Background: Little is known about the intention formation process regarding\nthe use of tracheostomy and invasive ventilation (TIV) in amyotrophic lateral\nsclerosis (ALS) patients in the course of disease progression. Objective: To\nclarify the intention formation process in the use of TIV in ALS patients for\nthe purpose of providing decision-making support. Methods: We conducted\na follow-up study of 14 patients using semi-structured interviews, participant\nobservation, and medical records review. Results: The patients� various intentions\nregarding the use of TIV were formed as their symptoms progressed\n(e.g., declining motor, swallowing, and respiratory functions). Other factors\ninfluencing their decision were their considerations, such as their ability to\ncommunicate after receiving TIV treatment, the degree of support they would\nreceive from professionals after TIV treatment, palliative care for physical\ndistress, value of life after TIV treatment, and to what degree they would be a\nburden on their families. Conclusion: Patients� intentions regarding the use\nof TIV were diverse and changeable. The decision of whether or not to use\nTIV was made out of conviction as well as considering individual experiences\nof symptom progression and quality of life after TIV use.
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