could have run more smoothly if we knew whether or not we could have a deeper conversation about our disease in advance. It would be better if the participants took turns speaking after choosing a specific topic. I have to work during the day on weekdays. If session are held after 6 p.m. on weekdays or on weekends, I would want to join more often. It would be better if we had more than 30 minutes. If you could increase the number of participants, I believe that it would be better to change the participants after half an hour by dividing the meeting into two halves. This will allow those who are busy to participate in the online program even for half an hour. Facilitation It would be better if the chair could not only facilitate the conversation but also provide sympathy or advice. The chair can facilitate discussions between the participants by presenting a topic. I think the method for conducting discussions is better today. It is not clear when we can speak in the online program. It would be easier to continue the discussion if the chair asks someone for an opinion when nobody is going to say anything about the topic. This will make the program more fun and productive. I think it was very good that the chair asked “How about you, Mr./Ms. 〇〇?” to facilitate discussion. Online connection environment I found it was easier to attend the online program. Thank you very much for your support. But I could not catch what some participants said due to poor signal quality and I felt sorry about that. This makes it difficult for us to communicate well with others online. If I was attending the program during hospitalization, I think it would be difficult to communicate due to the poor Wi-Fi signal quality. Please avoid microphone feedback between the facilitators. | ||||
| Please provide any other comments that you have about Online AYA Hiroba. | ||||
| Content It was a very fun meeting because the participants were all hospitalized or have been hospitalized. I was encouraged by the other participants who are coping with cancer in a different ward. I wish I could have a chance to talk with other AYA cancer patients with a similar type of cancer or treatment stage in the future. The word “cancer” refers to many various types. It seems that cancer patients should be able to easily understand each other, but I often think it is rather unexpectedly difficult. I have no idea what to expect of my future cancer treatment. I personally feel that I want to join a meeting of AYA sarcoma patients or patients who have cancer with a poor therapeutic effect in response to non-operative treatment. Please share useful information obtained from previous Online AYA Hiroba session with us. This may be difficult because you held a one-time session. I was able to bring myself to focus on the conversation because some patients told us the name of their disease during their self-introduction. Thank you very much. I want to be listened to firsthand by pharmaceutical companies or industrial physicians. I was impressed by what the participants discussed. I want to join subsequent sessions whenever possible. As mentioned during the session, I hope to have a meeting with hospitalized AYA patients. I was able to observe the changes in appearance or words and actions of the participants who had attended the previous sessions because I had participated in other sessions. I was not able to catch the name of the band that A said that he listens to while driving in the car, etc., in the self-introduction. If you know the name, please let me know. Thank you in advance for your kind support. There were more female participants than male participants in this meeting and I found it so easy to talk with them. Generally, males are not good at talking with others. I think we will have a more lively conversation when the attendance rate of females is higher. I think it is appropriate (i.e., not too small or large) to have a friendly conversation with five or six participants. Format I hope that you will continue to hold these sessions. I wish you could hold the sessions four times a month. This may be unrealistic but I think a 1-month interval is too long of a period to wait for the next session, if I missed the last one. If we have four chances in a month, there may be only few participants. On the other hand, we will have more chances to attend when we are in good shape after treatment. In addition, I hope we have some kind of matching system to facilitate communication with a specific participant directly, if desired. This system would allow us to develop a network and to lean on each other. Online connection environment There were three participants other than me and it was a very good opportunity for me to talk with other cancer patients. I wish that hospitalized participants could borrow a pocket Wi-Fi device with better signal quality because the Wi-Fi signal quality in the hospital was poor. Thank you for giving us this precious opportunity to attend today. I am sorry that I could not stay until the end because my smartphone battery was running low. Other It was a very productive program. Thank you very much for your support. Thank you very much! | ||||
NA, not applicable; NPS, Net Promoter Score; SD, standard deviation.