Abstract
Purpose: We used the life-line methodology to elucidate the illness experience studying psychological changes and related factors in ALS patients under TPPV.
Methods: Fifty ALS patients under TPPV participated through questionnaires followed by semi-structured interviews.
Results: The psychological state of all participants deteriorated after onset, but this state persisted in some while others experienced subsequent improvements. Of these, some participants experienced a second deterioration of their psychological state. Positive and negative factors influencing psychological state were grouped into seventeen categories in eight areas, some of which were in opposition to each other. These consisted of the primary area of “physical symptoms and disabilities,” as well as “use of TPPV and associated decisions,” “illness and medical care,” “life prospects,” “personal relationships,” “role performance,” “economic issues,” and “lifestyle issues.” Participants who were able to eliminate or mitigate negative factors while increasing positive factors experienced improvements in their psychological state, while those with significantly increasing negative factors were unable to make improvements even in the presence of new positive factors.
Conclusion: All participants experienced major life breakdowns according to multiple factors following onset. However, some exhibited the process of life-reconstruction as they navigated physical, medical, and social environments. These results suggest concrete measures toward improving quality of life for ALS patients.
