This descriptive retrospective study examines and describes the course of the illness experience over time of invasive mechanical ventilator (IMV)-dependent patients with amyotrophic lateral sclerosis in Japan, with attention to the factors related to psychological well being (PWB). Data from 50 subjects was gathered through written surveys and semi-structured interviews.
Three distinct PWB trajectory patterns were observed over time periods beginning onset : “fall-rise,” “fall-rise-fall,” and “fall-remain low.” We found that factors predictive of PWB improvement or deterioration could be grouped into two broad categories : “factors related to illness, survival, and coping,” and “lifestyle-related factors.” The first category included “physical symptoms and disabilities,” “treatment,” “acceptance of the disease,” and second included “daily lifestyle,” “plans for the future,” “personal relationships,” “reasons for living.” The most fundamental reasons for deterioration in PWB were “mental and physical suffering caused by decline of physical function” and “internal conflict about IMV use.” The relief of physical pain related to IMV was the most important factor predictive of an initial improvement in PWB, while the two factors most predictive of ongoing improvements in PWB were “sources of joy” and “family support.” We hope an improved understanding of these factors may aid in informing caregivers and healthcare systems.
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