Message from Yachiyo Eguchi, Chairman of Certified Nonprofit Organization Family House
Empowering the Valued ‘Usual Life’ During Health Struggles
More than 30 years have passed since Family House, a certified non-profit organization (hereinafter referred to as “Family House” as an organization and “House” as a facility) was established in 1991. We operate a facility in Tokyo where children and their families who come from remote areas to receive specialized treatment for childhood cancer and other intractable diseases can stay near a hospital with little financial burden, and where the families can exchange information and support each other. We support the “usual life” of sick children and their families, which is important when they are sick.
The impetus for our activities came from the earnest voices of families whose children were hospitalized at the National Cancer Center Hospital, where I worked as a head nurse. The results showed that in addition to the emotional burden of not knowing how long their child would remain in the hospital, the anxiety of not knowing how long their child would remain in the hospital, visiting their child during hospitalization, building relationships with medical personnel and other parents, worrying about family and children left behind in the area, and the loneliness of spending the night alone, there was the financial burden of living two lives, one in Tokyo and one at home. The survey results clearly indicated the need for a safe, secure, and inexpensive place to stay where people can focus on taking care of their children during hospitalization. The Family House activities are unique in that they began as a citizens’ movement involving “families + understanding citizens + medical personnel,” and I believe this is a major strength that has allowed them to continue to the present day.
The operation of the Family House is entirely funded by donations. Donations from individuals and companies, donations of goods, proceeds from bazaars and charity concerts, and grants are the main sources of funding. The operation of the House would not be possible without the support of volunteers. There are regular activities by individuals who are a major force behind the House, as well as activities by corporations as part of their social contribution.
When we started our activities in 1991, we began to receive inquiries from all over the country asking us to build Houses. 1990s, this activity began to expand nationwide, and the number of Houses grew and the need for more Houses became apparent. Since 1997, we have been holding the National Network of Residential Facilities Management Conference once a year. The Family House serves as the secretariat and works loosely together to exchange information and improve the quality of facility management.
Thirty years have passed since the Family House activities began. During this time, the environment surrounding the House has changed. Advances in medical care, shorter hospital stays, and other changes in medical care and policy have made the needs of the House more sophisticated and diverse. Sick children are now staying at the House for follow-up care after short-term hospitalization while staying at the House, or receiving treatment on an outpatient basis. The number of cases requiring medical attention is increasing. We are working with hospitals to ensure safety and security so that we can respond to the needs of each individual.
From the beginning, the Family House has been an unprecedented activity, and we have done many things to gain understanding and cooperation for our activities. We have verbalized the roles and expertise of our activities. We have compiled competencies for house operators and have summarized the expertise of family houses from the concept of community care. The Corona Disaster was the catalyst for us to verbalize our previous activities and summarize them as a manual for accepting children and a manual focusing on infectious diseases.
And now, in order to respond to the individuality and diversity of the needs of our users, we are working to realize the “ideal house,” drawing on our 30 years of experience. The starting point of this activity is to support the families who use the service so that they can stay with peace of mind. The family members are not to be supported one way or the other, but to be supported so that they can be empowered by each other’s actions. We will continue to consider and practice support centering on sick children together with their families, while keeping an eye on the social situation.
Your understanding and cooperation will be greatly appreciated.