Abstract
Purpose: To use the life-line interview method to ascertain the life experiences of patients with amyotrophic lateral sclerosis (ALS) on tracheostomy positive pressure ventilation (TPPV) and to study psychological changes and related factors over a 14-year period that included the COVID-19 pandemic.
Methods: The current survey was conducted 14 years after the previous survey. Semi-structured interviews were conducted with and a questionnaire was administered to 3 patients with ALS on TPPV who consented to participate in this survey.
Results: The psychological state of 2 participants has improved, but the psychological state of 1 participant has worsened. Compared to the participants whose psychological state improved, the participant whose psychological state worsened had generally worse subjective physical symptoms and diminished hope, fewer people providing psychological support and fewer joys, and a lower percentage of factors for acquiring resilience. Descriptions of factors for worsening or improvement of one’s psychological state were grouped into 5 domains and 12 categories. The main domain was Physical Symptoms and Impairments, and the remaining domains were Adaptation to the Disease, Interpersonal Aspects, Aspects of Life, and The COVID-19 Pandemic. Categories in The COVID-19 Pandemic domain were found to be related to categories in the Interpersonal Aspects and Aspects of Life domains, and creation of a care system under normal circumstances and building interpersonal relationships were extremely important.
Conclusion: Few studies have been conducted to ascertain the life experiences of patients with ALS from a long-term perspective. The current study revealed the long-term life experiences of patients with severe ALS on TPPV, including during the COVID-19 pandemic. In the context of limited prior research, this study was able to elucidate certain aspects of the lived experience. Results revealed that the psychological state of patients can return to the same level as that of a healthy person despite disease progression and a global pandemic caused by an emerging infectious disease. Among the factors that affected a patient’s psychological state, those specific to the COVID-19 pandemic were found to be closely related to normal interpersonal relationships and the system of care. Based on these results, specific methods of understanding and assisting patients have been proposed.
