Research has documented the influence of ALS patients families’ attitudes on patients’ decision to accept or reject TIV (tracheostomy with invasive ventilation), a treatment that in many cases will allow them to live long enough to experience locked-in syndrome (LIS); under Japanese law the use of a ventilator cannot be terminated once it is essential to a patient’s survival, so to choose TIV means to choose the possibility of entering a locked-in state. Previous studies have not, however, elucidated the changes in family members’ attitudes that take place after they receive pertinent information about the social systems and services available to them. This study aims to fill this gap by collecting and analyzing patients’ and family members’ narratives. In Japan, about 30% of ALS patients utilize TIV. This rate is much higher than in most other developed countries. Patients’ narratives illuminate the psychological and especially the contextual factors of their decision-making. Many Japanese patients who currently use a ventilator say that their family members encouraged them to prolong their lives through ventilation. These family members have done so because patients are able to use long-term ventilation for only ¥1000 (around $11) per month, and can also access the latest communication devices and round the clock caregiver services in their homes at very low cost. Japanese caregivers who are supported by social systems and services including communication assistance (systems, training methods, funding), empowering factors such as patients’ associations, care provided by people outside the patient’s family, and a public nursing care system are able to encourage patients to decide to use longterm ventilation (provided that they are aware of the possibilities offered by these social systems and services).

中文翻译：

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日本残疾家庭护理系统对ALS患者接受有创通气气管切开术的决定的影响

研究记录了ALS患者家庭的态度对患者决定接受或拒绝TIV（有创通气气管切开术）的影响，这种治疗在许多情况下将使他们的寿命足够长，以经历锁定综合征（LIS）；根据日本法律，一旦对患者的生存至关重要，就不能终止使用呼吸机，因此选择TIV意味着选择进入锁定状态的可能性。但是，以前的研究并未阐明家庭成员在获得有关他们可用的社会制度和服务的相关信息之后发生的态度变化。本研究旨在通过收集和分析患者及其家庭成员的叙述来填补这一空白。在日本，约30％的ALS患者使用TIV。这个比率远高于其他大多数发达国家。患者的叙述阐明了他们决策的心理因素，尤其是情境因素。许多目前使用呼吸机的日本患者说，他们的家人鼓励他们通过呼吸来延长寿命。这些家庭成员之所以这样做，是因为患者每月仅需花费1000日元（约合11美元）即可使用长期通风，并且还可以以非常低的成本使用最新的通信设备并在家中全天候照顾病人。受社会制度和服务支持的日本看护人，包括通讯协助（系统，培训方法，资金），患者协会等赋权因素，患者家庭以外的人提供的护理，