Introduction

About 10 years ago, it was said that perinatal loss care in Japan was 30 years behind the West. Parents and families who lost their baby could not receive appropriate support in the hospital or in their community during their difficult season of grief. In 2003, I came to a self-help group and began working with them as staff. Listening to many mothers there, I arrived at the painful understanding that the care we provide as nursing professionals does not match the care desired by those living this experience.
The goal of this research society is for perinatal loss care in Japan to meet the needs of those living this experience. We seek to listen to their real stories, and our motto is to come alongside and walk with them. We are approaching this research from the perspectives of midwifery, nursing, and psychology.
Since establishing this research society in 2005, we have undertaken research to hear the stories of those who experienced perinatal loss to clarify their situations and care needs, and research to clarify the difficulties encountered in care given by nursing professionals. Based on these, we then developed booklets and kits needed for care, developed education programs for the medical community, and performed research to evaluate these.
Also, each member of the research society has an individual research topic, approaching perinatal loss from a variety of angles. This research is steadily yielding results, which are now being applied in actual practice.
The research society will continue to support bereaved parents and families through hands-on grief care activities; study programs to educate the medical community; and disseminating information by publishing our research findings.
It is our desire to see this research society develop step by step, working with those with perinatal loss research experience, clinical workers, and those who have experienced perinatal loss.

Naoko Ota, Principal

Background of the Japan Society for Perinatal Loss Research

　The very first meeting of the "Guardian Angel St. Luke's Society" was held in September 2004 at the St. Luke's College of Nursing Research Center for Development of Nursing Practice. It was started by Naoko Ota, who was a graduate student at the time, Keiko Ishii of the Kanto chapter of "With the Angels in the Sky (WAIS)", Nagisa Miyamoto, who was a nursing student, and myself, Shigeko Horiuchi. The pamphlet described it as "a self-help group attempting to provide emotional care for persons who lost their child near childbirth, due to miscarriage, stillbirth, or any other reason, in the context of those with similar experiences relating to each other."

We wanted to provide a place for talking about their child with no hesitations, and a place to talk about and share their grief for their loss and the difficulty of human relationships. As of the spring of 2012, over 600 people have come together in eight years. Mothers who initially participated with closed expressions on their faces would soften over time. Watching them work on making quilts as presents to their children often left us amazed at how powerful human recovery and growth can be.

However, it was also sad to hear of care that lacked understanding and consideration, and of experiences that laid a burden on their shoulders. It became our strong desire to see a much wider availability of the type of care desired by bereaved parents and families, and to improve the current situation. The activities of this "Guardian Angels St. Luke's Society" became the starting point for many graduate students in nursing and psychology to write their graduate theses. This Japan Society for Perinatal Loss Research was established based on the desire for even more people to participate in education and research activities regarding perinatal loss.

Looking back over these eight years, care has significantly improved, and research has picked up enough speed to produce a textbook chapter. The scope of research will continue to expand, including researching mothers experiencing perinatal loss, researching fathers experiencing the same, researching ties to the lost child and the family, difficulties faced by medical professionals, effective educational programs for medical professionals, support from a sociological perspective, and psychological approaches.

It is my sincere hope that this will become a forum where researchers and educators interested in perinatal loss will gather for academic, practical, and philosophical discussion, and for sharing their wisdom.

Shigeko Horiuchi, Advisor