2021 Volume 30 Pages 9-16
This paper focuses on parents who have lost children who required medical care due to severe motor and intellectual disabilities (SMID). The study aims are (a) to clarify parents’ experiences through talking with each family member about how they viewed and spent their daily lives, from the time they lived with their children at home, to after their death, and (b) to consider the ideal forms of support and assistance. Semi-structured interviews were conducted with parents of children with SMID who were primarily treated at one pediatric hospital in eastern Japan, and had passed away before the age of 20 after spending more than one year at home while receiving medical care. In the interviews, we mostly asked about the circumstances of their children’s bereavement, their life from the loss to present, their lives spent with their children while they were at home, and their thoughts and feelings regarding their children. Their responses were analyzed based on Giorgi’s phenomenological approach. Despite exposure to events that would be expected to cause a prolonged state of grief, participants proactively confronted their sorrow of having lost their child and experienced re-tightening of their bonds with their children in a new way. This form of strength appeared to be based on a high degree of resilience developed through the time spent at home with their children, as well as the solid relationships built during that period.
