I felt very stressed because I was forced to make major changes in both my personal and professional life, but I heard from an expert that the most important thing is to lead a regular life, and I gradually regained my stress by being conscious of it and practicing it.
Mr. Ikezaki
I felt stressed because of the drastic change in my life, but I checked my physical condition by doing radio calisthenics every day.
The connections I had made before Corona through SNS were very important (emotional support).
What online tools do you use?
Mr. Matsumoto
Use of Zoom
Mr. Ikezaki
Zoom is used for meetings, and LINE is used for day-to-day light communication.
Google Docs and Google Drive are used for documents
If you are not familiar with Zoom and find it difficult, you can also experience video calls with multiple people by using LINE or Facebook messenger video calls
Introduction to actual online activities
Mr. Matsumoto
Conducting social events and seminars
Provided an original Zoom beginner's manual for those who are not comfortable using Zoom
Invited doctors to an online social event and had them play their specialty, guitar
Mr. Ikezaki
In addition to presentations by the people involved, we also provided casual content on YouTube, such as information on intractable diseases and book recommendations, etc. Although YouTube distribution loses some of the benefits of social gatherings, such as interactivity, it has the advantage of being available anytime, anywhere.
The social event was held using an application called SpatialChat. You can move your icon and hear the person you are talking to when you are close to them, and when you move away, you cannot hear them. It feels good, like being in a real café.
Testimonials from online event participants
Mr. Matsumoto
People who felt lonely told us that the online exchange meetings helped them feel connected.
We even heard from a person over 80 years old who said, "This was my first time trying online, and it was great to try it"!
Mr. Ikezaki
A person who is unable to go outside said, "I was glad to feel connected even from the chair or bed in my room."
People who had been unable to attend lectures and social events due to distance or physical limitations said that they were able to participate in online social events.
Tips that can be applied to online activities
Mr. Matsumoto
The National Federation of Cancer Patients' Organizations, to which Oreno-no-kai belongs, has created a "Guide to Online Peer Support Considerations (July 23, 2020 edition)" and posted it on its website.
Mr. Ikezaki
Making it easier for more people to participate by being flexible, for example, not fixing the time, day, or online tools to be used.
Considerations for those who participate in online events
Mr. Ikezaki
We are careful about security; we always put a password when entering Zoom, etc.
Send the entrance (URL) necessary to join Zoom only to those who sign up, rather than posting it on the website, etc.
When the Internet connection is disconnected, you feel psychologically cut off. At such times, I try to secure another means of immediate contact, such as a phone call or e-mail.
Some people have difficulty speaking up or speaking out, so we accept questions via chat (text input function).
Mr. Matsumoto
The importance of security is exactly the same idea.
In order for participants to feel comfortable talking with each other, we ask that their faces be visible.
In the setting where faces are not shown, only names and nicknames are displayed, which makes participants feel uneasy because they do not know who they are conversing with. However, there are times when participants do not want their faces to be shown due to illness or other reasons, so we ask them to contact us in advance.
We inform them in advance that we do not allow them to take screen shots, record, or post the content of the conversation on social networking sites. Otherwise, people may take a screenshot of the screen and immediately post it on social networking sites.
Online interactions can be difficult to follow, and sometimes comments can overlap. It is also very important for the facilitator to coordinate the event well, as it is easy for one person to talk for too long.
Considerations for those who cannot participate in online events
Mr. Matsumoto
For those who have difficulty with online communication, we have tried to include a letter asking about their condition and physical condition when we send out meeting invitations, etc., so that they can be as interested in the meeting as possible. We try to see the connection.
Challenges of running a patient group in the Corona Disaster
Mr. Matsumoto
In the future, there may be more and more people who have difficulty paying membership fees.
Donations from various companies and organizations have been a major source of income, but we fear that this may become more difficult depending on the business conditions of each company or organization.
On the other hand, local governments have a subsidy system for NPOs, and we are in the process of making various efforts to continue our activities.
Mr. Ikezaki
As an unincorporated voluntary organization, we are not eligible to apply for many grants, so we are still in the process of exploring our future activities.
Recently, there are some grants that specialize in online equipment (cameras, microphones, etc.), so if your organization is having trouble, you may want to take advantage of them.
The importance of real events
Mr. Matsumoto
When we started our patient group activities, our message has been "you are not alone. Many people have said that they have felt connected online, but I still think that feeling the warmth of a real person, having someone next to you, and feeling that you are not alone, are hard to achieve online.
Another thing that is fundamental to our activities is to accept feelings that cannot be expressed in words. Online, even if someone is crying because they are sad, you can talk to them, but you cannot express what you want to say because you are looking through a screen, and it is difficult to know if your feelings are understood.
We convey the feelings that cannot be expressed in words. I believe that it is only in real life that we are there to listen to them with them.
Mr. Ikezaki
I feel that online connections are too perfunctory. We rent out a rental space in the city of Fukuoka and hold cafes and other events for people with intractable diseases, and just by having people pass by and say, "Oh, what is this? This is the embodiment of a symbiotic society and a new connection that does not divide. This kind of connection is not possible online, so I think this is a challenge for the future.
Message to everyone - What we can do now
Mr. Ikezaki
I would first like to express my respect for the fact that you are doing your best in a state of exploration. I hope that we can continue to work together to share the experience we have accumulated in patient group activities related to the coronary disease, so that no one is left behind.
Mr. Matsumoto
I believe that the real purpose of patient group activities is to make people realize that they are not alone. What is the starting point of each organization's activities? What was the ultimate goal they wanted to achieve? Because of this situation, I remind myself that it is important not to get swept up in thinking about the means and lose sight of the most important objective. Let's work hard together.
