In March 2015, The Nippon Foundation and UNIQLO Co., Ltd., jointly announced the construction in Osaka of Japan’s first community-based children’s hospice, the TSURUMI Children’s Hospice, which will seek to provide “a place where children whose lives are at risk can enjoy just being children.” This article gives an overview of the hospice’s aims and philosophy, and of Children’s Hospice Project, the organization that will operate the hospice.
Japan’s first community-based hospice for children
A press conference to announce the construction of the TSURUMI Children’s Hospice was held on March 6, 2015, at the Osaka City General Hospital. Instead of operating as part of existing medical or social welfare service frameworks, the facility will support seriously ill children and their families in a local community, making this Japan’s first community-based hospice. At the press conference, Children’s Hospice Project (CHP), which will manage the hospice, gave a briefing on the organization’s history and its objectives, and a representative of Taisei Corporation, which will build the hospice, explained the design concept and presented an artist’s rendition of the completed facility.
One of the hospice’s important concepts is to create a place where children can “forget that they are sick.” Shingo Kunieda, a wheelchair tennis player and Paralympic medalist who overcame cancer as a child, attended the press conference and shared his experiences.
“When I completed the cancer treatment and returned to school, being with my friends made me able to forget that I was sick. I didn’t feel that fighting a disease or using a wheelchair was a hardship, and that is how I’ve led my life since then. I believe it is very important that this new hospice will allow children to ‘forget that they are sick.’”
Next, UNIQLO President Tadashi Yanai noted, “As globalization advances, we have also been looking at what is needed by local communities. As a private-sector company, we want to help in areas where the government cannot, and a children’s hospice is exactly that kind of project. I would like to cooperate as fully as possible in the project’s future development, and will also encourage UNIQLO employees to participate as volunteers.” The Nippon Foundation Chairman Yohei Sasakawa added, “I am now even more confident that this project will be a success, and I hope to build on this to develop children’s hospices across Japan.”
A place to create bonds among parents of seriously ill children
Hospice operator CHP has received support from The Nippon Foundation in the past, and has an established track record of activities for seriously ill children and their families.
On February 14, CHP held a one-day preschool event at a special needs school in Osaka for seriously ill children about to start first grade and their families, to enable the children to experience school life. With help from volunteers for children who are highly dependent on medical care, children enjoyed music while handling musical instruments and waving scarves in rhythm with the music. There was also a magic show for the children’s siblings, who enjoyed the lively atmosphere. Watching the children, their parents broke into smiles as well. On a usually quiet Saturday, the school building echoed with children’s laughter all day.
Children who rely on medical equipment in their daily lives, or who have an illness-related disability and cannot attend regular classes, attend special needs schools or special classes. Although a system to accommodate these children is in place, including school facilities and transport to and from school, their parents have a great deal of concern as the child gets ready to start school. This preschool event addressed those concerns by providing a place where these children and their parents could get to know one another. With support from volunteers with special training in nursing and preschool education, the parents were temporarily relieved of the stress from providing constant care 24 hours a day, 365 days a year. While the children were playing, a workshop was held for their parents and guardians with teachers from special needs schools and representatives of elementary, middle, and high school parents’ associations, to exchange information and allow the parents to prepare their children for school life and alleviate their concerns.
One of the mothers who participated said, “My older son is always quiet at home because he is concerned about his brother, so I was happy to see him enjoy playing today. I don’t have many chances to talk to other parents whose children go to a special needs school, and I was glad to be able to talk to these parents as I prepare to send my child.”
Energized mothers mean happy children
Hideki Takaba of CHP noted, “When mothers smile, their children become invigorated. That is why we want to provide a place that will make mothers smile.” In addition to this preschool event, CHP operates seasonal events to bring families together and has recreation specialists visit children at home, but as the name implies, the organization’s goal since it was founded in 2010 has been to build a children’s hospice in Japan. CHP’s activities to date have been for children who are able to go out with their families, or who can attend school if transportation is provided, but this hospice is meant to be used by children with life-threatening illnesses.
Mr. Takaba is also the father of a child battling an illness.
“One day during a gathering of parents with seriously ill children, out of the blue I heard doctors from the Osaka City General Hospital discussing a place in England where children with illnesses can play, study, and have a variety of experiences. Talking with the doctors, we realized that there were no facilities like that in Japan, and we decided to build one. That is how CHP was established.”
“In Japan, we have to do many things before my family can go out to eat, like making sure the restaurant can accommodate us and arranging for special transportation. I wanted a place where we could easily get together with other people, and the children would be able to play.”
Aiming for the ideal of having children of the same age share the same experiences
Mr. Takaba got this idea from the Helen & Douglas House in England, which opened in 1982 as the world’s first children’s hospice. Helen & Douglass House was founded by Sister Frances Dominica, after experiencing the hardships faced by a family who had a seriously ill young daughter named Helen. Bringing together doctors, nurses, and physical therapists, as well as specialists from various other fields including music and recreation, the facility allows children to live their lives in a way best suited to each child. Operating with funding from public insurance and private donations, families are able to spend two to three weeks per year at the facility at no charge. Terminally ill children also receive end-of-life care, but in addition, Helen & Douglas House is recognized as a place where ill children and their families can enjoy spending time in a relaxing environment.
Sister Frances visited Japan in 2009, when she met Mr. Takaba at a networking seminar. Her words at that time became CHP’s founding philosophy: “We will help children with life-threatening conditions and their families live life to its fullest. No matter what the illness, the important thing is for children of the same age to share the same experiences.”
Mr. Takaba shares his aspirations for TSURUMI Children’s Hospice:
“Families of seriously ill children tend to become isolated, and enjoy activities like the preschool event that increase their community involvement. It is especially difficult for children who have severe life-threatening illnesses to go outside, but these children and their families will be able to visit the hospice. I also believe this will become a place that creates bonds among these children and their families. I hope that through CHP’s activities, the time these children have lost to their illness in the past can be replaced with time spent having fun.”
Photographs by Kei Kodera, Seiya Kawamoto