When Maya Crahe-Sato had to sleep at her son's bedside in a children's hospital near Tokyo, a makeshift cot offered to her was so thin that her French husband described it as like lying on the grates of a barbecue grill.

After her son Leon was found in 2017 to have developed neuroblastoma, a type of cancer, at the age of 4, he was hospitalized in Belgium, France and Japan for treatment, with Crahe-Sato, now 45, remaining by his side often during each stay.

Leon Crahe-Sato poses with a dog at a hospital in Tokyo in October 2021. (Photo courtesy of Maya Crahe-Sato)(Kyodo)

Crahe-Sato wanted to stay with her child at Japanese hospitals to provide emotional support, but she experienced "culture shock" due to the markedly different approach, not to mention the meager accommodations, compared with overseas medical facilities.

In some cases, the Japanese hospitals did not welcome her presence. She says often parents are never even given a choice of whether or not to stay with their child at a hospital.

"First, I was surprised that I was not given a choice to accompany my son or not," Crahe-Sato said. The Japanese hospitals would not even allow her to eat with her son, citing "sanitary reasons," which was not the case in Belgium and France, she says.

"At one hospital in Tokyo, I even felt as if I was not supposed to be there. Staff said they would take care of my son, 'so please don't worry,' but I never felt reassured after seeing unattended crying babies at hospitals that were short-staffed," she said.

In other cases in Japan, parents are often asked by hospitals to attend to their children's daily requirements, and sometimes even asked to take on jobs that are normally reserved for hospital staff, a recent survey by Keep Moms Smiling, a nonprofit organization, showed.

All hospital expenses are covered by medical service fees, meaning parents should not be expected to assist in the care of their hospitalized children, but they are still allowed to stay on if doctors approve, according to the health ministry.

In the survey of around 3,600 parents who have stayed with hospitalized children in the past five years across Japan, 79 percent said hospitals "requested" they accompany their children, the NPO said. It also showed that 71 percent of the respondents were required to accompany their children, whether they wished to or not. This is despite the cost of their entire treatment being fully covered.

Although parents are technically banned from carrying out nursing duties, around 80 percent of respondents said they bathed their children and helped them take medication, while some were even engaged in medical care such as monitoring a ventilator or injecting insulin.

As many parents were unable to sleep or rest sufficiently due to poor facilities and were often forced to skip meals, half of the respondents said their health deteriorated while staying with their hospitalized children, the online survey conducted in November and December last year showed.

In June, the group demanded the government improve conditions for parents who are accompanying their hospitalized children and set up a study panel to address the issue. The government says it will conduct a survey on hospitals to ascertain the situation.

Photo taken on Aug. 2, 2023, in Tokyo shows Yuki Mitsuhara, chief of nonprofit organization Keep Moms Smiling. (Kyodo)

Yuki Mitsuhara, who heads the group, said the problem has been neglected for a long time, as issues related to parents are not prioritized at the health ministry despite the load they are required to bear.

"Parents have not had a chance to raise their voices," Mitsuhara said. "Many parents never questioned the hardships they face because everyone thought it was natural for them to do their best for their children."

Hospitals also face a conflict of interest as parents have become an "important workforce" although they are not supposed to be enlisted to care for their hospitalized children, making it challenging for hospitals to improve conditions for families, Mitsuhara said.

But the group says the solution is not for parents to stop accompanying their children, pointing to a standard-setting charter that protects children's right to be with their parents advocated in 1988 by the European Association for Children in Hospital, an international group seeking to improve the situation for ill children.

"Parents shouldn't be deprived of everything," said Chizuru Watanabe, director of the group that conducted the survey. "Many (parents) want to take care of their children, as providing mental and physical care can help them feel at ease."

But Watanabe said experts must draw the line on the types of care that should be left to medical staff and what should be entrusted to parents.

Hiroko Umeda, an associate professor at Hiroshima International University specializing in pediatric nursing, said parents should be given a choice on whether to accompany their hospitalized children, due to their varying circumstances, including work commitments.

"If parents cannot accompany their children, hospitals need to prepare an environment where children can feel safe and are taken care of by someone who can act as another parental figure," she said.

Umeda said the NPO's survey was "very significant" as it shed light on the important roles of parents, whose health greatly impacts their own children's development.

Leon Crahe-Sato (L, front row) celebrates his birthday with his mother Maya (front row) at a hospital in France in September 2018. (Photo courtesy of Maya Crahe-Sato)(Kyodo)

When Crahe-Sato stayed with Leon at a French hospital, she said she was impressed by the hospitality as she was provided with a daily free breakfast and could even get a facial massage and haircut free of charge.

The hospital also provided her and her son counseling during his hospital stay, as parents were incorporated into their children's treatment program, she said.

"When my son was hospitalized, he told me to 'smile,' as I was probably showing a sad face feeling very sorry for him because of the disease," Crahe-Sato said. Tragically, Leon died last May at the age of 9.

"It is so hard for children if their parents look tired or frustrated," Crahe-Sato said. "I want hospitals to create an atmosphere that will make us feel it is okay to rest and relax."

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