**4.1 Introduction to the National Sanatorium Oshima Seisho-en, where the survivors who have shared their life review live**

A national sanatorium, Oshima Seisho-en was established under the Leprosy Prevention Law (Act No. 11 of 1907; 癩予防二関スル件) and it has 110 years of history. Oshima island is in Seto inland sea, and one can get there on a ship. The distance from the nearest harbor in the mainland is 8 km. Oshima is a small scenic island with a total area of seven kilometers, and has a mild climate. The island is seven kilometers. The number of residents recorded during the war was about 740. As of August 2019, the number of residents is 52, the average age is 84.3, and the length of stay of these residents is 57.6 years. After the abolition of the Leprosy Prevention Law, many people have visited the sanatorium to learn about human rights, and some foreigners visit the island during the Setouchi Triennale. See **Figures 6** and **7(a)** and **(b)**.

#### **4.2 The life review book of Hansen's disease survivors**

We published a life review book about 19 Hansen's disease survivors living at Oshima Seisho-en [6]. From chapter 2 to 20, each chapter describes the experiences of one person. Each survivor talks about their childhood before having Hansen's disease, the shock and suffering that followed the diagnosis, till the time that they entered the sanatorium, discrimination and exclusion in their hometown, the parents affection and worry to protect them, inconvenience faced by their brothers and sisters, various symptoms and cures, the bad experiences in the sanatorium, romantic alliances, support from friends at the sanatorium, fighting against the government, current feelings and thoughts in their old age. The subject of the book is summarized as "Deeply Deeply Closing Our Eyes in Order to See What We Truly Should See," which is the subtitle of the book and has been penned by poet Ms. Yoshiko Takagi.

The significance of the book is discussed in the following eight points. (1) Negative history about medical care and administration at the sanatoria has been mentioned from the perspective of the survivors as a subjective experience, therefore, their narration is important as a primary resource to share the history of the disease with later generations. (2) When the principles of medical ethics including, respect for autonomy, beneficence, non-maleficence, justice and/or equality, were violated, what happened? The reality is shared. (3) Discrimination and exclusion against diseases with stigma in not just limited to Hansen's disease. If there is an outbreak of an unknown or lethal infectious disease (ex. Ebola hemorrhagic fever) in future, these experiences will become the lessons to ensure that the mistakes are not repeated again. (4) Their narratives hold value for ethnology, for example, the 88-temple Shikoku pilgrimage accepted wandering lepers and handed them secret medicines from the major Buddhist Kobo Daishi (774–835), and the discrimination and customs of the neighborhood groups in the agricultural society. (5) Their accounts give an insight about the wisdom and strength that made them overcome terrible hardships, and the clear vision that made them accept their life positively. This wisdom and strength has universal value for all human beings and is also

**Figure 6.** *Hansen's disease sanatoria nationwide.*

#### **Figure 7.**

*(a) View of the entirety of the Ōshima Seishoen (in the background are Yashima and Takamatsu harbor); and (b) view of Ōshima Seishoen.*

useful for people who are currently suffering. (6) The nurses at the sanatorium were the listeners of their life review. This book has also recorded the nursing practices. This interaction also increased the ability of the nurses to listen, empathize, understand, and deepen the relationship between them and the survivors. Through this, the nurses also got the opportunity to care for the survivors who do not have their own children. (7) The book was made by using qualitative and inductive methods in order to arrange the composition and express it in a narrative tone, therefore even elementary students can read it to learn about human rights. (8) New patients of Hansen's disease have been found only in developing countries like India, Brazil, and Indonesia. They account for about 80% of the total patients. The developed countries are not concerned about the disease. We hope that by increasing the awareness in developed countries, through the stories of the survivors, the wisdom and strength for solving problems in future will be shared.

**245**

*Spirituality and Hansen's Disease: Spirituality' Conceptual Structure and Hansen's Disease…*

In the second report, we introduce Mr. Takahisa Yamamoto's life review which clearly defines spiritual pain and shows the result of an analysis of questions such as why does a person experience spiritual pain, what is the identified nature of

This study comprises the first report and the second report. In the first report, we describe the conceptual structure of spirituality, the relationship of spirituality and QOL, and the history of Hansen's disease. Spirituality was developed as a part of the studies relating to terminal cancer patients who must confront their own death. When our daily lives are calm and mundane, we do not notice spirituality. However, when we confront hardships of life, for example, when we are exposed to the dangers of life, we notice spirituality as an existential distress. On the other hand, the development of individuality and imperturbability by overcoming hardship is spiritual well-being. Spirituality serves as the existential foundation for human existence and is important for the relationship with "something greater than self." In common understanding, QOL is evaluated not objectively but subjectively, and not as a single dimension but as multiple dimensions. Spiritual well-being is one

In the second report, we will show the spiritual pain and spiritual well-being of Hansen's disease survivors who have lived harsh lives via an analysis of their life

This work was supported by JSPS KAKENHI Grant Number 18H03075. We would like to thank Editage (www.editage.com) for English language editing.

review based on the findings of spirituality and QOL from the first report.

*DOI: http://dx.doi.org/10.5772/intechopen.92243*

**5. Conclusion**

of multiple dimensions of QOL.

**Acknowledgements**

**Conflict of interest**

We have no financial relationships to disclose.

spiritual pain, and how can one recover from spiritual pain.

*Spirituality and Hansen's Disease: Spirituality' Conceptual Structure and Hansen's Disease… DOI: http://dx.doi.org/10.5772/intechopen.92243*

In the second report, we introduce Mr. Takahisa Yamamoto's life review which clearly defines spiritual pain and shows the result of an analysis of questions such as why does a person experience spiritual pain, what is the identified nature of spiritual pain, and how can one recover from spiritual pain.
