Nurses who provides ongoing support for persons with severe disabilities

My work experience at the Biwako Gakuen provides me with opportunities to conduct research on the historical background of facilities for persons with severe motor and intellectual disabilities (SMID) and nurses who work there. Persons who have had SMID since childhood stay at such facilities. Most of the people who meet such persons wonder how to talk to them because of the severity of their disabilities. Facilities for persons with SMID are facilities for users from the viewpoint of the Child Welfare Act, and are hospitals from the viewpoint of the Medical Service Act. However, many medical staff have never met persons with SMID and there has been a shortage of nurses for half a century at such facilities. Small number of nurses obtain employment at such facilities and many of them leave there soon after they obtain employment. On the other hand, some nurses have worked for such facilities for a long time. Therefore, my research question is where such differences come from. And I published a book titled Nursing care in daily life: Providing ongoing support for persons with severe disabilities based on my doctoral dissertation submitted to the Graduate School of Core Ethics and Frontier Sciences of Ritsumeikan University. The book deals with why facilities for persons with SMID have been operated under two different laws and contradictions between entrance criteria and actual users. The book also analyzes the narratives of nurses who obtained employment at such facilities between 1970s and 2009 in relation to the historical/legal background of persons with SMID.

Facilities for persons with SMID require not only hospital staff stipulated in the Medical Service Act but also welfare staff including nursery staff. It is stipulated that personnel distribution at such facilities must have both welfare staff and nursery staff for users. Such facilities are different from hospitals in that:

Providing nursing care for persons with SMID in daily life is to support their living in collaboration with welfare staff. First and second generation nurses, who obtained employment at such facilities until 1980s, regarded this as delightful. On the other hand, third generation nurses, who have received education which focused on specialization of medical care, have felt fluctuation of their professional identity. However, with authorization and support from their senior staff and bosses, they accepted such nursing care in daily life as it was. This is the redefinition of nursing and nurses who have kept working for such facilities have experienced the redefinition of nursing at a certain point of their career.

When we look back at the history of facilities for persons with SMID, there have been both contradictions that facilities have been considered as hospitals and issues regarding the pros and cons that persons with SMID enter such facilities. However, many lives of persons with SMID, who were once considered not to be able to live until 20 years old, have been saved and many initiatives have been implemented to provide them with the same experiences as able-bodied persons. Persons who entered such facilities in 1960s have become older and older and their degrees of disabilities have become more and more severe. With the increasing number of children who are born prematurely, and severe motor and intellectual disabilities and medical care dependent groups (SMID-MCDG) who always require artificial ventilators and sputum suction, the necessity of providing medical and/or nursing care in a community has increased recently. It depends on professional staff regarding how persons with SMID can live. The way of support through multiple collaboration, which has been developed in the long history of facilities for persons with SMID, is considered to provide a clue that persons live in places where they would like to live in the future society. My current research challenge is how I can utilize it to community support.

KUBOTA Yoshie (Kyoto College of Nursing)