Creation of Care through Communication

The current ANS featured article is titled “Creation of Care Through Communication by Nurses, Welfare Workers, and Persons (Children) With Profound Intellectual Multiple Disabilities at a Day Care Center: Emancipation From the Japanese ‘Shame Culture‘” authored by Tomoni Sato, PhD, RN. Visit the ANS website to download the article at no charge! Here is a message from Dr. Sato about her work:

Persons with PIMD have difficulty communicating both verbally and nonverbally, and are susceptible to life-threatening situations. Therefore, these individuals have high medical dependency and require concentrated care. However, the uniquely Japanese tradition of “shame culture” constrains the lives and behaviors of persons with PIMD and their families.

Japan has a long cultural background of “shame culture” and thus Japanese parents have typically been more reluctant to let children with disabilities out in public. Japanese people place great value on obligations and repaying favors, and “shame” is an emotion that is evoked when one is unable to meet an obligation or return a favor. Japan also used to have a “family reign system,” in which a male succeeded the family genealogy, so the birth of a male child has traditionally been desired.

The family reign system was abolished in 1947, but the belief that the birth of a child with a disability disgraces the family has persisted. Against this backdrop of “shame culture” and the resultant tendency toward prejudice and discrimination, an increase was seen in the number of cases in which Japanese families refused to take their children with PIMD home from the hospital or infant care home. As a countermeasure, a policy was implemented to place children with PIMD in a facility for protection and ryoiku (treatment, childcare, and education). As a result, participation in society by persons with PIMD in Japan was delayed and has only been considered since the beginning of the 21st century. In 2010, the Japanese government created a system that aimed to support independence based on the principle of normalization, stipulated participation by persons with PIMD in social activities as equal members of society through self-selection and selfdetermination, and proceeded to introduce necessary laws.

In this study, care that emancipates persons with PIMD and their families from Japanese “shame culture” was identified using ethnographic research methods. Nurses and welfare staff at a day care facility provided coordinated care to address the medical needs of persons with PIMD and to promote their self-expression and autonomy. This result should be of interest to a broad readership, particularly researchers and practitioners in the field of palliative care. This research provides insight into ways to support persons with PIMD and their families to emancipate them from Japanese “shame culture” and enable their autonomy.