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Wednesday, Feb. 7, 2001
Help arrives for families with ill children
Complete care facilities offer comfort, counseling, affordable lodging
By ERIKO ARITA
A facility to provide a place to stay and counseling for families with children who require long-term medical treatment far from home will open Friday in Tokyo.
AFLAC Parents House, where such families can obtain comprehensive support, including reasonable accommodations, counseling and moral support, is considered the first comprehensive facility of its kind in Japan.
"For more than three decades, I have longed for such a total care facility for families with sick children, since I established an association for children with cancer and their parents," said Keiji Iwata, president and one of the founders of the Children's Cancer Association of Japan.
When a child is diagnosed with cancer or some other serious disease, Iwata said, it is at first shocking to the parents. Afterward, not only do they have to worry about their sick child, but if they live far from the hospital where their child is being treated, they also must worry about the cost of staying close to their child during long-term treatment.
The house, located near JR Kameido Station in Tokyo's Koto Ward, is a joint project by American Family Life Assurance Co. of Columbus and the Children's Cancer Association. The association, formed in 1968 by parents whose children died of cancer, was created to help seek better cancer treatment and to improve the quality of life of children with the disease and their families.
The eight-floor building has 17 Western-style rooms, three Japanese-style rooms, a large kitchen and dining area, a consultation room, a seminar room and a library. All the rooms include a bathroom, refrigerator and TV. The Japanese-style rooms have a small kitchen and another room accessible by wheelchair. An overnight stay costs 1,000 yen, including utilities.
While there are hospitals located across Japan capable of treating serious diseases, many parents want their kids to receive advanced treatment in metropolitan areas. According to the National Cancer Center in Tokyo's Chuo Ward, about 70 percent of parents whose children have cancer said they needed places to stay last year.
Mutsuro Ohira, a pediatrician at the National Cancer Center, said kids with acute leukemia need to be hospitalized for a year on average.
Many young rural parents cannot afford lodging or frequent trips to the city. According to Family House, a nonprofit organization that helps such families arrange accommodations in Tokyo, some parents have no choice other than to sleep in their car or on the floor of their child's hospital room.
Although doctors' fees for treating children with cancer have been effectively covered by the state and local governments since 1971, parents often have to shoulder other costs, including extra hospital room charges.
When cancer patients take anticancer drugs, they become vulnerable to infectious diseases, thus requiring a single room to minimize their exposure to germs. Some hospitals charge patients between 5,000 yen and 30,000 yen per day for a single room.
More than room and board
In addition to accommodation, social workers at AFLAC Parents House offer consultation on a variety of problems every day.
Counseling services, which are not always available at the 79 other facilities nationwide run by volunteer groups to provide reasonable accommodations for families with sick children, are helpful for such parents because they often bear enormous psychological burdens, Iwata said.
"I think what is most important is that we can offer a place where families can ask for help," said Hiroko Kondo, a social worker at Parents House, adding that it is significant that the house has a room where parents can talk to a social worker privately.
Ohira of the National Cancer Center, who is also one of the trustees of the Children's Cancer Association, emphasizes that such counseling helps parents maintain their mental health.
"If mothers can feel relaxed in such places, they can come to the hospital to see their children with a smile," Ohira said. "Sick children are influenced by the feelings of their parents. Therefore, the smiles of mothers make children feel more positive."
Mieko Okano, a member of the association and the mother of a 9-year-old girl with a brain tumor, said after visiting the house, "I think families who stay here can feel at home and forget the tough time they have at the hospital.
"It is also very helpful to have such a place where families can talk and share concerns. That is what I wish I had," she added.
When her daughter was 2, her tumor was discovered and she was hospitalized for 11/2 years in Kochi Prefecture. Spending every day with her daughter in the hospital, Okano often became depressed but had nowhere to talk about her anxieties, she said, adding that the girl is now an outpatient at a Tokyo hospital.
The construction of Parents House was jointly financed by AFLAC, which contributed 360 million yen, and the Health, Labor and Welfare Ministry, which put up 188 million yen in subsidies.
"To get the subsidies, I repeatedly petitioned officials at the ministry, explaining the need for the house," Iwata said.
After financing for the project was secured, Iwata and an architect visited an AFLAC total care center in Atlanta to learn the specific functions of a comprehensive support facility.
Cheerful, positive push
AFLAC Parents House was designed to provide a sense of warmth so families can remain cheerful and positive. Each of the eight floors is decorated in colors reflecting the four seasons. The 40-odd paintings on the walls that depict natural scenes were donated by students from the Women's College of Fine Arts in Tokyo.
A spacious common kitchen and dining room face a playroom so parents can keep an eye on their kids while cooking. When a hospitalized child is permitted to leave the hospital overnight, their parents and siblings can stay with them in a large Japanese-style room for four people. It is also possible for a child with a terminal disease to stay there with their family, so they can spend their final days together in a homelike atmosphere, Iwata said.
According to his association, approximately 100,000 children in Japan presently suffer from chronic diseases and of the total about 24,000 suffer from cancer. Cancer claims about 800 kids a year, the most of any disease afflicting children.
As there is not enough accommodation available for families of sick children, some corporations have recently joined citizens' efforts to address this problem.
In Saitama Prefecture, pharmaceutical firm Nippon Kayaku Co. established a family house in 1998. In Sapporo, Hokkaido Electric Power Co. will start work in October on a family house consisting of eight rooms and other facilities close to Hokkaido University Hospital.
In the United States, McDonald Co. pioneered the home-away-from-home concept in 1974.
So far, 213 Ronald McDonald Houses have been built in 20 countries. In November, one will open in Tokyo's Setagaya Ward, Japan's first.
Due to increasing requests from citizens' groups, the Health Ministry subsidized construction of 32 facilities for families with hospitalized kids, including AFLAC Parents House, for the first time in fiscal 1998.
For reservations and other information, contact AFLAC Parents House weekdays from 10 a.m. to 4 p.m. at (03) 3638-6512.