Abstract
ALS has become a tragic condition of dying from respiratory muscle paralysis. Despite medical advances in the 1980's and the new ALS view being proposed to include a passage after paralysis, only 30 percent of people in need use TPPV beyond paralysis. This study aims to understand the lives and experiences of ALS patients without TPPV and their families, comparing them with TPPV. Interviews with 5 bereaved families with TPPV and 13 without TPPV were carried out. Analyses were made using the Life Structure Theory and the Resources of Livelihood frameworks. 4 Findings were discovered: identity affected the use of social systems; the suitable period and volume of information differed by each life strategy; identity did not collapse completely. Although the choice of whether to use TPPV was a life-threatening one, this depended on the difference of the effect of respiratory muscle paralysis; no supporting system existed for the Resource-Keepers of Livelihood from outside. Challenges at present are to promote a constant use of services, secure information and assist the Resource-Keepers of Livelihood. Hereafter, a need for standardization of Resources of Livelihood and intervention in maintaining diversity of life will be presented as a way to make improvements.
