Purpose:This study aims to understand the mental state of Amyotrophic Lateral Sclerosis (ALS) patients living at home, who selected Tracheostomy Positive Pressure Ventilation (TPPV), their views on ALS disease, and their lives.
Method:Semi-structured interviews were conducted with eight ALS patients treated with TPPV. The interview guides asked the question, “How can you accept your disease and sustain your belief?” and their responses were recorded. A verbatim record was created from the recorded data, and its contents were analyzed qualitatively and inductively.
Results:The views of the patients with ALS were extracted as follows: aiming to live with ALS, staying true to themselves because they realize the ephemeral nature of life, realizing deeper family bonds, and their desire for a society where everyone can live equally and comfortably.
Conclusion:ALS patients realize the ephemeral nature of life, and there is no time like the present, and want to regard it as important to deepen their bonds with those around them. In addition, they adopt things necessary in life from their experience, aiming to establish society where they can live in the same way as people with no disability.Patients with ALS can live true to themselves like people without any disability. Understanding the thoughts and values of ALS patients, Medical professionals need to construct together the society which they aim for.
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