Training highly specialized nurses for intractable disease nursing

Abstract

Intractable disease nursing is an approach that supports the reconstruction of life/life planning and maintains and/or improves the quality of life (QOL) in response to the worsening of a treatment. In other words, it supports “living with a disease that cannot be cured.” Intractable diseases are rare and their symptoms are highly individualized which makes it difficult to accumulate support experience. In anticipation of the enactment of the Act on Medical Care for Patients with Intractable Diseases, along with the support of the Ministry of Health, Labour and Welfare's research team and the hospitals involved, momentum grew to train specialists in intractable disease nursing. In 2013, the Japan Intractable Illness Nursing Society established a system for nurses certified by the Society.

As of 2020, there are 433 intractable disease certified nurses (first to eighth certified nurses by the Society), of which 320 (73.0%) work in hospitals, 94 (21.7%) in visiting nurses, and 19 (4.3%) in other facilities. The nurses per regions were : 98 in Hokkaido/Tohoku (22.6%), 138 in Kanto (31.8%), 66 in Hokuriku/Chubu (15.2%), 55 in Kinki (12.7%), 23 in Chugoku/Shikoku (5.3%), and 62 in Kyushu/Okinawa (14.3%).

The results of the survey suggested that intractable disease certified nurses were active as “information hubs” for intractable diseases within their respective affiliations, but it was difficult for them to generate activity time due to lack of recognition. This indicated the importance of improving the environment. In Japan, specialization of intractable disease nursing has been cultivated through a unique system of supporting intractable diseases, and is characterized by the pursuit of common knowledge based on intractable disease nursing rather than on a disease basis. One of the appeals of intractable disease nursing is that it is closely related to systems and policies and responds to social situations. The authors hope that the nurses who carry and play the role of an escort runner of the medical treatment will increase.